Our Life And Such

Negotiations

2011-01-24T21:29:00.000-08:00

When we met with the neurosurgeon the next day, we were honestly expecting the worst. We had somewhat prepared ourselves to hear that the surgeon had decided to go ahead and try the shunt in Nathan's gallbladder, which would require a very invasive surgery, has a high risk of failure, has low odds of success in someone Nathan's size, and is generally a last resort for any shunt patient.

So we were more than surprised when he told us that he actually wanted to go ahead and do a ventriculoatrial (VA) shunt into Nathan's heart. Generally, the VA shunt is the 2nd option for shunt placement after a ventriculoperitoneal (VP) shunt. Unfortunately, because of all of Nathan's heart problems, his cardiologist had always discouraged VA shunts.

First, Nathan suffered from pulmonary hypertension, which was causing his heart already work harder than it should. Second, the general beating motion of his heart had been altered following his heart surgery in October and the patching of his VSD. Third, his tricuspid valve, which had been previously damaged and then miraculously surgically repaired, valve was still experiencing some regurgitation from the hypertension. And fourth, Nathan still had another hole in his heart, this one between the two upper chambers (atria).

So with all of those issues, you can see why Nathan's cardiologist was hesitant to give the go-ahead for a VA shunt. But the neurosurgeon informed us that he had spent much of Thursday afternoon in negotiations with the cardiologist on how best to proceed. He had done what he could to convince the cardiologist that the VA shunt was in Nathan's best interest. Fortunately, the cardiologist agreed.

However, since Nathan still had a hole in his heart, it would pose a considerable danger to his life if the VA shunt were to be placed. Therefore, he strongly recommended that the hole in Nathan's heart be closed, which the neurosurgeon agreed was a good thing.

So now they were running it past us to see what we thought of the whole idea. And honestly, it seemed like a great idea, tons better than a gallbladder shunt! Then when he informed us that they would need to close the hole in Nathan's heart in the Cath Lab, we became somewhat less confident in the idea. After all, the Cath Lab was our arch nemesis.

Decisions, Decisions, Decisions

2011-01-23T20:39:00.000-08:00

I don't know exactly why, but it was becoming very important for me to have a full calendar month of having Nathan at home. Three times now, Nathan had made it to 36 days in a row between hospitals stays. But none of those streaks had encompassed a full calendar month. And this time we had only missed it by one day. But the really bad thing about going into the hospital on the last day of the month is that you're going to miss out on the next month too.

But what was weighing more heavily on our minds was what were we going to do about this shunt problem? To this point our luck had been very, very minimal in trying to find something that worked.

VP Shunt #1 -- Failed
VPL Shunt -- Failed, nearly deadly
VP Shunt #2 -- Infected
VP Shunt #3 -- Failed
Third Ventriculostomy -- Failed

As we've mentioned before, with the failure of the Third Ventriculostomy, our choices of viable shunt placements were now down to what could basically be considered to be "bad" and "worse." And honestly, we were very, very scared and worried. Either way, we were looking at a very invasive surgery that unfortunately had no guarantee of success. I don't know which was more sad and disheartening. The fact that we were facing yet another major surgery or that there was no guarantee that the surgery would work.

So with heavy hearts and an uncertain future, we put our knees on the floor and our trust in the Lord and tried to hope that we could all come up with something that would work.

Missed It By That Much

2010-11-21T19:19:00.000-08:00

Our appointment with the neurosurgeon fell on a Thursday, which just so happened to be the last day of July. As it turned out, Nathan's doctor happened to be in surgery on the day off our appointment. So we met with one of the neurosurgery residents while we waited for Nathan's doctor to finish in the Operating Room. We explained everything that had been going on including the recent Lumbar Puncture and the appearance of the head bubbles. They also took a measurement of his head to see exactly how big it was.

When it turned out that the surgery was taking longer than originally expected, the resident became unsure of what to do. He didn't want to keep us there if he didn't need to, nor did he want to send us home if the surgeon didn't want us to go home. So he decided to call up to the OR to find out what the surgeon wanted done.

Now this is where it gets tricky...and quite entertaining actually!

Neurosurgery is quite delicate. It is BRAIN SURGERY after all! So the resident would leave a message and then the message would get relayed to the surgeon when there was an opportune moment. The surgeon would then send a message back to us, often asking for additional information or further details on Nathan's condition. That message would then be relayed back to the resident who would then tell us.

We would then provide the answers or information that the surgeon had requested to the resident and we would repeat the entire process. Sometimes we were waiting just a few minutes to hear back. Other times we were waiting for 10 or 15 minutes. It all depended on what was going on in the OR.

We were very grateful, though, that the surgeon took the time and attention necessary for his patient, because we would expect nothing less when he would be operating on Nathan.

Finally, when the surgeon had all the information he needed, he sent word back that he wanted to admit Nathan to the hospital. The Third Ventriculostomy just wasn't working like we all had hoped. Nathan's head was just growing too fast. And it was becoming too dangerous. The Lumbar Punctures weren't working as effectively as he had hoped either. And since Nathan had had one about two weeks before, he was hesitant to do another one so soon.

So that left him with no other option but to admit Nathan to the hospital and try to work out another shunt.

We felt that this was unfortunate for a number of reasons. First, we had agreed to the Third Ventriculostomy because there were really no good shunt options left. So that was really scary.

Second, it was the last day of July. And Nathan had never made it through an entire calendar month out of the hospital. So that streak was going to stay in tact. What made that doubly sad was that it also happened to be the 36th day in a row since Nathan was last in the hospital, which mark he had gotten to twice before. So even with all of the good things that had happened and all of the progress that Nathan had made developmentally, he wasn't even able to set a new record for consecutive time at home.

Instead, we were making plans to have Nathan admitted to the hospital and had to start thinking and praying about what kind of shunt to do this time.

Head Bubbles

2010-11-21T16:23:00.000-08:00

In spite of being so underweight and constantly dealing with "head issues," Nathan was really starting to make some great steps developmentally. He still struggled with anything really hard, like sitting up on his own, crawling, standing, or anything else that required major head control. But he was holding toys really well and transferring them between hands and had actually started to jabber quite a bit too, which was really fun.

All in all, though, we were quite pleased with how things were progressing, with the exception of Nathan's head growing again. Despite that fact that he had just had the Lumbar Puncture less than a couple of weeks before, his head was approaching pre-LP size again as the end of the month neared. And most odd was that he started to get "bubbles" appearing in random places on his head. If you look closely, you can see one in this picture near his hairline on the top right side (your left) of his forehead:

Honestly, the bubbles were really freaky. It was almost like the pressure inside his head was so intense that it was looking for whatever avenue it could find to escape, even tiny little fizzures in Nathan's skull. Very scary!

So with not really any other option, we called the neurosurgery department to schedule an appointment. Nathan's surgeon had returned from his teaching expedition in Africa and scheduled us to see him in a couple of days.

Four Words That Make You Think You're a Bad Parent

2010-11-14T21:44:00.000-08:00

In spite of Nathan's recurring head issues, he was finally starting to gain weight! Six months before, when we had brought Nathan home from the NICU, he weighed just over 16 pounds. In the first 5 months home, he hadn't gained more than a pound and a half. The lack of weight gain was primarily due to the fact that he was always sick and throwing up and spending so much time in the hospital.

Now, however, Nathan had finally started to gain weight. As we neared the end of July, Nathan had reached an all-time high, weighing nearly 18 and 1/2 pounds! Needless to say, both of us were really excited that he had finally started gaining significant amounts of weight. For so long, Nathan had just seemed so...well...fragile for want of a better word. He was just so thin and bony. Sometimes, when picking him up, he almost felt somewhat breakable at times. So as I mentioned, we were very, very pleased that he had finally started gaining weight.

Nathan's weight gain was likely due to three things. First, the G-Tube. It sure made feeding Nathan a lot easier and more convenient, and Nathan seemed to enjoy not having the tube going up his nose anymore. Second, his pediatrician had had us raise the calorie content of his formula to a higher concentration. And third, he hadn't been throwing up as much or been in the hospital in the month. So all together, it was a working combination that had helped gain almost as much weight in one month as he had in the previous five.

Unfortunately, Nathan's pediatrician didn't share our same enthusiasm. While he was pleased that Nathan had finally started to gain weight, he was still well, well underweight for his age. This point was driven home to us during our weekly appointment. As we were discussing Nathan's progress (or lack thereof in many areas), the pediatrician mentioned that Nathan was "malnourished."

Now, when I heard the words "your child is malnourished" I just about fell over. Never once did the thought ever cross my mind that Nathan was malnourished. In my head, malnourished was something that described starving children in Africa, the kids I had seen in the 'Feed the Children' commercials growing up, not something to describe my own son.

Never did I ever feel like a worse parent than I did at that moment when I found out that my own child was malnourished. To try and soften the blow a little, I asked if we could say he was "undernourished" instead of "malnourished" because it seemed considerably less harsh. The doctor consented since it would make me feel better, but it didn't change the fact that Nathan was well, well underweight.

Lumbar Puncture #2

2010-11-11T21:37:00.000-08:00

Since Nathan's head size was kind of getting out of control, especially the strange bulge, we decided he needed another Lumbar Puncture (LP) to try and "jump start" the Third Ventriculostomy into draining better again.

For a more thorough review on Lumbar Punctures, you can re-read this blog post.

It had only been about a month since Nathan's last LP, which is not really a lot of time in the big scheme of things. So there were pros and cons to doing it again, especially doing it again so soon.

The good news was that the last one worked so well to stimulate the drainage in Nathan's head, that there was actually quite a visible difference in the before and after head sizes. So we were very optimistic that another LP would have the same 'magical' effect.

The bad news was that Lumbar Punctures can be very painful. And Nathan had been through so much already, that we were really hesitant to subject him to any more painful procedures.

But on the other hand, was an LP every month better than going through shunt after shunt after shunt that didn't work? Especially when there was so much uncertainty surrounding what we would do if the Third Ventriculostomy failed and they had to put in another shunt.

So we called to scheduled an appointment with our neurosurgeon, but it just so happened that he was in Africa on a medical teaching tour. We knew ahead of time that he would be gone, so he arranged for us to be seen by one of his partners if we needed anything while he was away.

Unfortunately, when you see a doctor who is not your regular doctor, the experience isn't always quite as smooth as you'd like or hope it would be. I think we were expecting to roll in, get the LP, and roll out. But, as is probably likely with any new doctor, we had to explain what was going on with Nathan and why we were there. And when we brought up the Lumbar Puncture, it seemed like we sensed a little bit of incredulity like "Why the heck would you want to have your kid get a lumbar puncture?"

I feel like we had to almost pull teeth to try and get him to listen to us. Finally, he had the resident go and read Nathan's file to see what Dr. Riva-Cambrin had said. Fortunately, he had left a note in Nathan's file that said basically "Try a Lumbar Puncture to see if that will kick-start the Third Ventriculostomy."

With that, he was now willing to go ahead with the LP. In hind sight, it's easy to understand his hesitance to go ahead with the LP, but in the moment it was very, very frustrating to feel like we weren't being listened to.

I think in general, that one of -- if not THE -- most frustrating part of dealing with health care professionals is that they often THINK that they KNOW more about the health of your child than you do. Now granted, they do know more about health and medicine than I do, but I know my child better than they do. And it can often be so hard to find a middle ground starting point without some type of frustration, mild or severe. But I digress...for now.

Anyway, in case I haven't mentioned this before, I hate seeing my boy in pain or distress. It hurts me and dang near breaks my heart. And I know that the LP is very uncomfortable and can be very painful, especially to a 10-month old baby! So I politely excused myself and went and hid in the farthest corner of the waiting room.

Meanwhile, Bekah stayed in the exam room with him and sang to him and tried to do the best she could to comfort him. She's good like that. And Nathan has always found her singing comforting and calming, too.

I on the other hand thought that I could hear Nathan crying all the way across the waiting room and down the hall. I don't know if I actually could, but in my mind it was as sure as anything.

After a few minutes, the nurse came out and motioned to me that it was now safe to go back inside. When I got back inside, it was very apparent that Nathan had been crying. So maybe I wasn't imagining it after all! At this point though, he was mostly whimpering instead if crying. Bekah had already put him back in the car seat carrier, and he just looked so sad. So I took his little hand in mine and asked him if he was ready to go home. And in a very whiny and pathetic voice, but very, very clearly, Nathan said: "Yeeeaaaah!"

And so we did.

What's That Strange Bump on Your Head?

2010-11-07T21:07:00.000-08:00

As Nathan's head continued to grow, one of the most bizarre side effects of his situation was an odd bump that started forming at the site of his most recent shunt surgery. In these two pictures you get an idea of how big Nathan's head was actually getting and you can see the bump we're talking about, almost right on top of his head.

When you first looked at it, the bump on Nathan's head looked just like a bump you might get if you hit your head. But Nathan's bump wasn't hard or solid. In fact, it was just....bulgy....for lack of a better word. If you pushed on it, it would go down and be flat for half a second. and then slowly fill back out into the same bubble-shaped bump. But we tried hard not to push on it because every time we did, Nathan would almost instantly throw up.

While we knew that the odds of this actually happening were quite low, we both worried a little that one day the pressure inside his head would get to be too great and the bubble would pop or explode or something. Which was actually a very scary thought, even though the likelihood of it happening was infinitesimally small.

Nonetheless, we decided we should probably take him up to see the neurosurgeon and get another lumbar puncture to see if that would help decrease his inter-cranial pressure and head size again.

"Your Baby Has a Big Head!!!"

2010-11-01T23:20:00.000-07:00

Amid all of our internal emotional and spiritual struggles, Nathan was still having some problems of his own. Most notably, his head was still growing. We had hoped that the Lumbar Puncture would have served to keep the hole in the third ventricle open and draining, but that didn't appear to be the case as Nathan's head continued to expand.

The neurosurgeon recommended that we continue to monitor Nathan's head size an growth, so we continued to take our weekly trips to the pediatrician's office to get his head measured.

Remarkably, Nathan was actually coping really well with his ever-increasing head size. Where previously his eyes would be getting all freaky and he would be throwing up all over the place all the time, he was actually doing quite well. His eyes were staying normal and he was vomiting considerably less than the previous times he was having pressure issues inside his head due to the hydrocephalus. So we were really hopeful...if it wasn't for his head continually growing.

Even though Nathan was coping remarkably well with his situation, we weren't. Me in particular.

Because Nathan's head was continuing to grow, it was playing a big factor in delaying his development. Because it was so big and heavy in relation to the rest of him, he didn't have the strength to hold it up. So he couldn't crawl because he couldn't lift his head up. He couldn't hold it up to sit up. He was able to roll over at this point, but even that was a struggle for him sometimes.

It was also a struggle for us to see him so far behind developmentally. Especially when we would see other babies Nathan's age or younger sitting up, crawling, or even walking. It was hard to not be hurt or envious or even resentful of these other little kids and there normal-sized heads.

Additionally, I was also developing another, somewhat secret, fear. As Nathan was nearing 1 year old, his head shape was becoming more formed and less changeable. My ultimate fear was that his head would continue to get bigger and bigger and then "freeze" in some huge, unhuman shape and that he would either end up looking like "The Brain"

Or that guy from that cheesy superhero movie "Sky High"

Granted, these fears were highly irrational, especially since the neurosurgeon had given us the "maximum growth point" that he was willing to let Nathan get to before taking action. But it didn't help either when one of the little neighborhood girls came up to us after church services one week, took a look at Nathan and said "Your baby has a big head!!!" And all we could do was nod and agree.

But perhaps the hardest part was trying to explain to my family why Nathan's big head was such a big problem. For whatever reason, they just didn't seem to understand why his having a big head was such a big deal. No matter how many times I tried to explain it. The rebuttal was always, "Well, you have a big head."

"Yes, yes," I would reply. " I know I have a big head. But mine has stopped growing. Nathan's hasn't. And until we can get it to stop, it's going to be a big problem."

My Reflections - Part 3

2010-08-31T22:52:00.000-07:00

Now I come to the most interesting part. Thomas had his healing experiences working through his anger and found peace. It was a big relief to him, and should have been for me too. It was a relief for a while, but then before long that changed. I started thinking more about all those things that hadn't bothered me for all those months, and for some idiotic reason that I still don't understand, they started to bother me. I was annoyed that Nathan had been in the hospital for so long with no visits. I was annoyed that I didn't have anyone to confide in or with whom to share my burdens.

And then I was annoyed that I was annoyed. It just added to my feelings of instability that these things hadn't bothered me until Thomas had brought them up. Why didn't I get bothered on my own? Am I so easily swayed? Can't I make up my own mind? Not only did I feel like I had no control over my emotions, I felt like I had no control over my opinions. I was frustrated, and frustrated that I was frustrated, and I didn't know what to do about it. Was this something that, like Thomas, I needed to work through on my own, or did I need to work through this with a therapist or an ecclesiastical leader? Was there someone I should talk to, or did I just need to repent and forgive?

My healing process was a long one. For a long time I just tried to push it aside and ignore it. But it kept cropping back up. I found myself at church unable to listen to what was being said because I was annoyed. I prayed for help to let go of my hurt and irritation, and for help forgiving those I imagined had hurt me. I reminded myself that no one had tried to hurt me, that we had not told anyone that we were hurting. How could I expect that people would meet my needs when they did not know I had any? I was afraid that if I talked about this with someone from church that it would just sound like complaining. I wondered if I just wanted attention, if I enjoyed people telling me how strong I was. Did I just want to be admired? The worst was that I didn't want to talk about this with Thomas. I felt like he had made his peace and I was afraid that if I brought this up then his anger would be rehashed and I did not want him to have to be angry again. I didn't know what to do, so I just kept ignoring my feelings.

Over the next 2 years I talked myself out of being angry and just felt annoyed. The practical side of me told my emotions that they were unreasonable, and that was enough to keep them at bay. I became better friends with some ladies in our area, so I had someone I felt comfortable asking for help when we needed it. And little by little I did heal. I was also able to see that people are not perfect, myself included; that no one had intended to hurt me, or even been aware that I was hurting, and that that was as much my own fault as anyone else's. I learned to look back and be sad that things had not been better, but not feel so hurt anymore. And I decided that I wanted to do what I could so that other people did not have the same experiences we had.

My Reflections - Part 2

2010-08-31T21:11:00.000-07:00

I decided I needed to reach out. Nathan's health was a roller coaster, so the only way I could see to find some stability was to find something else to care about. Not something to care about instead of Nathan, something in addition. I needed to have some other source of validation and comfort and relief.

Of course, finding a way to reach out that did not add to my stress and that would work around my unpredictable schedule was not easy. I started very, very small. In our church the ladies have a friendshipping program. Each lady in a congregation is paired with a companion and assigned 2 or 3 other ladies within the congregation to visit every month to strengthen friendships, to offer comfort, and to bring spiritual uplift. Unfortunately, the companion I had before Nathan was born moved away right after he was born, and I had been unable to connect with my new companion once I started spending all my time in the hospital. And without the support of a companion I just had not been able to motivate myself to visit other ladies since. So, in my newly found desire to serve, that was what I decided to start with; I would visit the ladies I was assigned to visit, with or without a companion. It was a little tough at first and I felt a little awkward, but it gave me a chance to get to know a few new people, and it was very uplifting to my spirits. I was glad I was trying again.

This brings us to the time when Thomas was starting to get really frustrated, and he began to feel the anger he has talked about. This was a hard time at home. Thomas was so frustrated and angry and I really wanted to help him, but I just did not know how. So when we talked about how we were doing and Thomas would talk about his frustration I tried to just be supportive. I listened and agreed that things were hard, agreed that I wished things were different, and on occasion I tried to suggest things to help the situation. When Thomas complained that he did not have friends, I suggested that he try to make some friends, or that we have someone over for dinner, or for games or something. This was not the kind of thing he wanted to hear, and I was not about to press the issue. I wanted to be supportive and loving and calm, hoping to diffuse some of the anger and the tension that came with it. I never felt particularly helpful or effective, but I knew that he knew that I loved him, and that would have to be enough.

It was interesting that all the things that bothered him did not bother me as much. When he talked about what bothered him I could see what he was talking about, and I agreed that things could be better, but somehow I was not frustrated like he was. As I have looked back and thought about it in retrospect I think there are two main reasons for this. One reason I think, is that I was feeling more of that compassion for which Thomas was wishing. If we were at church and someone was going to come over to ask us how things were going, it was likely to be a woman, and therefore she was likely to come speak to me. And if someone came to me at church and asked me how Nathan was and Thomas did not happen to be by me, I might not remember by the end of church to tell him that it had happened. So I probably saw more of our congregation's love and concern than Thomas did, and so I think I wasn't as frustrated. The other reason I touched on a little already. I think I felt a need to try to keep as much peace in our home and in our lives as possible, and I knew that if I were to join in the frustration, it would escalate. I already had so much stress and tension on my own, I did not want to add more. But not sharing Thomas' anger did not keep me from being very worried for him.

My Reflections - Part 1

2010-08-31T20:32:00.000-07:00

Well, now that Thomas has gone through his story, he has asked me to write about what I was feeling and thinking through all of this. So here goes.

Let me try to take you back a couple of months to begin. We were in the middle of Nathan having many shunt problems. He'd been out of the hospital and back in again several times, always for shunt problems, which meant that he was always vomiting while he was home, and he always had surgery when he had to go back to the hospital. I was so fortunate as to have been able to be Nathan's primary care giver at home. I was not working outside of the home, but was able to dedicate myself full-time to taking care of our boy. This was not only what I wanted, but was probably the most practical option for us at the time since the amount of care Nathan needed would have required us to hire a nurse, or something close to that, in order for me to work and I probably would not have made enough to pay for that anyway. But since Nathan did need that degree of care, and I was devoted to that full-time, that was pretty much all I did.

So for about 8 months Nathan had been my biggest, and essentially my only focus. In many ways that is just how it should have been, and I do not regret it at all, but in many ways it was very wearing on me. I was very tired of sitting in the hospital. Being in the hospital is lonely and boring and stressful. But when Nathan was home, he was very often sick. Depending on how close Nathan was to needing another shunt revision, he would throw up as many as 7 or 8 times a day, and each time I had to clean him up, and clean up whatever he'd been lying on, and sometimes clean myself up. And each time I also worried and wondered if he was ok and if we'd be back at the hospital again by the end of the week. I was so stressed out all of the time. When Nathan was really bad I felt like I could not leave the room because I was afraid that he would throw up and choke while I was gone. Being in the hospital meant some of Nathan's care wasn't my responsibility, but it meant a lot of driving, a lot of sitting, and it meant he was too sick to be home. It was all very, very draining.

I started to feel very unstable, like I had no control over my emotions. If Nathan had a good day, I was doing well, but if he threw up a few times, or if we had to go back to the hospital, I was so sad and disappointed that I just plummeted. I was so absorbed in Nathan's life and health that his health determined if I was ok or not. I was on such an emotional roller coaster, I didn't know from one day to the next if I would be walking on clouds or sobbing in the floor. It seemed like I was always on the verge of a major breakdown. It was really hard on Thomas too. He did not know how to help me and he wanted to so much, and he never knew if he was going to come home to find me smiling or crying. I felt so bad for bringing more turmoil and anxiety into our home, but I did not know how to escape the roller coaster.

Noise

2010-08-15T21:05:00.000-07:00

Even though I had found a measure of peace and comfort, I was still feeling a little unsettled. I had gone through the anger. I had gone through the complete despair. And I didn't want to go through any of that again. So the thing that was still so disconcerting to me was that I still felt that so many of my prayers had gone unanswered. Specifically, the ones where I prayed so hard to have a friend, to have someone just want to come over talk and listen and help share the burden.

