Because Teddy had so many things going on, the Caudal Regression Syndrome diagnosis got pushed to the back burner after being told. There was nothing we could do about it surgically to repair CRS, so any interventions he would eventually need to increase his quality of life would come as he got older, and we learned how CRS was going to specifically affect him. In many ways it was harder to know it was just a waiting game, but at the time it was a blessing because it was one less thing that we needed to immediately focus on. So instead, we focused on addressing the immediate things: Teddy’s oxygen needs and his Esophageal Atresia which required constant suction.
Well, Teddy decided he was ready to take care of one of those immediate needs on his own! On September 17th, Teddy’s oxygen needs were so low that they tried him on room air, and he passed! This meant no more oxygen tubes and thick protective tapes! And while he still had his suction tube (known as a Replogle in the medical world), we finally got to see the majority of his adorable face! To say everyone was surprised he was able to be without oxygen support as quickly as he was, is definitely an understatement. Everyone was just blown away with how well he was doing, and we would find out just how remarkable it was that Teddy was on room air after we got to Boston.
Teddy still breathed like an energizer bunny though and all of that fast breathing made his body work harder and burn more calories. This resulted in super slow weight gain. I had been pumping since day one, but Teddy needed a significant number of calories (and still does) to grow. So, we were supplementing my breast milk with a high calorie formula. It took a long time to find the right number of calories, but finally a month and a half after his birth, Teddy hit 4 pounds! This was a massive milestone. We had hoped it was the turning point and he would start packing on the pounds, but unfortunately it was still a slow climb on the weight chart. In one of the videos below you can see just how fast he was breathing.
During this time, we just got to focus on and enjoy being with Teddy. We spent all day there and would pick him up as soon as we got there and play with him as much as possible. Teddy’s wide eye personality was really starting to grow. His love of books started in that first month and those social smiles really started to come out. He got his lovie Elephant, Horace, which was sooo soft and it surprised him! He loved on Horace through all of his ups and downs while he was in the hospital. The video we caught of him hugging Horace was just the sweetest. He was getting so strong too. He was able to hold his head up and started having a little more control over his hands. He also LOVED his paci and he learned to hold it and other toys.
We were waking up early and getting home late. We were tired, very tired. Every year I laugh at one of my facebook memories that talks about how after 15 mins of pumping I FINALLY realized I was pumping breast milk straight into my lap! I had forgotten to put the bottles on to catch it and I was so tired that I did not even realize I was getting soaking wet. Newborn life, am I right?
We also started learning more about Teddy’s conditions and finding parent groups on facebook. I can’t stress how important finding parent groups are when you have kiddos with special needs. While the doctor’s can give you the textbook answers or expectations, the parent groups are the ones that are going to give you the real life experiences and resources. While Jason did all the technical research on the diagnoses, I dug into the parent groups and would read every single post. This helped us know what questions to ask, things to look for, resources to tap, etc. It was overwhelming, but sooooo helpful. It would be especially helpful in the coming weeks.
Teddy was doing so remarkably well, better than all the doctors could believe, that as Teddy approached a month and a half old, the doctors started talking about the possibility of bringing Teddy home unrepaired, while we waited for him to grow big enough for surgery. This was something we never dreamed was a possibility and it was both exciting and absolutely terrifying. And if you are a part of the EA community, then you know there is nothing that causes more of a debate and divide then talking about bringing an EA baby home unrepaired.
Our relatively calm routine we had found was about to get a lot more hectic.
