Learning to Place an NG Tube

 

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

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

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

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!

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

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

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!

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

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

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

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

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

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

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

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

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...

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

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

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

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

 

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...