Having a child who is constantly sick and in the hospital is very tiring -- physically tiring, emotionally tiring, spiritually tiring. In fact, it's down right exhausting at times. And not having more of a resolution was leaving me feeling a little vulnerable to a possible relapse. Not that I wanted to be angry or sad all over again, but I felt that if I wasn't careful that I would be susceptible to a setback.

So instead of praying for "someone," I tried to rely on the Lord, to trust in Him, and to pray for strength and understanding. Fortunately for me, my Heavenly Father was merciful to me and gave me the understanding I sought quicker than I expected. It wasn't but a few days after I had been partly comforted that I was blessed with what I consider to be wonderful understanding and insight.

I was just getting home from work. I happened to be on the phone with my mother. She worried a lot about Nathan and wanted updates on him almost daily. So as a good son I would always try to comply. I would usually wait until I got home, though, so that I could get an update on the day from Bekah before calling her. If I happened to miss a day or two, she would always become anxious. And when she could no longer wait, she would call me.

On this particular day, she happened to call before I had gotten home from work. I was just pulling into the driveway when I answered her call. She asked how her grandson was doing, but I was having a hard time hearing what she was saying. Between all of the cars passing on the street, the people playing outside, the music from the ice cream truck, and me being distracted getting the mail from the mailbox, I had a hard time giving her the attention that she deserved.

And that's when the inspiration struck me: Noise.

I had previously spent many an evening, pouring out my soul to my Heavenly Father. Asking...pleading with Him to inspire someone to come over, to come spend a few minutes visiting with me. And after every single prayer, I always expected a knock on the door or the phone to ring. I really, truly believed that it would work that way. That's how I had been taught. That's what I believed. That's what I expected.

But when there was repeatedly no one at the door and when the phone was repeatedly silent, I began to question if my expectations were too high, or if my beliefs in such miraculous promptings were erroneous, or if maybe I was unworthy of such a blessing.

I've mentioned before that we believe in a very real and a very personal God. One who cares about each of us. One who hears and listens to our prayers. One who wants to bless us. One who wants to answer our prayers. I also believe that very, very frequently Heavenly Father uses others to answer our prayers. And therein lies the potential to have a breakdown in communications.

If God is going to use us as a means of answering the prayers of others, we have to put ourselves in a position to "hear" Him when He communicates with us. But unfortunately, each of us has personal "noise" that either distracts us from giving God the full attention that He deserves; or the noise is too "loud" and makes it hard to hear Him. Both can prevent us from properly listening to the inspiration or promptings that the Lord is trying to give us so that we can be a help or benefit to someone in need.

The "noise" of which I speak can be a variety of things, some of which may include (in no particular order):

our own problems and concerns
we think we are too busy
we think someone else will take care of it for us
someone talks us out of it
laziness
pride
anger
not recognizing the inspiration when it comes
many other things

I came to understand that evening that my Heavenly Father really was desirous to answer my prayers. He was trying to let people know of our needs, but that those he was trying to inspire were distracted by various incarnations of "noise."

I also felt more than a little admonished myself. How often over the last couple of weeks had He been trying to communicate with me and His voice had been drowned out by the noise of my anger? It wasn't until I had rid myself of anger and humbled myself more and remembered in Whom I should trust, that I was ready to receive this glorious inspiration. So I couldn't hold it against anyone else that they had succumbed to noise.

For me, once I had this understanding, I was good. For the first time in a long, long time, I was good inside. My heart and soul felt healed. I understood that my Heavenly Father still loved me. That He wouldn't let me down. That it was on Him that I should rely and put my trust and not anyone else. Everyone else can get distracted by noise. But Heavenly Father is always there, always listening, never distracted.

So that day I made the conscious choice to rely more on my Heavenly Father. To trust Him more. To look to Him more for strength, for hope. And to rely less on those who are so easily distracted by noise, myself included.

Finding a Measure of Peace

2010-08-09T22:27:00.000-07:00

With each step I took away from the chapel, the more I regretted leaving. I had really, really wanted and hoped to speak with someone, to help me feel better.

But at the same time, the further I got away, the more it seemed like staying would have been the wrong decision and that I had made the right choice. If it was me against protocol, I didn't see that I had a chance to win.

Protocol is a very...necessary part of organization. Protocol exists to ensure that there is order. As I've mentioned before, the three gentlemen who are asked to serve in the main administrative positions of the ecclesiastical unit do so on a voluntary basis. Outside of church, they have full-time jobs and families that occupy most of their time. The time they volunteer to other members of the community congregations is taken out of their free time.

So without protocol, it is very easy to imagine people calling them or visiting them at home all the time. So I understand protocol. As I said, protocol is necessary. But sometimes protocol can be very frustrating. Very, very frustrating.

You want to think...hope...believe...that the love of God and love of neighbor would, at least on occasion, trump protocol. So I couldn't help but think that if Jesus was actually here, he would have time to help heal my heavy heart, just like he did for all those people nearly 2,000 years ago.

And I really, really wanted to believe that one of them would have similar compassion and take the time to meet with me, to counsel with me, to advise me, to love me...but I just didn't know for sure. So I wanted to stay, but I guess, in the end, I just believed that protocol would win, and I couldn't take the rejection. So I left and walked home.

And when I got home, I did the only thing left to do: I prayed.

I prayed hard. I poured out my soul to my Father in Heaven. How I felt alone. Abandoned. Hollow. Empty. Disappointed. Sad. How sorry I was that I had gotten so angry. How sorry I was that I felt like I was losing hope, losing faith. I also expressed how grateful I was that, for the most part, I felt like He had always listened to our prayers. To my prayers.

Nathan was still with us. Despite all of the days in the hospital. All of the surgeries. All of the times we had come so close to losing him, he was still with us. And that meant something. It meant something huge.

It meant that there was still reason to hope. We had not been abandoned. We were not alone. God was still with us. He still loved us. And He would continue to be with us and support us through our trials. I could have absolute faith in Him and He would not let us down.

And for the first time in a couple of weeks, I felt good inside again. No anger. Much less sadness. I felt comforted. I felt a measure of peace in my soul. I felt like God had put his arm around me and said "Trust me. You'll be OK."

And I believed I would.

Searching for.......Something Else

2010-08-08T21:38:00.000-07:00

I had hoped that venting all of my anger and frustrations would prove to be therapeutic and cleansing. And in a way, it was. I was relieved to have the anger out of my system. I had also expected that once it was gone that I would quickly return to being happy. But it didn't happen that way.

Instead, I was swept over by a huge tidal wave of sadness and despair that flooded in to fill the giant empty space that had so recently housed my anger. Indeed the sadness and despair filled me up just as much as the anger had. Instead of being fueled by rage, I felt overcome by complete misery and grief. It was like a giant rain cloud of sorrow and melancholy had parked itself inside me and was drowning out my faith and hope.

And honestly, it was worse than the feelings of anger. I felt trapped inside my own sadness and sorrow with no hope of escape, almost like being trapped inside a well with no way to get out.

I was disappointed in myself that I had let the anger get the best of me. I was saddened in my own actions, that I had let the actions, or inactions, of others get to me as much as they did. But mostly I was saddened that I had prayed so hard and so earnestly with all of my heart and with all of the energies of my soul, only to not have my prayers answered.

After counseling with Bekah, I decided that it would be best to try and visit with one of the gentlemen who administrates the larger ecclesiastical unit of which our local congregation is a part. I knew that they were in their offices on Tuesday nights, so the first Tuesday night that came around, I made my way over hoping to seek help, guidance, inspiration...something...anything to help lift the heavy weight of sorrow that was weighing my heart down.

I didn't have an appointment, so I waited until they were almost done with all of their business, hoping to get in for just a few minutes near the end. As they were finishing up, someone came out and asked me how they could help me. I mentioned why I was there and that I was just hoping to speak with someone for a few minutes.

I was very politely informed that what I was doing was "out of protocol" and that "those types of appointments" are usually done by referral from the leaders of the individual congregations. And since I didn't have an appointment it was unlikely that I would get to see anyone, but that he would see what he could do.

So I waited for a few minutes, debating what to do in my head.

Realistically, considering my then lack of trust in my own congregational leader, I didn't see that getting a referral from him was even a possibility. So I considered this my one shot. I understood very well the importance of "protocol," but there are always exceptions aren't there? I didn't know. That I know of, there's no set way of dealing with "exceptions." Each group can deal with it the way that they deem best. So I had no idea what to expect.

But I was already feeling so, so low, that I didn't feel that I could take what I would consider to be a "rejection," if they told me that they couldn't meet with me, even if they meant well and were just following protocol.

So I decided to wait a few more minutes. I felt that the longer I had to wait, the less likely it was going to be that I was going to get an appointment. And as the minutes went by, the less and less hopeful I became. So I decided to start making my way back home. But I decided that I would take my time getting there. It was my way of both being hopeful yet realistic at the same time.

So I first stopped in a commons area, close enough to the offices that they could still find me if they needed to, but one step closer to the door for me. So I paced around for a couple of minutes when someone poked their head in to find me. My heart perked up a little, holding out hope that he would invite me back. But he said that he was still waiting to find out and asked me to just wait for a few more minutes.

In my heart, I wanted to wait a few more minutes. I wanted to wait however long it was necessary. But my head kept telling me that I was going to be disappointed. And I really couldn't take any more disappointment. I just couldn't get over the internal struggle I was having between hoping that someone would take a few minutes to talk with me, and the realization that they might say no.

In the end, I decided that it was better to just go home than to take the chance of suffering additional heartache and disappointment.

That decision hurt so bad that I cried all the way home.

Searching for.......Something, Part 2

2010-08-01T23:21:00.000-07:00

To be honest, I was a little worried about my meeting. From what little I knew about Robb, he seemed like a good guy. I was a little scared to just dump all of my problems on him. I was scared how he would react. But I was most scared that my anger would get the best of me and that I would just end up yelling at him and not get any resolution about my anger.

So I took a few days to think about why I was actually angry. What was it that was causing me to be so mad? As I thought about it, I was able to pinpoint exactly what was bothering me and why it had caused me to become so enraged. That way I was hoping I could accurately (and nicely) express everything that was bothering me without jumping down Robb's throat.

As we greeted each other and shook hands, I sent up a silent but fervent prayer that I would be able to express myself fully and completely while at the same maintaining most of my composure.

After exchanging cordial pleasantries, I could see by the look on his face that I had completely taken him off guard when he asked me how I was doing and my simple but direct reply was "I'm very upset."

After inquiring as to why I was so upset, I told him that I realized that he was fairly new to the neighborhood and to this position and that I hoped that he didn't take anything that I was about to say too personally, but that I had a lot on my mind and in my heart that was making me angry. And then I let it go.

While I wasn't quite yelling, my voice was loud and full of anger.

I recounted our story. How Nathan was now 10 months old and had spent a total of 6 months in the hospital, including his first 4 1/2 months. How during that time no one from the congregation, and in particular the congregational leadership, had ever been up to the hospital to check on Nathan. To see how he was. To see how we were doing.

I asked him if he knew how lonely it was to spend what seemed like all of your time at the hospital, wondering if your child was ever going to be able to live a normal life, or even to spend more than 5 weeks out of the hospital at any given time.

Did he know what it's like to feel like you have to go through all of that alone because either people don't know, or don't care, or they're too busy, or whatever other reason?

Did he know what it's like to feel like your a second-class member of the congregation? Do you have to be in the congregational leadership to experience an outpouring of love? To have people come and visit you in the hospital?

I explained that I understood that it may be inconvenient to have to travel a long distance to see Nathan in the hospital, but is that what we were? Were we an inconvenience?

I said that I know it's an hour to drive up there and an hour to drive back. And if you choose to stay a decent amount of time that's probably another hour. I explained that I realized that 3 hours in a day can be hard to arrange, but finding 3 hours in one day out of 6 months.....no one can do that?

I mentioned that our apartment is only a 5 minute walk away. And still no one could find time to stop by and take a few minutes to sit down with us and find out how we're doing?

Or is it because we come to church services every week that people think we're doing all right? Do we need to stop coming to church in order to have the congregational leadership know that we were having spiritual and emotional needs and struggles? Is that what we had come to?

I don't know how long my tirade went on, but I felt a little better getting everything out there in the open.

I'm sure Robb felt overwhelmed with everything I had just laid on his shoulders. But to me, his reaction will forever be priceless.

He didn't get angry. He didn't tell me how horrible I was for having these feelings. He didn't call me to repent. He never got defensive.

Instead, he just looked me in the eyes and very sincerely apologized and said that I was right. They should have done better. He should have done better. He should have been more involved. He should have done something.

And then he apologized and asked me to forgive him. And promised me that he would do better.

I was in complete awe at the humility of this great man.

His attitude and response completely melted away my anger. I knew that he cared. I knew that he was sorry. And that's exactly what my heart needed that day.

Searching for.......Something, Part 1

2010-08-01T21:11:00.000-07:00

Anger is a lot like a big, noxious weed. It's roots run deep and they can be very hard to pull out. But if you don't do something to get rid of it, it will eventually choke out the good in you, overrun your heart, and leave your soul a barren and destitute wasteland -- a deserted shell of the beautiful oasis it should be.

So I knew that for the good of my family and the good of my soul, I had to rid myself of the anger that raged inside my heart and threatened to destroy me. But I didn't know what or how.

Generally, these types of issues are addressed with the congregational leader. As your ecclesiastical leader, he basically has charge over your spiritual well-being. To give you counsel and advice. But considering the circumstances and my feelings at that time, I didn't trust him and I didn't trust myself with him. So I didn't consider that an option.

But I needed...something. It's hard to put into words exactly what I felt I needed. I needed someone to help share my burdens. I needed someone to care about how I felt. Someone to care about my anger. Someone to care about me enough to let me be angry and not judge me. Just someone to.....understand.

Our local congregation is part of a larger administrative unit composed of similar congregations from around the neighborhood. Three good and honorable and spiritually inclined men oversee the overall function of this bigger unit. Like those asked to serve in leadership positions in the individual congregations, the men are selected from among the members of the local congregations that comprise the larger unit. Likewise also, they are not paid for their service or time, but rather freely donate them as an act of charitable service. They accept the duties and responsibilities of service out of their love for God, their love for their neighbors, and their desire to help and assist them in any way that they can.

These good men and are assisted in the day-to-day administration of the unit by a large number of good men and women whose responsibility it is to teach those in similar leadership roles in the local congregation how to more effectively serve those they are called to lead.

So I considered trying to "go up the chain of command," so to speak, and seek advice and counsel from one of the gentlemen who oversee the larger ecclesiastical unit, but another option presented itself before I could give that a try.

In addition to the main ecclesiastical leaders, each individual congregation also has supplemental leaders that assist in the day-to-day administration of the congregation. The men, the women, the youth, and the children, are all provided with individual group leaders, also selected from among the members of the congregation, to serve as teachers and examples on how to try and live a good life and follow the teachings of the Lord from the Scriptures and the guidelines of the Church from the church leaders. They also volunteer their time as they serve in their positions.

The man who was asked to serve as leader of the group of young, adult men (of which I was a member) was fairly new to the congregation and had only been in his position for a short time. And it just so happened that he wanted to get to know each of us better, what our needs and concerns were, and how he could serve us better.

So here it was! Here was my opportunity! This is what I was looking for. My chance to talk with someone. So I took the first available appointment time to meet with him.

Anger

2010-07-20T20:41:00.000-07:00

Anger is a vile and dangerous beast. It is an evil and deadly monster. It doesn't care for you, but rather wants to destroy you. Anger is a sneaky and tricky poison. It lies to your body and mind and makes them think that being angry feels good and that it is something desirable. And it does this while feasting upon the very goodness in your very soul.

And it was my constant companion. It went with me wherever I went. It burned inside me like a raging inferno. And it made me believe that we were friends.

The truth of the matter is that I was fed up with everything. I was fed up with Nathan being sick all the time. I was fed up with being at the hospital what seemed like all the time. I was fed up worrying how I was going to provide for our family. I was fed up not having any friends around. I was fed up that it felt like no one really, really cared about us. But mostly, I was fed up trying to have faith and have hope that a happy time would come to what felt like was a never-ending bad dream.

I was just tired of everything. And the anger gave me something to look forward to every day. If I couldn't be happy every day, I could be angry every day. If I couldn't have hope every day, I could be angry every day. Anger, it seemed, was a suitable substitute for just about every emotion.

But I don't really like being angry. It's not me. But I couldn't find any other emotion. Just anger. It was all over inside me. And it was wearing me out. It was beating me. It was destroying my soul. And if it wasn't for my wife and my son and the support of a couple of close friends at work, I likely would have given myself up to anger and let it destroy me.

But every night I would come home from work and I would see my boy and how happy he was. Despite all the crap that he had been through and despite how sick he was all the time, he still found some way to be happy.

Honestly, sometimes it seemed like the only two things that Nathan really knew how to do were to be sick and to be happy. He was such a great example to his dad.

In the beginning of my anger, I wanted Bekah to be just as angry as I was. But she wasn't. She couldn't be. She saw what it was doing to me and she knew that she had to be better. And I'm glad she was.

Every night when we would go to bed, she would snuggle in close to me and in a very soft voice say to me "Do you know I love you?" I would sigh and reply that I did. Then she would always say "Do you know that Nathan loves you too?" And I would nod and say yes.

I had the love of the two best people in the world: my wife and my boy. Which made being angry so very, very hard. So I knew that for their sakes, for my sake, for all of us, I had to do something to get rid of the anger.

More Complaining, Part 4

2010-07-18T23:23:00.000-07:00

The battles that you fight within yourself are often times some of the worst. And I was having quite a knock-down, drag-out one within myself.

I was having an incredibly intense struggle trying to make sense of everything that was going on. Fighting both the sadness and heartache that was resulting from feeling that either God wasn't listening to my prayers or that I wasn't being earnest or fervent enough as I prayed as well as the anger from their lack of being answered.

Some days I felt that I was being overcome by despair. Other days I felt like I was getting a handle on my anger. And then it happened.

At church services one Sunday, we were all informed that our congregation's leader had been hit by a car while he was out riding his bicycle one evening during the week and was unable to attend services that day. Thankfully, he was OK. Apparently he was injured quite badly, but the way it was brought to our attention, it seemed like nothing more than a few scrapes, scratches, and bruises and a lot of soreness. And despite the animosity I felt towards him, I was glad he was OK. We would never wish anything bad to come upon him, despite the lack of support we felt.

The following Sunday, he was able to return to church and recounted a little of his accident to the congregation. When he got to the part about how wonderful it was to have such great men that help him at church show up at the hospital to check on him and offer him support and comfort and a blessing, I honestly almost lost it right there in church. The anger that I had been battling for so many weeks and months finally consumed me. I felt like a volcano at the point of eruption.

I again thought of all the time Nathan had spent in the hospital and how none of them had ever come to see him. How we had never had such support and comfort. How we had asked him so many months before, when Nathan was going to have the very dangerous and scary procedure to fix the hole in his heart, to come up to the hospital to help give Nathan a blessing. And how he was too busy. And then when Nathan came, literally, within a few millimeters of dying that day. And he still didn't bother to take the time to come to the hospital.

And I thought of the other times Nathan had come so close to dying. And still nothing. All the time we had spent at the hospital. All the surgeries. All the time traveling between home and the hospital. All the fears. All the worries. All the.....everything. And at the same time all the nothing. No hospital visits. No visits to our home. No calls to stop by his office for a chat. Only an occasional brief handshake and a 20-second "How's Nathan doing?" in passing as he was being mobbed by other members of the congregation as they paid their tithes and offerings.

And yet for some reason, up to this point I was still willing to give him the benefit of the doubt. I still believed, or at least I wanted to believe, that he would at some point do SOMETHING! But now those hopes were gone. Now I expected nothing from him. Now I didn't even want to look at him. Didn't even want to go near him.

And as for my internal battle, Anger had just taken a commanding lead.

More Complaining, Part 3

2010-07-15T22:00:00.000-07:00

It's been really hard trying to figure out how to start this post. I know what I want to say, but putting it all together has been rather hard. That being said, here goes...

We believe in a very real God. We believe he is an actual being, not just the Supreme Creator and Absolute Ruler, out there governing universe upon universe, but also our Eternal Father in Heaven, who cares about, loves, and has concern for each one of us.

If we pray, He listens. If we cry, He notices. If we hurt, He desires to heal and console us. Always wanting us to do and be good, but never forcing us to.

We believe that everyone, each one of us, is entitled to inspiration from God to try and lead the best life they can. We also believe that the leaders of the church we attend, including the local leaders, are entitled to an extra portion of God's inspiration, in order to be able to help those under their watch.

As Nathan continued to have repeated health problems, in particular with the shunt, it was so very, very hard to be optimistic, to have hope, to have faith that the day would arrive that he would just be healthy. With each surgery, we would do the best we could to pray and then hope that God would be merciful to Nathan and to us and grant that this would be Nathan's last hospital stay.

And each time Nathan was readmitted to the hospital was such a devastating blow. We would plead for the strength to endure and implore God that he would continue to have mercy on Nathan and grant him health and hope again that it would be the last hospital stay.

But it seemed that, at least for me, each time Nathan was readmitted to the hospital, my pleadings with God for him became more earnest and more sincere, but my hope that he would ever actually be healthy was going lower and lower. And I fully realize how paradoxical that is. But spiritually, I was really taking a beating. So much in fact that Bekah was really, really worried about me.

I worried too. But I really didn't know what to do about it, other than pray. So in addition to praying for Nathan and Bekah all the time, I prayed a lot that God would inspire someone to know how I was feeling and that they would check on me. In particular, I was hoping that someone from the congregational leadership would stop by. But it just wasn't happening.

Despite Nathan's repeated health problems and consistent hospitalizations, we felt a great sense of inaction on the part of our congregational leadership. In the 10 months Nathan had been alive, no one from the leadership had ever been to our house to check on us to see how we were doing. And to make it worse, no one had ever made the trip to the hospital during the entire 6 months Nathan had spent in the hospital. Not once. Never. Not even for a minute.

And each day that "nothing" happened would just make me more and more and more angry and upset. But each night I would continue to plead and beg God that someone from the leadership would call or stop by or do something. But each day I would just become more disappointed, more angry. and more spiritually beat up.

More Complaining, Part 2

2010-07-03T21:16:00.000-07:00

A lot of things weighed heavily on my mind during this time. Nathan's health and Bekah's well-being, of course, were always at the top of the list. It was emotionally and physically draining living the roller coaster of a life we had been living. We did the best we could to comfort, console, and uplift each other through all of the hard times.

I don't know how I would have made it through everything with even a partial bit of sanity if it wasn't for Bekah. And hopefully she would say the same about me.

But there were many, many nights when we would lie in bed and talk about how we were doing and how things were going and what we could do to help and support each other. And the one thing that would repeatedly come up was that we didn't have any friends. We had no one to talk to and share our burdens with, other than each other.

Both of our immediate families lived hundreds of miles away, so it was hard for them to be here. I did have some extended family in the area, but they never called or stopped by to visit And all of our good, close friends also lived far away. So we were really hoping to rely on the members of our congregation for support. That is why we had decided to attend services with our local congregation rather than the services at the hospital.

But at this point, I had come to regret that decision.

What I most wanted was a friend. Someone to come over to our house, sit down, talk to us, and really see how we were doing. But the most we ever got was a 2-minute "How's your son?" in between meetings at Church. Occasionally, we'd get a "We're praying for you." Which only served to upset me more.

As Nathan kept being sick, one of the things I would routinely pray for was for someone to come over and to just be a friend. I don't know how to express properly the earnestness and fervor with which I prayed night after night after night. But that particular prayer always went unanswered.

Occasionally, I would offer up some sort of compromise prayer and tell God that I was willing to accept a phone call in place of a visit, but the phone never rang either.

