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Once we began to acclimate to Progressive Care, thanks to Volunteer help, it became like a new routine.  Then things got stupid in a hurry.  When Nolan was born, his left hand/wrist was a bit limp.  We weren’t sure why, no one really was.  It was checked on multiple times while he was in CVICU, but nothing was broken or amiss, they guessed it was just weak.  So one day someone from the hospital brought him a brace for his wrist that would go on for a couple hours, then off for a couple hours.  Simple, right?  Wrong.  This is where Progressive Care turned into the Three Stooges.  Nurses would come in to put on his brace and say “Now which hand does this go on?”  As if it wasn’t OBVIOUS which hand was just flopping around.  OR, to make it worse, some of them would put it ON THE WRONG HAND!  Nolan was also on continuous feeds, and it never failed that a CNA would come in and ask “When was the last time he ate?” and it got to where I’d say things like “He’s on continuous feeds…see that pump in the bed with him?  The big one there?  That one.” 

It was frustrating, and I didn’t want to be rude.  But I know from working in the medical field that each patient, Nolan included, has a freaking CHART.  And if you read the chart you can find out lots of awesome things like the fact that he’s on continuous feeds or that his brace goes on his left hand.  WOW!  Imagine that!  It was like I was working with amateurs, though.  So I decided to take matters into my own hands and call the nurse manager for Progressive Care.  If you remember back in I spoke with a nurse manager at NICU about Nolan’s care and the result wasn’t the best.  I definitely didn’t want a repeat of that, so I decided to choose my words wisely.  I told the Nurse Manager about the things that had been happening and how, to be honest, I wasn’t the most confident in the care he’s been receiving on that floor, but that I didn’t want anyone to be in trouble, I just wanted to be able to work together to ensure Nolan got the best care possible.  She was very nice and showed legitimate concern about the issues I raised. 

She called me back later in the day and said that, while remedial, her quick solution was to have Child Life print up a little poster called “ALL ABOUT NOLAN”, and I could write on there his likes, dislikes, which hand his brace goes on, yadda yadda.  I know, it seems silly to have to do that, but it was a step in the right direction for the team.  And would you know?  It seemed like it worked!  Things started getting less silly there and the frustration level went down.  The Nurse Manager even made it a point to check in from time to time to see how things were going.  It was so much different from the last time I spoke with a Nurse Manager, this was a positive experience.  But positive or not, remember this: you DO have a say in your child’s care.  If you don’t like how it’s going, say something!



Losing My Grip



Now that Nolan had a successful chest closure, all we had to do was continue to get him off the meds and then get that breathing tube out.  On one hand, it felt like the hard part was over, but in reality there was still a lot left to do.  Nolan was doing well, though: he’d open his eyes and look around a little bit and some of the meds were going away.  We all kept doing our routine of juggling kids and work to go spend time with Nolan.  It was exhausting but necessary: I wasn’t gonna miss a single day with Nolan.  Suddenly, though, a weird thing happened to me.  I started to lose my grip.  

I don’t know why, and it wasn’t tied to one particular event or circumstance.  It’s just like I woke up one day and felt like I was completely unraveling.  I would fell really bummed out, and even though Nolan was showing slow progress, it didn’t feel so great to me.  I felt completely disinterested in just about everything, kind of like I was walking in quicksand or some crazy fog.  The Children’s Hospital is attached to the main hospital here, so you have to pass by the main hospital to get to the entrance to Levine Children’s.  And day after day I’d see happy parents trying to figure out their car seats so they can bring their newborn babies home.  And I wasn’t happy for them, I was jealous.  I just wanted Nolan to be home already so we can be home.  The worst part was usually I would go and sit with Nolan and always pray for him.  This time I found myself sitting next to his little bed and asking God just to help me get through it all.  I felt like somehow it was my fault things were progressing so slow, and it was my fault that I couldn’t spend as much time with Nolan or with my other two boys.  Then I’d go to work and feel like I couldn’t do anything right.  Ugh, what a mess I was.

One day at work I decided to chat with one of our chaplains, whichever one happened to be at the office at the time.  This time it was Carl.  I explained things to him and he listened and just kind of nodded and said “You know, maybe you should try taking some time and write down something every day that you’re thankful for.  That could help put things into perspective.”  That’s all.  No fiery scripture-quoting, no organ, no laying on of hands.  So I did just that: I went to my office and grabbed a scrap of paper and began to write down a few things I was thankful for: my wife, my family, my home, working cars, a good hospital, food, running water, the ability to get out of bed in the morning, the ability to breathe on my own….

And just like that I felt WAY better.  Ok so it wasn’t so bad after all, I was just being super-hard on myself due to all the stress we were under.  That night, the visit – and future visits – with Nolan went much better.  The drive to the hospital didn’t bother me, the parents loading up fresh newborns didn’t bother me, and I kept praying for Nolan and calling him my hero.

The HLHS journey is a very long one with lots of good moments and lots of bumps too.  You can’t ever compare an HLHS baby and a healthy baby side-by-side, you always have to put things in perspective.  Just remember: if your little one is doing well, and you’re doing well, then all is good.  Everything else is a bonus.

First Attempt at Chest Closure

I believe we were at home, preparing to head down to the hospital, when we got a call.  We always knew when the hospital was calling because it shows up as something crazy like 1-9380993908230983098 on our phones.  Anyways, it was Nolan’s nurse, who told us that Dr. Maxey wanted to attempt to close Nolan’s chest and would need our authorization.  We gave it and quickly hit the road for the hospital.  The cool thing about Nolan’s room in the CVICU was that it could also serve as an operating room, so that for procedures like this, he doesn’t have to be moved and unhooked from anything.  We checked in at the nurses station, then waited in the waiting room.  We were told it would take like 40 minutes or so, but I we were waiting well over an hour.  Finally Dr. Maxey came out…when I saw him, I was hopeful.  He sat down across from us and said that he attempted the chest closure, but that it didn’t agree with Nolan and he had problems with his pressures, so they had to open the chest back up.  Talk about deflating.  He said he would wait about 10 days or so, to let him get more fluid off.  We went back to see Nolan and the room was busy with nurses.  One thing of note was that Nolan had a bunch of ice bags around him…because he actually coded for a brief moment during the closure.  But apparently God didn’t want him yet and everything turned out to be all good: his brain function was fine and his heart function was good too.  We just had to continue to wait.

This day kinda shook me because of how real this situation continued to be.  Nolan was so fragile in his condition and it could change any minute.  I continued to try to hope that things were improving, but honestly everything looked like it just stayed the same.  The nurses re-assured me that things were ok and that this wasn’t totally unusual, so I tried to keep that in mind as I continued to shuttle back and forth between home and the hospital.  Sometimes it was hard to come home to a completely healthy twin after leaving a twin hooked up to so many machines for his survival.  It didn’t seem fair.  Other times, I was thankful for a healthy Grant and a healthy Hudson, who took my focus off the bad and put it on the good.

Being a heart dad is definitely a marathon, not a sprint.  And unlike a real marathon, I don’t really think there’s any way to prepare for it, not completely.  I mean you can read up about it and talk to other heard dads (and I hope you do!); but there’s no anticipating the emotion that comes with it until you’re in deep.  And fortunately, that’s where having connections helps…you’ll need people to fall back on.