Some weeks ago, Nolan had his regularly scheduled Cardiology appointment, which occurs every 6 months or so. For the last several visits these have gone very well and since I work really close to the Cardiology office, I can pop right in and be part of the visit then go right back to work.
This appointment, however, was giving me a tiny bit of anxiety. Ok, not a tiny bit but not a huge amount. Why? For some reason I had it in my head that we were going to go in there and they were going to start talking about the F-Word…the Fontan procedure: the next – and hopefully final – step in his surgery plan. Was I read to talk Fontan? Heeeeck no, I wasn’t ready for none of that mess. I think part of that anxiety was due to seeing several people’s HLHS kids get the Fontan at about 2 1/2 years old as opposed to 3.
You see, Nolan is still a little guy: he is struggling to get to 24 pounds, and I was scared to death to even think another surgery because he was still so small and it made me scared to think we’d have to hand him over, again; they would cut him open. again; and then we’d wait…again. Normally I try my best to take everything in stride but for a little while this was driving me bonkers. I was terrified to hear the F-word during this appointment and it was like I got into my own head about it.
When the day finally came for Nolan’s appointment, I stepped out of a meeting I was in and walked over to the Cardiology office. That whole morning I was preparing myself. When I got there, I saw my wife holding Nolan, who had his shirt off and had obviously been crying very hard. My wife said that as soon as he saw the rooms in the back, he went nuts and wouldn’t stop crying and wouldn’t sit still for an EKG or a pulse ox reading. Woo boy.
(Side note: Heart Parents, I know our kids go to so many doctors and this is why they go nuts and cry…it’s not the Dr’s fault, but what have you done to ease that anxiety in your kids? Please share because I know it’s not just us!)
So I picked my my crying little beast and we walked in to do an Echo. Nolan was not having it, so I had to hold him and put on Yo Gabba Gabba on my phone so he could remotely relax enough to get a decent Echo done. At first he was going nuts and I thought I was gonna come out of there covered in that ultrasound goop. But MAJOR kudos to the tech, who still managed to get good pictures. And to help things along, Nolan’s Dr was in an adjoining room watching the Echo as it was being done so he met with us quickly and said Nolan’s heart function looked great and that they wouldn’t have to see us for quite awhile and we wouldn’t begin to have the surgery conversation until next spring.
Now I know that you’re thinking: “Chris, you’re gonna worry yourself all the way til then?” Well I hate to burst your bubble, but no. I’m not. That news actually made me very happy. I was glad to hear his little heart is doing well and that we still have some more time to focus on feeding, weight gain, physical therapy, more laughter, another Christmas, etc., before worrying about surgery. It’s a nice feeling. I know the surgery is inevitable and I’m sure the anxiety will return as we get closer to that time. But it was good to get our little man dressed as he watched Yo Gabba Gabba, and to focus on getting back to our little life as we know it. I’m so glad to know he’s doing really well so far, I’m proud of him:
I know this far I’ve been chronicling our journey with Nolan, and I really thank you all for taking the time to read this blog. I hope that it’s given some of you heart dads an insight into the roller coaster ride that is being a heart parent. Hopefully for those who have gone through it, this blog shows that you’re not alone.
I wanted to take a small break in telling Nolan’s story to talk about being thankful, since tomorrow is Thanksgiving. Yes, it’s going to be a day where we eat ourselves into a coma, watch football, maybe put up a Christmas tree, maybe line up for Black Friday, etc. But as I look back on the last year with Nolan, I really have a lot to be thankful for: and when you really think about it, sometimes the thanks can seem a bit unusual.
While finding out early about Nolan’s condition was bordering on soul-crushing, I’m thankful it happened when it did. In some way I was able to educate myself and try my best to prepare (even though there’s no complete way to be prepared). There are a lot of babies that are born with congenital heart defects who aren’t so lucky. They’re born, look normal – just like Nolan – except they go home within a couple days. And that’s where the trouble starts and before you know it you end up back in the hospital…that is, if you’re so lucky. Many hospitals aren’t equipped to deal with CHD babies, much less recognize them. Heck, the hospital where we originally planned to have the twins doesn’t even have a NICU! So yes, I’m thankful we found out early: thank God for a ultrasound tech with good eyes and a cardiology team that is AMAZING.