To say the least, it was very disheartening.

But perhaps the most frustrating and upsetting part was the complete lack of action on the part of the leaders of our congregation.

More Complaining, Part 1

2010-07-03T18:16:00.000-07:00

On July 5, Nathan turned 10 months old. And for the most part, it had been a pretty brutal 10 months.

Nathan's stay in the hospital for the G-Tube surgery was his 7th different stay in the hospital and brought his total time in the hospital to 181 days, or in simpler terms, 6 months. That meant that his time out of the hospital was 4 months, or 123 days.

With each hospitalization, we kept trying to be hopeful and optimistic that it would be the last one, and that we could enjoy more than just a few days or weeks with Nathan at home. Up to this point, the longest consecutive time that he had spent at home was 36 days, which mark he had reached twice. In particular, it was extremely frustrating that we weren't making any progress. In the 2 1/2 months since I had started counting "days in" the hospital versus "days out" of the hospital, the days in were still 2 months more than the days out. In other words, we weren't gaining any time.

So as much as we tried to have hope and believe that each hospital stay would be the last, with each subsequent hospitalization, it was becoming harder and harder to hold on to that hope. Specifically, it was hard because we felt like we had to do it all on our own.

When Nathan was first born, we had made the decision to spend most of Sundays at home so that we could attend our local congregation, instead of attending the services at the hospital. My initial thought behind that was so that we could benefit from the support and fellowship from the other members of the congregation.

But 10 months later, I was regretting that decision.

We attend a church with a lay ministry. All of the leadership and teaching positions are filled by members of the local congregation. Every so often, the positions are rotated through, so that one person doesn't have the burden of responsibility for their whole life and to give others the opportunity to serve as well.

So, since those who serve in leadership positions are your neighbors (or at least live generally in close proximity), it is commonly believed and accepted that they will be interested in the happenings of your life. And during particularly hard and worrisome times, it is expected that they will be especially mindful of you and your situation and do what they can to comfort and help you.

So in my head, maybe I had envisioned or idealized things happening entirely different than they actually did. And that's probably the reason it caused me so much stress and anger.

Nathan, Dad, and Grandma

2010-06-27T21:36:00.000-07:00

A couple of days after Nathan was released from the hospital following the G-Tube surgery, Bekah flew off to California for her sisters wedding, leaving me home alone with Nathan. Fortunately, my mom was able to come and spend a few days with us while Bekah was gone. I like to think it was for moral support, but in reality she would probably say that it was for her to have some good, quality, bonding time with her grandson. But no matter what her reasoning, I was very glad to have the help and support.

Having Bekah gone for a few days was very eye-opening. With her gone, it was up to me to make sure that Nathan got all of his feedings on time and that he got all his meds and anything else that was part of his daily routine, including changing the dressing around his brand new G-Tube, which needed to be done twice a day.

For those that know me, I tend toward the squeamish. Something that I inherited from my mother. So when Bekah was at home, she would usually change the dressing while I distracted Nathan. The skin around the stomy was still quite tender. So when we would change the dressing and clean around it, it was slightly painful and somewhat uncomfortable for Nathan. So I would try to distract him and get him to focus on something fun or entertaining instead of getting his dressing changed.

But with Bekah gone, it now fell to me to change the dressing and for Grandma to distract Nathan, which she was quite good at. In fact, she did her very best to focus all of her attention on Nathan so as not to look at the G-Tube site! And we had to do it twice a day, so Grandma was quite the trooper, having to cope with probably more than she had bargained for when she agreed to come stay with us while Bekah was gone.

But not everything was hard work for all of us. There was time for play as well. Nathan got to take his first real trip to some place other than a hospital, doctor's office, or church when the 3 of us took an evening trip to the grocery store.

Mostly, though, we just stayed home and Grandma got to dote on Nathan all day. She would sing him songs and tell him stories and tell him about all the fun things that we would all do when he was older and healthier and stronger. I think it was a good experience for both of them.

I also got to have some good quality alone time with Nathan. Just in case there were any issues at night, I stayed in Nathan's room and let Grandma have our room. That way I would be right there should anything happen.

Fortunately, nothing out of the ordinary happened. But Nathan did like to wake up earlier than I wanted him to, so on those mornings I would get him out of his crib and snuggle with him on the guest bed. And it wouldn't take long before he would fall back asleep for another hour or two. I really liked those early morning hours.

As much fun as we had with Mom gone, though, we were happy to have her back home again. And she had missed us too.

Learning to Care for the G-Tube

2010-06-23T20:11:00.000-07:00

The G-Tube surgery was remarkably quick. And according to Dr. Scaife, it went very, very well. We weren't overly concerned about this surgery, but it's always a relief to hear the surgeon say that everything went well.

Following surgery, we made our way to Nathan's room in the Infant Unit, where he would spend a couple of days recovering and where we would learn how to care for the G-Tube.

As much as we had been through and seen, you would think that we would have been prepared for the giant tube sticking out of Nathan's tummy. But for some reason, it was still somewhat of a shock to see.

The stomach and abdomen will usually heal in about a week. To prevent against infection and other problems, the dressing around the G-Tube needs to be changed twice a day for the first two weeks. It's also important to make sure the area around the stomy is cleaned each time you change the dressing as well.

Following the surgery, they started Nathan on clear fluid and ran his feedings really, really slowly at first. As he would tolerate it, they would increase the rate and eventually transitioned over to formula.

In addition, we were also taught how to care for the skin around the tube, how to spot signs and symptoms of infection, what to do if the tube gets pulled out, signs and symptoms of blockage, how to feed through the tube, how to empty the stomach through the tube, how to hide the tube safely under clothing, and what normal activities can be continued.

It was a lot to learn, so we were glad we had a couple of days to watch and the nurses even had us help change the dressing a couple of times so that we would know how to do it when we got back home.

But perhaps the most pleasant aspect of Nathan's new G-Tube was the fact that we could now see more of his face! For probably over 8 months, Nathan had had the NG Tube up his nose and taped to his face. And now that it was gone, it was nice to look at his cute little face, even though he still had the oxygen cannulas in his nose.

The Gastrostomy Tube

2010-06-22T21:02:00.000-07:00

A gastrostomy is a surgical opening through the abdominal wall into the stomach for the placement of a feeding tube.

There are a couple of ways that a gastrostomy can be made. One is by an incision through the abdominal wall (the layer of soft tissue and muscle that covers the stomach) from just below the ribs to just above the belly button. The second is called a percutaneous endoscopic gastrostomy (PEG) and uses an endoscope to help the surgeon poke a hole through the abdominal wall into the stomach.

Because of all of the scars on Nathan's abdomen from all of his previous surgeries, the surgeon preferred to do a PEG placement instead of the surgical placement. A PEG is considerably less invasive than surgical placement as well.

To place a PEG, the surgeon passes an endoscope, a long, slender tube with a light and a video camera on the end, through the mouth and down the esophagus into the stomach. The surgeon can then look through the tube and see the inside of the stomach.

Once the endoscope is in place, the light from the endoscope is visible on the outside of the abdomen. The surgeon then pushes a hollow needle into the "light" on the skin and the abdominal wall and into the stomach. A wire is then threaded through the needle into the stomach.

When the surgeon is able to see the end of the wire with the endoscope, he will grab it with a tool on the end of the endoscope and pull it up the esophagus and out the mouth. A soft, silicone tube is then attached to the wire and then pulled down into the stomach and out through the opening in the abdominal wall. A small dome-like device on the end of the tube prevents it from pulling the stomach out the opening.

A small bolster is attached to the part of the tube next to the skin to hold it in place.

You Mean They Actually Schedule These Things?

2010-06-15T10:49:00.000-07:00

Friday morning we received a call from a very nice lady at Dr. Scaife's office. She was calling to remind us of Nathan's surgery Monday morning and as well as to give us instructions, such as the last time Nathan should eat before surgery.

She also told us where we would need to go to check in. Which was actually beneficial to us because for all of the surgeries that Nathan had had (and there had been a lot!), none of them had ever been as an out-patient. They had all been done as an in-patient. So this was something entirely foreign to us. Which considering how "experienced" we thought we were, was somewhat nice to remind us that we hadn't "been through it all."

It reminded us of a couple of months before when we had met with Dr. Scaife to discuss Nathan getting the feeding tube. After he had explained the procedure to us, he had us meet with the receptionist to schedule the surgery. Our first thought was, "People actually schedule these things?"

Which, when you think about it, makes complete sense. But when you've never been through that process before, it was a complete shocker. I don't even know what we were thinking and or expecting in regards to the surgery. Most likely that they would admit Nathan and do the surgery in the next day or two, since that's what had always happened.

The receptionist informed us that Dr. Scaife's earliest appointment available was nearly 3 months from the date of our appointment. Three months? Not only was it a shock that you had to schedule a surgery, it was an even bigger shock that the earliest appointment was nearly three months away! Who schedules surgery appointments three months in advance?

Apparently most people do. And so we did. And now the day was finally upon us.

Finally Getting Rid of the NG Tube

2010-06-13T22:18:00.000-07:00

Nathan was released from the hospital just a couple of days following the Lumbar Puncture. It happened to be a Thursday. As it turns out, he was scheduled to be back in the hospital the following Monday for G-Tube placement.

We had scheduled the surgery nearly three months earlier, long before Nathan had had continuous shunt problems. And we were more than a little worried that this most recent hospitalization would be cause to postpone the surgery. Which would have been highly, highly disappointing.

We had been looking forward to this surgery for quite some time. The NG tube had become quite a annoyance to both of us. It was frequently getting snagged on things, and Bekah had accidentally pulled it out a time or two when putting Nathan down to nap in his crib.

In addition, it was a pain to replace. We had to bundle Nathan up in a blanket to keep him from moving around as much as we could. Then I had to hold his head straight while Bekah worked the tube up his nose and down his throat and into his stomach. Once in, we had to check to make sure it was in the right place. And this was supposed to be done every 30 days.

Also, Nathan had recently discovered the tape on his cheek that was holding the tube in place. And he loved to pick at it. So we were frequently taping and re-taping the tube to make sure it stayed in place. Which was also quite the adventure. One afternoon, I was sitting on the couch and looked down at Nathan who was happily laying/sitting in his bouncy chair, when I noticed that he had gotten the tape loose and the tube was starting to eek its way out of his nose.

With stealthy jungle cat-like reflexes, I launched myself from the couch and across the room to where Nathan was. Accompanied by a loud "Noooooooo!" I quickly placed my hand on Nathan's cheek to hold the tube in place while I clamored for Bekah to get more tape. Fortunately we were able to avert a "major disaster" that time.

All in all, it was one of the worst things we had to do in caring for Nathan. And he hated it too. All the crying and gagging. Poor kid. Poor parents. I guess one of the only pluses of being at the hospital so much was being able to have the nurse replace the tube for us. And you better believe that we requested it every time we were in the hospital!

So it was a big relief when Dr. Riva-Cambrin gave the go ahead for the G-Tube surgery in a few days.

Trying to Hope

2010-06-10T21:06:00.000-07:00

The LP seemed to work wonders for Nathan. It didn't take very long to see that it had worked to relieve some of the pressures inside his head. His eyes were no longer sunsetting and his head looked a lot less bulgy. He was cranky for a while afterward, but it looked like it was going to work. At least we were trying to hope it would.

The fact was, we felt very much that we were running really low on hope. Nathan had been in the hospital at least one day of every month since he had been born. And we had been battling this &$^%@! hydrocephalus for over 7 months. And every time we thought we could turn the corner on it, it would reach out its long arms and yank us back.

Each time we tried something new, we really, really, really wanted to believe it was the one that was going to work. We tried so hard to not doubt and to not be skeptical. But instead, to have hope and have faith and believe that at some point we would come to the end of this trial and that Nathan would have the opportunity to live a healthy life out of the hospital .

The Lumbar Puncture

2010-06-09T22:55:00.000-07:00

A Lumbar Puncture, also known as a spinal tap or by the initials LP, is a procedure used to collect cerebrospinal fluid from the spine.

For the procedure, a spinal needle is inserted into the lower part of the spinal column, usually between the 3rd and 4th or 4th and 5th lumbar vertebrae in the lower spine.

In order to properly place the needle, it is extremely important to get the patient in the proper position. The spine must be curved in order to allow as much space as possible between the lower vertebrae for the doctor to insert the needle. Generally, the patient is laid on their side with their knees bent. The head is bowed forward with the chin down so that the neck is bent.

The area around the lower back is then disinfected and prepared using an antiseptic solution, in order to prevent infection. The location of the LP is then determined and a local anesthetic is given under the skin and then injected along the intended patch of the spinal needle in order to minimize any pain.

The doctor then inserts the spinal needle, which is thin and hollow, into the space between the two vertebrae in the lower back and slowly advances it towards the spine. Once the needle reaches the spinal canal, a steady flow of CSF will begin to fill the needle.

At this point, the doctor can measure the pressures in the ventricles in the brain and draw fluid for laboratory analysis if needed.

In Nathan's case, the doctor was going to withdraw enough fluid to "kick start" the ETV into working again. By withdrawing the fluid from near the base of the spine, the intent of the LP was to "pull" the fluid down from the ventricles, thereby "forcing" the hole open and the CSF to go through it.

Can You Call It "Shunt Malfunction" If There's No Shunt?

2010-06-09T20:42:00.000-07:00

We considered it a small victory when we made it through the weekend. But we knew that it would be a short-lived victory Nathan was still vomiting and his eyes had begun sunsetting again. Both sure signs that Nathan was having what we would normally have called a "shunt malfunction." But since he didn't have a shunt, it was obvious that there was a problem with the ETV.

So Monday we were headed back up to Primary Children's.

Nathan was readmitted again, partially to get him re-hydrated and partially to figure out why the ETV wasn't working. It had just barely been over 2 weeks since the ETV surgery, so it was difficult for the surgeon to hypothesize exactly what the problem may have been. His initial guess was that it was most likely that the hole he had poked in the floor of the Third Ventricle had closed over. But he wouldn't be able to tell without an MRI.

If the hole was closed, his recommendation was to go in and reopen it. If it was still open, he would try to coax it into draining better.

The MRI revealed that the hole was still open. So in order to coax the ETV into draining, Dr. Riva-Cambrin was going to perform a Lumbar Puncture on Nathan.

Battling Dehydration

2010-06-08T21:55:00.000-07:00

As Nathan was getting over the pneumonia, our hopes were still high that the ETV was still working. Severe vomiting was usually one of signs that Nathan was having neurological issues. But we chalked up the problems this time to the pneumonia.

But as he started to get over the pneumonia, the vomiting didn't get any better. In fact, it started to get worse. So we took him in to the pediatrician who recommended we take him to get a CT to check what was going on in his head.

The CT didn't show any major changes from his last CT following the ETV, so they sent us back home after scheduling a follow-up appointment with Dr. Riva-Cambrin the next week.

But that night, Nathan was still throwing up everything we tried to give him. Since he really hadn't been able to keep anything down all day, we started to get worried that he was dehydrated. So we headed off to the local ER.

There they inserted an IV an got some fluids going to get his hydration level up. They ran some labs that came back showing that Nathan was partially dehydrated, but nothing too severe. So after a few hours they sent us back home.

To help us make it through the night, I went out and bought some pedialyte (pediatric electrolyte drink) so that we could give it to Nathan through his feeding pump and try to keep him as hydrated as best we could through the night. Eventually, we got a system worked out and the vomiting stopped.

By morning, he was doing considerably better and we were able to transition him from pedialyte to formula the next morning. We kept him on a slow, continuous feed throughout the day, which was a pain, but it was considerably better than having him throw up constantly.

Cough, Cough, Pneumonia

2010-06-01T20:58:00.000-07:00

Nathan was released from the hospital following the ETV on June 2nd. That brought his totals to 156 days in the hospital and 109 days out of the hospital.

We were trying to be really hopefully with this procedure. After all, not having a shunt is what we had prayed about nearly 6 months before when we first started dealing with hydrocephalus and shunts. But at the same time, all of our previous bad experiences had made us somewhat paranoid looking for signs of drainage problems or anything else that would indicate that the ETV was not working.

But after a couple of weeks, Nathan started to show signs of possible problems. So we took him in to the pediatrician and it turned out that he had pneumonia! Which was not an issue with the ETV, but it still wasn't pleasant.

We started him on medication, but the pneumonia caused Nathan to develop a really nasty cough. And when he would cough, he would usually cough so hard that it would cause him to gag which would then cause him to throw up. And he coughed a lot! We went through burp rag after burp rag after burp rag. Which meant that we were doing Nathan's laundry every couple of days or so.

We were doing the best we could to keep him hydrated and everything else we could to keep him out of the hospital. We were especially worried through a stretch of a couple of days where he was throwing up A LOT.

But the worst of it came one night during the middle of his sickness. Nathan had woken up about 3am or so. Bekah was in changing his diaper when he threw up. While she was trying to clean him up and change his clothes, he was wanting to be picked up and held and comforted. Then when she wasn't able to pick him up as quickly as he wanted, he got more upset and threw up several more times.

We were really, really worried at that point, so I gave Nathan a blessing. Within a little while he had calmed down and was soon asleep.

The following days and nights were each successively better and his cough started to clear up as well. Which was a big relief to us since Nathan was scheduled to be getting a G-Tube towards the end of the month.

Going Ahead with the ETV

2010-05-30T21:14:00.000-07:00

We've mentioned many times in regards to Nathan's hydrocephalus and the consistent shunt failures that we were running out of good options.

To better illustrate that point and to help everyone get a better picture of the position we were in, Dr. Riva-Cambrin informed us that the likelihood of the ETV working was only about 20%. That meant that there was an 80% chance that it wouldn't work.

Can you imagine that? The best option you have in front of you only has a 20% chance that it's going to fix the problem.

As is custom, they scheduled Nathan for surgery the next day, since it is better to have him on the schedule and not need it than to not have him on there and try to fit him in. Then we went home to discuss it and see if this is what we wanted to do.

That night, we talked a lot and prayed a lot and decided that this really was the best option available to us.

So the next day, they took Nathan for an MRI to get a good look inside his head and to make sure that there was no anatomical reason to not do the ETV. With the MRI results looking promising, they took Nathan into surgery.

The surgery went really well and Dr. Riva-Cambrin was really pleased. With the ETV, there was no need for the shunt. So that was removed. But unfortunately, none of us had any control over how Nathan's body would respond to the ETV. A CT the next day showed that the ETV was working, so it was very promising.

But as with all of the other attempts to fix it, only time was going to tell.

The Third Ventriculostomy

2010-05-29T22:31:00.000-07:00

Inside your brain, there are 4 ventricles. They consist of two lateral ventricles, the third ventricle, and the fourth ventricle. The ventricles are filled with cerebrospinal fluid (CSF), which bathes and cushions and helps to protect the brain inside the skull.

The two lateral ventricles are relatively large and C-shaped. There is one in each hemisphere of the brain. They are connected to the third ventricle by the foramina of Monro. The third ventricle is in the midline of the brain and is connected to the fourth ventricle by the aqueduct of Sylvius. The aqueduct of Sylvius is very small and can be easily blocked, and thus is one of the primary causes of hydrocephalus. In fact it is the location of the blockage that caused Nathan's hydrocephalus.

The fourth ventricle is also continuous with the central canal of the upper end of the spinal cord. It provides CSF to the spinal column to help bathe and cushion the inside surface of the spinal cord. The CSF in the spinal cord goes all the way down to the lumbar cistern near the bottom of the spinal cord.

A third ventriculostomy, sometimes referred to as an endoscopic third ventriculostomy (or ETV), is a surgical procedure that creates a bypass for the CSF around the blockage in the aqueduct of Sylvius and thus eliminates the need for a shunt.

Endoscopic means that the surgery is performed with the use of an endoscope, a thin tube that has a strong light, a powerful magnifying lens, and a passage through which tiny instruments can be passed. Third ventriculostomy refers to the area where the bypass is made, in other words, through the thin membrane in the bottom of the third ventricle.

The CSF may then flow through the new opening to the normal fluid chambers below the base of the brain. From there it can then be absorbed into the bloodstream like normal.

The New Plan

2010-05-27T21:25:00.000-07:00

Once Memorial Day had passed, we met with Dr. Riva-Cambrin again to discuss our options.

Following another heart echo, Nathan's cardiologist once again stressed that his little heart was just not ready to handle a VA shunt. So that one was still out.

Dr. Riva-Cambin mentioned doing another VPL shunt, but on the right side of the chest this time. Considering how scary and near-deadly the last VPL shunt was, we quickly shot down that idea as adamantly as we could.

I brought up my idea for the "branching shunt" and asked if anything like that had ever been attempted before. Dr. Riva-Cambrin said that to his knowledge it hadn't, but that he would consider it and if he used it he would write it up in a medical journal and name it after us!

At the end of our meeting, he let us know that the next day in the morning he would be meeting with all of his colleagues in the neurosurgery department to discuss Nathan's situation and to see if any of them had any ideas as well. Then he would let us know the direction he felt we should take.

So the following day, we received a message from Dr. Riva-Cambrin letting us know one of his colleagues had suggested doing a procedure called a Third Venticulostomy and that he would be in later to explain it to us.

Trying to Come Up With a New Plan...Again

2010-05-26T22:28:00.000-07:00

The weekend Nathan was admitted to the hospital happened to be the Friday of Memorial Day Weekend. So we had a really, really long time to think about Nathan's shunt problems. Which was both good and bad.

It was hard having Nathan in the hospital again. And it was especially hard having him with an EVD again. But most of all it was particularly hard not having a plan on what to do next to finally take care of these blasted shunt problems.

At the same time, though, it was nice to have the extra time to really, really think about things. And there was a lot to think about. And some of it was heavy stuff to think about, too.

Having the shunt fail again was completely devastating. This shunt was supposed to work. This was "the golden shunt." Since we had previously exhausted all of our good options, we were at a complete loss of what to do next.

When we met with Dr. Walker, he mentioned a ventriculocholocystic, or gall bladder, shunt. They are quite rare, and Dr. Walker said that he had never done one in anyone as small as Nathan before. And when you factor in how many procedures Dr. Walker has done, that is making quite a statement. And throw in the fact that it would likely be very, very dangerous, we were quick to put that one near the bottom of the list.

He also mentioned a ventriculo-ureteral shunt, or placing the shunt into the ureter, the muscular tube that connects the kidneys to the bladder. You don't have to worry about absorption with this type of shunt. Instead, the patient just pees off the excess fluid. But, especially in someone as young as Nathan, you would have to watch electrolyte levels due to all of the urination. So maybe a better option, but still not a great option.

All of this weighed heavily on our minds and spirits. We weren't really worried that Nathan was going to die, but rather the quality of life he was going to have. Was he destined to be stuck in a hospital room draining into a bag forever? Would we ever get to have him at home for more than just a few weeks? These were all questions we didn't have answers to.

So in an effort to seek some type of spiritual guidance or inspiration, Bekah and I went together to our church's highest place of worship. There, we were reminded of the bonds that we share with each other and with our son. And that he will always be our son in this life and in the next. We remembered the blessings and promises that the Lord has promised to the faithful. It was nice to regain perspective, have a quiet place to think and pray, and be able to spend a little time together as away from our problems as we could get for about an hour or so.

We also decided to spend the weekend brainstorming as many ideas as we could that might be helpful to our neurosurgeon.

First and foremost, we wanted the cardiologist to perform another echo on Nathan's heart to see if there was any improvement that would permit the placement of a VA shunt.

Personally, I came up with what I considered a great idea that I called a "branching shunt" (check out the diagram below):

Our biggest issue with the shunts so far had been Nathan's inability to absorb the CSF. Once his body had absorbed all that it could, it would just build up until the area was full and cause the shunt to back-up and stop working. So under my idea, if the distal end of the shunt were to drain into two separate places, if one got full, it could drain into the other. And then hopefully, before that spot got full, space would empty up in the other spot. And it could just drain back and forth like that forever.

