That is absolutely the worst and most terrifying thing anyone has ever said to me. After we got Conor's diagnosis and heard that he needed surgery I remember thinking that I was going to be terrified about his heart for the rest of my life. Hearts are kind of a big deal, you know? We'd both been doing really well keeping calm throughout this whole ordeal. We'd gotten several comments that it was obvious we weren't first time parents because we weren't freaking out too much. But once we knew he needed heart surgery at five days old I was having a hard time keeping it together. Every time one of the doctors came in his room it was hard for me to keep from crying, and I'm definitely not a crier. Once we knew surgery was going to be happening shortly Marc called a friend to come help him give Conor a blessing. While he was there I asked for one as well and it was such a great experience. It was so comforting and calming and I just knew that everything would be okay. I immediately felt all of my fears for Conor dissipate.
We have felt so blessed throughout this whole experience. There were so many miracles and blessings and tender mercies every step of the way. We felt the love and support of so many people praying for Conor and for us all over the world. Three separate cardiologists commented on how amazing it was that Conor's wonderful nurse, Karen, recognized his early symptoms. They told us that the fact that it was caught while he was so young and his ductus was still open had everything to do with why his surgery was so easy and his recovery so fast. His little body hadn't yet started to suffer from many symptoms that would have caused him to be weaker for his surgery. They told us that there was another baby in the hospital right then that had had the same surgery, but it wasn't caught until she was ten days old, and she was still in the hospital two weeks later. It is amazing what a difference five days could make.
His recovery could not have gone more smoothly. He was off any sort of blood pressure medication within days of his surgery. We were told that it's practically unheard of for babies to not need medication for a minimum of two weeks after the repair Conor had done. The original timeline we'd been told was that he was looking at at least a week long hospital stay, including 3-4 days in the PICU. He was admitted about 7pm Tuesday night, had his surgery Wednesday night, and he was out of the PICU by Saturday afternoon and we brought him home on Tuesday afternoon, so he didn't even make it an entire week in hospital.
Nora got the first snuggles when we got him home:
Every single doctor and nurse we interacted with at Johns Hopkins was just amazing. It was comforting to me that almost every single nurse Conor was assigned had given birth to a baby of their own within the past year. They all treated him with so much tenderness and I could feel the love and concern they all had for him. His little lips were getting so chapped in the PICU, because he kept blowing little spit bubbles as he slept, and one of his nurses always remembered to come in and rub some vaseline on for him to make sure he was comfortable. They all would rub his little forehead and speak to him so soothingly whenever they had to take his temperature or blood pressure or any of the other number of things that they had to do that made him uncomfortable. With three other little people at home we couldn't stay at the hospital 24/7 and it was such a blessing to feel so confident in the people that we were leaving him with.
He has continued to do so well since we have been home. We had a home nurse coming once a week to check on him for awhile, and to monitor how his incision site was healing. I got to change his bandage everyday. You can see in the picture below how a small part of it separated a bit so needed a bit more time to heal up. There are stitches a few layers below the surface. That single stitch you see is where his chest tube was coming out - it was interesting watching them remove it, they already had the stitch in place and just sort of loosened it up and then pulled the chest tube out. Then the nurse just kind of cinched it up again. His doctor said that by next summer his scar will be pretty much invisible.
I'm not sure what I thought we were going to find out when we were headed to the ER that day. I definitely wasn't thinking it would be anything terribly serious. Certainly I didn't expect for him to end up having heart surgery the next day. Now that he is home the whole thing just feels so surreal. I look at him sleeping in my arms and it kind of feels like we watched it happen to someone else. Marc and I look at each other sometimes as say "did that seriously happen?". What a blessing it is to live in a time and place where modern medicine can do so much to fix a tiny little heart! His heart is about the size of his little fist, I am just amazed that doctors are able to work on something that small and do it with such finesse and precision.
February 7th through the 14th is CHD awareness week. One in one hundred babies are born with CHD. About 8% of those babies will have a coarctation of the aorta like Conor did, with boys being slightly more likely to have this particular defect. Two-thirds of those babies will have a bicuspid aortic valve like Conor does. Our doctor told us that as far as heart conditions go, this is the one to have. Conor should have a relatively normal life from here on out. For now he will go in once a month to have an EKG, an echo and blood pressure check. There is a 10ish percent chance that he will need to have another procedure if they decide his aorta wasn't widened enough. We should know if he needs that or not at about his six month check up. If he does it will be a much simpler procedure involving sending a balloon through a blood vessel in his groin up to his heart. After his first year he will drop from monthly monitoring to yearly and hopefully eventually will end up only going in every three years. He should be able to be as active as any other kid. He will be at a higher risk for needing medication to control high blood pressure as he gets older. Interestingly enough, having one baby with CHD slightly increases our risk to have another, though doctors really don't know why this is. Our chances only increase from about 1% to 2%, so not by much. And Conor's future children will also have a similarly slightly higher risk of being born with a congenital heart defect of some kind.
We are so, so, so grateful to have this special little guy in our family. We love him so much. His older siblings all just fawn all over him. Finn especially loves to love on him. He will come over and smother him with hugs and whisper "I luff you, I luff you, I luff you" over and over again and it melts my heart.
I had Marc pull out the camera to do a little photo shoot of him today. He is such a snugly, smiley, sweet little boy.
Big brother had to get in on the action, too, of course. I love watching their relationship develop.
