Cameron and I came home from the hospital last night as I am no longer a patient there. It was hard to leave Annie, but we know that she is in good hands and will be well taken care of in our absence.
Overall, Annie is doing very well and we could not be happier with how things are going. She is still on the oxygen canulas (Yea!) and has been weaned to a very low level of assistance. They monitor her very closely and constantly adjust the oxygen to help her be in her precise target range for oxygen saturation. A couple of times, they have been able to take her off the oxygen completely and she has maintained her levels for a while. She does best on her tummy because in this position her large arteries are not lying on top of her airways and much of the pressure is alleviated. However, they won't allow her to sleep on her tummy when she comes home, so they are more interested in how she does when on her back. As you can surely guess, we are thrilled with this progress.
She is having some problem keeping her glucose levels up and so far, they have not been able to figure out what is causing this. They are working to find the cause and remedy this problem. She has started to drink from a bottle but usually tires very quickly so we end up feeding her through a tube. They want her to be eating without a tube when we bring her home, but while her glucose is low, they are more focused on making sure she gets the nutrition she needs. So, once the glucose levels are stabilized, we will work on getting her to eat better.
Yesterday, she was ready for a diaper change and I happily volunteered. You have to know that diapering and dressing a baby is an entirely different experience when they have several cords and lines coming off of their body. I still felt confident that I could handle it as I have had many chances to change a baby in my life. Let's just say that after she had soaked her onesie, her outfit and both blankets in her crib while I was fumbling with the diaper and we spent the next twenty minutes changing all of her clothes and linens, I was humbled and grateful for a very patient nurse.
Right now the plan seems to be that once we figure out the few issues she is having we will bring her home and let her grow stronger for a few months (hopefully 6) until she is ready for the surgery. When she is close to being released, I will go and spend a night or two in a room across the hall from the NICU with her and take care of all of her needs on my own. This is a way to make sure I understand all that she needs and have any questions answered before we are on our own with her. Keep the prayers coming as they are working miracles so far!