It's been a while. Isabel is doing pretty well, but is still in the ICU. We had a good Christmas together. Not quite what we had hoped for since we were in the hospital, but we had a tree set up in her room and spent the night with her on Christmas Eve so that we could be there when Santa came, and see her first thing in the morning. It was great to all be together, and made us that much more anxious to get her home. The rest of Christmas break was filled with lots of family time and a very happy and comfortable Isabel.
However, on New Years Day, things got a bit more complicated. Seemingly out of nowhere, Isabel developed signs and symptoms of an intestinal issue. X-rays confirmed that there were tiny pockets of air throughout the lining of her small intestines. No idea what the exact cause was and we may never know, but possibly due to an infection. The treatment for this is to let her bowels rest (not feed her) and treat with antibiotics for 14 days. Today is day 12. During the first few days of this, she was very uncomfortable and had a very hard time settling down without the help of medication. Since then, the abdominal X-rays have shown that the air is gone, her intestines appear to have healed, and she has been very comfortable, happy, and playful - back to her old self.
Isabel has had many setbacks and complications, but this one sticks out to us and the doctors as being more concerning because she had been doing so well, there was not a clear cause, there is no real "fix" for this, and there was no way to anticipate this kind of thing. Other than an infection, one possible explanation is that her belly may not be getting sufficient circulation and oxygenation, which points back to her heart. Isabel's heart, though repaired, still does not function at 100%. In light of the belly issue, and because it had been a couple of months, she had another echocardiogram. The results were mainly consistent with what we already knew, but also indicated that her heart may be struggling a bit more to pump blood out to her body. This was and is all very hard news to swallow at this point considering all that she has been through and all that she has overcome.
With all of this in mind, we had a couple of meetings with her care teams this past week. Through those meetings we've gained more insight into Isabel's current situation and how it will most likely affect her moving forward. The doctors talked to us about each of her organs that has had trouble during her 6+ months of life and told us best and worst case scenarios for each. The short story is that she has experienced or is experiencing failure (not proper function) in four of her major organs (heart, lungs, kidneys and intestines). Of all of these failures, her potential intestinal failure is the most dangerous/scary. Her heart and kidney disease can be treated with medication, but it is much more difficult if she can't absorb the meds with food through her intestines. Likewise, if her intestines are not able to work properly, then she is not able to take in the amount of nutrition that is required to sustain growth or even the life of her small body. Isabel has shown us time and time again that she is one tough little girl. Not even the doctors can deny that. However, with all of these serious complications, she is not likely to have a long life, but no one can say that for sure. So, we are waiting to see what she can do when we start to feed her again later this week. It all seems very up in the air right now. She has made so much progress, but just doesn't seem to be able to get all the way to where we'd like her or need her to be. We are working on a plan to get her home sooner than later no matter what, so that we can just be home together as a family. It will likely be a least another month before that happens so that we can see just how much food she can digest, and if we can get her back on a stable regimen of oral medications. We love her beyond words and are just praying for whatever is best for her in the long run. We have incredible families and friends and a team of doctors, nurses, therapists, and social workers helping us every step of the way and do not feel in any way alone in all of this.
Thanks for you continued love, support, prayers, and good thoughts,
Dan, Amy & Izzy
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