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Happy Heart Day, Nolan!

On this day two years ago, Nolan went in for his first major surgery – the Norwood Procedure.  I remember the absolute terror I was in the day before and every hour the day of as we received updates in the surgical waiting room.  I remember seeing my little boy hooked up to all those machines and the nurses moving constantly to check him and give him meds.  It was surreal.  Looking back on it, it’s still pretty surreal.  His recovery was long and hard, with lots of ups and downs…and he fought like a champ.

He continues to fight like a champ, as you well know.  I mean look at him now:

NolanHeartDay2014

There’s a whole lotta fight in that boy…he’s my hero!

I’m so glad to be able to share Nolan’s story on this blog…I’m a big believer that sharing our stories not only helps others but helps us continually heal.   I encourage you, Heart Parents, to share your story however you can.  Some of you will blog, some of you are on Facebook, some of you are part of awareness groups.  Some of you are uncomfortable sharing, and that’s ok…maybe get a notebook and just write it down.  You don’t have to share it with someone but yourself, and it will feel better to get it down on paper.

What a journey this has been and will continue to be…I can’t wait to continue on this adventure with you, big guy.  Happy heart day!!!

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What is the Glenn Procedure?

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The Glenn Procedure (or hemiFontan) is the 2nd of three open-heart surgeries for children born with Hypoplastic Left Heart Syndrome.  This surgery occurs somewhere between 6 and 8 months of age.  It is a surgery in which a detour (shunt) is created from the aorta to the pulmonary artery.  The bidirectional shunt is performed by connecting the superior vena cava to the right branch of the pulmonary artery using fine sutures, and dividing or tying up the pulmonary artery. Now, venous blood from the head and upper limbs will pass directly to the lungs, bypassing the right ventricle. The venous blood from the lower half of the body however will continue to enter the heart (this will be corrected in the 3rd surgery).

The venous blood from the upper body is re-directed first, because that is the larger part of a baby’s body.  As the body grows, the lower body becomes larger, bringing the need for the 3rd surgery (The Fontan). 

Recovery for the Glenn Procedure is much shorter, on average, than that of the Norwood, and oxygen saturation will improve along with overall energy.  Since HLHS babies operate with a single ventricle, the Glenn Procedure will decrease the overall volume load on the single ventricle. 

So why is the Glenn Procedure done so soon after the Norwood?  If you remember, the Norwood-Sano procedure places a shunt in the heart that is attached to the pulmonary artery.  As your baby grows, so will his heart…the shunt, however, won’t grow and will begin to stretch.  It will get to a point where both ends of that shunt will begin to narrow and you’ll notice your baby’s sats begin to trend downward just a little.  This is one of the signs that it’s time for the Glenn Procedure and the Norwood is definitely not a long-term solution.  In fact, during the Glenn Procedure, the Sano Shunt is removed.

For more information, check out this incredible video by the Children’s Hospital of Philadelphia (CHoP): http://www.youtube.com/watch?v=fUPVkKvPGe4

Cardiac Cath Consult

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While we were chugging along with Nolan and the rest of our gang, we were told by our cardiologist that Nolan’s second open heart surgery was coming soon, but that he would have to undergo a cardiac catheterization first.  The 2nd surgery was already this monster looming ahead of us, so another “procedure” is definitely not something we were looking forward to.  We had an appointment with another cardiologist who worked in the cath lab.  He was actually a really nice guy…and come to find out he was from Connecticut just like me!  Of course, I had to ask him about a pizza place I love called Pepe’s Pizza in New Haven.  This is my fav restaurant EVER.  He said he was sorta related to the family that owned the place.  I was floored…I instantly liked this guy.  But anyway, on to the serious stuff: the cath was important because it allowed them to look at the heart’s functioning up close to see if he’s readyf or the second surgery.  They would look at his arteries, the Sano Shunt that was put in during his first surgery, and his heart pressures. 