I’m thankful for Levine Children’s Hospital: for the kindness showed to us by all the staff. For the bright colors and cheerful decor. Trust me, when you spend 2 months daily in a place, you notice that kinda stuff. I’m thankful for their volunteers, the doctors, the nurses, the CNAs. I’m thankful for the window washers who dressed up as superheros and rappelled down the building the brighten the kids’ day. A Children’s Hospital is definitely not a place you want to be by choice. We had to be there, and I honestly believe LCH is one of the best around.
I’m thankful for my wife, who often juggled so many schedules, complete with multiple pickups and drop-offs, just so we can go see Nolan at the hospital. She continues to be a rock and an amazing mom and wife. When I told people about this blog I heard a few stories about dads who abandoned their families once they found out about a CHD diagnosis. Those guys are cowards and they’re weak. Nothing less. I cannot imagine being a single parent going through this, so I’m grateful that I get to take this journey with my wife by my side.
Now for the crazy part. In some weird way I’m thankful for the fear, the rough emotions, the waiting, the meds, the sleepless nights, the nightmares, the anguish, the worry, the anger, the impatience, the doubt, the exhaustion, the crying….because it reminds me that there’s so much more to life than me and my comfort. I have a job to do and that’s to be a great husband and an awesome dad. Yes, I’m tired…and yes, sometimes I whine about it…but it’s all about perspective. Nolan is surviving and thriving and I thank God every day for it! There are kids and families that are worse off, that are going through tremendous struggles: they don’t know where their next meal will come from or where to call home. Perspective. It’s a powerful thing, and I’m thankful for it. I tell everyone that ever since Nolan was born, my life changed. I have to speak out for Nolan and other HLHS babies because that’s the life I’ve inherited and the life my son will live. And you have to learn to be thankful for every smile, every laugh, every breath, and every waking morning…because it’s the hard stuff that leads you to the great stuff.
Happy Thanksgiving Everyone!
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
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.
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.
Once Bekah was out of recovery, we were moved up to a room on the maternity floor of the hospital. It was weird because we were up there with no babies. Lots of time went by. We realized how tired we were: I mean we’d been up since 2:30am! So I fired off some text messages to people, updated my job (it was about 8am by this time), and then we decided we might as well rest. We both managed to get some sleep before waking up in hopes we’d be able to see our babies. I finally decided to call the NICU to ask if they could be seen…they said yes. The unfortunate thing was that I had to go alone, since Bekah wasn’t able to get out of bed yet. So I walked to the nurse’s station with the all-important question: how do I get to the NICU? Man, those directions were bonkers: it was like go down 2 floors, take a left, then a right, then a right, then immediate left, then climb a mountain, shoot two free throws, eat 3 hot dogs….ok I’m exaggerating a tiny bit, but it was pretty crazy at first.
I managed to find the NICU Nurse’s Station and I introduced myself. I was told to fill out a form indicating that I didn’t have the bubonic plague or anything like that, and they gave me a nifty Levine Children’s Hospital lanyard with badge holder to hold my parent badge and a list of NICU phone numbers (really helpful). I was instructed on NICU procedure: first check in at nurse’s station, then go to family waiting room where I’d have to do a 2-minute hand wash before putting on a yellow plastic gown, then I’d go out another door so I can be buzzed back into the NICU area…THEN I could see my boys. Now this is very important…if your baby ends up in NICU and you have to do the 2-minute hand wash, be sure you have a good bottle of lotion in your hospital overnight bag. Seriously. I’m not even talking ashy knuckles here, but when you hand wash so much at first (you visit, then your family comes so you wash again, then more family comes to see the baby so you wash again and again and again) your hands will BURN. I know mine did, and it was horrible, I have no shame in saying that cuz it sucked, big time. I couldn’t even put my hands in my pockets…and God forbid using hand sanitizer…WOOOO BURN. So yeah, lotion up! Eventually it gets better: I used Burt’s Bees hand salve. I know, some of you are like “So unmanly!” but just you wait.