And those two things were pretty much all that we could come up with. So we also started praying that the surgeon or one of his colleagues could receive inspiration on something that would help Nathan and give him the best chance to have a normal life.

To us it didn't matter who got the epiphany, the revelation, the inspiration, or whatever you want to call it. Just as long as someone got it and that Nathan would benefit from it. That's all that mattered.

Back at the Hospital

2010-05-17T17:50:00.000-07:00

It didn’t take very long before we realized that we weren’t going to make it to clinic the next week. And since it was the weekend and since we were tired of being in emergent situations, we decided to go ahead and make an appointment with the neurosurgery department so that someone could check Nathan over.

When we got there, they took a bunch of X-rays, but couldn’t see anything wrong. So the most likely scenario was that the shunt was blocked…again. So Nathan was readmitted to the hospital for the 5^th time.

Since Dr. Riva-Cambrin was out of town, Dr. Marion Walker was the one who would be operating on Nathan. Dr. Walker is somewhat of a legend at Primary Children’s, having been there for over 25 years and having performed thousands upon thousands of neurosurgical procedures. Really, there is no one you’d want operating on your child more than Dr. Walker.

The surgery was surprisingly quicker than we had expected. Dr. Walker re-emerged from the OR after what couldn’t have been more than a half an hour. He told us that Nathan’s tummy was just full of fluid and that that was the reason for the blockage. So he had inserted an EVD to drain the fluid while we figured out what to do about the shunt.

Since we had already dealt with an EVD once, we weren’t really excited about doing it again. But when we finally got to see Nathan again after surgery, we discovered one of the reasons why Dr. Walker is a legend.

Instead of inserting the EVD into Nathan’s head, he put it directly into Nathan’s stomach. I thought it was just pure genius. He limited the amount of surgery that Nathan would have to go through at that time, but produced the same results. We were very, very impressed to say the least.

But now we back to the same old question: what are we going to do with this shunt? And unfortunately, all of the good answers were already taken.

Seeking a Spiritual Uplift

2010-05-13T19:19:00.000-07:00

The news of Nathan's most recent shunt failure was completely devastating to us. Especially since the previous 2 weeks had been absolutely wonderful. And with the uncertainty of the shunt situation breathing down our necks, it could probably go without saying that our spirits were really, really low.

Not knowing what else to do, we scheduled a time to visit with the leader of our local church congregation, hoping to get some type of guidance, or a boost to our faith, or at least to "rally our spirits" a little.

Unfortunately, we left the meeting feeling no better off than when we had gotten there. Maybe we didn't explain Nathan's situation well enough, or maybe we didn't explain our despair well enough. Maybe our expectations of the meeting were too high. I don't know. I won't go into details, but I felt like he just didn't get it....or....something.

Ugh.

Here We Go Again...

2010-05-11T20:23:00.000-07:00

Only a couple of weeks after being discharged, we were at our weekly appointment with the pediatrician when he noticed a squishy bulge behind Nathan's right ear, right where the new shunt passed. Dr. Cornish suspected that the shunt was again malfunctioning. So he made a call up to the neurosurgery department to confer and consult.

They recommended that we schedule an appointment for the following Wednesday when Dr. Riva-Cambrin would be in clinic, but to call and schedule an appointment with another neurosurgeon if we weren't going to be able to make it that long.

I don't know that it's possible to put into words the devastation and disappointment we felt at ANOTHER shunt failure. We had so much hope that this one was going to work. This one was SUPPOSED to work. All the other options available to us were bad, worse, worser, and worst.

And Nathan had been doing so well developmentally. Probably the best he'd ever done out of the hospital.

So what were we going to do now?

Nathan's First Time at Church

2010-05-10T19:49:00.000-07:00

Since Nathan was doing so well and since the minimum of the 3-6 month moratorium of not taking Nathan to public places had passed, we decided to go ahead and take him to church for the first time. However, we decided to only keep him there for part of the services and to keep him away from as many people as possible -- just in case.

Just for fun, I got Nathan and I matching pants and ties for church:

A Time of Really Good Progress

2010-05-09T20:13:00.000-07:00

After three long weeks in the hospital, we were happy to all be home again. Most of all, we were happy to have a working shunt again. And Nathan seemed happy to be home and to have a working shunt as well.

When healthy, Nathan was always a very happy child. But following this shunt surgery, his happiness seemed to multiply tenfold. He seemed to always be smiling and giggling. And, for the first time, he started to move around! They weren't big moves, but we were soooo excited. Mostly, he would just roll over on to his side, but it would usually be in an effort to try and reach something that he knew was around but that he couldn't get to just by feeling around.

Now we realize that most parents probably don't celebrate things like that, but when your child is over 8 months old, things like that were HUGE milestones to us and very worth of celebrating.

In addition, we were able to condense his feedings down to over 30 minutes, instead of the usual hour or so that it normally took. Which was also wonderful!

So all in all, it was a time a really good progress. We were super excited that Nathan was finally in a position to be allowed to learn and grow and progress without being stuck on his back all the time in a hospital bed. So we were looking forward to a wonderful summer.

Okay, Let's Try This Again...

2010-05-07T20:53:00.000-07:00

As soon as Nathan's infection had cleared, Dr. Riva-Cambrin was ready to reinsert the shunt. The plan was to reinsert it in the same spot at last time. However, since the last shunt had been infected, it is policy to move the catheter end of the shunt to the opposite side of the head. So since all of Nathan's shunts to this point had been on the left side, this time the shunt catheter would be on the right side.

The biggest problem with Nathan having a right-sided shunt was that the surgeon would have to work the tubing through the ECMO scar tissue in Nathan's neck / collar bone area, which was why the original shunt was put on the left side. It wasn't a major issue, just a minor inconvenience for the surgeon.

So as had become somewhat of an unfortunate ritual, we watched them roll Nathan away to the OR as we made our way to the waiting room.

It never becomes any easier to watch them roll your child away to surgery. And we were somewhere around the 10th surgery by this point.

After another long wait, Dr. Riva-Cambin emerged from the OR to let us know that the surgery had been successful. Again he was optimistic that the large space in which they had placed the shunt would serve as the ideal spot for the CSF to deposit. We were also optimistic, but we seemed to be getting less optimistic with each shunt failure.

Complaining

2010-05-06T22:00:00.000-07:00

This is probably going to be one of the hardest posts we've done. Both to write and to read.

When we decided to start this blog, we agreed that it was important to not only accurately describe the things that Nathan has gone through, but to also accurately describe the things that we have gone through as well. We figured the best way to help people who may be going through the same or similar things that we have gone through was to put as much "realness" as possible into this. So that's what we've tried to do. We've tried really hard to explain the medical things that Nathan was going through, some of which we really didn't understand all that well at the time he was dealing with them. We've also tried really hard explain what life was like dealing with everything that was going on too.

But the hardest things to really get into and explain from this time are our feelings. It's really not easy to express your feelings, especially when some of those feelings are really tender. But in order for us to be as honest as possible, we have to talk about things that were going on, how we tried to deal with them, how we coped, etc, even when some of those things are unpleasant to talk about. If we don't do that, then we are short-changing not only ourselves, but also all those who really need to know what we did to overcome the adversities of life's situations.

As a word of warning, some of our emotions (at times) will be really raw and hard to write, and thus probably hard to read, too, especially for those of you who know us now, and even harder for some of you who knew us back then. This is likely to be one of those times.

So grab a Kleenex (or two) and keep reading...

This marked the 4th time that Nathan had been admitted to the hospital, including when he was admitted to the NICU at birth. And, for us, it was by far the hardest admission since the NICU.

We were trying so, so hard to be optimistic and hopeful that Nathan would get better. With each shunt problem, we really, really wanted to believe that it was going to be our last hospitalization. But it was so hard to be optimistic, only to turn around and feel like you've been slapped in the face. Throw in the ambulance rides, the long, late night ER visits, and all of the traveling between home and the hospital, and we were just plain exhausted -- both physically and emotionally.

At this point, I began counting the days Nathan had been in the hospital against the days he'd been at home: 140 days in, 79 days out. The in was still 2 months more than the out. And at the rate we were going, there was no telling when the out would catch up.

In addition, we felt that Nathan wasn't having the opportunity to progress and develop because he was always stuck on his back in a hospital bed.

Additionally, it was so frustrating to have to call the hospital every night to get a report on how Nathan was doing instead of just walking down the hallway to check on him.

Was this ever going to end? Were we ever going to just keep Nathan at home? Were these blasted shunt problems ever going to just go away? Were we ever going to be able to not worry excessively about Nathan's health...and more importantly, his life?

Really, it's hard to say what weighed more on our minds and hearts: the frustration or the disappointment.

Also, it was really hard trying to figure out how to continue to be strong. After being emotionally beaten up so much, it becomes harder and harder to bounce back with the same enthusiasm that you had before.

For that reason, I was really worried about Bekah. Truth be told, she was fighting depression. And sometimes the depression would win. There were times when she would just break down and cry. And I didn't know really how to help her. And she didn't really know how to ask for help either. Honestly, I thought she needed some type of counseling. But when I brought it up, she only replied that she needed to have more faith. Which made it that much harder to know how to help her.

I, on the other hand, when I wasn't worrying myself sick over Bekah and Nathan, was fighting against anger and loneliness.

We were very, very grateful and appreciative for the members of our local congregation who would bring us dinners every once in a while. On some days, especially those long, hard days, it was really a lifesaver. It was one less thing to worry about. And some people were really nice and would ask how Nathan was doing almost every Sunday at church.

But outside of Sundays, we felt that we didn't have many friends. Or at least any friends that lived closed by. All we wanted were friends. Real friends. Someone to come over to our apartment, sit down, talk to us, ask us how we were doing. Someone to share our burdens and sorrows and pains with. Someone who would care during the week and not just on Sunday. But no one ever came.

And I became increasingly more frustrated and angry. And Bekah worried about me. That the anger would eat me up inside and destroy me spiritually. And she didn't know how to help me, either.

And so we struggled. Both separately and together. Having only each other, but not really knowing how to help each other. But we did try. We loved each other. And we loved our boy. And sometimes those were the only two things that kept us going.

Dealing with the EVD

2010-05-03T19:58:00.000-07:00

Within a couple of days of getting the EVD, Nathan was feeling much better. He was smiling again, kicking happily, and grabbing at things -- including the EVD on the top of his head! Since it would have been very, very bad had Nathan pulled it out, his nurses kept a blanket over his head as a means of an out-of-reach, out-of-mind distraction.

Bekah even brought a few of his toys from home to help make life a little more bearable for him. So, for the most part, Nathan was back to his normal, happy self.

Unfortunately, the same could not be said for both of us. This hospital stay was probably the hardest for us since the early days of Nathan being in the NICU.

Since the EVD is basically an open wound, it has very specific rules. The settings on the EVD must stay at a pre-specified height at all times, in order to ensure that the correct amount of fluid is being drained and the pressure inside the head stays where it should. Because of this, the child's activities are very limited, mostly to just laying in bed.

So because of the EVD, it was really hard to do anything with Nathan. He just had to lay there. If we wanted to hold him, we had to call the nurse so she could clamp the EVD. Once the EVD was clamped, we could then move to a nearby chair, sit down, and position Nathan comfortably in our arms. The nurse would then reposition the drainage system, and unclamp the EVD.

When we needed to move again, we had to go through the same process every time. So it was definitely on the low, low, LOW end of the fun scale.

And we had to do this for 2 weeks while they ran antibiotics to clear Nathan of the infection before they could re-insert the shunt. And they were two of the longest, most miserable weeks of our lives.

The External Ventricular Drain

2010-05-01T23:15:00.000-07:00

The night was short for both of us. We each only got about 2-3 hours of sleep that night. Bekah called around 10am to let me know that they were getting ready to take Nathan into surgery. So I hurried and got ready and headed up to the hospital.

By the time I got there, Nathan was already in surgery. Since the shunt was infected, they needed to remove it. But since Nathan currently had an infection, it was unsafe to install a new one. So the plan was to remove Nathan's infected shunt and run antibiotics for 2 weeks to clear up the infection. But Nathan still needed to drain excess fluid from inside his brain. So Dr. Riva-Cambrin was going to externalize the shunt with an External Ventricular Drain (EVD) for the duration of the antibiotics.

An EVD is a small flexible tube that is surgically implanted into one of the venticles of the brain. The CSF then drains into a collection bag at the patient's bedside.

The surgery was one of the quicker ones that we had waited through. But quick doesn't always mean trouble-free. After Nathan had been moved to Post-Op Recovery, his nurse noticed that the EVD was not draining. But since it sometimes takes an EVD a little bit to start draining, it wasn't something to be overly concerned about it until about an hour had passed since the surgery was over.

Since it still wasn't draining at that point, they tried to flush it. But when that didn't work, they suspected that it was likely blocked. So they took Nathan for a CT scan. Apparently, Nathan had had a tiny little bleed in his skin and the blood had seeped into the EVD tube and clotted, thus preventing the tube from draining.

So the good doctor had to take Nathan back into the OR to replace the EVD tube.

The most interesting thing about the EVD, at least for me anyway, was how unprepared I was for what it looked like. I knew that the shunt would be externalized, but I guess I just wasn't prepared for Nathan having a tube sticking out of the top of his head with a little bag at his bedside collecting brain fluid. It was actually quite a shocker:

Shunt Infection

2010-04-24T21:54:00.000-07:00

By the time we made it to the ER at PCMC, it was well after 10pm. After checking in, we were led back to one of the rooms to wait for the ER doctor.

Being in the ER is not a pleasant experience. Being in the ER late at night is even less pleasant. Once you check into the ER, you are basically at the mercy of the ER staff. You're not supposed to give your child any of their medications or anything to eat or drink without the OK from the ER doc. And depending on how busy the ER is and how "serious" your child's emergency is, you can be waiting for a long time.

So we explained to the nurse about the fever and about the shunt and how the pediatrician thinks it's probably a shunt infection. She wrote stuff down and said the doctor would be in to speak with us as well. And so we waited.

After a while the doctor finally came in and we had to retell him everything that we had already told the nurse. He checked the incisions on top of Nathan's head, behind his ear, and his abdomen. The one behind his ear looked a little swollen and tender. And when he pushed on it a little, this ugly, slimy, white puss came oozing out by one of the sutures. Definitely an infection.

So he paged the neurosurgeon resident on call to come over and see Nathan. As we waited for the him to show up, it kept getting later and later and later. When he finally showed up, he checked Nathan over and told us that we would be admitted to the hospital and that Nathan would most likely be scheduled for surgery in the morning to externalize the shunt.

But right now they were going to tap the shunt to draw some CSF from inside Nathan's head to check it for infection as well. From what they could tell but just looking at Nathan and the infected site, it appeared that the infection was just on the outside of the shunt. But if it were to penetrate to inside the shunt and get inside his brain, it could lead to meningitis -- a potentially deadly inflammation of the membranes covering the brain and spinal cord. So they wanted to rule that out as quickly as possible.

Eventually, sometime after about 4am or so, we were officially admitted back into the hospital. Since we didn't know exactly what time Nathan would be having surgery, we decided that Bekah should stay at the hospital with Nathan so that one of us would be there when it was time to take Nathan in for surgery. I would be going home to try and get some sleep before heading back up for the surgery in the morning.

If It's Not One Thing, It's Another

2010-04-23T21:45:00.000-07:00

Nathan was released from the hospital the day after his shunt surgery. Following this shunt revision, we were extremely optimistic that we were going to be free and clear from this point on. In fact, we were very, very hopeful.

It had been less than 3 months since Nathan had been discharged from the NICU, and we had already been re-admitted to the hospital twice for shunt problems. And this last time was so incredibly scary... So tt's definitely safe to say that things were not going like we had envisioned them when we were originally discharged from the NICU.

At the same time I don't think either of us expected "easy sailing" either. But things were definitely a lot harder than we had been anticipating. And throw in the added stress of the shunt failures, hospitalizations, and shunt revisions, and life was just a lot of worry and a lot of work. So we were both emotionally worn out and physically weary and looking forward to a good long time at home with Nathan.

Unfortunately, those plans didn't pan out.

One night, only a week after Nathan had been discharged from the hospital following his most recent shunt surgery, life turned all topsy-turvy on us again.

First, we noticed that Nathan's heart rate was abnormally high...going at over 170 beats per minute. That was our first clue that something was wrong. Nathan's heart rate only went that high when he was really sick.

Second, Nathan had a fever. And it wasn't just your run of the mill fever. It was pretty high. Over 102. So we were worried. In fact, we were very worried.

Fortunately, it was early enough in the evening that the after hours clinic at our pediatrician's office was still open. So we called and let them know what was going on and told them that we were on our way.

The pediatrician on duty that night checked Nathan out and suspected that, most likely, the shunt had become infected. Since it was most likely the shunt, he recommended that we go up to Primary Children's as soon as possible. So he called the neurosurgeon on call at PCMC to let him know that we were on our way and would be at the ER in about an hour.

VP Shunt Revisited

2010-04-22T21:28:00.000-07:00

Where to put Nathan's shunt? That was the $1,000,000 question.

We had learned from experience, both sad and scary, that Nathan's little body did just not appear able to absorb large amounts of CSF. Since both the VP and the VPL shunts had failed and with the VA shunt still out of the question, that meant that we were quickly running out of good options, which was more than frustrating.

Add that to the fact that it had only been another 36 days since the last shunt revision and top it off with how much we were opposed to the shunt back in December and the situation was just becoming more and more and more disheartening all the time

However, Dr. Riva-Cambrin was slightly more optimistic than we were. He believed that the main reason Nathan's body was having trouble absorbing all of the fluid was because of all of the scar tissue. And it seemed like a reasonable explanation to us because, well, let's face it: Nathan had a lot of scar tissue! So the good doctor wanted to give the VP shunt another try, but with a slight twist.

On one of Nathan's x-rays or CT scans, Dr. Riva-Cambrin noticed that there was likely a spot that he could put the distal end of the shunt on the far right side of Nathan's abdomen. It was a place with no scar tissue -- really the only place on his abdomen that was scar-free -- to impede the re-absorption of the CSF. It all made sense to us, so we thought we should go ahead and do it.

So Dr. Riva-Cambrin checked with the Dr. Scaife, the surgeon who had done Nathan's CDH repair 7 months before, to see if putting the distal end of the shunt there would be a viable option. Dr. Scaife agreed that it should work there and agreed to assists Dr. Riva-Cambrin with the surgery, since it was not your typical VP-placement shunt.

So for shunt surgery #3, the first thing they did was to drain Nathan's pleural cavity off the excess fluid. To do that, they opened up the incision behind Nathan's left ear, disconnected the shunt and basically used the tubing to siphon out about 95% of the excess fluid (that's all he could get out).

Dr. Riva-Cambrin then ran new tubing under his skin, across his chest over to the far right side of his abdomen, where Dr. Scaife made an incision to find a place to put Nathan's shunt. Apparently Nathan's intestines were jumbled and somewhat "sticky," but unscarred. Dr. Scaife unstuck the intestines a little and they found a spot behind his liver where they could tuck the distal end of the shunt that looked like it would work perfectly.

As usual, we had been waiting in the Waiting Room during the surgery. As Dr. Riva-Cambrin walked in following the surgery, the smile on his face let us know that the surgery had gone as well as, if not better than, planned. Just seeing the smile on his face made Bekah want to get up and dance before he even told us how it had gone.

He let us know about finding the spot behind the liver and how it was about 10 times bigger than the spot he had placed the first VP shunt. So he and we were all very optimistic. And by my math, 10 times bigger meant that it should hold 10 times as much and last 10 times as long. So to me 10 times 9 weeks for the first shunt meant that we should be good for quite a while.

An Even Scarier Scariest Day EVER!!!

2010-04-21T21:13:00.000-07:00

For the next couple of days following Nathan's Big Scare, we were both more than a little scared and nervous to leave Nathan alone, for even a little amount of time, for fear of having a repeat episode from Wednesday.

And then, to make matters even scarier, Nathan started to develop a very worrisome cough, which seemed to get harsher and wetter as the days went by. It was like he was trying really hard to cough up a lot of mucus, but that he could never clear it out.

By Monday morning, Nathan's condition had worsened quite a bit. He was throwing up more again. And every time he coughed, it just sounded horrible. His breathing became heavier, yet shallower at the same time. And he was getting very sweaty, pale, and clammy. So we cranked up his oxygen, but it didn't seem to be helping at all. We were at a total loss for what to do to help him and it looked like he was on the verge of going unconscious. With no other recourse left, we called 911 again.

Fortunately, Monday was my day off. So I was home this time, which meant that Bekah didn't have to go through it all alone again. So while I was on the phone with the 911 dispatcher, Bekah was doing the best she could to tend to Nathan and make sure that he stayed awake.

Within a few minutes, the EMS were back at our apartment and we were discussing options of what to do. It didn't take much more than a quick glance between us to agree that needed to get Nathan to the hospital...and fast.

Since it was snowing outside, I quickly grabbed a blanket, wrapped Nathan up, and ran out the door. It was a few short steps down the stairs and then a few more to the waiting ambulance. As soon as we were on board, one of the EMTs handed me an oxygen mask with the rate going at 10 liters per minute and we were headed off to the hospital.

I held the mask over Nathan's face so that he would get as much oxygen as he could. Nathan seemed so very close to unconsciousness. His eyes would start to roll back in his head and it looked like he just wanted to relax and let go. Each time this would happen, I would yell at Nathan really loudly, calling his name, and telling him to stay with me.

In my head, I just kept half saying to myself, half praying "It can't end this way. Heavenly Father, it can't end this way."

At times when I'd shout Nathan's name, he'd briefly focus his eyes, but they would quickly go back out of focus and they'd start to roll back again. When he wouldn't respond to my yelling his name, I would put the oxygen mask as close to his face as I could and give him an intense shot of pure oxygen, which would serve to bring him back for a few moments.

"It can't end this way. Heavenly Father, it can't end this way."

After what seemed like forever, we arrived at the hospital. We rushed into the ER and I handed Nathan over to the ER team and got out of the way. As much as I wanted to be with Nathan, I more wanted them to be able to do what they needed to do without me being in the way. They were able to get Nathan stabilized on high amounts of oxygen as Bekah arrived at the hospital.

To get a better idea of why Nathan was having such problems breathing, the ER doctor ordered a chest x-ray. And he was confused by what he saw:

The doctor asked if I had seen any of Nathan's chest x-rays before and if I could explain everything on it. So I walked over, looked at it, pointed out the metal loops that they had used to close his sternum after chest surgery, identified, the NG tube that was running down his throat and into his tummy, identified the tube from his oxygen cannula that was draped over his chest and abdomen, and identified the shunt tubing that was running behind his ear and into his chest.

The doctor mentioned that he also was able to identify all of those, but his main question and concern was the big white cloud taking up most of the left lung area (on your right in the image). I replied that I didn't know what it was as it had never appeared before in any of Nathan's chest x-rays.

Having said that, he decided that it was in Nathan's best interest to be transferred to Primary Children's for further evaluation. So they prepared him to be transported and then loaded him into the ambulance again. This time Bekah rode up with him while I followed behind in the car.

After we made it to Primary Children's and the ER doctor had a look at Nathan's x-ray, he called for Dr. Riva-Cambrin, the neurosurgeon. Dr. Riva-Cambrin ordered a CT scan to double check what was going on inside Nathan's chest. As it turns out, as you might have expected, Nathan's body was not absorbing the CSF fluid the shunt was depositing into the pleural cavity.