Nolan would be brought in to the hospital for the cath and would be placed under anesthesia before the GI team would come in.  Why GI?  Well to this point, if you recall, Nolan has had a feeding tube since he hasn’t been eating by mouth.  The G-Tube he had isn’t a long-term tube and would eventually need to be replaced by one called the Mickey Button (more on that in another post).  The GI Doctor would remove the old G-Tube and put in the Mickey button before the cath team comes in to do the cath procedure.  This involves entering an artery through the leg and moving a little camera up to the heart to have a look around.  It wasn’t a lengthy procedure, but it was a necessary one…no way around the cath.

The doctor told us that occasionally they’ll see some things like narrow arteries or something like that, and it’s something they can repair right there in the cath: just open it up with a balloon.  They can close things off too if need be.  Of course, if that would be done, it would delay his 2nd surgery until that was fully healed.  The goal of the cath is to ensure everything is a-ok before proceeding with another open heart surgery.  The doctor also said that Nolan would probably be kept overnight at the hospital since most heart babies are slower to get their sats back to normal after the procedure so they give them some time and observation.  The doctor did also say that eeeeevery now and then the sats don’t come up the way they want and they will go ahead and do the surgery within a couple days.  That freaked me out.  It’s enough trying to build yourself up for a surgery, but knowing the possibility it could be in a couple days?  Yeah, scary.  But the more I thought about it, the more confident I felt that Nolan was going to be ok.  We just had to keep praying hard. 

They set an appointment for Nolan’s cath and all we had to do was wait…

The CHAMP Program

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I hope everyone had a great Christmas and New Year!  Thanks for your patience while I took some time to spend with my fam.  Now back to it:

While in Progressive Care with Nolan, we were introduced to one of the cardiology Nurse Practitioners, who told us about a program called CHAMP.  This stands for Complex Congenital Heart At Home Monitoring Program, and she told us that this was a program we would use to “ensure he lives until his next surgery.”  WHOA.  That scared me because I really didn’t want to think about the possibility of something happening to my boy at home, but I knew it was something we had to do for him.  What I eventually learned in the long run is that there is a percentage of kids who will survive the Norwood Procedure, but will not make it to the 2nd procedure (the Glenn).  The CHAMP program is an effort to lower that number and get HLHS kids to that 2nd surgery.  I’m all for it!

The gist of the program is that eventually you will go home from the hospital with your child…there will be no doctors or nurses around…there will be no one checking his vitals…there’s just you, the parents.  So the program sends you home with an oxygen saturation reader and a scale.  Everyday you are to take the baby’s sats and weigh him and log both numbers in a binder they give you.  Not only will that allow you to track and show weight gain, it allows you to see any trends that are happening, whether positive or negative.  For example, you will be able to see – over the course of several days – whether oxygen saturation has been trending downward and/or weight gain has been stagnant.  You can then call the cardiologist and say, “I’ve noticed that on this day he was at this and today he’s at this.”  It gives a much better picture to your medical team as opposed to you calling out of the blue like “OMG OMG OMG he’s breathing hard, AHHHHH!”  A better picture gives doctors better options: they can choose to have you come in, admit the child back to the hospital for observation, or just have you wait and do more observation at home.  But it must be consistent: everyday at the same time. 

So part of what we had to do at the hospital was learn how to use the scale to properly weigh Nolan and how to use his sat reader.  It was relatively easy, we just had to be diligent with it.  I think, far and away, the worst part of the CHAMP binder is the “Red Page of Doom,” as I call it.  This is a page that gives you all the warnings, the “if you see this, call us IMMEDIATELY” kind of things.  And it’s quite a list.  If he has labored breathing, if he turns blue, if his sats drop below 75, if he doesn’t gain weight, if he’s sweaty, if he’s clammy, and on and on and on.  It’s enough to make you paranoid, honestly, especially when you turn on his sat reader and it starts out at like 72 before slowly and eventually climbing up to 76.  It’s like 45 seconds of terror.  A bit  of a spoiler alert, though: we learned, after a few freak-outs, that sat readers aren’t perfect machines.  You need to use a combination of the machine and your two eyes.  Sometimes the sats can read low, but if you look at the child, he isn’t in any kind of respiratory distress.  It took a few phone calls to the doctor to learn that lesson, so hopefully I’ll save you a freak out or two!

Anyway, while the CHAMP Program was a big responsibility, it was a necessary step to Nolan’s survival AND a necessary step closer to getting out of the Hospital.

