If you missed yesterday’s blog you can check it out here. Just to recap, when I was 20 weeks pregnant I found out that my son had a congenital heart defect the would require heart surgery. Yesterday we left off when he was born!
I had no idea if I would get a chance to hold Wyatt, let alone nurse him. Our cardiologist advised us that the neonatologist makes that call. I was overjoyed when they handed him to me and all I could do was give him a ton of kisses. They even let me nurse him which was honestly an answer to prayer. Seems silly, but I knew I wouldn’t get to nurse him for quite some time (maybe ever). Those first moments were beautiful to us and I’m so lucky Aaron thought to grab his phone to take some photos. Because of our precipitous birth, we couldn’t get professional photos in those first moments but even the photos he took I will always cherish. Pictures, even iPhone photos capture so much emotion and feeling…literally taking me back to those exact moments of getting to hold him for the first time not knowing when I would get a chance to again.
Wyatt was taken back to the nursery to make sure he was administered the medicine that he needed for his heart. We waited for about 30 minutes before they brought him back out to us. He was all ready for transport to Children’s next door. He was in a little space ship looking thing…it was incredible. He was hooked up to all the machines and was receiving his meds. I said my goodbyes and Aaron went with Wyatt in the ambulance.
I am so grateful that my doula, Brittany, was able to be there when Aaron left. She stayed with me and advocated for me to be able to go next door and check on Wyatt. Because I didn’t receive an epidural I was ready to go see him as soon as they let me. We eventually grabbed a wheelchair and made our way next door…note to anyone who may deliver at Washington Hospital Center and then go to Children’s their roads are not wheelchair friendly AT ALL. It was not a smooth ride over there, and quite painful to say the least but I made it to go see my little man less than 4 hours after I delivered. I was even discharged the next day and was able to stay at Children’s sleeping on the couch right behind Wyatt.
The reality of our life in those days was not pretty…postpartum recovery living in our son’s hospital room where no food was allowed (in your room). It wasn’t ideal, but I will say that the staff at Children’s is incredible. We had one nurse in particular that was with Wyatt for many days in a row. These people quickly become like family. The nurse to patient ratio is 1:2 so you get to see a lot of your nurse. They see you at your absolute worse, give your encouragement, and genuinely care about your baby. I have an incredible amount of respect for nurses after this experience.
Wyatt was doing really well at first and the constant feedback that we got is that they thought he had a coarctation but they couldn’t get a really great picture on the echo to see what was going on. His stats were awesome so they continued to monitor him, take X-rays, do echos, monitor, talk, change meds, talk some more, etc and so on.
A couple of things stand out to us during this waiting period. One…little Wyatt could not have anything in his gut. If his aorta was not functioning properly and his gut wasn’t recieving correct blood flow it could be very dangerous. He received IV nutrition and I pumped. I pumped constantly and a lot. It seemed like a full time job and my body seriously thought that I had 5 children because I was producing 10-15 oz every 2-3 hours. The second thing that made this time particularly difficult is that Wyatt was being so heavily monitored and he was also receiving lots of meds aka he was hooked up to a ton of machines. There were a myriad of wires which made it very tricky to hold him. Every time we wanted to hold Wyatt we had to get a nurse to come put him in our arms. If we moved the wrong way it would set off alarms and the nurse would have to come and fix it. So if I wanted to hold him, I had to make sure I was freshly pumped, peed, and not hungry so that I could hold him as long as possible.
Living in the CICU could make anyone go stir crazy, but I do appreciate our time there. It gives you a whole lot of perspective. We met families and made friendships in the community that I will cherish.
When Wyatt was 5 days old, they decided to get a CT scan to get a more clear picture of his heart. The results came back that there was in fact a coarctation like they had imagined. The good news is that because of its location they were able to go in from the back/side area instead of doing open heart surgery. Although thoracotomies are more painful, the recovery is much faster. We met with a surgeon and had a plan for his surgery on Nov 8 when he would be 8 days old. Days in between the CT scan and surgery it was clear that Wyatt was in heart failure. He just didn’t seem well, there was fluid on his lungs and he was struggling overall. As scary as heart surgery was, we knew that he needed it to survive and we felt that we were in very good hands.
