Okay...So There Is SERIOUSLY Somethig Wrong With Nathan's Eyes...

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

 

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

 

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

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

 

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!

 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!

Coming Off The Ventilator...Third Times The Charm?

On November 10th, Nathan was taken off the ventilator again.  It marked the 3rd time in 10 days.  We really hoped and prayed as hard as we could that this would be the time.

Even though he had only been back on the ventilator for a couple of days, they were a good couple of days, except for the big, buggy, scared eyes that we assumed were still from withdrawals.

As with the last couple of times, Nathan had a couple of rough episodes, but he did his best to work through them.  To help him out, they gave him some steroids and albuterol treatments to both strengthen and relax his lungs...somewhat odd, we know.

Unfortunately, as with the last three times, Nathan eventually began to overwork and wear himself out.  So on Monday morning, November 12th, Nathan was re-intubated once more.

We were once again really excited and pleased that Nathan was able to do so well.  He made it almost 2 days!  That was nearly 3 times as long as he made it the first time!  So he was making progress.

But at the same time, we were starting to become more than a little frustrated with the whole process.  We were starting to have trouble seeing and understanding the plan or the logic behind everything.  In addition to trying to get him off the ventilator, they were also weaning him off some medicinal narcotics and trying to start feeding him as well.

We felt that they were trying to do too much at the same time and that Nathan just wasn't able to handle it all at the same time.

With all the unsuccessful attempts to come off the ventilator, was Nathan making any progress?  What was it going to take to move forward?  How were we going to get him off this blasted ventilator?

Coming Off The Ventilator...Again

About 5 days after Nathan had been put back on the ventilator, it was decided it was a good time to go ahead and give it another try.  After he had been put back just a few days prior, it was discovered that he had some type of infection.  So he was moved to an isolation room to prevent whatever it was from spreading to other babies in his room.  We also suspected that the infection was a contributing factor to Nathan not being able to stay off the ventilator.

With the infection now cleared up, we hoped that Nathan would be able to make a better go of it this time.  But not withstanding our hopes, Bekah had a bad feeling about them taking Nathan off the ventilator so soon after the infection.  I didn't necessarily have a bad feeling, but I did think that the nurse on duty that day did seem to be a little too "eager" to get Nathan off the ventilator.  It felt almost as if she thought it had to be done right then or who knows what would happen.

So just after 3pm, they took Nathan off the ventilator again.  And it did not go well at all.  As soon as the tube was out, Nathan started having troubles.  He was really struggling and just couldn't calm down.  The nurse gave him some sedation to try and help, his breathing became really, really shallow.  To try and help him again, they turned him from laying on his back to laying on his stomach.  But once he was on his stomach, he almost stopped breathing altogether.

It was so excruciatingly painful to watch him struggling for breath....struggling for life...and knowing that you can't do anything to help.  The sight was more than enough to literally make you sick.  We wanted to flee, run away, hide.  But at the same time, we had stay.  You can't not stay.  You have to be there.

It wrenches your heart to stay and watch and it wrenches your heart to not be there knowing what is happening.  Ugh.

After Nathan wasn't responding to any treatments, the decision was quickly made to put him back on the ventilator.

Was this a step backward?  From 17 hours to about 1?  And not a good 1 at that.  What was it going to take to get him off?

Coming Off The Ventilator

Following Nathan's hernia repair surgery in September, his doctor was more than pleasantly surprised at how big his lungs actually were.  There were still small and under-developed, but considering how constricted they had been before surgery, they were bigger than expected.

Now, as the calendar turned to November, Nathan's doctors decided to go ahead and take him off the ventilator.  This was a big step in our unofficial goal of having him home by Thanksgiving.

So at noon on November 1st, they removed Nathan from the ventilator and transitioned him to high-flow nasal cannulas.

For the first time in his short life, Nathan was breathing on his own!  He was still on quite a bit of oxygen support, but each breath he took was his own!  It was a tiny little miracle!

However, spending 8 weeks on the ventilator, having the big breathing tube stuck down his throat, had caused his vocal cords to become inflamed, making it very difficult and/or nearly impossible for him to make any type of noise.  He did manage a weak cough, though.  And he even tried to cry more than once, but even though his face made the look, there was no sound to accompany it.

When he was awake, Nathan spent quite a bit of time rolling his tongue around in his mouth, probably looking for and enjoying the absence of the ventilator tube!

 As the day wore on, however, Nathan was working harder and harder to breathe on his own.  They gave him some medications to try and keep him calm, but he was wearing himself out.  So at 5am the next day, 17 hours after he had been taken off the ventilator, Nathan was put back on.  His little lungs just weren't ready to handle all the work they needed to do yet.

It was exciting that he came off -- and stayed off -- the ventilator for 17 hours!  That's almost a whole day!  All things being considered, we felt that it was quite the accomplishment.