Dr. Doom Comes Through…

Nolan was doing well in progressive care, but due to him being intubated for so long, he had pretty much lost his sucking reflex and bottle-feeding was out of the question.  Speech therapists would come in from time to time to work on it, but he was getting all of his feeds via an NG Tube, which went into his nose and down to his stomach.  Nolan hated that thing: he would always try to pull it out, and when he would pull it out even an inch, he’d barf everywhere.  Nasty.  And he was a major league ninja about it too, you’d unswaddle him to change his diaper and BAM, that little hand would whip up and grab it.

According to the staff, they wanted him to take 75% of his feeds by mouth before not considering a feeding tube any longer.  Unfortunately that wasn’t going to happen.  I happened to be in the room one afternoon with Nolan, on a weekend, when a GI doctor came in to chat with me about what would happen with Nolan’s feeds.  He talked about something called a Gastronomy Tube, or G-Tube, which would have to be surgically placed.  Oh great, another surgery.  He assured me that this would be a safe procedure.  I know the surgeons said that losing the suck reflex is common after the Norwood Procedure, but I really didn’t think it would go this far.  Basically they’d have to go down his throat and then put a tube through his skin directly to his stomach.  A tube would be sticking out, which we would use for feeds and medications.  It was pretty sad to see Nolan go for another procedure…but I was hoping that he’d get this done the first shot.

When Nolan came back, he was asleep and had the tube sticking out.  It was held in place with this round disc, and it looked huge on him.  I felt bad for my little guy…he’d been through so much.  I was told that he would be in a little pain once the pain meds wore off but that he was scheduled for some tylenol for pain.  And you could tell once the pain meds wore off because he was CRANKY.  I tried my best to console him: talking to him, singing to him, consoling him, playing him music.  Nothing worked.  Then it was time for the physician on duty to do their rounds.  And just WHOOOO was on duty this day?  Doctor freakin’ Doom.  If you remember from an post early on in this blog, “Dr. Doom” is the doctor who confirmed that Nolan had HLHS and she did it in a completely cold, soul-less manner.  I REALLY didn’t like this doctor and there the doctor was on duty while my son writhed in misery.  GREAT.  The doc got an update from the nurse before walking to give him a look-over.  I had my guard up, like I was ready to go to war.  She turned to me and asked if I had any questions and I said, “I just feel like he’s miserable and in a lot of pain and he’s been like that for awhile.”  She looked at Nolan again, then turned to his nurse and asked about meds.  The nurse said he was scheduled for Tylenol a little later and Dr. Doom replied, in utterly mind-blowing fashion, “Well I can’t see why he can’t have some now.  He’s obviously in pain.”  Then she touched Nolan’s foot and said “Feel better, Nolan, you look great.”  And then walked out.  And Nolan got his meds.

What the what?  I was stunned.  This person who I so reviled for being terrible to us just did something nice for my son.  Don’t get me wrong, it wasn’t super warm or friendly, but it was the right thing to do and she did it without thinking twice.  I was shocked.  So did she redeem herself?  Not sure.  Sometimes I acted stank about her around other people, but sometimes I didn’t say anything at all.  It was an interesting introduction to the subject of forgiving someone…it planted the seed in my mind.

Second Attempt at Chest Closure

As promised, Dr. Maxey waited about 10 days or so before attempting to close Nolan’s chest again.  Again, we gave authorization and made our way to the hospital.  When Dr. Maxey came out, he once again told us that Nolan wasn’t yet ready.  He closed the chest, Nolan didn’t like it too much, so he re-opened it most of the way but left in 2 sternal wires holding it together.  But after observing him for a little while, those wires had to come out and the chest had to be re-opened.  UGH.  In a moment of incredible honesty, Dr. Maxey said to us, “You know what, I blame myself.  I rushed him and we could’ve just waited.  So we’re going to wait until he’s ready.”  Talk about deflating…AGAIN.  The darn kid needs his chest closed so he can begin making some progress in his supposed 4-week recovery, but here we are something like 2 weeks in and we’ve gotten nowhere.  ARGH!

