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 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:
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:
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.
The Norwood Procedure is the first surgery for all HLHS babies and usually occurs sometime during the first week of birth. It is the most complex and highest-risk procedure that an HLHS baby will go through. Since the heart’s left side does not pump well, the heart is rebuilt so the right side of the heart becomes the main pumping chamber.
The blood vessel leaving the right side of the heart called the pulmonary artery is divided. The far end (the end closest to the lungs) is sewn shut. The near end (the end closest to the heart is sewn into the aorta, which is the large blood vessel leaving the left side of the heart. A patch is sewn in this area to make the “new aorta” or neo-aorta bigger and stronger. Now all the blood leaving the heart goes from the right side of the heart through the pulmonary valve and out to the body through the new aorta. The wall between the heart’s two upper chambers is removed. This allows red blood coming back from the lungs to flow from the left upper chamber to the right upper chamber. The blood then goes to the right lower chamber and out to the body.
After the Norwood, the right ventricle pumps blood to both the lungs and the body. The Norwood procedure re-routes the blood flow around some of the defective areas of the heart by creating new pathways for blood circulation to and from the lungs. Nolan will be having a variant of this procedure called the Norwood-Sano, which means that a Sano shunt is being utilized. The Sano Modification of the Norwood involves the placement of a conduit (light blue tube in the picture above) between the pulmonary artery and the right ventricle.
The recovery period for the Norwood procedure averages 3 to 4 weeks, but please don’t be surprised if it’s longer (you’ll see). I can’t stress enough how serious of a procedure the Norwood is: it’s not a simple 1-hour fix, and it’s only the first of 3 surgeries an HLHS baby will need.
Yes that’s my tiny Nolan eating from a bottle I was giving him while in the NICU. This will always be an awesome moment for me and I’ll tell you why. Nolan wasn’t the best at bottle-feeding after birth. The nurses would give him about 15-20 minutes to complete a feed. If he couldn’t finish his feed on several occasions, they’d have to insert an NG (Nasogastric) Tube, which is a tube that goes in the nose and to the stomach for feeds. As you can see in the photos, he had an NG tube in by the time these were taken. They WANTED him to bottle feed, to maintain his sucking reflex, but they also didn’t want to take too long to feed. One nurse told me that bottle feeding for little ones is the equivalent of you and I doing a pretty strenuous gym workout. That burns a lot of calories for Nolan and he would need every single calorie for surgery, since he was so small.
It got to the point where Nolan, in his infinite stubbornness (recurring theme alert), wouldn’t drink for the nurses. None of them. Sometimes, though, he would eat pretty well for me. And just me. I was definitely feeling the Dad love there! So the nurses would let me hold him, which was priceless, and I would try to feed this itty bitty guy. The trick was to hold the edges of his ears just gently, which would supposedly help trigger his sucking reflex (who knew?) and use a couple fingers just under his chin. At first I was nervous because I didn’t want to do anything to hurt him or make him work too hard, but even the nurses were amazed: he was drinking for me! I tried to feed him as much as I possibly could because I absolutely loved that bonding time. I held him and he’d drink quietly and it seemed like all the problems would go away. It was a sweet time to be with my boy. And to be brutally honest, I wanted those moments with him as much as possible, because I knew what was looming and who knew how many chances I would get…
My bond with baby Nolan became a pretty awesome thing: he could be having a rough day with his monitor going all bonkers, and I’d walk in and talk to him and everything would calm right down. So he knew me…we bonded…and it was awesome.