Swallow Study – Passed!

On Tuesday, Greg and I drove Caden over to Stanford for two appointments. The first one was with genetics as a follow-up to monitor how Caden was doing. When they saw him in the NICU they did an overall assessment and ran a bunch of tests to try to determine if he has any kind of syndrome. Those tests came back normal and from the exam there was nothing clinically that stood out to them. So they said they want to monitor Caden and see how he progressed to see if down the road, if there was something that became apparent about him. They are convinced that with as many defects/anomalies as Caden has, that there is definitely some sort of syndrome involved, but they just don't know what it is yet. They only thing they could tell us today is that his head seems small. His head circumference, length (22 inches) and weight (11.7 pounds) are all measuring just under the 3rd percentile so he is proportionate. However, they said that in “normal” babies, even if they do not get the nutrition they need (as in Caden's case for almost the first two months of his life not being able to have any food), their head still grows bigger in proportion to their body. So they said based on that, they believe there is something wrong with him. But to us, he seems perfect. They want him to be seen at one year of age for the next follow-up. But luckily they said we can go to UC Davis which is much more convenient for us. Who knows what the future will bring. But whatever it is, we will love our precious little miracle and treasure him.

During our appointment with genetics, Caden's g-tube started leaking and I panicked because I was afraid it was going to come out again. We are on our 8th tube since coming home from the hospital at the beginning of March! One tube is supposed to last three months! Our last one only lasted 4 days! Last week when I replaced it, I used our only back-up. So when we drove over to Stanford, I didn't have a replacement with me. When I saw it leaking I was worried it was going to come out and we would be in trouble. Thankfully the genetics doctors made a call and set us up to see a GI nurse who could help us assess any problems with the g-tube. She got us in just after 1 pm and was able to determine the balloon still had enough fluid in it. And, she checked to make sure the balloon wasn't leaking, which it wasn't. Then she gave us a replacement tube to take with us just in case. That gave me the peace of mind I needed. I was so glad she was able to get us in. As soon as we finished with her, we rushed over to the hospital for our swallow study.

The swallow study was scheduled for 1:45 and we only had to wait a few minutes before they called us back. I was happy to see Sandra, the OT feeding therapist who worked with Caden in the hospital. She was the one doing the studies that afternoon. They started him right off with regular thin milk and he fought the bottle in his mouth. He didn't swallow very much, but what he did swallow went down the right way and he did not aspirate at all! Yippee!! He definitely has a ways to go before he is transitioned to all oral feeds because he has oral aversions. But now that we have the all-clear on aspiration, we can get started. We have a feeding therapist scheduled to come on Friday to start working with him. I am so excited about it. The OT at Stanford suggested we could start feeding him solid foods because he for sure wouldn't aspirate on those. And, she said the solid foods might progress more quickly than the bottle feeds just because it's something completely different. I will discuss this with Caden's pediatrician, GI doctor, and the feeding therapist to come up with a plan that will work best for Caden. In the meantime, we are celebrating the day's success. We are so thankful we didn't have to wait three months to get the study done because it would have made it that much harder for him to transition to oral feeds. The earlier we start the better. We'll keep you posted.

Here's a photo of Caden with Sandra

Before we left Stanford, I had to take a quick tour of the new CVICU unit at the hospital. They opened in mid-April and we haven't been there since then. It is a beautiful unit and I'm sure it is a nicer place for families to be with their children. However, I hope we never have to spend any time in it again unless it's just to visit the doctors and nurses there to show them how big Caden has gotten and how well he is doing! But it was fun to see the new facilities. As soon as we finished there, we headed home and were happy to get here before 6 pm. It had been a long day with a lot of driving and we were glad to be home. It was also a hard day on Caden. He really prefers to sleep in his bed and doesn't do well sleeping in the car or while we're out and about. So, the poor baby was completely exhausted by the time we got home. Those kind of days are hard on him. But we all survived. Thank you all for your prayers as we work on getting Caden on oral feeds. It could be a long process.