July 17

I have been with you since 8:00 this morning, but still I am having Audrey withdrawals. Daddy is with you tonight while I get some things crossed off the to-do list that I keep putting off. One of those things is to update you on the last few days of your life! It is hard to keep this current because things change so quickly, and when we stay at the hospital overnight like we have most of this week, I don't have internet access. So here is the latest scoop.

Your fever broke a couple days ago—spinal tap results came back perfect, praise God! The doctors say you had a UTI and that’s why the fever. I know that made you so uncomfortable, but it is much better than one of your surgery sites being infected. You are such a good baby. I know I tell you all the time—do you get tired of it? It’s not just my biased opinion though; all your doctors and nurses agree that you are so tolerant and easy. Even still, you have been fussy for a couple days. I really think it is because you are hungry. They started your feeds on Monday but it was only 3 CCs an hour on a continuous feed. Just enough to start your tummy moving and make you realize you don’t feel full. Tuesday they moved you up to 6 CCs an hour, and today 9 CCs. That is less than half of what you need, but the TPN makes up for the rest. You are tolerating them well as far as your G-Tube and colostomy goes. Prevacid is helping with your reflux. You met with your new OT today to work on the bottle again. You already are cranky about it being in your mouth, but like last time, I am sure it won’t take long before your tolerance improves. Last night I had a dream that your surgical line had to be removed and I was so worried you would need IV after IV again. When Daddy and I came in to see you there was a new stat on your monitor, and it was clicking away the amount of milk you had taken by bottle. It was up to 50 CCs and rising—that would have been crazy enough. But in my dream, you were holding the bottle and feeding yourself! Now that would be an improvement! No huge rush though—the G-Tube buys us time to learn how to take a bottle without the stress of a deadline.

In the meantime I am learning how to care for your ostomy bag. Not a fun job. You know, for a minute I actually thought how I really lucked out in not having to change dirty diapers. What a silly mommy! And as much as I don’t like it, it is much worse for you. Your skin is so sensitive, and the area around your stoma (the part of intestine that is sticking out) gets chapped and bleeds from the stool sitting on it all day. Emptying it doesn’t bother you, but changing it sure does. We are all praying it doesn’t get infected so we can have the reattachment surgery as soon as possible. The ophthalmologist still hasn’t been by to fit you for glasses, but it doesn’t really make a difference since you haven’t opened your eyes. You turn your face towards me when I talk to you and you raise your eyebrows in the cutest way to “look” at me—I keep telling you the eyelids are the key! I am still worried about the eye-brain connection being established, so let’s make tomorrow the day…ok? Your blood pressure is still high. We have been blaming it on the pain from your surgeries, but you aren’t in pain anymore. So today you had another abdominal ultrasound and a follow up ECG. It may be your kidneys (which are a little small) or your PDA causing the problem. The test results should be back in a couple days. While they did the ultrasound, they also looked at your liver and right leg. The liver because we still aren’t sure what caused it to look different on the first one and your leg because it is larger than your left. This may mean that your surgical line has a block and would need to be taken out.

Whew. We still have a ways to go. But already so many issues have been resolved. Priorities now are getting you to open your eyes, lowering that blood pressure, and increasing to full feeds. Tonight, you sleep sweetly. Tomorrow we will wake up and have a great day.