Well this sucked.  Again the nurses tried to be hopeful, and I was left wondering how many times we’d have to try this.  Each time you build yourself up, you become hopeful and then it’s all deflated.  Then you realize just how stinkin’ exhausted you are, but you feel bad for even wanting to mention it.  The thing is, this wasn’t going to our plan, but I had to believe the doctor’s know what they’re doing…so if they wanted to wait, then we were going to have to wait.  It was starting to feel like this was going to be a very, VERY long road.

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.

The Road to Recovery

 

In the days following Nolan’s Norwood Procedure, we fell into a good routine: go see Nolan, come home, go back to see Nolan, come home for the night.  The reason for all the travels was because a declared flu season left us in a tight spot

FluSeason

 

The hospital had a rule that in a declared flu season, no one under a certain age (16, if I recall) could visit, in an effort to keep everyone flu-free.  This was a problem for us because we had a 2 year old and Nolan’s newborn twin at home.  We did as well as we could, getting people to watch the kids so we could go spend time with Nolan, or Bekah and I would trade off during the day.  Honestly, it was exhausting.  Plus it didn’t help that Grant wasn’t doing the sleeping thing just yet.  So there was a lot of getting up during the night with him and THEN running around back and forth.  And even when I did sleep, I didn’t sleep well because I found that fairly often I would have really bad dreams about Nolan laying there in his condition or – God forbid – something bad happening to him.  Over time, thank God, those went away.

Our first days post-Norwood were pretty nerve-wracking and somehow fascinating at the same time.  Nolan had two nurses, and he was their only patient.  That’s an important thing: he was pretty much their world for their whole shift, and it was good to know there was always a close eye on him.  Anyway, I say it was fascinating because these two nurses were working non-stop…I mean NON-STOP.  One would be checking the med pumps while the other drew meds and administered them, then the other would draw other meds.  It was amazing, they knew EXACTLY what to do, they didn’t go off any set of instructions, they just did it.  And they were constantly moving, never bumping into each other…it was like a kind of dance.  And still, in the midst of this, they would always take the time to give us updates, and answer all the questions like “What med is that?  What does it do?  What’s that bubbling sound?”  We got to meet some Nurse Practitioners and other cardiologists, and every morning and evening that team would go room to room for rounds to discuss patients.  They would always take the time to give us an update and ask if we had any questions.  It meant a lot to be part of the process.

 

 NolanInCVICUPostNorwood

Meanwhile, Nolan was still pretty swollen and his chest was still open.  As the days wore on, I got more used to his chest and it became a lot less creepy.  I would gently rub his foot and talk to him, even though he was pretty heavily sedated.  There was even room for smiles here and there: one day we came in to see Nolan and one of the nurses used a piece of paper towel and cut it and decorated it to look like a little tuxedo shirt and bow tie, and just laid it on his chest.  It was a nice way to cover things up and it was very cute and put a big smile on my face.  It was just the beginning of the nice things the staff at Levine Children’s Hospital would do for us.

We also waited…a lot.  Nolan’s swelling had to go down before they would attempt closing his chest, so we continued to wait.  I would talk to him, just watch him, and pray for him so much.

The Carolina Panthers

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Ok, you’re probably thinking, “Here he goes talking about football one post after talking about his son’s surgery!”  And yes, I’m gonna talk football, but not in the way you think.  This was special.

Towards the tail end of Nolan’s first day at CVICU post-surgery, the staff at CVICU gave us a sleep room.  This was AWESOME.  It was a private room with a big bed and private bathroom, on the same floor but set away from everything.  It was nice and peaceful and it was SO needed.  We were wiped out and slept like rocks.  If your hospital offers you sleep room, USE THEM.  Seriously!