As a result, the fluid had built up and filled the cavity, which was then pressing against Nathan's lung. In essence, it was almost like Nathan was drowning, but from the inside.

So the shunt had to come out and come out soon. The problem, again, though, was where to put it...

The Scariest Day EVER!!!

2010-04-19T19:00:00.000-07:00

Towards the end of March, Nathan started to present some signs of shunt failure again. For about a week he was throwing up more than "normal"...normal for Nathan anyway. We had begun to accept that because of his jumbled up insides and reflux, there was probably going to be some amount of vomiting associated with having a CDH baby. It was the "extra" vomitting -- more in quantity, more in frequency, and sometimes violent in nature -- that was worrisome.

Then the excess vomiting went away and some sunsetting of the eyes returned for about a week. That same week his head size had also gone up a little bit.

And then the sunsetting went away and the vomiting returned again. And that's where we were at the beginning of April.

Then on Wednesday, April 2nd, Bekah had the scariest day EVER!!!

I was at work, working extra hours on a special project, trying to take advantage of an opportunity to earn some extra income. Bekah was home alone with Nathan, which was not abnormal. She did it every day. But this night was far from normal.

Bekah had laid Nathan down to rest on his side on his boppy pillow in the family room. As he was laying there, he threw up a little bit. Again, not that abnormal. But as Bekah went to grab a burp rag, Nathan started choking. Then, suddenly, he started to have problems breathing. His lips started turning blue. And the rest of him started turning red.

Bekah quickly flipped him over and checked to make sure his airway was unobstructed and/or clear it of any obstructions that might be in there then gave him a couple of CPR breaths. But nothing seemed to be helping. His lips were still blue and he had begun to be very clammy and to look very drowsy, like he was going to pass out or lose consciousness.

Bekah was trying her best to stay calm and keep her composure under the intensely emotional stress of the situation and was actually doing an amazing job considering Nathan's condition. When nothing she tried worked, she was quicklly on the phone with 911.

Fortunately, we literally live right around the corner from the fire station and the EMS. While Bekah was on the phone with the dispatcher, Nathan's normal color started to return. And within a couple of minutes the paramedics were at our apartment.

They looked Nathan over and listened to his breathing, but seemed to think that he was doing OK. However, they did offer to take them to the ER to have Nathan checked out further. But he was doing enough better that she felt comfortable staying at home.

When I got home from work, not very long after everything had calmed back down, Bekah told me everything that had happened. She told me how awful and scary it was to have Nathan so blue for what seemed like so long. But I was so proud of her for staying so calm and level-headed and knowing exactly what to do. She was really, really amazing considering the horrifying circumstances.

Withdrawals

2010-04-18T20:48:00.000-07:00

Nathan was discharged from the hospital on March 2nd, only a couple of days after the shunt revision. Besides a couple of days of soreness, crankiness, and lots of sleeping, Nathan recovered rather quickly from the surgery.

Once Nathan was feeling better, we decided that it was time to go ahead and wean him off one of his meds: methadone. Methadone is a synthetic narcotic drug that is used as an anti-addictive medicine to harder narcotic medicines like morphine.

From very early on in his life, almost since he was born in fact, Nathan had been a regular on morphine, including a time when he was on a steady morphine drip. As he got better though, the doctors in the NICU were able to wean down his morphine useand transfer him to methadone. Methadone helps to mitigate the withdrawal effects of morphine by producing many of the same effects on the body and mind that morphine does, but not quite as "harsh." But even though the effects aren't as harsh, patients can and often do develop a physical and psychological dependency to methadone and its effects.

Nathan only came home on 1cc of methadone, which is in the grand scheme of things is only about 1/30th of an ounce. So it's really not a lot. But to Nathan, it was quite a bit. When we had started to wean him off, we only dropped the dose by .1cc. And it was really rough on Nathan. He cried and cried and cried for about an hour. Inconsolably.

We tried soothing him in the rocking chair or walking around, and neither worked. The only thing that seemed to work was singing. Now Bekah knows a number of lullabies or little tunes from here and there. But me?...not so many. However, I do specialize in making songs up. So I would make up songs about things I liked to eat with mashed potatoes, or about Nathan being tired and sleepy, or anything else I could think of and put to a tune that would come to mind. And amazingly, most of the time, it worked brilliantly. It helped keep Nathan calm during the most brutal hour of the withdrawals.

Once Nathan would become used to the dose, we would give him a few days on it and then lower it again and go through it all over again. We talked back and forth about things that we could do to try and help Nathan better handle the withdrawals. Because sometimes even with the singing, it was horrible for Nathan and for us. Sometimes the withdrawals were so bad and Nathan cried so much. Sometimes we thought that we would go crazy from the non-stop crying. But most of the time we just felt so bad for Nathan. Being so young and having his body addicted to the medication. It was entirely heart-wrenching.

Then about half-way through the weaning process, it finally dawned on me, like a wave of inspiration. To help with the physical and emotional anxieties of withdrawal, Nathan had been prescribed an anti-anxiety medication called Ativan. However, when we had originally been discharged from the hospital, both the methadone and the Ativan were scheduled to be given at the same time!

So since there were being given at the same time, as we were coming down on the methadone, the Ativan didn't have a chance to get a "head-start" in heading off the withdrawal effects from the methadone. So we bumped the Ativan up half an hour. And it worked wonderfully! The withdrawal symptoms were clearly lessened. I felt so bad that we hadn't thought of it sooner. It would probably have saved Nathan and us a few restless nights.

Shunt Revision

2010-04-15T19:43:00.000-07:00

Dr. Riva-Cambrin's hunch that Nathan's body was unable to absorb all the cerebro-spinal fluid (CSF) being deposited in his abdomen. So instead of being reabsorbed into his system, the CSF was basically "pooling" in the pocket of his abdomen where the distal end of the shunt was placed. Once the "pool" was full, no more fluid could fit in the pocket. Since the shunt couldn't drain anymore, the fluid had no where else to go. So it stayed in the ventricles, which is what was causing Nathan's head to get bigger.

So we needed to find a new place for the shunt to drain.

In general, when a venticuloperitoneal (VP) shunt fails, the preferred next best location is a ventriculoatrial (VA) shunt. So instead of emptying into the abdomen, the shunt empties into the right atrium of the heart. From there it is carried through the bloodstream and is eliminated and absorbed throughout the body, not just in a single location.

It sounded like a a great plan to us. However, given Nathan's long history of heart issues, his cardiologist did not think that his heart would be up to the task. So he said "No" to the VA shunt. So that meant that we were looking for another location to place the distal end of the shunt.

Upon closer inspection of Nathan's body, Dr. Riva-Cambrin discovered that there was a large open area around Nathan's CDH repair, in the area around his left lung. This area is known as the pleural cavity. It is actually a space between the chest wall and the lungs. It is lined by a membrane along both the chest wall and the lungs. A fluid called pleural fluid is generally found in the cavity. The CSF is added to this fluid and is then absorbed into the body.

This type of shunt is known as a ventriculopleural (VPL) shunt. And with Nathan's wacky anatomy, this seemed like the best option available to us. All of the pieces just seemed to come together. Nathan's hernia repair was the answer to solving the hydrocephalus problem! Brilliant! We felt that this was Divine Intervention smiling down upon us again.

And the surgery went really, really well too. They had placed Nathan on a ventilator for safety precautions during the procedure. But he was able to come right off when the surgery was over.

So Nathan's shunt revision took place 9 weeks and 1 day from the placement of the original shunt. And considering how much we struggled with the first shunt, we felt a lot better about this one. We were hoping and praying that this would be it. Even though we knew that the odds of having another shunt revision were now dramatically higher, we really, really wanted to believe that Heavenly Father would bless Nathan to be able to heal and move forward.

Readmitted to the Hospital

2010-04-14T21:38:00.000-07:00

We made it up to see Dr. Riva-Cambrin the last Wednesday of February. During the previous week, Nathan had actually done pretty well. He was less cranky than the week before and he was vomiting less as well. But part of that we attributed to changing his formula to one that was a little less harsh on his tummy. On the other hand, his head had grown considerably and the soft spot on his head was bulging.

So the doctor requested a CT scan to get a better look at what was going on inside Nathan's head. After reviewing the results, he decided to admit Nathan for a shunt revision the next day. It was a bittersweet moment for us. It was really, really disappointing to be back in the hospital after only 36 days. But we had missed our friends at the hospital and it was going to be a relief to get Nathan's health back on track.

But to our dismay, Nathan was not readmitted to the NICU. Apparently he didn't qualify to be in that unit any longer. Instead he was admitted to the Neuro Trama Unit (NTU) for patients with brain and head injuries and problems. It was strange being in a new unit with unfamiliar nurses. But they were very nice and friendly, especially while we waited to find out about the plan for Nathan's shunt revision.

Shunt Problems

2010-04-13T20:20:00.000-07:00

It wasn't very many days after Nathan's botched hearing test that we started to notice that his shunt was likely having problems. He began throwing up a lot more. And a lot more violently too. In addition he was almost perpetually cranky, and his eyes began sunsetting again.

Our weekly meeting with the pediatrician showed that Nathan's head had not grown any since out last appointment, but the soft spot on his head did look a little more bulgy. So we called the neurosurgeon's office and Dr Riva-Cambrin happened to be out of the office that day. So we had our next follow-up appointment bumped up a from the first week of March to the the next week, which was the last week of February.

We were very nervous about Nathan's shunt because we had been told that once you have a shunt revision, the likelihood of future shunt revisions increases dramatically. So we were hoping that Nathan wouldn't need a revision, but deep down we knew that it was the most likely scenario.

Hearing Test Follow-Up

2010-04-12T20:30:00.000-07:00

Some babies who have been on ECMO have experienced hearing loss. So before Nathan was discharged from the NICU, as part of standard procedure, he had a hearing test to check if he was suffering any hearing loss. The test showed that Nathan may have had partial hearing loss in his left ear, mostly for sounds about as loud as a whisper. But because his shunt was left-sided, there was a possibility that the shunt may have interfered with the results, so they recommended that we have Nathan retested. The re-check was scheduled for the second week of February.

We weren't really worried about Nathan's hearing at this point. We knew that he could hear since his favorite toys were rattles and noisy things. And even if he did have partial hearing loss, at this point there wasn't a lot that we could do about it. So we felt that the hearing test was a little unnecessary at this juncture, but we went ahead with it anyway just to get it out of the way.

In addition to the standard hearing screening, Nathan was also scheduled to have a brainstem auditory evoked response (BAER) test as well. The BAER test measures brain wave activity in response to certain tones.

For the test, the patient is to be reclining and remain absolutely still. Electrodes are then placed on the scalp and on each earlobe. The earphones give off tones or clicks that stimulate the hearing nerves that run between the brain. The electrodes pick up the brain's responses to the sounds and records them.

The responses are involuntary, so it is an effective way to test the hearing of those who are unable to respond to a hearing test -- such as babies. And since the responses are involuntary, the patient does not have to be awake during the test. Since the audiologist has to place electrodes on the patient to measure the responses, they prefer that babies be sleep deprived, so that they can place the electrodes before he or she falls asleep.

A day or two before Nathan was scheduled for his hearing test, the audiologist's office called with instructions on how to deprive Nathan of sleep. Basically, we were supposed to keep him up an hour or two longer than normal and get him up an hour or two earlier than normal. Then we had to keep him awake until we got to the hospital...about a 45 minute car drive away.

So to keep Nathan awake during the car ride, Bekah sat in the back seat next to his car seat. She shook every rattle we owned and would shout his name every time it looked like he was starting to fall asleep. Or she would shake his arms and legs like they were dancing. Nathan did pretty well for the first 30 minutes. But then he had had enough. Fortunately we made it to the hospital before he became too cranky!

We only had to wait about 15 minutes before we were taken back to meet with the audiologist. She performed the standard hearing screening on Nathan and he passed perfectly! She then said that we were cleared to go. We said that we thought that Nathan had to take the BAER test as well, but the said that since he passed the first test, the second one was unnecessary. So we headed home, happy and relieved that Nathan's hearing was fine.

A couple of days later, someone from the audiologist's office called and asked us if Nathan had been on ECMO. We told them yes, to which they responded that in that case Nathan would in fact need the BAER test.

To say that we were annoyed or that this was an inconvenience would be an understatement. We were so annoyed! It had not been easy to keep a 5 month old baby awake for an entire 45 minute car ride when we'd kept him up late and gotten him up early and all he wanted was to go to sleep. It felt like torture trying to keep him awake, and we were in no hurry to repeat that process. So we just told them that we would get back to them and left it at that for the time being.

Nathan Laughs!

2010-04-10T11:09:00.000-07:00

There are a lot of things you don't think about your child doing, unless they don't do them. And then when they finally do them, it's like the biggest celebration and party you can imagine. For us, laughing was one of those things.

Following his shunt surgery, as he started to feel better, Nathan became a really happy baby. As we would play with him, he would get really, really excited: his eyes would get really big and happy, his mouth would open wide, and he would wiggle crazily. It was awesome and adorable!

But he never made any sound. And honestly, that was more than a little disappointing to us, to have your 5 month old not really make any sounds.

And then one night it finally happened! As I was playing with Nathan, he made..a happy noise! I turned to Bekah and asked her if she had heard it too, which she had. I excitedly said that I thought it was a laugh. Bekah wasn't so sure.

I was 90% certain it was laugh though, and I really, really, really wanted him to do it again. So I tried to remember exactly what I had done to cause it and tried to repeat it again. And sure enough, he did it again. Now I was 100% convinced that it was a laugh.

I felt like Super Dad! I had made Nathan laugh. I was so happy. There were times that I felt left out because I had to go to work all the time and Bekah got to stay home all day with Nathan. So being the first one to make Nathan laugh was such a thrill for me.

But not so much for Bekah. She felt just the opposite of what I felt. In fact, she felt really bummed out.

Bekah felt gypped for exactly the same reason that I was so thrilled. She got to spend all day at home with Nathan, so why didn't he laugh for her.

It was a growing experience for both of us as we learned to better appreciate each other and the joys and downers that were going to come along as Nathan grew up.

Thankfully, Nathan started laughing for Bekah in a couple of days, too. So that definitely helped!

Follow-Up With the Neurosugeon

2010-04-08T20:57:00.000-07:00

A couple of weeks after Nathan had been discharged from the NICU, we were scheduled for his first follow-up with Dr. Riva-Cambrin, the neurosurgeon who had installed Nathan's shunt. It had been 6 weeks since the surgery, so the follow-up was routine and had been scheduled since before discharge.

This was our first trip back to Primary Children's and our first time taking Nathan anywhere other than the pediatrician's office. And it was quite an adventure!

Not only did we have to take one of the portable oxygen tanks and Nathan's pulse oximeter, but because PCMC is an hour from home, we also had to pack an extra oxygen tank (just in case) as well as Nathan's feeding pump and any meds that were due while we were to be gone. And to top it off, we had a small gym bag that we were using as our diaper bag that was packed full of supplies, including numerous burp rags and a change of clothes or two for Nathan (also just in case).

So as we walked down the halls of Primary Children's, we're sure we looked like quite the parade, toting all of Nathan's supplies and carrying him in his car seat carrier. Thinking back now, it's too bad we didn't take a picture of it!

The appointment with Dr. Riva-Cambin went pretty well. He asked how Nathan was doing, how his eyes were behaving, and how much he was throwing up. We let him know for the most part Nathan was doing quite well. There weren't really any issues with his eyes like there were a couple of months ago, but he was having some issues with vomiting, especially in the mornings, including one really scary one where we think he choked on it and aspirated a little bit.

In addition, since we had last seen Dr. Riva-Cambrin, Nathan's head size had gone down a little bit, which was a good sign that some of the fluid had drained from his head. However, his head size had not gone down as much as the doctor had wanted, which made him wonder if the shunt might be blocked. In fact, Dr. Riva-Cambrin actually hypothesized that because of all the scar tissue in Nathan's abdomen, that his body just might not be absorbing the fluid as quickly as it should.

So with the vomiting and the head size issues, Dr. Riva-Cambrin decided that he wanted to keep a close eye on Nathan and asked us to come back in 4 weeks for another follow-up.

Kids on the Move

2010-03-26T21:01:00.000-07:00

Because Nathan had been so sick and spent so much time in the NICU, he was developmentally behind other 4 1/2 month old babies. To assist us in learning how to help Nathan in his development, the hospital connected us with an early intervention program in our area.

Before Nathan was discharged from Primary Children's, his physical therapist from the NICU got in contact with Kids on the Move, an early intervention program in our area. A representative from the program came to the hospital and met with Bekah. They discussed Nathan's history, what our needs were, and what services they would be able to provide.

Then, the first week Nathan was home, we received a call from Mark from KOTM to schedule our first therapy session for the following week.

When Mark came, we explained Nathan's history and noted that the biggest issue that we were having with him was his complete dislike of be put in new positions. He only liked to lay on his back or sit. Every other position was scary and freaked him out.

Mark explained that we needed to work with Nathan to get him into new positions, even though it may be scary and uncomfortable for him, but also still try to make him feel safe and supported. One of the first new positions we tried was kneeling. And needless to say, Nathan didn't like it at all!

Even though Nathan didn't like the therapy, it was something that we could do everyday and something that we could use to actually gauge his progress. So it was really good, even though it was going to be really hard.

In addition to his new physical therapist, KOTM also provided Nathan with an occupational therapist, Gary, to help us with Nathan's oral therapy (eating and other oral stimulation activities).

It was really wonderful to have such great help as we dealt with all of Nathan's developmental delays. It was really frustrating to have Nathan be so limited in the things that he could do and not know what to do or how to really deal with a lot of things.

But as we would bring them up with Gary and Mark, they always seemed to know the answers we needed.

The First Sunday

2010-03-24T20:36:00.000-07:00

As part of Nathan's discharge orders from the NICU, they recommended that we not take him take him anywhere for at least 3 to 6 months. And Dr. Cornish agreed. So that meant no taking Nathan to church until at least the end of April -- at the earliest!

To compromise, we decided that we would take turns going to church, trading off every other week. Either by some luck of the draw or through my benevolence, I got to spend the first Sunday home with Nathan, while Bekah went to Church. It was the first time either of us had been alone with Nathan for an extended period of time.

And for the most part, Nathan and I fared quite well. We played a little. I fed him lunch. I made sure to give him his meds. In general we had a pretty good time.

The only rough spot in the day came when Nathan had a dirty diaper. And oh man was it a dirty, dirty diaper! Quite full, quite messy, and very, very stinky! Luckily, I managed to change it without incident! But it was close. My gag reflex was on Alert Level Orange! Nonetheless, I was quite proud of myself.

You could probably say that I was on an emotional high after successfully changing such a nasty diaper. And it's possible that it went to my head. Because in my zeal to be a good father, I decided that I would be proactive in Nathan's care and suck out his nose, since it had been very stuffy.

And that's where my mistake was!

Just as soon as I had put the bulb syringe into his nose and it made the first slurpy-sucky sound, I knew I was in trouble. My gag reflex immediately shot up to Alert Level Red! Then the accompanying slimy boogers just about sealed the deal. My gag reflex was now on Threat Level Red, capable of reaching the tipping point at any moment.

I quickly applied my Zen Deep Breathing Techniques along with my Gag Restraint Tiger Growling Techniques in an attempt to curb the tide and lower the Threat Level. Thankfully, it worked.

But I was a changed man after that. I've never been able to look at a bulb syringe the same.

The Rest of the First Week

2010-03-24T18:27:00.000-07:00

After the first night, the rest of the week passed mostly without incident.

Wednesday morning, Nathan was throwing up quite a bit, which we attributed to the rough night he had had.

Wednesday afternoon, we had our first appointment with Dr. Cornish. They scheduled us for the first appointment right after lunch so that the waiting room would be as empty as possible. While there, they weighed Nathan, measured his head, and took his blood pressure. We also talked about Nathan's medications, what had happened the night before, and what to watch for in regards to Nathan's health, and what we could likely expect moving forward. And then he told us to come back the next week.

The rest of the week we spent at home playing and loving and enjoying every moment of it.

Occasionally, Nathan would have some issues with vomiting, especially while being fed, so we did our best to deal with it and work around it by pausing Nathan's feeding for a few minutes if we needed to. The hard part, though, was learning to tell the difference between "normal baby spit-up" and "we need to worry throw up."

But as each day went by, we learned to adjust more and more to life with Nathan at home. We adapted to what we could and tried to make as much of a routine as we could. And it was really an adjustment!

Here are a few pictures from Nathan's first week home:

Our First Night Home

2010-03-23T20:56:00.000-07:00

The drive from the hospital to home took about an hour. So we got home from the hospital late in the afternoon on January 22nd. After we got home, we showed Nathan around and introduced him to his new room and crib.

The evening was relatively eventless, but that night was one of the scariest and craziest nights we've ever been a part of. It really tested us as parents and our ability to care for Nathan.

Before Nathan came home, we made sure to buy a baby monitor so that we could hear anything that happened in his room. In addition, we decided to place the pulse oximeter in the hallway between our room and Nathan's room, so that we could hear it when it went off and quickly see what was causing it to beep. We figured with both of those, we had our bases covered.

Nathan fell asleep sometime around 11pm. Soon thereafter we made our way back to bed as well, very, very, very grateful that for the first time we were all home together.

And then the night started to fall apart.

Not long after we laid down to sleep, Nathan's pulse oximeter started beeping, indicating that his blood sat level was lower than 95%. Beep beep beep. Beep beep beep. Beep beep beep. So we would go in and check on Nathan. And he looked just fine.

So we went and laid back down again. And sure enough, it wasn't very long after we had laid down -- Beep beep beep. Beep beep beep. Beep beep beep. Nathan's sat level was reading low again. But Nathan was still looking fine. Sleeping peacefully. Skin pink, not blue. So all was well, right?

Well, since Nathan was still looking good and breathing normally, it was entirely likely that the monitor was misreading. That happens sometimes. And even though the sat level was reading low, it was still reading in the 90s, which was still generally pretty good and pretty safe.

So the thought crossed our mind of ignoring the alarm. But what if it dropped lower than the 90s? That wasn't a chance we could take. So I decided that we should sleep with our heads at the foot of the bed so that we could more easily look at the monitor.

But...Beep beep beep. Beep beep beep. Beep beep beep. It just kept going off. And we had no idea what the problem was.

In the hospital, whenever Nathan would de-sat, they would up his oxygen slightly. On our home tanks, there was no "slightly" when it got up to a liter. The only up was up to a liter and a half. That was much more oxygen than Nathan needed, but we decided that it was better to go up and try and get the beeping to stop and go crazy all night.

And it worked...for a little while.

Beep beep beep. Beep beep beep. Beep beep beep.

By this time, most of the night had passed and Nathan had become really fussy. So we decided to just bring him into our room. We had been gifted a bassinet by one of Bekah's friends. So we put the bassinet at the foot of the bed, placed Nathan inside it, and turned off the monitor. That way we could keep an eye on Nathan ourselves.

Eventually Nathan settled down and we were able to get about an hour of sleep. Then he awoke and was fussy again. So we got up and checked his oxygen tank, which was in the red, meaning empty, or at least close to it. Apparently, being set at a liter and a half had emptied the tank a lot faster than we had anticipated. So Bekah hurried and hooked Nathan up to the spare, full tank we had. But Nathan had probably not been on the oxygen for at least an hour. Maybe more. We had been told at the hospital that on a liter, the tank would last about 24 hours. So we were extremely surprised to find it empty so soon.

We both felt sick and horrible. We hadn't even made it a day and already things were going wrong. Was Nathan going to be okay? Were we going to end up back in the hospital after less than a day?