At the same time though, it was very disheartening and sad.  It meant that he wasn't ready.  His lungs weren't ready.  And that meant that our outside shot at Thanksgiving was probably not going to happen either.

So Does Nathan Just Not Like Halloween Or What...

Nathan's second full day back in the NICU was Halloween.  A full 8 weeks since he had been born.  Partly to celebrate (and partly to avoid being home to hand out candy to trick-or-treaters, we decided to spend as much of the day as we could at the hospital.

To celebrate the holiday, many of the nurses and other staff had dressed up in (mostly) kid friendly costumes.  And there were a couple of different activities, including a costume contest, that we attended while we were there.
 
But as always, the best part of the day was being with Nathan.  Now that he was back in the NICU and continuing to recover quite well from heart surgery, everything seemed to be on the up and up, except for this weird bug-eyed thing Nathan started doing every once in a while.

The first time we noticed it was when a nurse passed by holding a cup of coffee.  Nathan's eyes just got REALLY BIG and the look on his face was close to horror.  Was he scared of the nurse (sometimes I thought she looked scary without a costume on)?  Was he bothered by the smell of coffee?  Was he having withdrawals from any of his medications?  The last one seemed particularly likely considering all the pain management meds he had been on, especially after heart surgery.

So we didn't think very much of it.  Instead we envisioned Nathan having a steady degree of progress and thought that, especially now that he had a healthy heart, that there was an outside possibility for him to be home for Thanksgiving...only 22 days away.

The biggest thing left now was to get Nathan off the ventilator and bring down his oxygen needs to a level that we would be able to manage at home.  Could that be done in 3 weeks?  We didn't know, but we were sure hoping and praying that it could!  Wouldn't that be the best Thanksgiving?  And one of the best things to be thankful for?  We thought so too!

Back in the NICU

Prior to heart surgery day, Nathan had spent almost his entire life in the same room in the NICU.  Because it was the room usually reserved for newborns with the most severe health problems, we had taken to calling it "The Sick Baby Room."

When Nathan was moved back to the NICU, to our surprise he wasn't moved back to The Sick Baby Room.  This was both exciting and disappointing at the same time.

It was exciting because it meant that Nathan was no longer one of the sickest babies in the hospital!  That was something worth celebrating!

However, at the same time, not being in The Sick Baby Room also meant that we would probably not being seeing a lot of our favorite nurses as often anymore, because many of them were usually assigned to care for the sickest babies.  Since we had become quite close with some of them, the move was also a little sad.

Recovery

Over the next few days, Nathan began to make good progress.  It's amazing how that can happen when your heart is functioning mostly properly for the first time in your life!

Remarkably, within 2-3 days his heart had recovered to the point that they were able to remove the pacemaker.

Additionally, his leg began to recover as well.  The doctors originally suspected that there was a clot in one of the smaller veins in his leg.  As a result, he was put on blood thinning medication to try and dissolve it.

For the first couple of days, his leg maintained a faint pulse.  But gradually it became a little stronger and a little stronger.  Soon the normal color started to return as well.  Thankfully, Nathan's leg was going to be OK.

Each day Nathan was in the PICU, his doctor from the NICU came to check on him and let him know that they were holding a place for him back in the NICU as soon as he was well enough to leave the PICU.  And then, a couple of days before Halloween, only a week after his surgery, Nathan was moved back to the NICU!

The PICU

As Nathan recovered from heart surgery, he was kept in the Pediatric Intensive Care Unit (PICU) so that he could get the attentive care that he required.

The PICU was an entirely different experience for us than the NICU.  And one that we weren't entirely too fond of either.

Up until the day of heart surgery, Nathan had basically spent his entire life (nearly 2 months) in the same room in the NICU.  We had spent so much time there, especially Bekah, who faithfully went to the hospital every day, that the NICU  kind of became our second home.  And a few of Nathan's nurses and a good number of the hospital staff became very good friends.

Everything about the PICU was new.  And we didn't know anyone there.  We missed our friends.  We missed the comfort of familiar surroundings. 

But without a doubt, the thing that made the PICU the most foreign and unsettling was the fact that it was full of sick kids.  In all the time we had been in the hospital, we had only ever really seen sick babies.  Now we were in the same Unit as sick kids -- kids who were 5, 6, 7 years old and older.  Teenagers.  Kids who had gone to school.  Kids who had played with their parents or siblings.  Kids that knew what life was actually supposed to be like.  It was very depressing.

We really longed to be back in the NICU and hoped that our stay in the PICU would be short.

C3PO

When we made our way back to the Nathan's room in the PICU, our jaws nearly hit the floor.  Nathan was hooked up to so many tubes and  wires.  It would have been overwhelmingly shocking if the site of it wasn't so scary!  It was one of those experiences where your heart just sinks and the pit of your stomach goes into a free-fall.

