The Walk of Shame

When we went home on Friday, I thought Hannah was all better.  She was able to nurse normally and it was great! At this point, I had somewhat of an emotional melt-down.  I was so relieved that she was ok and that we had identified the problem, yet processing in hindsight the horrifying reality of what could have been. Seeing that the immediate crisis was past, I finally had the luxury of ugly crying and releasing all that pent-up fear, worry, relief, and exhaustion. At the same time I suspected that maybe we weren't out of the woods and was afraid that we'd have to go back to the hospital, with all its uncertainty, waiting, and emotional exhaustion.

By Saturday evening, I realized that not much had changed from Hannah's initial condition.  While I could see some improvement in her ability to swallow right away, it hadn't lasted for more than a day or so.  She still had trouble catching up on breathing while I was nursing her.  Her Owlet baby monitor would signal a red alert that her oxygen was low while I was holding her in my arms. The low oxygen parameter for the Owlet is fixed at 80%, which is much lower than the hospital's 86.  

Overnight, Chris and I decided to try feeding her by bottle with a super slow-flow nipple so that she would not get overwhelmed by a high volume or overactive let-down, and we could moderate how much and how quickly she was eating.  He would give her the bottle for 5 seconds, and then we would wait 1-2 minutes for her to swallow, breathe and recover, then start again.  Just like before, she would try swallowing and stop breathing and start losing color.   We came home Friday with the ability to feed Hannah orally, but by Saturday, I could tell that it was not working anymore.  Somehow the dilation and botox procedures were not effective. She would need some kind of intervention for her to be able to eat without aspirating or she would starve and fail to thrive, and without going back to the hospital, there was no way to get that need addressed immediately.

What a fabulous view

So Sunday morning at 7am Chris dropped us off at the Emergency room after being home less than 48 hours.  I was very disappointed, but I knew that we needed to go back and keep working on a solution for Hannah. That walk down the hallway back into the peds ward was disappointing: I had just been there days before, and I now knew these people, had just said goodbye to them, and here we were again, right back where we started from.

Being retired, my parents have the luxury of being able to hop on a plane at a moment's notice, which my Mom did.  She even went to church first and fulfilled her obligations there before going to the airport, and was in our hospital room by dinner time.  I'm so glad she was able to come back and be "me" at home while I was at the hospital with Hannah.

Dr. Schramm stopped in to check on Hannah. He said he was disappointed to get the text that we were back, but not surprised.  One of the things we had learned along the way was that conditions like Hannah's are sometimes associated with an underlying neurological condition called a Chiari malformation. Babies under 30 days old have to be kept in the hospital for observation for 12 hours following an MRI, so we initially had planned to wait for her to be 31 days old.  Now that we were back anyway, it was the logical next step.

Monday turned out to be one of those wait-all-day-for-something-to-happen kind of days.  The MRI schedule was booked solid plus had 4 emergent cases.  Because of her size and age, Hannah would have to be fully anesthetized for it, and since she would be put under, Dr. Schramm decided to do another esophageal scope.  So we had to wait for MRI, anesthesia, and OR all at once, and of course she had to have an empty stomach while we waited.  We had no idea if or when all these things would align perfectly.  Sometime around 2pm some nurses came into our room and said, "It's time to go right now."  That's why I never left her bedside: wait all day, and then not even have time to go to the bathroom before heading to surgery again.

Trying out oxygen while she sleeps.