We were quickly on the phone with our home health company to get more tanks. The representative asked how much oxygen Nathan was on, and when I told him he seemed more than a little incredulous that a little baby should be on that much oxygen because "that is a lot for an adult." I assured him many times that it was correct.

However, instead of bringing extra tanks, he brought a oxygen concentrator instead, similar to the one shown below.

A concentrator is quite the contraption. Room air is about 78% nitrogen and only 21% oxygen. The concentrator sucks in room air and filters out the nitrogen, producing pure oxygen. It runs on a conventional power source (AC outlet in the wall) and there are never any tanks to change out. And most importantly, it had a knob that allowed the the rate of oxygen flow to be changed ever so slightly up or down. In short, it was a godsend!

And so went our first night. Very long. Very, very crazy. And very, very, very scary.

The Pulse Oximeter

2010-03-20T21:03:00.000-07:00

As we've already mentioned, Nathan came home on oxygen. In addition to the tanks of oxygen we were given at the hospital, our home health company also provided us with a pulse oximeter, like the one seen below.

A pulse oximeter measures the oxygen saturation of a person's blood. Oxygen saturation, or "sats" as it is commonly referred to, measures the percentage of oxygen-rich hemoglobin in a person's blood. Hemoglobin is the part of blood that transports oxygen. It is the number beside the percent sign above. The pulse oximeter also monitors a person's heart rate, which in the picture above, is the number next to the heart. It also shows the wave-rate of the person's heartbeat.

You can set alarms on the monitor to go off if either the sat percentage or the heart rate get above a certain number or below another number. Because of his pulmonary hypertension, we needed to keep Nathan's sat level at 95% or above. So we set the alarm to go off if the percentage hit 94 or below. And under directions from Nathan's cardiologist, we set the heart rate alarm to sound if it went above 200 or if it went below 80.

On a side note, we realize that our last few posts have been all about medical mumbo-jumbo and what not, but we felt that it was really important to go over all this stuff, so that you could better understand everything that happened after we got Nathan home from the NICU.

Treating Nathan's Pulmonary Hypertension

2010-03-18T21:31:00.000-07:00

One of the principal causes of Pulmonary Hypertension are congenital heart defects. In addition to causing Pulmonary Hypertension, heart problems can also cause a build-up of fluid in the tissues around the heart. As we've previously discussed, Nathan has quite the history of heart issues. So he was prescribed a number of medications for his heart and for the Pulmonary Hypertension.

Digoxin -- Digoxin works to slow the rate at which the heart beats, assisting it in pumping more efficiently.

Enalapril -- Enalapril acts as a treatment for high blood pressure by acting as a "hormone blocker." It works against the system that regulates blood pressure and fluid balance. When blood volume is low, the kidneys produce renin. Renin stimulates the production of angiotensin. Angiotensin causes blood vessels to constrict, resulting in increased blood pressure. Angiotensin also stimulates the production of the hormone aldosterone. Aldosterone increases the body's absorption of sodium and water and aids in the release of potassium in the kidneys. These actions increases blood volume, and as a result, blood pressure.

Diuril -- Diuril is used both as a diuretic and as an anti-hypertension medication. Diuretics are drugs that elevate the rate of urination, or in other words they make you pee a lot more than normal. This helps to eliminate the excess fluid that builds up around the heart.

Aldactone -- Aldactone is also both a diuretic and an anti-hypertension medication. Like the enalapril, it acts as a hormone blocker. It is used to block the hormone aldosterone. As mentioned above, aldosterone has the tendency to raise blood pressure. Thus by blocking aldosterone, aldactone lowers blood pressure.

Sildenafil -- Sildenafil relaxes the arterial wall, leading to decreased pulmonary arterial resistance and pressure. This in turn reduces the workload of the right ventricle of the heart, which as we learned previously is key to maintaining heart health and reducing Pulmonary Hypertension.

Oxygen -- As we've previously noted, Nathan came home on supplemental oxygen. Oxygen is also used in the treatment of Pulmonary Hypertension. 100% pure oxygen helps loosen up the muscles in the arteries of the lungs. This aids in lowering the blood pressure, and the patient is able to breathe much more easily. It also helps decrease organ stress by providing the patient with needed levels of oxygen support.

I realize that that was a lot of physiological jargon. But I find it entirely amazing how the body works and how the different medications work together to combat different systems or hormones to keep the blood pressure in the lungs low and the heart functioning properly. It is truly amazing. We are indeed very grateful for the miracle of science.

Pulmonary Hypertension

2010-03-18T08:55:00.000-07:00

I think the hardest of all of Nathan's conditions for us to try and explain and for other people to understand was pulmonary hypertension. But in order to understand a number of things going forward, it becomes really important to understand it. So here goes...

Pulmonary Hypertension is a persistent, abnormally high elevation of the pressure in the blood vessels of the lungs. Essentially it is "high blood pressure in the lungs." For convenience sake, that's how we generally referred to it when talking to others.

In order to better understand Pulmonary Hypertension and its effects and dangers, it's important to understand the normal workings of the circulatory system.

Blood that has been circulated through your body is brought back to your heart into the right atrium, where it is then moved to the right ventricle. From there it is transported through the pulmonary artery to the lungs, where it is oxygenated from the air that you've breathed in.

The blood is then taken back to the heart into the left atrium, where it is then moved to the left ventricle, and then out to the body through the aorta to repeat the process all over again.

As the blood is circulated through the body, it exerts pressure on the walls of the blood vessels. This force is known as blood pressure. Normally, the left side of the heart produces a high blood pressure in order to pump the blood to the body. The right side of the heart pumps blood to the lungs under a much lower pressure.

In pulmonary hypertension, the small arteries in the lungs are too narrow, thus restricting the normal flow of blood through them, which then causes the pressure in the vessels to rise above normal levels, resulting in an increased resistance to blood flowing through them, as can be seen in the diagram below.

In addition, the blood pressure in the pulmonary artery also rises above normal levels. Sometimes far above normal levels. As a result, the right side of the heart, the side that pumps blood to the lungs, has to pump against a higher resistance to blood flow. This makes it more difficult to pump the blood through the lungs.

The increased resistance places a strain on the right ventricle, which has to work harder than usual to move adequate amounts of blood through the lungs. Over time, the right side of the heart may become enlarged, as can be seen in the diagram below.

If the right ventricle enlarges too much, it may struggle to function properly. In many such cases, blood is often forced backwards through the tricuspid valve, as shown below.

If left untreated, eventually, the heart will fail.

Nathan's Schedule

2010-03-15T20:38:00.000-07:00

Now that Nathan was home, we were in for quite a big change.

There were no more nurses to care for Nathan. Everything was now up to us. So I took the week off to be home with my son and to help Bekah out as we tried to work out how we were going to adjust to Nathan's schedule.

And Nathan's schedule was quite a doozy!

First, he required a feeding every 3 hours. Many of you are probably thinking, "Well that's normal." But we need to remember that Nathan didn't eat anything by mouth. It was all through his NG tube.

When we got released from the hospital, our home health company brought us a feeding pump.

With the feeding pump, you fill the bag with the amount of formula to be dispensed, in Nathan's case, 3 1/2 ounces. Then you set the pump to run at a whatever rate you want the food to be dispensed, in milliliters per hour.

Nathan was scheduled for 5 feedings during the day. And each feeding generally took between 45 minutes and an hour. In addition, he also had a feeding that ran overnight for 8 hours that was equal to about 3 daytime feedings.

In addition to his feeding schedule, Nathan also had a schedule for his medications, of which there were 12.

Nathan had 4 heart medications,1 med for high blood pressure in his lungs, 1 med for reflux, 1 med to help his motility, 1 anti-anxiety medication, and 1 low-level narcotic. Some meds were due once a day, some twice a day, and some three times a day. Normally they were scheduled at the same time as a feeding, just to make life a little easier.

So that was going to be the brunt of our daily schedule. Just thinking about it again makes us remember how brutal it was!

A Few Rounds of Thanks Yous

2010-03-14T20:35:00.000-07:00

As we ended recounting our stay in the NICU and before we move on, we decided that it would be a great idea to extend a few rounds of very appreciate Thank Yous to those who helped us through our NICU experience.

First, to the wonderful doctors who cared for Nathan. In particular, Dr. Yoder, Dr. Beachy, Dr. Coulter, Dr. Scaife, and Dr. Riva-Cambrin. Thank you for all of your medical knowledge and all you did to help save Nathan's life and help him progress to the point that we were able to finally bring him home.

Second, to the amazing nurses, especially Ashlee, Bonnie, and Jan. Thank you for watching over our son, day in and day out. Thank you for taking care of him when we couldn't be there even those times when we could.

Ashlee, thank you for loving our boy so much and for being a great friend to Bekah every time you were on with Nathan.

Bonnie, thank you for being so proactive in Nathan's care.

And Jan, thank you for being there every Sunday night and letting us talk your ear off each week. Thank you for letting us feel like we were a part of your family.

Next, thank you to the Social Workers and the Parent Coordinator: Shawnee, Shelley, Annette, and Kathy. You guys are wonderful! Thank you for all of the great Parent Hours. We learned a lot. We appreciate your friendship.

In addition, another thank you to Piper and the other NICU graduate parents. Thank you for showing us life after the NICU!

Another thank you to Barb, Nathan's physical therapist. Thank you for teaching us how to do exercises with Nathan and how to help him try to adapt to new things. In a word, you are WONDERFUL!

From the bottom most special places in our hearts, we want to thank all those who came to the NICU to visit Nathan (and us) while he was there:

Family                                                                        Friends

Grandma R.                                                                 Amy
Grandma and Grandpa H.                                     Sharon & Russ
Aunt Sarah Beth    Janessa & Beau
Aunt Mimi                                                                   Christine H.
Aunt Katie                                                                   Jim B.
Aunt Esther & Uncle Jared                                   Katie W.
Aunt Hannah                                                               John M.
Aunt Barbara                                                              Leslie J.
Uncle Jack

Becky & Casey, thank you to you two as well. The intent was there! Not your fault Nathan had a bad day that day.

Another thank you to all those members of our local congregation who brought us dinners for the first many weeks Nathan was in the NICU. It was really, really nice to get home and not have to worry about making or finding something for dinner. While there are too many of you to name one-by-one, we want to say a very special thank you to all those who weren't bothered by the fact that our schedule was so wacky or that we usually got home between 7:30 and 8pm every night (hopefully you know who you are!).

And lastly, Thomas wants to thank his supervisors and friends at work. Brad and Garred, thank you for facilitating my having such a flexible schedule, especially during this time. My co-workers, Brittney, Heather, Melissa, and Janessa. Thank you for being so understanding and compassionate when my schedule was so not normal and you had to cover for me a lot. We really appreciate it.

And while I'm at it, thank you to my employer and those who run the company. You are a great company to work for. You certainly helped make our life a lot less worrisome during this time. I am proud to say that I work at 1-800 CONTACTS.

NICU Recollections -- Thomas

2010-03-14T19:58:00.000-07:00

Just like Bekah, I have a lot of feelings and memories of the NICU. It's hard to pick just a few things to write about.

I remember following the Life Flight team as they took Nathan in the little "space shuttle" from University Hospital across the way to Primary Children's and then having to leave him there not knowing what was going to happen.

I remember, early on, every time Nathan had a good day, that Bekah and I would sing "He had a good day" to the tune of Daniel Powder's song "Bad Day."

I remember the night Bekah called me at work to let me know that she was going to get to hold Nathan for the first time, so I left work to head up to the hospital, hoping that I would get a turn as well -- which I did!

I remember the first time Nathan smiled -- he was about 3 months old -- and I was able to get a picture of it with my cell phone.

And I remember when one of Nathan's roommates didn't make it. He was just too sick to survive.

I didn't get to go to see Nathan every day like Bekah did. Instead I tried to juggle being at work and being at the hospital the best I could. I would usually make it up to see Nathan two or three times a week on average.

One of my best and favorite memories is from early on during Nathan's NICU stay, after he had come off ECMO but was still in The Sick Baby Room. Since I didn't get to be at the hospital every day, my biggest fear became that Nathan wouldn't know who I was. That he wouldn't know that I was his dad. That I would be just another guy who came in to check on him every once in a while.

So it was always really exciting and a big relief when I would get to the hospital, Nathan would be asleep, and I could whisper in his ear "Nathan, daddy's here" and he would open his eyes and look at me!

And every time I would leave I would tell him the day that I would be back and how many days away it was. And every day that I couldn't be there, Bekah would tell him how much I missed him and that I couldn't be there that day because I had to be at work but that I would be back again in so many days and that that was only so many days from that day.

But perhaps the biggest (and for me most painful and life-altering) experience, came when Nathan was just 2-3 weeks old.

There was a time, over a few day period, when out of nowhere, Nathan's heart beat would randomly skyrocket to over 200 beats per minute (his normal awake heart rate at the time was about 150 bpm). In addition, his blood pressure would go all wacky and his blood sats would drop a little. It was really, really scary. And it happened around the same time every day and would last for about 20-30 minutes each time.

What made it worse was that we felt like we couldn't do anything to help.

On one of these days, I was sitting in a chair next to Nathan's bed when he had one of these "freak outs." I felt so hurting and helpless inside as I watched Nathan be in so much pain and trouble. He looked over to me and I could see in his eyes how excruciatingly horrible the experience was. I could read as plain as day the look in his eyes saying "Dad, please help me" and I just wanted to bawl my eyes out because I couldn't do anything to help my son.

That night after we got home, it finally dawned on me what Nathan was looking at me, pleading for me to help him, even though I felt helpless to do so. The fact of the matter was that I could help my son. I had the priesthood and could bless him. It became so clear to me that the pleading look in Nathan's eyes, even though he was only a couple of weeks old, meant that he knew that I could help. He understood the power of the priesthood. He knew the power of priesthood blessings. And he was looking to me as his father to help offer him the relief that he so desperately needed.

I felt so ashamed and guilty that I had not recognized it sooner. I felt like I had let my son down. There are few feelings worse than that.

So I made sure to be there the next day around the same time, so that I could be there to bless my son, which I did. And, quite soon, he stopped having the "freak out episodes" as we called them. It was truly a miraculous blessing for Nathan and for us, for me in particular. For me it was life-changing. To always be ready and worthy to help my son anytime he needs it.

As Bekah mentioned in her recollections, the NICU at Primary Children's is a very special place. So many wonderful doctors and nurses and other staff. So many wonderful parents. So many wonderful and precious babies. And so many wonderful trials. I don't know that many can understand "wonderful trials" unless you've been through them.

Yes, it is a special, and I would offer up sacred as well, since I truly believe that there are angels there to watch over all those little babies. To offer them love, hope, strength...and to guide the ones home who only needed to be on earth a short time.

I've said this many times to a number of different people and I'll say it again now. I hope that none of you ever have to go through anything like what we went through in the NICU, but I wouldn't trade our experiences there for anything. And I'm eternally grateful that at the end of our NICU experience, we got to bring Nathan home.

NICU Recollections -- Bekah

2010-03-09T20:13:00.000-08:00

Thomas asked me to write some reflections from our time in the NICU, so here goes.

Leaving the NICU was an exciting time. We had waited so long, and gone through so much to get to this moment, and it was finally here. I was so excited to finally begin the life I had dreamed of. I had always wanted to be a mom and to stay home and take care of my children. Four and a half months earlier I had a little boy who needed so much care, and all I could do for him was sit by his side and pray. There were so many days when I wasn't even sure if he knew or cared that I was there. I'm sure there were days when he didn't, but after a while I could tell that he knew and he cared. He knew my voice, he always liked being held, I would sing to him and it almost always soothed him. My little boy knew that I loved him, and I felt that he loved me back.

So now he would be coming home for me to love him there and while the biggest emotion I felt was certainly excitement, it was not the only feeling. Being in the hospital was so hard for so many reasons, but there would be a lot of things that became harder about being home. I had gotten used to the hospital routine and life. I was used to coming in and loving my son, and that was the extent of my responsibility. All of the things that needed to be done to care for him were technically the nurse's job. They needed to be sure that Nathan was fed and changed, that he got all of his medications, etc. They would ask me if I wanted to help and I usually said yes because I wanted to be involved in his care, but if I were holding Nathan, they would take care of it, if I needed to leave to go to the bathroom, or go pump, or eat lunch, or whatever, the nurse was there to do anything that needed to be done while I was gone. Suddenly I was going to have to figure out how to do all of these things and how to be responsible for all of these things getting done. And given that he needed to be fed every 3 hours, and had some number of medications due 6 different times a day, and he was still prone to throwing up without warning, that would be a tall order and it made me nervous.

I would also miss many of the nurses. There were many who had taken care of Nathan many times and we had become friends and I would miss them. I would miss the company. The hospital was lonely and they were my friends there; really the only people I had to talk to. Good nurses do so much more than give medical attention to their patients.

A friend asked us to talk about how we could leave the hospital each day and wasn't it hard. Yes, it was. On days when Nathan had a hard day it was terrible to walk out, I felt like I was abandoning him. On days when Nathan had a good day I didn't want to leave because it had been so good to feel good with Nathan and see him doing well. I guess the easiest days to leave were the "normal" days, meaning days when nothing extraordinary happened, but even then it was hard to say goodbye. I would have to tell myself to start leaving about 10 minutes before I actually needed to be gone, just in case. I'd stand up and give him a hug and a kiss and tell him I loved him and promise him that I would come back tomorrow. I'd give him a hug and a kiss from his dad and remind Nathan that his daddy loved him, but he couldn't come that day because he had to work. I'd tell him anything else pertinent to the day, and probably that I was proud of him and that I would call that night to check on him and that I'd see him tomorrow and I loved him. There would be one last hug and kiss and I'd walk to the door looking back and sending love and kisses through the air. You'd think it would get easier after 4 months, but it didn't. Though, I guess I became somewhat used to it, because I'm crying as I write this, which I didn't usually do then. I hated leaving him every night, but there was a certain amount of relief that went along with leaving the hospital. Because we knew we'd be there for a while, and I wouldn't be any good to anyone if I didn't take care of myself, it was important to go home every night and relax and get real sleep and rest a little. It was good and important, but it was still hard, and it never gets easier.

I guess that made coming home even more exciting. No more leaving my boy for the night. No more calling the hospital before bed to get a nurse's report on how he was doing. I was really looking forward to that.

The NICU is a special place. It's where we first got to know Nathan, what a fighter he is and how special he is. It's where science didn't think he would make it, but he did. It's where I first got to know this sweet child who won the hearts of nurses and doctors throughout the unit. So many of our firsts were in the NICU: the first time he opened his eyes, the first time he smiled, and then laughed, the beginning of physical therapy. We went through the progression of being able to hold him. At first it took 3 people to get Nathan into my arms, the nurse to pick up Nathan, the respiratory therapist to make sure his breathing tube stayed in place, and someone else to make sure Nathan's iv's didn't get pulled out. After a while we didn't need the extra assistant for his iv's. Then once Nathan was on C-PAP the nurse was enough. When I could finally walk in the room, decide I wanted to hold Nathan, and just pick him up, it was wonderful. I loved the freedom and control. I loved not needing to ask permission to pick up my own son.

I guess these reflections have been kind of random and jumbled, but so are my thoughts when they go back to the NICU. I think it stems from the survivor mentality we had. Or I'm just jumbled. :) I love the NICU and the people who work there. They gave my son a chance to live, and they took good care of him and of us. I am grateful for that unit, and the people who work there, and they will always have a place in my heart.

Going Home!

2010-03-07T21:18:00.000-08:00

As soon as we got the "All Clear," we loaded Nathan into his car seat, disconnected him from the hospital oxygen and connected him to our portable oxygen tank, hooked him up to an oxygen monitor, and headed out of the NICU.

On our way out, we stopped to take a picture for the Discharge Wall of Fame and to take a picture with our Friendly Neighborhood Spider-Man (Thomas has been a huge fan of Spider-Man since he was 5!).

After we made our way down to the first floor, a member of the hospital's Car Seat Team was waiting for us to make sure Nathan's car seat was properly installed and safe for the trip home. After everything checked out OK (she did tighten the base of the seat some), she also gave us the go ahead to leave. I don't know what would have happened had she not approved of the car seat! Thank goodness it all checked out!

Bekah then loaded Nathan into the car and we said our final good-byes to Ashlee (she had accompanied us down from the NICU).

We then both got in the car and I drove away, heading home to a brand new adventure!

Discharge Paperwork

2010-03-07T20:48:00.000-08:00

Nathan's discharge paperwork was 3 pages long!

It included information and instructions on

Nathan's feeding schedule, including how many calories he needed, how often he should be fed, and how much to give him at each feeding.
His follow-up appointments, including the doctors or clinics he needed to see (there were 6) and when he needed to be scheduled.
His list of medications (there were 12), including how much to give and how often.
Restrictions on Nathan's activity (he wasn't supposed to go anywhere public, except the doctor's office, for at least 3-6 months).
And other instructions and things to watch for regarding fevers, oxygen needs, blood pressure, issues with too much vomiting, and too few wet diapers per day.

It was a lot to take in. Thank goodness they write it all down for you!

And with that, we were given the OK to leave. We were officially discharged from the NICU!

Discharge Day!

2010-03-07T20:14:00.000-08:00

January 22, 2008, will always be one of our favorite and most memorable days -- the day Nathan was discharged from the NICU! To say that we were excited for that day would definitely be an understatement! There were times when we didn't know if we would ever see this day. But now it was finally here! When we arrived at the hospital we were extra excited to see that one of our favorite nurses, Ashlee (pictured above), was on duty and assigned to Nathan for his last day.

Now, we don't know what most people's discharge days are like, but ours was extremely long! Much, much longer than we expected, in fact. Which we found to be particularly odd since it had been planned for a week!

Anyway, the biggest hang up that day was that Nathan was still waiting for his follow-up with ophthalmology before he could be discharged. Since he had been on ECMO and had issues with hydrocephalus, the ophthalmology appointment was a definite necessity before we could leave. And they were running behind that day.

Additionally, we ran into some delay getting Nathan's prescriptions and medications (there were quite a few of them) from the pharmacy. It seems that they were backed up that day as well.

So we got to spend the morning and the afternoon reminiscing and saying good-bye to all of our NICU friends. Even though we were so excited to finally be leaving, it was also sad to be leaving at the same time. After 4 1/2 months, a few of them had become close friends and some of them almost seemed like family. So that aspect of leaving was more than a little bitter-sweet.

Then, around 4pm, we finally got the news that everything was ready and that they were ready to review the discharge paperwork with us and we could be on our way!

Staying In, Part 2

2010-03-06T19:29:00.000-08:00

As soon as we were ready, Nathan's nurse wheeled his crib into the room. And just like that, we were on our own. And for the most part, it wasn't really as exciting as you might have imagined.

Nathan's health had improved quite a bit in the 4 weeks since his shunt surgery. He had become really active and playful. He had even become really attached to one of those rainmaker sticks:

Nathan absolutely loved it! He would smile and wiggle and laugh, but without making any actual sounds! But as most parents can probably attest, you can only play with certain toys for just so long before they wear you out. Unfortunately, it seems the parents always get worn out before the kids do!

So we tried a few other things as well, but Nathan just wasn't used to moving around. He liked to lay on his back and that was about it. He didn't like to sit up, he didn't like to lay against your shoulder. He just liked to lay down. So there wasn't a lot that we could do to entertain him. Which meant that there wasn't a lot that we could do to entertain ourselves, either.

Occasionally, like when it was time to give meds, the nurse would pop in to watch us and make sure that we did it right, and to check how things were going.

A representative from Praxair, our home health care company, also stopped by and taught us how to work oxygen tanks and a feeding pump, since we would be running both of those at home.

We also had a session with one of the therapists. We tried a little oral feeding with a little bit of rice cereal. Nathan was a good sport and at least tolerated us trying, even though he wasn't overly interested in eating anything.

