Kids on the Move

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

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

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

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

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

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

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

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

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

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

 

 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!

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

Nathan's discharge paperwork was 3 pages long!

It included information and instructions on

1. 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.
2. His follow-up appointments, including the doctors or clinics he needed to see (there were 6) and when he needed to be scheduled.
3. His list of medications (there were 12), including how much to give and how often.
4. Restrictions on Nathan's activity (he wasn't supposed to go anywhere public, except the doctor's office, for at least 3-6 months).
5. 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!

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

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

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

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!