Nov 8th came and I really can’t believe how quick the surgery was. They took him around 7am and he was back probably around 1 or 2. They have a new app that updates you during surgery so that time was not as stressful as I anticipated. What was the most difficult was seeing our little guy post surgery visibly in a lot of pain and intubated. There was absotluly nothing we could do for him. He was on some heavy sedation and pain meds like fentanyl. We would just stand and try to hold his hand, talk to him and pray for him. As a parent there is nothing worse than that feeling of helplessness. Our nurse advised us to go home that night and we decided to do just that. By this time our girls had been away from us for 7 days longer than they ever had before. Such a conflicting feeling of wanting to be at the hospital for Wyatt but wanting to be with our girls…. That is a night I never want to re-live. Every time I woke up to pump I would call the hospital to check in. Post-op you get one nurse assigned to your baby so that was nice that we could be in constant communication even at 3am.
The next day Aaron and I returned to the hospital. Wyatt slowly began to improve little by little. A couple of days later he was extubated and we were able to slowly introduce breast milk into his gut through a feeding tube. After he proved he could tolerate it, we were able to feed him a bottle. It is pretty incredible how fast he started recovering. One night a during rounds a doctor told us they were all shocked with how well he was doing!
A day or so later he moved down to the Heart and Kidney Unit (this is their step-down unit). After some set backs and struggles, Wyatt was eventually exclusively breast feeding which blew my mind. I did not expect that at all! In fact, I was told that it was not probable. Our little guy was proving them all wrong!
After all the follow ups, echos, EKGs, and x-rays they decided that he would only need to be on a diuretic. It felt like such a quick change from tons of interventions to only one medication. On Nov 17th, we were discharged and able to go home!! It was an absolutely beautiful day that ended with a dinner at my parent’s house to celebrate her birthday. We felt extremely grateful and still do.
The question I get asked the most is how is Wyatt’s heart now? The answer is…its being monitored. The surgery fixed the coarctation so the increased blood flow to the left side has caused it to stretch out. It is now normal size and functioning well. He has a bicuspid aortic valve which isn’t an issue now but could be when he is (much) older. His mitral valve is still small. He may need another procedure on it eventually but they are hoping for the best. Kids with heart defects often have learning disabilities so his development is being monitored more closely starting at 6 months. He is slightly under weight…his heart works harder because of his smaller valves so it burns more calories. We are doing our best to fatten the little dude up as much a possible. But otherwise he is a completely normal 3 month old baby. He is holding his head up, he cries, he giggles, he smiles. He is the sweetest little boy. We are thankful for his story and his journey.
I can’t finish this post without recognizing all the people that stepped up for us during this time. I don’t even know where to start with all the things we were given. We had care packages (some with food/snacks, others with books/games to keep us occupied at the hospital, some with lotions/soaps). We had a TON of people give us gift cards to Uber eats, door dash, Panera, Dunkin Donuts, and Grubhub (always good to not eat hospital food while recovering from birthing a baby). We had visitors come and see us. We had people entertain and watch our kids (if you have ever been around Joy at all you know that this is not an easy task!). There were SO many people praying for us, a church even gave Wyatt a prayer quilt. My wonderful parents had my girls living with them for 16 out of the 17 days Wyatt was in the hospital! My brothers watched Paisley and Joy when my parents couldn’t (even when they were sick). My best friend, Hadass, lives down the street from Children’s and she made sure Aaron and I were taken care of! This girl brought us groceries, fresh food, delivered Amazon packages, and even picked up floss for me. She would bring us things we didn’t even ask for and made sure we had what we needed…this includes carrying jugs of water in her Uber so we wouldn’t have to drink hospital water! When we got home, we had so many people rally around us…bring us home cooked meals or have food delivered to our house. I truly don’t think we could have survived this time without you all. We are just so blown away, humbled and grateful for our community. Thank you for checking in, thank you for the prayers, thank you for loving us and our son.
*Thank you Brittany Defrehn Photography for the documentary photos and thank you Anna Grace for the scar picture*