And then before we knew it, our time was up.

Then, for the first time, we gathered up all of Nathan's stuff that he wouldn't be needing for the trip home the next day and packed it up to take home. It was such a surreal moment. Nathan spent his first 139 days in the hospital. That's just a day shy of 20 weeks. And unless you actually stop to think about, you don't realize just how long 139 days is. It's just over 4 1/2 months!

And I have to give Bekah the utmost respect and props because she went to the hospital almost every one of those 139 days. She made it up to be with Nathan 129 of the 139 days. That's an amazing 93% of the time. And an even more amazing 12,500 miles driven between home and the hospital.

But now, finally, Nathan would be home. That would mean no more trips to the hospital. But we also knew that it would come with its own new set of challenges.

Staying In, Part 1

2010-03-04T21:11:00.000-08:00

The day or so before you get to bring your baby home from the NICU, you get the opportunity to "stay in." When you stay in, they have you stay in a room in the NICU equipped with little more than a couch/bed, a television, and a bathroom. There is also a place to park to your baby's crib.

When you stay in with your baby, it is really the first time that you get to be a "parent." You are the one who gets to care for your baby. You change all the diapers. You give all the meds. You do all the entertaining. You basically do everything you would do at home. In essence, it's the last bit of home "pre-training" you will get.

For staying in, you can either chose the day shift or the night shift. We decided to choose the day shift. That meant that we would be taking care of Nathan all by ourselves from 9am to 6pm on Monday, January 21st.

Unfortunately, the night of the 20th / morning of the 21st saw a huge snowstorm hit the area. By the time we were ready to leave in the morning, there was over a foot of snow on the ground. And the roads were not yet plowed.

But in our eagerness (and in retrospect, stupidity) we decided to go ahead and forge our way up to the hospital. Since the roads were not yet plowed, traffic was extremely slow and snarled. What is normally a 1-hour-or-so drive turned out to be a 3-hour drive that morning!

There were quite a few slide-offs and there was no clear delineation of lanes on the interstate. In fact, at one point, what is normally a 5-lane section of freeway only had 4 lanes of traffic going! Somehow 2 lanes had become one. And then a couple of miles down the road again, they had somehow once again divided.

At one point, someone from the hospital called to check on us because we were so late. We told them that we were on our way but stuck in the snow-locked traffic. Really, I don't know that the thought of NOT going to the hospital for the stay in ever even crossed our mind. We were excited to have Nathan coming home the next day and didn't want to delay it any.

However, once we were at the normal "half-way" point and had already been on the road for an hour, we thought that it was best to delay Nathan's homecoming a day if the weather was bad again the next day.

We finally arrived at the hospital a couple of hours late, but safe. Which was a relief to everyone!

Placing an NG Tube

2010-03-01T20:16:00.000-08:00

We "learned" how to place an NG tube by watching one of the nurses. Then it was our turn. Before Nathan was to be discharged, we were each supposed to place an NG tube 3 times in order to be able to check it off the list.

Lucky Bekah got to go first, or more likely I volunteered her to go first. So she was going to place the tube with help and coaching from the nurse, while I watched and "learned" some more.

And for her first time, it didn't go well at all! She had to try twice because the first time it either got stuck or it tried to go down the trachea. So poor little Nathan was gagging and choking. So they pulled the tube all the way out to let Nathan have a little rest and calm down. Then he was so upset and gagging that he threw up 3 times. And that made Bekah start crying. But she had to keep her composure the best she could because she had to try again in a few minutes. Meanwhile I felt so bad for both of them that I couldn't watch and had to look away.

After several minutes, Nathan finally calmed back down. Bekah then tried again and, thankfully, the tube went right down that time. Ugh! What a day!

Bekah was lucky enough to get to try again in a couple of days. This time they decided to empty Nathan's tummy before trying to put the tube down. This time there was still gagging, albeit considerably less, and no puking at all! So Bekah was definitely making progress.

And as the old saying goes, the third time was the charm. Bekah was able to get the tube down the third time without any complications. Whew! So apparently it does get easier with each try!

But that meant that it was then my turn. And I was completely dreading it. I'm sure that Nathan probably wasn't looking forward to it much either, having already had a tube stuffed down his nose every other day.

So I did some combination of praying and psyching myself up when it was my turn to place the tube. After I lubricated the tube, I eased it up Nathan's nostril and....and...and I couldn't find the hole into the nasal passage. So basically I just ended up poking Nathan in the the inside of the nose about half a dozen times! He was just crying and crying and I felt like a child abuser!

The nurse helped me finally find the passage and I was able to move the tube down into the throat fairly easily. But that's when it curled, probably because Nathan was crying so much. As he was crying, I could see the tube in the back of his throat and that was it. I was done. I pulled the tube all the way out and let everyone know that there was going to be no way that I was going to be able to do it now or in the future.

Placing the tube was going to be something that had to be Bekah's responsibility. I would do whatever she needed from an assistant, but there was just no way that I was going to be able to place an NG tube. EVER!

Learning to Place an NG Tube

2010-02-28T20:17:00.000-08:00

One of the most important things we had to learn before Nathan could be discharged was how to place a Nasogastric (NG) tube. The NG tube is a soft, thin tube that is inserted up the nostril, into the nasal cavity, down the esophagus, and into the stomach.

Before inserting the tube, you must first measure it to ensure that you have the proper length. The tube is measured from the tip of the nose to the ear and then down to the xyphoid process. A mark is then made at that spot so that when the tube is inserted you will know how far it needs to go to reach the stomach.

The tip of the tube is then lubricated and then inserted into one of the nostrils. You should aim the tube down and back as it is moved through the nasal cavity and down into the throat. There may be some gagging at this point, but you're supposed to just keep moving it down. Just make sure to be careful that you don't put it down the trachea and into the lungs! Once it enters the esophagus, though, it should be easily maneuvered into the stomach.

Once you've inserted the tube, you then need to check to make sure it's actually in the right place. To check placement, you fill a 5cc syringe with air, place a stethoscope on the child's tummy, and shoot the air in short bursts into the tube. If it's in the correct place, you should hear a swoosh of air or gurgling or bubbling in the child's tummy.

You can then pull back on the syringe and if the air comes back out (along with stomach juices) that's another good sign that you've got it in the right place!

Sounds easy enough, doesn't it?

So Much To Learn and Do

2010-02-27T21:05:00.000-08:00

With Nathan doing very well on less than a liter of oxygen and with the feeding tube question resolved, the only thing we were waiting for now was to hear when we would be able to take Nathan home. That news came on January 15th: if all went well we would be bringing Nathan home in one week! They jokingly cautioned us not to say it too loud though or we might jinx it.

The thought of finally bringing Nathan home was both very exciting and completely scary! There was so much to do and so much to learn before Nathan came home. We had to learn how to run an oxygen system and a feeding pump. We also had to learn infant CPR, learn how to give medications, and learn to place the NG tube, and a variety of other odds and ends. The nurses actually kept a checklist of everything we needed to learn and would mark them off as we learned them.

In addition to everything we had to do and learn, Nathan also had quite a bit to have done before coming home. Both a hearing test and an eye exam are standard procedure before being discharged. A car seat test is also standard procedure. For the car seat test, the nurse will put your baby in his or her car seat, strap them in, and basically see if they can handle it. The baby must be able to handle being in the car seat for at least as long as the trip home is going to be. So Nathan needed to pass the car seat test for at least an hour.

We also hoped to try and clean the house as much as possible before Nathan came home. And not just a once over, but a good deep cleaning. We didn't want Nathan to get sick just because we didn't dust the entertainment center or wipe off the counter.

So there was a lot to do in a week. And thinking about everything all at once was quite overwhelming. But the nurses were going to guide us through the checklist one-by-one to make sure we got it all in.

Deciding How To Feed Nathan

2010-02-25T20:44:00.000-08:00

Nathan did very well on the low-flow oxygen system and they had him down under a liter in just a few days. That meant that we were very, very close to coming home! The biggest decision we faced at this point was how we were going to feed Nathan once we got home.

Almost all babies are born with a very strong, natural urge to suck. It is known as the sucking reflex. A reflex is a movement or reaction that is performed involuntarily or automatically in response to a stimulus. In other words, you do it without needing to think about it. For newborns, the sucking reflex is initiated when something (finger, pacifier, nipple) touches the roof of the their mouth. Around 2 or 3 months, the sucking reflex fades and the baby's ability to suck becomes a conscious effort rather than a reflex.

Since Nathan spent 10 weeks on the ventilator, he missed out on the opportunity to develop his sucking reflex into a conscious effort. Since he never developed the skill while sucking was a reflex, he never learned to eat. So all of his feedings in the NICU were done through a nasal-gastric (NG) feeding tube. It ran up his nose and down his throat and into his tummy.

The big question we faced now as Nathan was getting ready to come home was if he would come home with the NG-Tube or if he would have a Gastrostomy Tube (G-Tube) placed. The G-Tube is surgically placed directly through the abdomen into the stomach.

Nathan's NICU team consulted with Dr. Scaife, the surgeon who had performed Nathan's hernia repair surgery, to see what he recommended as a course of action. Dr. Scaife decided that it would be in Nathan's best interest to wait a few months for a G-Tube. Since Nathan's body was still small and he had already been through so many surgeries (7 if you're counting at home), the doctor wanted to give Nathan's body a chance to rest, recover, and get stronger.

So that meant that Nathan would be coming home with an NG tube!

Learning To Be A Proactive Parent

2010-02-21T22:54:00.000-08:00

As the time drew closer and closer for Nathan's discharge from the NICU, we became more and more proactive in Nathan's care. The only thing really keeping Nathan in the hospital at this point was his need for extra oxygen support and training that we required on how to care for Nathan once he was home.

At this point Nathan was still on a high-flow oxygen support. When a patient is on high-flow, the nurse or doctor is able to control both the rate (the amount of supplemental oxygen support being given in liters per minute) and the percentage of oxygen (vs. "room air") that the patient receives through the nasal cannula.

So for example, Nathan was on 2 liters of support with a mixture of 50% oxygen and 50% room air. It seems that protocol is to wean the percentage of oxygen to at least 30% before they start to lower the rate. However, in Nathan's case, when they tried to lower the percentage, he did not tolerate the change. So they would raise the rate to compensate for the change in percentage. Then when they tried to lower the rate, they would have to raise the percentage again. It was very, very frustrating and seemed like a never-ending battle.

And in my head it seemed entirely illogical. We had been told that Nathan could come home on a low-flow oxygen system. On low-flow, you are unable to adjust the percentage of oxygen being given. It is always 100% pure oxygen. The only thing you are able to adjust is the rate.

So in my head, it seemed entirely logical that we should put Nathan on a low-flow system at 100% oxygen and then just work down the rate of support. And for Nathan to be able to come home, that rate needed to be less than 1 liter. Ideally, they wanted it to be around a 1/2 liter.

So I mentioned my brilliant plan to the day nurse. Unfortunately, she wasn't one of Nathan's regular nurses and didn't respond as favorably as I was hoping. She just said that she would leave a note for the doctor about it. As you can probably guess, I was more than disappointed in her reaction. I was expecting her to agree that it was a brilliant idea, call for the doctor, for him to agree that it was brilliant, and then for the change to take place.

Since that didn't happen, we decided to wait until the night nurse came on and try again! The night nurse, Bonnie, happened to be one of Nathan's primary care nurses, and one of our favorites. So believing that we would get a better response from her, I brought it up again, going over Nathan's ups and downs on the high-flow and our idea with the low-flow.

Cha-ching! Bonnie, agreed that it was a great idea and worth trying. So within an hour or so, she had contacted Dr. Yoder, who agreed that it was worth a try. So within a couple of hours Nathan was on low-flow and doing great!

We Finally Get A Pediatrician!

2010-02-21T18:43:00.000-08:00

Since Plan B was far less effective than I imagined it would be, we had to keep looking for a pediatrician for Nathan. So we decided to once again check with a couple of our friends for information and insights on their pediatricians.

We didn't know by when we were supposed to have our pediatrician, but it was probably better to have it sooner rather than later. But after the letdown with not getting Dr. Cornish, the decision kept being harder than it probably should have been. So we decided that when they brought it up again, we would mention our difficulties and ask if they had any recommendations.

Almost as soon as we decided this, one of the nurse practioners asked us if we had selected a pediatrician yet. We explained our plight to her and she replied that they probably had a list that we could look at. So we thought that that was a pretty good idea.

After about an hour, she returned and said that after a considerable amount of begging and groveling, Dr. Cornish had agreed to be Nathan's doctor! We were both entirely shocked and pleased at the same time. She informed us that we were to call and schedule an appointment when we knew when Nathan was supposed to be discharged.

Wow! After so much disappointment and struggle in finding a pediatrician, our problem was fixed just like that. It was amazing. And we got the doctor that we wanted. We were so grateful and happy and excited all at once.

Now, what did we need to do to get Nathan home?

Plan B

2010-02-20T08:20:00.000-08:00

We were really, really disappointed when we found out that Dr. Cornish wasn't accepting new patients. But I wasn't quite ready to give up on this option just yet. So while Bekah was going to check into the doctor at the practice who was accepting new patients, I had come up with what I considered a brilliant plan.

I decided to email Dr. Rope and tell him that we appreciated his recommendation and then explain the situation with Dr. Cornish not accepting new patients and ask if he knew of any other pediatricians in the area that he might also recommend.

The way I envisioned Plan B in my head, upon receiving my email, Dr. Rope would feel some sort of pity for us and then contact his good friend, Dr. Cornish. Dr. Rope would then tell Dr. Cornish about Nathan and all he's been through and how he would make the perfect doctor for Nathan. Dr. Cornish would then feel an intense amount of compassion for us and agree to be Nathan's doctor. Dr. Rope would then let us know that Dr. Cornish had accepted us as a new patient. And voila! We'd have our pediatrician!

I'm sure you will agree that this was an ingenious plan.

Unfortunately, reality didn't match up with my Plan B. Dr. Rope simply replied that he didn't know anyone else in the area and wished us luck.

Humph! That didn't go according to plan at all! Strike two. So we were still without a pediatrician and were now up to Plan C.

Looking For A Pediatrician

2010-02-19T20:46:00.000-08:00

As soon as we started looking, we realized that we really didn't know anything about finding a pediatrician.

We knew we wanted someone who was familiar with the things that Nathan had been through and could help us as we moved forward. But we had no idea where to find such a doctor.

Since we didn't know where to start, we decided that it would be better to have a recommendation on a doctor instead of taking our chances googling pediatricians in our area. So we asked a few friends with young children their opinions of their pediatricians.

At this same time, Nathan was having a genetic study done by Dr. Alan F. Rope to determine if there were any genetic issues involved in any of Nathan's medical problems. Dr. Rope asked us if we had selected a pediatrician yet, to which we replied that we hadn't but that we were looking. He asked if we minded if he made a recommendation, which of course we did not.

In a couple of days when Dr. Rope had finalized his report (which showed that Nathan had no genetic problems), he included the recommendation of Dr. Matthew J. Cornish as Nathan's pediatrician.

After reading Dr. Rope's report, Nathan's NICU doctor, Dr. Yoder, asked if we had gotten Dr. Cornish as our pediatrician. We commented that we had not yet, but that it was only a recommendation from Dr. Rope. Dr. Yoder said that he was acquainted with Dr. Cornish's father, who was also a doctor, and that the younger Dr. Cornish would be an excellent choice for Nathan's pediatrician.

Since we so highly valued Dr. Yoder's opinion, we decided that it would be a supremely good idea to check into Dr. Cornish. So we went to his practice website and read his bio:

"Dr. Cornish practices in our Orem Timpanogos Office. His practice interests include caring for children with special healthcare needs, acute care management, longitudinal care, and clinical and quality research. He was raised in the military and traveled extensively until his family settled in Georgia. He is fluent in Spanish. He loves watching his children grow, those at work and at home. His hobbies include playing the organ, volleyball, gardening, cooking, and golf."

From what I read, I was convinced that Dr. Cornish would be the perfect choice as Nathan's pediatrician. It was like Divine Providence had once again smiled upon us. And as a major bonus, he was also a graduate of the same University as both of us. Can't go wrong with that!

So the next day, Bekah called Dr. Cornish's office to inquire about Nathan becoming a patient. Unfortunately, the receptionist informed her that Dr. Cornish was no longer accepting new patients, but that this other doctor was and asked if we would like to schedule an appointment with him. Somewhat stunned, Bekah informed her that she would need to check with me and get back to her.

Well, that definitely wasn't Divine Providence! My first thought was that it was highly disappointing. My second thought was that they should put things like that on their website so that I don't get my hopes up.

So after all that, we were still no closer to finding a pediatrician than we were a couple of day before. And now, we had to come up with a Plan B.

The Golden Question!

2010-02-16T19:44:00.000-08:00

Since Nathan was responding so well to the shunt, the only thing keeping Nathan in the hospital now was his need for extra oxygen and breathing support. He was still on high-flow nasal cannulas, but the amount of support he needed was decreasing day by day.

So we knew we were getting closer and closer to the day that Nathan would get to come home, but we didn't know exactly how close we were. So we were complete caught off-guard when Nathan's doctor asked us if we had selected a pediatrician.

Have we selected a pediatrician? That's the Golden Question! You know that you are really, REALLY getting close to coming home when they ask you that question! So we were really, REALLY excited to hear them ask that, but as we mentioned, the question took us totally by surprise.

Honestly, finding a pediatrician hadn't even crossed our minds yet, so we asked if it was time that we find one. To which the doctor replied that it would be a good idea. So that went to the top of our "To Do" list.

To many, not having selected a pediatrician may sound extremely odd. But since we never knew when Nathan was going to be coming home, not looking for a pediatrician was part of our survival technique.

Our strategy for so long had been to take one day at a time. If Nathan had a bad day, then we hoped that the next day would be better. If Nathan had a good day, then we hoped he would have another good day after that.

But now our mind set could finally change. Even though we didn't have any type of specific date when Nathan would be coming home, it was now a tangible thing that we could look forward to. And it is really hard to put into words how WONDERFULLY INCREDIBLE that feels!

Therapy...For Nathan, Not For Us

2010-02-15T21:00:00.000-08:00

When Nathan was a couple months old, we started doing very, very minimal amounts of physical therapy with him. Nathan's therapist, Barb, would teach us "exercises" that we could do with him to help strengthen his arms and legs and help give him a wider range of motion. It mostly consisted of stretching his arms and legs a little bit and doing things like "bicycles," "running," "jumping," and "dancing." Basically, we were just trying to get Nathan's legs and arms used to moving and help him gain more strength.

As he got older and healthier, Barb had started us doing additional forms of therapy. We would place Nathan in a bouncy chair, try to get him to play with things, and practice sitting up. Unfortunately, the bout with hydrocephalus had partially derailed therapy a bit. But once the shunt was in and Nathan was so much more social and active, we began working at therapy again.

Two of our main objectives was helping Nathan get stronger and helping him learn to deal with new positions. Of his 4 months in the hospital, Nathan had spent the vast majority of the time laying on his back. So naturally his muscles were very, very weak.

He had a really rough time holding his head up or even supporting his weight at all. And when we would do leg exercises with him, he wouldn't provide any resistance or push back, although he had recently discovered that he could kick with some proficiency.

Additionally, positions other than laying flat on his back were very, very scary for Nathan. He didn't care to sit up, and tummy time was completely out of the question. He didn't even like to be held up against his mommy's shoulder. He only liked to be held in the standard cradling position.

So we all had a lot to learn and to work on.

Keeping Sane

2010-02-14T19:45:00.000-08:00

As the calendar turned to a new year and we reached the 4 month mark, we were hopeful that our time in the hospital was about to come to an end.

As we've mentioned before, we never thought Nathan would be in the hospital this long. And it was taking it's toll on us both physically and emotionally. So we've decided to combine a couple of posts that we had originally decided to do separately and talk about how we stayed sane through it all.

Looking back now, there were 3 things that helped to keep us sane:

1) Before we had even spent a day in the hospital, we made the decision that we couldn't let "the situation" dominate our lives. As hard and as painful as it might be, we knew that we had to be the ones in charge of our lives. With so many unknowns and a lot of uncertainty, especially in the beginning, we knew we had to maintain a certain about of control and stability over whatever aspects of our lives that we could.

So we decided that we would come home every night so that we could be in our own home and comfortably sleep in our own bed. We decided that it was important to go to church with our own congregation instead of attending the services at the hospital. And I tried to work as much of a normal schedule as possible.

So even with so much out of our control, if we could stay in control of these little things, it would go a long way to making sure that everything didn't completely overwhelm us.

2) The second lifesaver on our list has to be the NICU Parent Hour. Every Wednesday at lunchtime, the Parent Coordinator and the NICU Social Workers would host a get-together for the NICU parents. We would have lunch, play games, have some type of informational training, and socialize with other parents.

Parent Hour was very, very therapeutic for us. First, it was nice to socialize with other parents who were going through similar experiences as yours. At the same time, though, and this may sound entirely weird to many of you, but it was very relieving to hear other parents describe why their babies were in the hospital and hear of their difficulties and think, "Oh, I'm glad that's not me."

Additionally, every few weeks, a group of three NICU graduate parents would come and share their lives with us. They would talk about what caused their children to need to be in the NICU, how long they had to stay, and life after the NICU. And their kids were now older (maybe 5 or 6 years old at the time), so they could talk about continued trials and things they had to deal with as their kids continued to grow up.

And, we became really, really good friends with the social workers. Shawnee, Shelley, and Annette were just amazing. While we were having such difficulties at home not feeling like we had any friends or that anyone really understood what was going on in our lives, these women were our lifesavers. They befriended us and really cared about us. And it really helped to fill a void we were feeling.

And occasionally, we would win a raffle prize. The first prize we ever won was a Fisher Price aquarium that grew to be, along with his blanky, one of Nathan's bedtime necessities.

3) And finally, and most importantly, we remembered that we had each other. A number of people commented to us that situations like the one we found ourselves in were often make or break experiences for couples. In other words, the added pressures and stresses of having a baby in the NICU can either work to strengthen a marriage or destroy it.

So we worked really hard to remember that we weren't only Nathan's parents, but that we were still also each other's spouse. We focused on helping each other during the hard times. It was important to be strong for the other, even when you didn't feel like being strong.

We still told each other jokes and laughed when they were funny. And we really, really laughed when they were really, really funny. And sometimes we laughed even when they weren't.

And most importantly, we remembered we loved each other. We remembered why we got married. We remembered what brought us to this point. And we remembered that our family was an eternal family, regardless of whatever happened.

Night And Day Difference

2010-02-14T09:09:00.000-08:00

The surgeon scheduled Nathan for a CT scan the day after surgery to make sure that everything was in the right place, which it was. So that meant that we were just waiting for the effects of the shunt to "kick in" so to speak. And that started to happen a couple of days after surgery.

By Friday, Nathan's eyes were starting to clear up and look normal again. The shunt was also very visible now as it bulged from under his skin, which meant that his head was less swollen, also a good sign. And with each passing day, Nathan was becoming more focused, more alert, more playful, more social, and more happy.

In addition, he also began doing new things that he had never done before. He had started playing with his tongue -- sticking it out and rolling it -- and had also started sticking his hand in his mouth. In other words, he was doing things that babies do. Which was really, really super exciting for us. After nearly 4 months, we were starting to actually feel like we had a baby, and not just a hospital patient.

So it was obvious that the shunt was working and that it was the right choice for Nathan. We didn't know why we had felt so uneasy about it because it was obviously such a benefit for Nathan.

Post Shunt Surgery

2010-02-13T19:11:00.000-08:00

When we made it back to Nathan's room, he was already there. And to our surprise, he was ORANGE!