They had inserted a new chest tube. They also had to install a pacemaker because Nathan's heart had acquired an arrhythmic beat after it had been restarted after surgery.  In addition, he also had a lot of IV ports for pain and heart medications, sedation, and antibiotics.

But among all the wires and tubes, the thing that stuck out most to me was the fact that Nathan's right leg was practically completely purple!  It didn't fare well in the Cath Lab.  It looked horrible.  It looked nearly...well...dead.  I was so worried that Nathan was going to lose his leg.

How did we arrive at this point?  This wasn't supposed to happen.  We had tried to be optimistic and full of faith that morning, but now, less than half a day later, our lives had been turned upside down...again...even more than it had been before.

Anxiety, Relief, Shock

At some point during our wait, we were informed that following the repair of Nathan's tricuspid valve and the patching of the VSD, it was highly likely that Nathan would need to go back on ECMO.

That news only served to add to our anxiety.  Would the doctor be able to fix the valve?  Would the patch work?  And now, Would Nathan have to go back on ECMO?  Knowing that the odds of surviving two turns on ECMO are relatively low, the burden on our shoulders seemed nearly unbearable.

It is tradition in the Waiting Room for someone to either call and let you know that your child's surgery is finished and to call you back to the Post-Op, or for the surgeon to come out and explain how the surgery went.

Finally, after a few hours, the phone rang for us.  It was decided that I should take the call.  I approached the desk and with my nerves all tied in knots said as calmly and bravely as I could, "This is Nathan's dad."

The lady on the other end informed me that the surgery was now over and that Nathan would NOT be needing to go back on ECMO.  My legs nearly collapsed with relief and joy.  She also said that Dr. Hawkins was just finishing closing Nathan's incision site and that he would be in to see us shortly.

Within a half an hour, Dr. Hawkins entered the Waiting Room, walked quickly over to us, sat down, and placed a piece of cloth with a hole cut out of it on the table in front of us.

The first words in my head were the first words out of my mouth: "What's that?"

What it was was the synthetic material that the doctor had cut the patch from.  The hole was the piece that had been cut out to form the patch.  We stared in awe at how relatively big the hole was--almost the size of a dime (you can see the cloth and hole with a dime in the copy above).

Now a dime is not very big.  But when you look at the hole, think about a little baby, less than two months old, and how BIG that hole is in comparison to their heart, which is probably smaller than most strawberries you can buy.

Hopefully now you can see how shocking the moment was.

In addition, Dr. Hawkins told us that he was able to repair Nathan's tricuspid valve using technique's and procedures that he basically invented as he went along.  (We later learned that Bekah's mother had been specifically praying for the surgeon to be creative if so needed, for which we were very grateful she thought to do that!).

He then told us that Nathan would be being moved back to the PICU so that he would have the care needed while recovering from surgery.

Our Hearts Felt As Broken As Nathan's Actually Was

As the doors to the OR closed, we made our way down the hall to the Waiting Room, hearts so heavy with angst and despair.  We sent text messages to family and friends, trying to avoid making as many phone calls as we could.  Neither of us was in the mood to talk with anyone, even though we knew that some (especially Grandmas) would likely be calling once they got the messages.

Since this whole ordeal was unplanned, we had no idea how long the surgery would take.  Nor did we know how bad Nathan's valve had been damaged.  All I could picture in my mind was the valve barely hanging on.  How was the doctor going to fix it?  Had it even ever been done before?  If it broke, that would be the end.  But how could it end this way?

Each minute we waited seemed like an hour.  And having all that time to think was driving me crazy.  I needed to get away.  Bekah needed to stay close.

With her consent, I left to take a walk.  I didn't know where to go.  I knew the tears were coming.  I made my way out to the car.  It was quiet.  Isolated.  Alone.  Cold.  Everything I was feeling.

And then I cried.  I cried like I had never cried before.  I didn't understand how this could have happened.  This wasn't supposed to have happened.  Hadn't Nathan received a blessing less than 36 hours before that promised him he would be OK?  And now the total opposite of the blessing was coming to pass.  Apparently Nathan's blessing was worthless.   I felt less than worthless since I was the one who had spoken the words of the blessing.

So I did the only thing I could do.  I prayed, if you can call it praying.  I cried out in anger, fear, and frustration.  The rawest of emotions came from deep inside me.  I felt betrayed.  Nathan had survived so much to be done in by this?  How was that even a possibility?  My faith had been severely crippled.  I begged and pleaded for Nathan's life.  For the strength to be able to face this, no matter the outcome.  To not become bitter and angry.

Meanwhile, Bekah was back in the Waiting Room.  Shock and disbelief had filled her heart, making her too weary to cry.  I made my way back to the Waiting Room, hoping that we could find solace with each other.