Anyways, the next morning, we went to check in on Nolan (he was status quo) before making the tough choice to leave him for awhile to go home and check on Grant and Hudson and get some fresh clothes and whatnot.  We rode the elevator down to the lobby, still kinda in a fog from the day before.  As soon as we stepped off the elevator, we were greeted by a bunch of Carolina Panthers Cheerleaders and staff.  Don’t get ahead of yourself, this is not a “hurrr hurrr cheerleaders!” post; they were actually inviting us to a Christmas party the Panthers were throwing for patients and families.  While that was cool, I politely declined, saying our son just had heart surgery yesterday.  One of the cheerleaders asked how old he is and I said 8 days old.  And then they all insisted we go in to the party.  INSISTED.  So we went.  It felt kinda weird, actually…we didn’t have a kid with us and we were all ragged from the previous days.  But I’ll tell you, the staff really went to a lot of effort to make us feel welcome.  They were giving out toys to all the kids and they told us to pick out a toy for Hudson and to bring it home to him.  It was so nice…and we needed that outpouring of love from complete strangers.

We got to see kids really enjoying Sir Purr, the mascot, and to see a few of these GINORMOUS football players trying to do Christmas crafts with the kids…it was hilarious.  One behemoth of a man was trying to stuff tinsel into these tiny glass ornaments.  It was the funniest thing I’d ever seen.  There were kids there in wheelchairs and whatnot and they were having a ball…and that brought me joy.  The players helped us make some ornaments for all 3 boys and even stockings for them too.  To be honest, I can’t remember which players were there.  It didn’t really matter, they were just so kind.  Everyone showed genuine support for us.

And even better, it helped that one of their teammates – Greg Olsen – was going through the same thing as us.  So when the players or staff would ask “Is it the same thing as Greg’s son?” we’d say yes and they would immediately understand.  As we left the room so we could finally go home, the staff and cheerleaders said goodbye and that they’d be praying for us and Nolan.  Wow.  What a cool day that was.  And what a blessing the Carolina Panthers were that day.  I know football players and other professional athletes get a bad rap sometimes, but these guys were all class and meant the world to me that day.  To this day the Panthers remain very involved with Levine Children’s Hospital: they frequently visit kids and bring gifts, and they absolutely model some incredible support for their community.

As we made the drive home to see our other kiddos, we talked excitedly about what just happened: we were blown away by the generosity and kindness of the Carolina Panthers!

The Shock

Once we got word that Nolan’s surgery went well, all we had to do was wait for an ok to go up and see him.  It seemed to take forever, but having our friend Marc there to keep us company helped pass the time.  Finally someone came to get us and brought us up to the CVICU to his room.  And what I saw shocked me:

NolanBedPostSurgery

 

My little boy.  My 4 pound baby was hooked up to so many machines.  I was shocked.  Completely numb.  I don’t even think I said anything, I just couldn’t.  In my mind I prayed and prayed, then prayed some more.  Meanwhile the room was buzzing with nurses moving back and forth rapidly, giving meds, checking machines, etc.  It was nuts.  I couldn’t believe how swollen Nolan was…it didn’t even look like him.  And (WARNING: PHOTO AHEAD), as Dr. Maxey noted, his chest was still open and I could see his little heart beating:

NoliOpenChest

 

It was all so scary.  I vaguely remember speaking to one of the nurses, but most of it was some Charlie Brown-style wah wah wah.  Something about them doing an x-ray or an echocardiogram to see how his heart function is.  I was just in complete shock.  I mean it was kinda freaky seeing his chest open like that…ok really freaky, plus I was just kind of amazed at our medical technology and skill: they could perform surgery on a heart the size of a quarter AND they have all these machines that keep him healthy through recovery.  Man, I couldn’t begin to list all the meds he was in: pain stuff, sedatives, meds to help with fluids, stuff to serve as feeds, he had a chest tube that was draining lots of gunk, AND he was on a breathing machine.  

Besides the shock, I felt really exhausted in that moment.  It’s like so much led up to this point and when I walked into the room it was the crushing reality that so much more was ahead.  We had this huge mountain to climb together, except it’s like we had to climb it in the dark, since we wouldn’t know what to expect on a day-to-day basis.  I had to get used to the new reality: this room would become our second home, and we’d have to get used to the beeping and whirring of so many machines and the visible beating of our son’s heart.  

People like to say that “being a man” means being tough.  I promise you, Dads out there, the “tough” you’ve known your whole life is garbage when you go through this process.  The moment I saw my son like this it sucked the tough outta me.  I had to learn what tough really is.  And how did I learn that?  I looked at that 4 pound baby to lead by example.  THAT’S tough.