Most parents can relate to the idea of knowing terrible things happen while also thinking but not to us, not my kids, not our lives… Yeah me too.
It was the end of June in 2019, my daughter was about to turn 5, my son was just under two months old and perfect in every way. Our family was everything I dreamed about and more. After going into our second newborn wellness visit Russell’s doctor had some concerns about him not having strong pulses in his legs. She asked that we come back in a week. She added “it’s probably nothing, maybe even just me having a hard time finding it. Lets just be safe” And of course I live by the “lets just be safe” idea.
That follow up appointment did not turn out to be any better and she referred us out to a cardiologist with the comment “lets just have them do some imaging to be sure everything is okay” While this put a little worry on my mind, I looked at my baby boy who was a good eater, growing at a healthy rate and over all a happy baby and thought there is no way anything is wrong…
July 1, 2019, started like any other and I had no idea that this would be a day that changed my life forever. After the typical morning routine we headed to my moms house so she could watch Mia while both (Joseph and I) took Russell to the specialist. I remember talking with her about how I understood this was precautionary but overall I knew nothing could be wrong. I didn’t even bring extra clothes for Mia because I didn’t think this outing would last longer than a couple hours.
We went in and they did a EKG and an echocardiogram, of course I watched the screen looking for something. I remember reassuring myself that it looked fine (me, just 8 years shy of being done with med school) His doctor came in while I was holding Russell pacing while talking about the rest of our day with Joseph. We both looked at him waiting for him to flash a thumbs up or something to signal everything is fine. But instead he politely said ” Why don’t you have a seat so we can discuss what’s going on with Russell” Time literally stopped. I have heard people say that before but I never really understood it. I felt my whole body start to shake as the cardiologist explained to that our son was born with two congenital heart defects called bicuspid aortic valve and coarctation of the aorta. He explained it to us using words and drawings. Basically the aortic valve should have three openings his only had two and coarctation meant that there was narrowing. So instead of having a wide open valve that was pumping lots of blood his was narrow and working very hard to pump blood. After asking us if we had questions he said ” I have called the ambulance and they will be transporting you to the children’s hospital. His surgery will need to happen in the next 24 hours.” It honestly was all a daze. I just remember saying “I am riding with him there and need to call my mom who is watching our other child”
It wasn’t real, this couldn’t be happening. I hadn’t cried until I heard my mom voice “Hey Kayla, is everything okay” I’m sure the silence felt like forever for her but I couldn’t hold back the tears any longer ” Mom, you’ll need to keep Mia for a while” I was very clearly crying at this point. I will never forget this call because it was this call that made it all real. Saying to someone else my baby was not well and needed emergency surgery made it all real. I just remember hearing her restrain her tears and say “Oh Kayla, I will pray for him” It felt unreal, not my son, my son wasn’t the baby who needed extra prayers… But he did, he needed all the prayers.
We arrived to the emergency department and were there for what felt like forever before being transferred to the PICU. We couldn’t feed him since they wanted him in surgery as soon as the cardiothoracic surgeon had an opening. He was hungry and tired and cried and cried all while being hooked up to machines to monitor every part of him. The night had came and went and finally we were put on the schedule for surgery. We met the surgeon and he explained how the surgery would go. They would be going in through the back of his rib cage and cutting the bad part out and then sewing the two normal sized parts of the valve together. He would not be going on bypass because the doctor was confident that he could clamp both good sides, cut the bad stuff out and finish putting his valve back together in 20/ 30 minutes. He was very thorough and kind but he didn’t smile, he was very straight forward and polite but not warm. I only note this for what happened later….