So back to it. I walked into the NICU and it was sorta like I remembered it: dark and quiet. I took a step inside and realized that I had seen my twins for such a short amount of time that there was no way I’d be able to know them by sight, so I didn’t know where to go. Luckily a nurse was there near the door and once I introduced myself she directed me straight ahead, where two little beds with heating elements were about 15 feet apart. My boys. I was happy to see them, but it so pained me to see them both there. First I went to Nolan, again afraid that I didn’t know what to expect. He was pretty zonked out looking all cute as if there was nothing amiss. Seriously, if you looked at him, he looked so normal. Amazing. His nurse came up and introduced herself and gave me an update: they did an echo on him right after birth, and – SHOCKER – he has HLHS. So she introduced me to his monitor, which displayed his pulse ox, heart rate, blood pressure, etc. She said he was doing pretty well but wasn’t doing the best with bottle feeds, which is fairly common in CHD babies. I got to spend time with the little man and hold his tiny fingers and toes and talk to him. It was actually pretty soothing there in that quiet place. I asked if a cardiologist had been by and was told no, but that the nurse was fetching the NICU doctor to speak with me. While I waited, I walked over to see Grant, who was also happily asleep. I did notice, though, that he had a little oxygen still going in through his nose and this big (for him) bandage on his chest. Grant’s nurse came over and introduced herself and said that it looked like Grant’s lung had a buildup of fluid and had a little burst, but it was nothing major and they drained it. That threw me for a major loop because here I was expecting one medical issue, but with Nolan…and Grant had one too? The doctor finally came and said something I hear A LOT at the hospital and it pisses me off, “Hello Mr Perez. Is English a good language?” My reply, “What if it isn’t?” to which he laughed. I was not amused.
Luckily for him, though, he was a nice guy and I liked him. He also confirmed that Nolan has HLHS and that the team at Levine Children’s Hospital is the best around. He also verified the info on Grant’s lung, saying he would be just fine aside from a tiny bit of jaundice. I didn’t have any other questions for him aside from asking when I would see a cardiologist and he said he’d check on it. Otherwise I Just wanted to spend time with the boys. I was a bit sad, though: I didn’t get to hold them and didn’t know when I could, and I wasn’t happy about the fact they were in the NICU in the first place. They were getting fantastic care, that’s for sure, but I wanted nothing more right then to have two perfectly healthy babies and be worrying about silly things like fitting them in the car. And it sounds stupid, but I was overly concerned with making sure I spent equal amounts of time with each boy. So I’d walk to Nolan and sit on this high rolling chair and just talk to him. Then I’d go over and do the same for Grant.
It wasn’t until much later that I was able to take Bekah down in a wheelchair to see the boys. By then it was a pro at getting to the NICU. And it was really nice to see my wife get to interact better with the boys, even though she couldn’t hold them yet.
A big question hung in the air, though: what would cardiology say? Will his surgery be tonight? Tomorrow? Next week?
When you’re preparing to deliver a HLHS baby, there’s a really good chance you’re going to hear a cardiologist mention the ductus arteriosus, or just ductus for short. When babies are in the womb, their oxygen is provided by the mother’s lungs and placenta. So to save energy, blood doesn’t need to be pumped to the lungs, so the ductus arteriosus allows the blood to bypass the lungs and get out to the rest of their little bodies. Again, this is present in ALL babies. When your little one is born, though, they need to use their lungs, so this ductus typically closes within the first few hours of life. For a fully healthy baby, that’s normal and no big deal. For an HLHS warrior, though, this is pretty important to monitor. In HLHS babies, the right ventricle has to do double the work, of pumping blood to the lungs AND out to the body. An open ductus allows it to pump blood to the body, but once that closes up it really diminishes the amount of blood flow to the body, which is very dangerous.
But before you freak out, this is something cardiology looks out for…or at least, they should. And if they don’t mention it, ASK. Anyways, if the ductus does look like it’s closing up, they can use medicine called prostaglandins to keep that ductus open until they’re ready for the Norwood Procedure.
What a day this was. We had to wait weeks after the 20 week ultrasound before going to see the high-risk doctor at the Womens’ Institute and the day finally arrived. We had an early appointment and both had the day off work, so we set off . We got there and everyone was pretty nice: the first thing we did was meet with a genetic counselor, who asked us a bunch of questions about our family histories. Next we settled in for our thousandth ultrasound. This one took awhile, and eventually the doctor came in to look at things himself and even typed out some labels on the ultrasound like “Double Outlet”…whatever that meant. Finally we got to meet with the doctor who said he thought the baby had what’s called Hypoplastic Left Heart Syndrome, which means the left side of his heart is underdeveloped. Whoa. He said he would be handling the delivery of the babies since now they are considered high-risk and our original doctor was not able to do deliveries at the main hospital in Charlotte. He said he’d be referring us next to the cardiologists at the main hospital, preferrably that day. The next thing he said flummoxed me. He said an option for the baby could be “Selective Reduction.” I wanted to put a shoe on him. I was like “NO.” That baby will be born and he will be a BOSS. End of story. He was actually a really nice doctor, he just really got off on the wrong foot.
