Continuing my posts for Congenital Heart Defect Awareness Week, let’s talk a little bit about pregnancy. I hope that all pregnant ladies and all dads-t0-be get to read this, because it’s very important. The 20-week ultrasound is the “big one” and often the one where you get to find out the gender of your baby. This is also a crucial ultrasound for many people because it’s often where – unfortunately – they find potential heart issues with a baby in utero. Also unfortunately, some heart conditions are missed during this ultrasound because they don’t always look as closely at the heart as they should. I know, it’s sad…but it’s true.
So if you know someone who is having a baby, make sure they read this. If you are having a baby, please read this and remember this. Here are the questions you should ask at your 20-week ultrasound:
- Is the baby’s heart rate normal? A normal heart rate range is 120-180 beats per minute.
- Did you look at the arteries?
- Are the heart and stomach in the correct position?
- Do you see FOUR chambers in the heart?
- Is the heart function normal?
Early detection of a CHD is preferable so you can prepare for the best treatment. It’s not the best news to get, but trust me…it’s better to be prepared than shocked later. And if your baby’s heart looks great, then GREAT! Celebrate! If not, please know that there great treatment opportunities in place, and advances are made all the time.
Moms, please be sure you ask these questions. Dads, please be supportive and ask these questions too. Dads, please be sure you’re actually AT this ultrasound…you need to be involved, healthy baby or not. As parents, it’s your responsibility to advocate for the best care of your child; so ask those questions and demand they look more closely at the heart…every…single…time.
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.
Until this stage in the game, my wife’s pregnancy had been going pretty well: we had all the standard appointments, the babies were growing well, we liked the doctor. Then came our 20-week ultrasound, and the day that would really change our lives forever…
I was looking forward to seeing the boys, as always, and this was the big ultrasound where we’d get to see them more than usual. The ultrasound started normally, with the tech chatting with us and showing us everything about our two boys. To this day, I really can’t remember why, but my wife mentioned how her sister’s daughter was born with a heart defect. She and the tech chatted about it briefly as the tech began to look more closely at the heart. Baby B’s heart was fine, but as soon as she began looking at Baby A’s heart, all the friendly chatting stopped. In fact, she stopped talking altogether.
As I mentioned before, pregnancy terrifies me. And those moments of silents felt like eons, and I began to feel a chill then a cold sweat coming on. I got really, really nervous. Meanwhile the tech said, “Sorry, I’m just trying to concentrate a little harder here.” I knew by her silence that something was wrong.
We went to meet with the doctor, whose often joking tone was very somber and serious. He said the babies are growing fine, Baby B looked good, but he noticed something unusual about the other baby’s heart. He said he wasn’t sure, but he described it as “pretty serious.” And that’s about as far as we got in terms of an explanation. He would refer us to the high-risk doctor at the Womens’ Institute, who will help give a second look. Finally, before we left he said something along the lines of, “It could be nothing, but to me it looks pretty serious.”
I was in a fog. I’m not even sure if my mind was racing or if it shut off entirely. I have no clue, all I know is that all my pregnancy-time terrors came true…something was wrong with one of our babies. And I’d have to wait weeks to find out what it was. I hugged my wife in the parking lot and tried my best to reassure her and be strong for her. We both had to go back to work, though (I really didn’t want to), so off we went our separate ways. I got in the car and drove pretty much 25 feet before I completely lost it. I mean, what the heck? What the heck did we do to deserve this? Haven’t we been through enough? I was sad, I was angry, I was confused…it was crazy. I begged God to make it better, because babies don’t deserve that. He could make me sick if He wanted: Go ahead, God…take my arm, take my leg, take the nose off my face…whatever…as long as he’s ok.
I sat in the parking lot of my job and prayed that the next appointment would show that the baby was ok and that we’d be able to look back and laugh, saying “haha remember that?” I walked into the building and one of my co-workers asked how it went. I remember sitting in her office, still in a fog, staring off into space and saying “Not good.” It’s funny, I walked in not wanting to talk to ANYONE, but once I started to talk about it, I felt a little better. It made it real, like this is what it is, or at least this is what we think is going on. How bad it is remains to be seen…