One thing I have heard over and over these past few days is the phrase "baby steps." The doctors have told us that Anne Marie's progress will be in baby steps. They say she is still "very sick" and "fragile" and that her prospects are still "iffy." They tell us this could be a long road.
In the past few days they have adjusted her ventilator settings in very small increments, trying to go down each time with the goal being eventually to wean her from the oscillating vent (we've been told this could take weeks or months). This morning when I went to see her, the two numbers that I look at first to get an idea of how she is doing were both down a little bit. These are her preductal and postductal numbers. Yesterday they had been in the 90s. This morning her preductal was in the 80s and her postductal was in the 70s and sometimes dropped to the 60s. She was also very restless and crying on and off.
There are other things the doctors check. They check her blood gas to see what her oxygen level is and also see how much CO2 she is able to get rid of. These two things were also off a little from yesterday. Her oxygen level wasn't as good and her CO2 was getting a little on the high end. So the doctors check various things -- X-rays (to see if her lung has collapsed any), pH levels, vent settings, etc. -- and they try to find out "what she likes." Based on this they adjust the vent. And these adjustments are tiny. Her right lung is still underdeveloped and her left lung (such as it is) really isn't doing anything at all. And no one knows how much her lungs will develop or how long it will take. So this is what they doctors mean by "baby steps" and "fragility."
We don't know what the road ahead will look like. There are lots of baby steps to take. Looking at the big picture this is what we see. First, she needs to have her repair finished. They moved all her abdominal organs out of her chest and created a diaphragm for her (albeit a GORE-TEX patch), but her stomach is still hanging there in a silo and needs to be put back inside and her abdomen needs to be closed. She also needs to be weaned from the oscillating vent (again, this could take weeks or months) and then she will go on a regular vent and then be weaned from that. She will also need to learn how to eat properly (CDH babies often have trouble with the suck and swallow motion) and finally be weaned from all of her pain medication. Again, no one know just how long this process will be. The doctors and nurses still say "if she makes it that far" when referring to the future.
All that to say: We don't know what the future holds. We are just trusting God for one baby step at a time.
Tonight when we left the hospital Anne Marie was relaxed and sleeping peacefully. The doctors had tweaked her vent and her numbers looked better. And she had gotten a visit from her 7-year-old brother and 11-year-old sister. As always, we are grateful for one more day and for the baby steps along the way.
This is the monitor we see every day when we come in. The green number is her heart rate, the red number is her blood pressure, the blue number is her preductal number, and the aqua number is her postductal number.