The most challenging complication of shunt surgery is infection. So to reduce the likelihood of infection, the patient's skin is cleaned with a topical disinfectant. In our case, Nathan's head, trunk, and abdomen were lathered in Betadine, making him look like an orange smurf! I wish we had a picture of it, but our camera broke just before Christmas.

Additionally, he had three bandages on his body. One on the top of his head, one behind his left ear, and one next to his belly button.

Other than that, there was no noticeable change yet. His eyes were still a little freaky and his head was still a little big. I don't know that we were expecting an immediate change, but we were certainly hoping for it.

Mostly, we were relieved that the surgery was finally over. We were very hopeful that this would be his last one and that we could just keep moving forward and come home soon.

Shunt Surgery

2010-02-12T20:45:00.000-08:00

We awoke early on the day after Christmas so that we could get to get to the hospital in time to be with Nathan for a little while before surgery. His eyes were starting to freak out again and he had become tired and sleepy all the time. So we were relieved that this day had finally come.

Nathan's surgeon was Dr. Jay Riva-Cambrin. Dr. Riva-Cambrin attended medical school at the University of Alberta, did his residency at the University of Toronto, and did a Fellowship at The Hospital for Sick Children, all in Canada.

He had been the one who had been following and checking on Nathan nearly every day for the past 3 weeks. So we were very confident that he was familiar with Nathan and his situation and that he was more than qualified to take care of our boy and do a fantastic job with the surgery.

But, and I am ashamed to say this now, I wasn't too fond of him the first few times we met him. At first he wanted to do surgery on Nathan to install a shunt, but we didn't want Nathan to have a shunt. Then when we realized that the shunt was probably the best way to go, Nathan had somewhat stabilized and he didn't want to do the surgery unless Nathan absolutely needed it.

So, for our part, it was a little bit of a rocky relationship at first. Looking back now, with tons of experience and retrospect, we realize that Dr. Riva-Cambrin really did have Nathan's best interests at heart. In clinical terms, which can be hard to understand for a nervous and loving parent, Nathan barely needed a shunt. But in our terms, it was an important step in improving Nathan's health and enabling him to be able to come home.

Normally, when you go in for a planned surgery, the surgeon will let you know about how long the surgery should take. A shunt surgery normally takes about an hour and a half. But once you reach the magic "supposed to" time and the surgeon has yet to reappear to let you know how the surgery went, you start to worry about every complication, real or imagined, that could possibly happen.

So we were extremely relieved when Dr. Riva-Cambrin finally reemerged to let us know how that everything went well. When placing the distal (draining) end of the shunt, the surgeon makes an incision in the tummy to help get it in the right place. Nathan's surgery took a little longer than normal because of Nathan's huge scar from the hernia repair surgery. So the doctor had to kind of work around it and make a bigger incision than he normally would. But he got it in place and Nathan was doing very well.

As we were speaking with Dr. Riva-Cambrin, a nurse was taking Nathan back up to the NICU, where we would be able to see him again.

Christmas

2010-02-08T21:41:00.000-08:00

After much anxiety and waiting, the neurosurgeon finally decided that Nathan would indeed need to have a shunt installed. We were on board with that decision, but with the weekend at hand and Christmas on the coming Tuesday, Nathan wasn't scheduled for surgery until the day after Christmas.

So we spent a long, long weekend along with Christmas Eve and Christmas Day at the hospital. As with Thanksgiving, Christmas was a very, very, lonely holiday.

We spent Christmas Eve at the hospital. And it was a lot more lonely for me than for Bekah. Before we knew that our baby was going to be so sick, we had originally planned on spending Christmas with her family in California. But since we were unable to do that, they decided that they would come and spend some time with us. They were scheduled to arrive on the 27th.

But in my family it is custom to spend Christmas Eve at my grandparents' house eating, playing games, opening presents, and having fun. So knowing that all my family was together without us, just added to my misery.

Christmas Day, however, was a little better. We slept in, opened the presents we had gotten each other, and just tried to enjoy the day as best we could. We then drove up to the hospital and spent the evening with Nathan, which was always nice. Santa had even visited him that morning and brought him a stocking full of goodies, including a little stuffed teddy bear dressed up like a surgeon, which we thought was very appropriate.

We then came home so that we could get some sleep before Nathan's big surgery day.

Exhausted: Emotionally, Physically, Financially

2010-02-07T17:52:00.000-08:00

At this point, Nathan had been in the hospital for 3 1/2 months, which is considerably longer than we had originally expected. With the average hospital term for a CDH baby being 6-8 weeks, we were now in the 16th week--twice as long as average.

Granted, Nathan had probably been through a lot more than your average CDH patient, which only served to weigh on us even more. In just over 100 days since being born, Nathan had had 5 surgeries, 4 attempts to come off the ventilator, 2 near-death experiences, 1 failed Cath Lab procedure, and a bout with hydrocephalus.

And now, at this point, with the uncertainty of the hydrocephalus, there still wasn't an end in sight. We didn't know if we were still going to be in the hospital for another 2 weeks or another 2 months. It was very frustrating at times, but most of all it was just plain exhausting emotionally.

The lows were so low and the highs so relatively high in comparison, that they combined to make one heckuvan emotional wrecking ball of a roller coaster. And it wasn't even over yet. We were still dealing with hydrocephalus.

In addition, I had been working as much of a full schedule as possible while still trying to make time to visit Nathan 2-3 times a week. Sometimes that included working early or working late. Bekah on the other hand tried to be at the hospital every day. To try and make everything work, that meant that sometimes we wouldn't get home until 8, 9, 10, or 11 at night. And over the span of Nathan's time in the hospital, it was physically taking a toll on us as well.

And to top it off, we were almost out of money. With Nathan being in the hospital so much longer than we ever anticipated and with gas prices being what they were at the time, it meant that we had so many more travel expenses than we ever imagined either.

The extra expenses had caused us go through nearly our entire savings. Even with an approaching pay day, I had no idea how we were going to be able to pay all of our bills. With a mortgage payment, car payment, two student loan payments, as well as the phone bill, water bill, and gas bill, there was just too much. There was no way that we were going to be able to pay them all.

It was something that I worried over day and night and night and day. And Bekah worried over me because she knew that it was a very heavy additional burden that we had to carry.

We knew that help was available from the Church to get some type of assistance, either help with groceries or some other type of assistance, but we didn't know how to ask or how to bring it up. And none of the leadership from our local congregation ever really asked how we were doing or if we needed anything. They had never been to visit us at home and they had never been to visit Nathan in the hospital. We knew that they were aware that Nathan was still in the hospital, but they never did anything about it.

So as far as we knew, we were on our own. So all we could really do was pray.

So considering that we hadn't told anyone of our severe financial difficulties, we were incredibly surprised when, miraculously, we received timely and ever-so-helpful donations from Bekah's grandparents and aunt and uncle. Additionally, my parents and brothers also were kind enough to give us some needed "Christmas" cash.

All together, it was really a life saver. With everything else going on with Nathan, it was really relieving to not have to worry about finances...at least for another month.

Priorities

2010-02-07T09:16:00.000-08:00

As great and exciting and joy filled as Monday was, Tuesday had us worrying again.

By Tuesday morning, Nathan had started to present with symptoms again. And by Thursday, he really wasn't looking very good. So we began to worry, which led us to start to re-evaluate our position.

What was more important? Really, what was most important?

After much discussion, we determined that Nathan being well enough to come home was the most important. And once we had our priorities straight, we realized that Nathan was not extremely comfortable and that he was going to have a hard time progressing much until the situation with the hydrocephalus was resolved.

So we did an about face and decided that it was in Nathan's best interest to have a shunt installed.

Unfortunately, the neurosurgeon didn't quite agree with us. In the medical view of things, at this particular point in time, Nathan needing a shunt was very, very borderline. And since a shunt is a lifetime commitment, he didn't want to do anything unless it was absolutely necessary.

So that left us feeling...well, we didn't quite know how to feel. We either needed Nathan to get better, or we needed him to get worse. That made it really hard to know what to pray for. We had been praying so hard for Nathan to get better without the shunt, that now it seemed so wrong to pray for him to get worse so that he could have the surgery.

So we decided to pray for whatever was in Nathan's best interest and whichever option would bring him home quicker. We felt that that way, it was entirely in the Lord's hands. And He had never let us down.

And The Verdict Is...

2010-02-06T14:24:00.000-08:00

We knew that Nathan didn't need to be completely healed over the weekend. But rather he needed to be making good, forward progress in order for the surgery to be canceled.

Over the weekend, Nathan looked really good. His eyes were looking a lot better and he was acting a lot more comfortable. So we were really optimistic going into Monday, when the neurosurgeon would come and re-evaluate him again.

On Monday morning, the surgeon stopped by and examined Nathan. He noted that Nathan's head growth had stabilized, that the soft spot on his head was soft again, and that his eyes were looking considerably better.

Based on those assessments, he deemed surgery unnecessary as long as Nathan continued to show good forward progress! He indicated that they would continue to monitor Nathan, but that hopefully he would continue to get better.

As soon as the surgeon had left, Bekah and I did a subdued celebration dance and called our parents to tell them the good news.

We all felt so relieved and so grateful! Our prayers had been heard and answered! We had been extended an incredible blessing of mercy. There really aren't words to express the type of gratitude that swells inside your entire heart and soul. You just know that Heavenly Father understands the feelings and doesn't require you to express words. Just to know that you are so thankful for the blessing received.

United In Prayer

2010-02-05T21:11:00.000-08:00

Over the next few days, we tried to pray more sincerely, more earnestly, more devotedly, more humbly, more anything we could think of. We were really hoping that Nathan would not require surgery, but that he would be blessed to be able to get well enough without it instead.

In addition to prayer, we also looked for solace and hope in the Scriptures. It was there that I came across this verse:

"And, as it is written--Whatsoever ye shall ask in faith, being united in prayer according to my command, ye shall receive." (Doctrine & Covenants 29:6)

After reading that passage, I felt inspired that in order to most effectively exercise our faith that we needed to be "united in prayer."

I discussed my feelings with Bekah and she agreed that it was a good idea. Our plan was to invite our families to join us in prayer on a specific day at a specific time. We chose Friday, December 14th at 8pm as the time that we would unite in prayer.

So we called our parents explained our plan to them and invited them to participate. They eagerly accepted. We also invited our brothers and sisters as well. Soon the invitation was extended to grandparents and other family members as well. We also invited a few of our closest friends to participate as well.

But to our surprise, as our families would comment on the event to their friends, they would ask if they could also participate with us. And some of them would comment to their friends who also wanted to pray with us. The response was completely amazing! More than we could have ever imagined!

At one point I estimated that we had at least 50 people that had expressed their desire to join us in prayer. The group stretched across several states and numerous religions. Family, friends, and strangers were excited to unite in prayer with us on Nathan's behalf.

And as exciting as the whole idea of it was, the actuality of the whole thing hit me when one of my mother's friends who had asked if she could participate with us commented, "Can you imagine all those prayers going to God about the same thing at the same time?"

It was actually quite overwhelming to think about!

So on Friday night at 8pm (we had people adjust the time they prayed based off of the time zone they lived in to ensure that we were all praying at the same time) we knelt in prayer for our son.

Bekah and I each prayed individually and then joined in prayer as Nathan's parents. After the prayer, a very peaceful feeling came over us. We felt good. We felt uplifted. We felt very, very grateful.

Surgery Postponed

2010-02-04T19:19:00.000-08:00

Sometime late Sunday night or early Monday morning, Nathan spiked a fever. Lab tests showed that he had a urinary tract infection. Because of the infection, Nathan's surgery had to be postponed for a few days.

And actually, we were very, very, VERY relieved that Nathan's surgery had been delayed. We had been feeling very uneasy and nervous about the shunt. Since Nathan had contracted a UTI, which is extremely rare in boys, we wanted to believe that this was possibly Divine Intervention. We really, really wanted to believe that Nathan wouldn't need the shunt.

In our souls, we knew that God is a God of miracles. We knew that if the fluid was able to start flowing normally again, then Nathan would be able to avoid the surgery all together. And we believed with our whole hearts that God was able to dissolve or remove or unblock or do whatever was necessary to fix Nathan's condition so that he wouldn't require surgery.

So we decided to pray really hard over the next few days that Nathan wouldn't need the surgery to get better. And we hoped equally hard that Heavenly Father would recognize our faith and grant us another miracle.

A Shunt

2010-02-03T20:35:00.000-08:00

By Sunday, the neurosurgeon had decided to go ahead and install a shunt to help drain the excess fluid from inside Nathan's brain. His head had taken a big jump in size and his eyes continued to be unfocused and sunsetting.

A shunt is a mechanical device designed to transport the excess cerebrospinal fluid (CSF) from the ventricle to another place in the body, bypassing the blockage. It is then absorbed by the body into the bloodstream just as it normally would be.

A shunt has 3 components. The first portion of the shunt is a small narrow tube called the shunt catheter. It is surgically implanted into either the left or right ventricle above where the blockage has occurred. To implant the catheter, a horseshoe-shaped flap is cut into the scalp on the top of the head. A small hole is then drilled into the skull and the catheter is then placed into the ventricle.

The catheter is then connected to a valve or "pump." The valve controls the amount of fluid to be drained from the ventricle. The pump is connected to a flexible tube that is tunneled under the skin to behind the ear, where another small horseshoe-shaped incision has been made.

The distal, or draining, end of the shunt is then tunneled under the skin down the neck and to the point where the excess CSF will drain and be absorbed by the body. The preferred absorption site is usually the abdomen. Shunt placement in the abdomen is called a ventriculoperitoneal (ven-TRICK-you-low-pair-it-toe-NEE-ul) or VP shunt. The peritoneal cavity is the area in the abdomen between the digestive organs and the abdominal wall.

The neurosurgeon wanted to go ahead with Nathan's shunt surgery on Thursday, December 13th.

Diagnosis: Hydrocephalus

2010-02-02T21:20:00.000-08:00

The ultrasound of Nathan's head revealed that the ventricles inside his brain were enlarged, nearly 10 times their normal size.

Inside your brain are four ventricles. They are filled with cerebrospinal fluid (CSF). The CSF bathes and helps cushion the brain and the spinal cord from the bones that encase them. It is constantly produced by the body every day

In a normally functioning system, CSF is continuously circulated through the brain, its ventricles, and the spinal cord. A small quantity is housed in the ventricles. The rest is continuously drained away, primarily into the circulatory system.

If someone has a blockage in one of the ventricles, the CSF is unable to drain properly and begins to accumulate in the ventricles. This condition is known as hydrocephalus. It is commonly called "Water on the Brain," but that is quite a misnomer as the fluid is not water and the ventricles where the fluid is accumulating are inside the brain, not on it.

As more and more fluid begins to accumulate in the ventricles, they expand, pushing the brain outward, compressing it into the skull. However, in infants, their heads typically begin to enlarge increasingly as the pressure from the increased fluid causes the individual skull bones--which have yet to fuse--to bulge outward at the juncture points.

Another medical sign of hydrocephalus in infants is a characteristic downward gaze, with whites of the eyes showing above the iris, as if the baby were trying to examine its own lower eyelids. This condition is referred to as "ocular sunsetting" as the eyes look similar to the sun as it sets into the ocean, and is what Nathan was experiencing.

To try and get a better picture of the inside of Nathan's head and to see if they could determine the cause of the hydrocephalus, they scheduled him for an MRI. The MRI didn't really provide a whole lot of new information, except to show that there was a blockage between the third and fourth ventricles.

No one could say how or when the blockage occurred, but they thought that it seemed most likely to have happened following Nathan's bad day in the Cath Lab, which only gave me more cause to understand why I dreaded that procedure so much.

Since the results of Nathan's MRI came back late on a Friday afternoon, the neurosurgeon who had been assigned to Nathan had gone home for the weekend. So we wouldn't have any additional information or a plan of action until Monday.

But Nathan's primary care doctor in the NICU informed us that there were three likely courses that could take.

1) Do nothing yet. Wait and see what happens.

2) Put in a reservoir to drain off fluid daily.

3) Put in a shunt to drain the fluid into his abdomen.

The whole of this news was a major blow to us. We had been so hopeful and optimistic about being home by Christmas. Now those plans were in jeopardy now. Why did there have to be such a huge setback? Was Nathan going to be OK? Were we ever going to get out of here?

It was going to be a long weekend...

Okay...So There Is SERIOUSLY Somethig Wrong With Nathan's Eyes...

2010-01-31T21:11:00.000-08:00

As Nathan continued to come off the narcotics, we expected that the freaky, bugged-out eye thing he had been experiencing would just go away. And it seemed to for a little while. But now, more than a month after surgery, Nathan eyes started doing some seriously freaky, scary things.

First, every so often his eyes would just start vibrating. It was as if he had no control over it, and it was really, really freaky!

And second, and the most freaky, his eyes started "dropping." Instead being able to cast his gaze outward, like normal, his gaze began to be almost constantly downward. And sometimes it was very difficult for him to raise his eyes to normal level and focus on anything. It was extremely scary and worrisome.

We would comment on it to whichever nurse happened to be on duty, and they would always say that they would pass it along to the doctor. But it never seemed like we were getting any feedback from the doctor about what was going on with Nathan's eyes.

As it turns out, the doctor was frequently stopping by, but Nathan was always asleep when she would come to check him out.

Finally, one day when both of us happened to be there and Nathan was awake and having the freaky eyes, we had the nurse page the doctor. When she arrived, she took one look at Nathan's eyes and shrieked, "Oh, oh, oh! Stop! Don't do that!"

She then agreed with us something was definitely wrong. She then ordered an ultrasound for his head so that they could get an idea of what was going on inside there and what may have been causing Nathan's freaky eyes.

Family Picture

2010-01-31T09:20:00.000-08:00

As Nathan was getting stronger and healthier and easier to hold and move around, we decided it would be fun and appropriate to have our first "family picture" taken.

We had done other pictures with all of us before, but I must say that there is a difference in the quality of a professional photograph and one taken with our digital camera.

So we invited my good friend Amy, who is an amateur photographer, to come up to the hospital and take a few pictures of us and Nathan.

Above is the one we selected as our family picture. Here are a few more we liked:.

Checklist For Coming Home

2010-01-30T19:40:00.000-08:00

In order for your baby to be able to leave the NICU, there is a checklist of accomplishments that he or she needs to complete before they will discharge you.

That list includes:

Your baby being able to breathe on their own. They can be on oxygen, but they can't be on anything that helps them breathe.
Your baby has to be able to eat and gain weight.
Your baby needs to be able to maintain their own body temperature in a crib.
And the parents need to complete certain training elements, including CPR.

Once those things have been accomplished, your baby is likely to be discharged really soon.

So we were really excited when Nathan came off CPAP and was transitioned to high-flow cannulas the Sunday after Thanksgiving, after only 10 days on the machine. He was still on quite a bit of oxygen support, between 5-6 liters, but he no longer required the extra pressure to help expand his lungs. So he was moving in the right direction.

We were even more excited the next day when Nathan was transferred from the radiant warmer that he had been on since the beginning to a standard crib. In fact, we were so excited that morning when we found out that we sang and danced repeatedly throughout the day!

And Nathan's feedings continued to improve as well.

But most importantly, he was starting to look healthy. So he was making great strides. He still had a ways to go, but he was making great strides.

And it was a HUGE relief to us. It finally felt like this was it. We might not have made it home by Thanksgiving, but we were very confident that we would make it home by Christmas.

Thanksgiving

2010-01-29T21:46:00.000-08:00

Thanksgiving 2007 marked Nathan's 78th straight day in the NICU.

All things being considered, though, Nathan was doing really well. And we had a lot to be thankful for. They kept bringing the settings down on the CPAP, which meant that he would hopefully be coming off it soon. His feedings were going well. Slowly, but well.

And he started making noise! His voice was very hoarse and he didn't say much, but Nathan had started to make "baby noises," which was really, really exciting. After 11 weeks of him making no noise at all, it was incredibly exciting to hear anything!

And most importantly, Nathan was 78 days old! Our sweet little boy, who had been through soooo much, was still with us. And he was making progress!

But at the same time, Thanksgiving day really bummed us out. Earlier that month we had openly hoped and prayed that Nathan would be home by Thanksgiving, so that we would have extra to be thankful for. But we learned early in the month that that wasn't going to happen. So it was sad to still be in the hospital.

In addition, Nathan had spiked a fever a couple of days before,and they suspected that he might have an infection. So they drew blood, took fluids, and poked and prodded him to the point that he was very, very unhappy and didn't like anyone touching him for a couple of days.

But perhaps the saddest thing about being there was being there alone. Our families were hundreds of miles away. And we didn't feel like we really knew anyone or had any friends outside of the hospital. So it was a very lonely day.

Fortunately, the hospital provided a free Thanksgiving "dinner" for the parents of all the patients in the hospital on Thanksgiving day, for which we were very grateful. But sitting alone in the cafeteria just seemed to add to the sadness of the day.

So we, who are normally big fans of Thanksgiving, were more than a little bummed out by the day. Or maybe it was just the fact that I only got one piece of ham...either way, we were thankful when the day was over.

Feeding Nathan

2010-01-28T20:56:00.000-08:00

Nathan responded really well to CPAP. Within a couple of days they had turned off the "extra" breaths the machine was giving him so that it was now only providing the continuous pressure and additional oxygen support.

Perhaps the most exciting thing of having Nathan off the ventilator, though, was that it was now safe to go ahead and start feeding him. Since he had been on the ventilator from birth, he had never really had any nourishment other than intravenous fluids, principally TPN.

TPN stands for Total Parenteral Nutrition. It is a complete form of nutrition, containing protein, sugar, fat, and added vitamins and minerals, as needed for the individual it is being given to. The TPN was yellow-ish in color, so we just called it "expensive Gatorade."

When Nathan was on the ventilator (for 10 long weeks), it was difficult and very risky to try and feed him. It required them placing a tube up his nose and down into his tummy. But with the ventilator tube down his throat propping his airway open, if he were to throw up, the possibility existed that he would breathe it into his lungs causing an aspiration. Very scary and very, very not good. They had tried to feed him a couple of times while he was on the ventilator, but the risk was just too high to continue it over the long haul.

Even though he was now off the ventilator, feeding Nathan this time also required a feeding tube, which ran up his nose and into his tummy. Since they were unsure how his tummy would respond to milk an/or formula, they started him off slow...1 Tablespoon every hour! As he did well, they would increase the amount every few hours by another Tablespoon.

For the most part, Nathan did very well "learning" to eat. Sometimes his tummy appeared not to like it or maybe he was too full and would throw up. So feedings were going to be pretty slow going, but it was another step in the right direction.

Coming Off The Ventilator...This Time It's For Real!

2010-01-23T21:14:00.000-08:00

After being back on the ventilator again, Nathan had two really good days in a row where he was calm and comfortable. That meant that the doctor wanted to try and bring him off the ventilator again. Considering how the last three times had gone, we felt remarkably good about Nathan's prospects this time.

Instead of bring Nathan down directly to the high-flow nasal cannulas this time, the doctor decided to try him on CPAP (continuous positive airway pressure). It works by delivering a continuous stream of compressed air through a hose to a nose mask. The machine blows in air at a prescribed pressure and keeps the airway open. It would allow Nathan to breathe on his own, but also provide him with the additional airway support that he obviously needed.

The doctor confessed to us that he wanted to try Nathan on CPAP the last time, but that he let the nurse talk him out of it because apparently it is very uncomfortable.

Despite the comfort level, Nathan was doing very, very well on CPAP. They set the CPAP rate at 20 breaths per minute. In addition to the 20 breaths from the machine, Nathan was averaging taking 10-20 breaths per minute on his own.

So the machine was still doing the majority of the work, but it was definitely a step forward!