We counted down until 4pm which was when they were able to get him on the schedule. Time didn’t go fast or slow, it honestly didn’t even feel real. At this point Russell hadn’t eaten for over 24 hours but seemed pretty calm. I spent most of the day praying to God to be with my son, and then it was time. The OR nurse came and as she rolled the bed toward the OR we walked with our 7 weeks old son as he was headed toward open heart surgery. The hallway wasn’t long enough and we stopped by a set of doors and she let us know that we couldn’t go any further but she promised to call with updates through out the 3 hour procedure. I looked at my son, kissed his head, my tears completely out of control and asked God to be with him before pulling away and watching her take him away.
Joseph and I stood there for a moment. He held me while I cried, he himself very emotional. We slowly made our way back to Russell’s room which felt so empty without his large hospital crib being there. We both sat down and waited. Waited for a call or for someone to come in to say something, give us an update or tell us he was okay. An hour and a half passed slowly but surely and my phone rang. She was a nurse calling from the OR they had a hard time getting him under general anesthesia but they would begin the actual surgery now. This meant we had at least another three hours or so. The wait felt like a life time, time passed slowly and ever noise or weird feeling felt so intense. The phone rang again after about two hours and 45 minutes it was the nurse from the OR again. We are closing up now and the doctor will be in to speak with you shortly. The sigh of relief laid over us. The calmness in her voice felt reassuring even though she hadn’t said anything. The next thirty mintues felt like they went even slower both of us watching the door waiting for the doctor to come in.
Finally the surgeon appeared in our door way smiling. He told us that the surgery went perfectly and that Russell would be back in his room within 10 minutes. The smile on his face brought me so much peace for the first time since we met this man he was smiling, his body language was telling me my baby boy was okay.
Seeing your child hooked up to ventilators, drainage bags and oxygen is a hard thing. Something I wish upon no one ever. His little face was swollen from being in surgery, his little body looked so small covered in monitors and having different tubes going into his body everywhere. His PICU night nurse told us that this next 24 hours were the important ones and that we would probably remain on this floor for the next 4/5 days at least. Running off zero sleep in two days, I sat by Russell’s bedside and watched him sleep. In the middle of the night the respiratory specialist came in to let us know that he was good to come off the ventilator and that he was breathing on his own. Through that night and early morning slowly the IVs were coming out and the different machines were being taken away. There was a moment when he was awake, his little face still puffy he looked at me with a little look of contentment as if his way of saying “its okay mom, I’m okay”
The next two days we were visited by different nurses, specialists, and even a support group for families of someone with CHD… Which we were now… We were a family who would be in a support group community, we were a family who was now and forever a part of a group of people whos lives were interrupted by something that really sucks to put it in G rated form. Something that is more common than most people know, something that is rarely talked about while also the most common birth defect in America. Yes, you read that right CHD (congenital heart defects) is the most common birth defect in America. But how many times have you heard about it, how many times have you watched a commercial on TV about it and its research. Probably never. Wild huh..?
Anyway… After 6 days in the hospital, we were sent home… Which no one really ever tells you about the anxiety that comes with that. In the hospital we felt this sense of security, if anything happened he was surrounded by a number of well trained medial staff that could easily help him. At home it was just us, we had to go back to caring for our baby like we were before but yet so differently at the same time. We had to bathe him differently, hold him differently, ensure he was getting his medication on time every day. None of it a burden but all an adjustment.
All this being said it is currently December 2020, which means we made it through this year. Russell is 1 and a half and aside from having a cardiologist we visit every 6 months and having two scars, he is a normal little boy, he likes playing outside and being rowdy. Life as a momma of a CHD warrior means always being aware of things that most people wouldn’t notice, it means every so often pressing on his foot to see how quickly it turns pink again and over analyzing if it was fast enough. It means watching him run and feeling a bit stressed when he is out of breath, it means always asking his doctor if he looks and sounds okay. A normal check up will never happen because every trip to the doctor puts me on edge that something will be wrong. Being a CHD warrior’s mom means my life is a little different but every time I see his face I wouldn’t trade it for the world.
To all the CHD warrior’s family members reading this, you are not alone and if anything else I am here for you.
-Until next time