Back We Go

The week before Thanksgiving, Hannah decided that maybe breathing is optional. We, her doctors and other concerned caregivers feel otherwise. So after a quick but through office visit, we have been referred to the hospital for a few hours of observation. Just to get an idea of what she's doing I was told.
I am quickly learning two very important things. One, hospital time is in a time zone all of its own. It even moves slower than cowboy time or toddler time. Infuriating purely because there is nothing you can do to adjust it or fix the hurry up and wait conundrum. Madding for a girl who lives for that cursed little second hand on her watch. And yes, despite my best efforts, I am still late almost all the time. The other thing I have learned about hospital time is to add at least four hours to any time you are told. Swallow therapy at 9am....therapist shows up at 1 pm wanting to know why you already fed the baby. I digress.



After what should have only been at most a twelve hour stay, we discovered something very interesting with Hannah. At exactly 7:00 pm, she begins to desaturate. Not terrible but enough to set the alarms on her monitors off. By 8:00 pm, her nurse is standing by her crib with a slightly worried look. Maybe we'll try some oxygen, just to help her tonight.....I had no idea that we had just begun our journey with the tubes and tanks at this point!  In the morning her nurse tries to take the oxygen down. Hannah has other opinions about getting off the oxygen. She is on and off the oxygen all day. Her doctors are still convinced it is her reflux until she desaturates again, this time enough to bring in a few nurses at once. The oxygen is turned up and a note is put on her file to not wean her off of it. No one can figure out why she needs it. She has been growing and thriving like a little bundle of joy should. Her reflux is well under control and she doesn't show any signs of discomfort. Any apnea issues should have cleared up weeks ago, even months ago. The school of though on apnea and preemies is that by the time they pass their due date, all apnea problems should have cleared. That leaves her heart or her brain. Fabulous. Two organs you can't really just replace or go without. It isn't like they stock them down at the Walmart or anything. Her doctors order a few neurological tests to see where the problem lies. Here is Hannah in the middle of a brain scan called an EEG. Thankfully it was normal as the diagnosis that went with an abnormal EEG was enough to keep me from sleeping that night. (Lesson learned: When the doctor tells you not to google it until they know more-don't google it!!) 

EEG Fall 2010

After getting her normal test results, a few more specialists come in and out looking at Hannah. No one can come up with a reason for her oxygen need. After two more days of testing and "watch and wait", we were discharged. Now it was at 10:00 pm (hospital time-discharge by supper time-we promise) the night before Thanksgiving, but we were out! One of the most vivid memories I have is leaving the hospital with Hannah. I am rolling out a huge tank of oxygen on wheels and carrying my tiny little girl in her car seat. I hasn't learned to tuck in her oxygen tube yet, so we looked pretty pathetic. We pass Labor & Delivery and a new Dad comes flying out of the doors to rush to the waiting room to share his wonderful news with his family. Then he looks at us. The smile vanishes and he stares. I could see him deflate. I smile and tell him congratulations as I noticed his wrist band. He sort of smiles and walks off. I wanted to tell him that his wasn't going to be his kid. His baby is healthy(probably) and they won't be leaving like this. I felt so terrible for ruining his moment. Then I felt bad about feeling bad. After all, it was a hospital. That is what happens, right? It is were the sick babies go too. It was the first look of pitied sadness that I had encountered with Hannah. It wasn't the last. That has been one of the hardest things to adjust to on this journey.