Anyways, we talked with the genetic counselor again, who worked on getting us scheduled at the cardiologist’s office. She also set up a tour of the NICU and the Cardiovascular Intensive Care Unit (CVICU) at the Children’s Hospital.
We had a lot of time to kill before going to the cardiology appointment, so we decided to have breakfast. We went to a place called Briggs and it was delicious. Why was this important on this day? Because we sat there and decided that, ok they found something wrong. We don’t quite know what the next step is, but they’re going to send us to the people who do know. In the meantime, we should relax, spend time together, and eat. And we did. And it was nice.
On we went to the hospital for our tours. Everyone at NICU was really friendly, but I remembered how dark it was in there…and quiet. I really tried my best not to look at the babies to avoid being sadder than I already was. The next stop was the CVICU: we spoke with a nurse who told us about the floor. I don’t remember much of what she said because my mind was racing, which basically turned her into Charlie Brown’s teacher: wah wah waaaaaah. One thing I do remember is her taking us to a room of her patient. It was a little baby that got out of surgery and he was asleep in his bed. She said “See, he’s doing fine…breathing normal. That’s good. And if you look around, no one here is freaking out, there’s no alarm, no panic. We have it under control.” I would never forget that. I was completely confident in their ability at that point…it was going to be ok in their hands.
Then we had our cardiology appointment at Sanger Heart & Vascular Institute. We sat there in the waiting area, surrounded by photos of kids with heart issues, which is crazy at first. We were finally called back in and briefly met the cardiologist. She was nice enough, I guess, and, and told us we were going to do a fetal echocardiogram. This was basically ANOTHER ultrasound that lasted foreeeeeever. By that point we were so exhausted (my wife must’ve been practically comatose). Once it was done, we met with the cardiologist again. She drew us a very nicely-done picture of a normal heart, then a picture of what our baby’s heart is like or would be like. She did this very matter-of-factly, almost robotically. She didn’t touch much on surgical options and only briefly explained what Hypoplastic Left Heart Syndrome meant. I asked her how often she’s seen HLHS and she just said “It’s rare.” Well rare like what? Sasquatch rare, like you never ever see it? Or rate like, hey we don’t see it much but we know what to do? Eventually my wife started to cry, and the doctor looked nervous. She handed my wife a box of tissues and walked out. And I hated her for it. Despised her, in fact. How dare this lady be so cold? How can she work with parents of unborn sick babies and behave so icy? I was furious, and would harbor those feelings towards her for quite awhile (more on that later).
Once we settled down, we went to the check-out to make a follow-up appointment. Then I heard music to my ears, “Oh that doctor isn’t available next week, would another one be ok?” I was like, “YES! ABSOLUTELY
!” Anyone is better than her, right? (more on that in another post, too).
So our fears were confirmed. Our baby would be born with a congenital heart defect called Hypoplastic Left Heart Syndrome. But what did it all mean? Was he going to make it? What kind of life would he have? What kind of life would WE have? Oddly I didn’t feel as overwhelmingly sad as I did after our previous appointment. By this stage in the long day, we knew something was wrong, and now we just needed to know what was next. Don’t get me wrong, it wasn’t super-joyous either, but I was just looking forward to working with a doctor that WASN’T the one we met today. We drove towards home in disbelief and shock, and picked up Hudson from daycare. Smart move: it’s hard to be upset when that boy is so happy to see you. We definitely needed his smiles and hugs.
At that point I was just thankful for my growing family, no matter what the difficulty ahead may be. I had faith that God would get us through (as mad as I was with Him earlier), and we’d be depending pretty heavily upon that faith.
It’s amazing to re-live that day and all the emotional ups and downs associated with it. All things said I am grateful my wife and I are a great team. She’s so strong…stronger than I am, and I was glad we were fighting the battle together.