We are finally home. Everett is fantastic and living a regular baby life now. It is 10 a.m. and he is currently sleeping in his 3rd outfit of the day thanks to blowouts and spit up. His heart is beating and our hearts are full.
I want to write about our experience because reading about other people’s stories is what helped me prepare for Everett’s unique start at life. Hopefully our story can help someone in a similar situation.
The first three weeks of his life felt like three years. We began our journey on Friday, April 21st with a scheduled induction. Everett was not ready and took his sweet time. We needed him to come as soon as possible because our surgeon was leaving the country in 5 days.
After a lot of different methods, a lot of talk about c-section, and lots of pain, Everett decided to come. He was 8 pounds, 6 ounces, and he was pink. This was a huge relief. We prepared ourselves to see a blue baby. Transposition of the Great Arteries is sometimes called “blue-baby syndrome.” My biggest hope was to get to hold him immediately, knowing that I wouldn’t be able to again for quite some time. Thankfully, the doctor put our pink baby on my chest right away. It was a short moment, but a special one.
The NICU team took Everett and Joe was able to go with him, but not for very long. We were able to see him again that night. He looked great the first night. The next couple of days were tough because it was a waiting game until surgery. On his second day, Everett had to get a balloon atrial septostomy. We prepared ourselves for this too, but hoped he wouldn’t need it. A balloon atrial septostomy is when a catheter with a balloon in the tip is guided into the heart, inflated, and pulled back through a hole, allowing his blood to mix.
He had a breathing tube down his throat from the procedure and it didn’t come out until after the major surgery. I found this to be one of the most difficult parts of our stay in the hospital. He couldn’t make any noise, so when he cried it was silent. The following day was filled with researchers, genetics, and consent forms.
On the morning of the surgery I got to hold my baby again. It was difficult because he was hooked up to so many monitors and machines, but it felt amazing to have him in my arms again. I got to hold him until they came to get him for surgery. The procedure lasted about 6 hours. Those 6 hours were the longest of our lives, but a nurse finally came in and said he was off the bypass machine and would be up soon.
Seeing him after the surgery was a huge relief. The surgeons told us the surgery went well, but that he was on a temporary pacemaker. His heart chambers weren’t communicating after the surgery, but they thought they would communicate again soon. The pacemaker news was a little disappointing, but the fact that the surgery was over and Everett was okay was all that we cared about.
Everett healed incredibly fast. They took the breathing tube out the next day. Hearing his cry was the best sound in the world. It still is. Each day he made incredible progress, but the chambers still weren’t talking.
A few days after surgery, a doctor came to talk to us about a permanent pacemaker. We honestly didn’t mind if Everett needed a pacemaker, as long as he was healthy and happy. However, the thought of another procedure was devastating for Joe and I. They explained that each day that passed meant a lower chance of his heart beating on its own. We were told that on the eighth day after the surgery, they would be putting in a pacemaker.
We prayed. Everyday, all day, we prayed. On the seventh day, his heart kicked in and began to work on its own.
That was our last hurdle. After the temporary pacemaker came off, we got to hold him again. Each day after that, Everett lost more and more wires, IVs, and tubes. He looked healthier and happier, until finally they told us we were going home.
The nurses, doctors, surgeons, and entire staff at Maine Medical were amazing. The NICU and PICU staff were incredible. They saved our baby’s life, and we could never thank them enough.
Thank you to everyone who prayed with us and for us. Our family was by our side through the entire journey. My mom and Joe’s mom slept in the waiting rooms and sat by our side everyday. We are so blessed to have the support of our family and friends and appreciate everyone.