Little Bumps In The Road

The last few days have had a few bumps in the road, but have mostly gone well. Friday was an emotional day for me to begin with. I think I have been running on adrenaline since Annie was born and by Friday was feeling spent, both physically and emotionally. We had asked about her bloodwork for DiGeorge on Thursday and no one in the NICU knew anything about it. They assured me that they would try to track it down, but on Friday said they had been unable to locate it and we would have to draw the blood again. I was frustrated by this, knowing that a lot of blood is needed for chromosome testing, but just wanted to get it over and done with. The nurses began trying to collect the blood and things went downhill from there. After three vein punches (I think that is what they called them), and a half an hour of listening to Annie cry, the lab informed them that because it was taking so long, the blood was already clotting and was no longer good. At that point I started to cry right along with Annie, so frustrated that even though we had taken measures to ensure we wouldn't have to do this, we were doing it anyway and our efforts so far were all for naught. They decided to take a break and give Annie (and Mom) a rest. Later, after I had left and Cameron was there, they did it again (this time in her arm, where the blood comes much more rapidly) and were able to get the blood they needed. The results will be back in 7-10 days, not in 48 hours like I had originally thought. I am relieved that this procedure is over and done with.

Annie seems to be working harder to breathe and on Saturday, the doctors ordered x-rays of her lungs because they were worried that she is trapping air. This means that she is able to get the air in, but not able to get it all out as she breathes. They said that if this was the case, and she was trapping a significant amount of air, they would not be able to send her home before surgery. The x-rays came back and looked good. She is not trapping air AND they said that her thymus is very large- a good sign that she does not have DiGeorge, as these kids usually have a very small thymus and sometimes no thymus at all.

Because she is working harder to breathe, the flow of her oxygen was increased yesterday. The nurse said that she seems a little congested and this is probably causing her to struggle. This gives me an idea of how miserable and scary it will be if she gets a full blown cold when we come home. We are going to have to be so careful about germs! They need to switch the type of oxygen assistance she is on in order for her to come home (right now they can adjust the percentage of oxygen and the flow can vary greatly, but the unit she comes home on will remain at 100 percent oxygen and allow me to make minor adjustments to her flow only). They don't want to switch her until her breathing is not so labored, so we are hoping this improves soon.

Her glucose has stabilized since they switched some of her feedings to a high calorie formula that is usually used for preemies. The only other issue we are working on is eating. She tires so quickly that it is difficult to get her to take an entire bottle. However, she is making progress (she was finally able to breastfeed yesterday) and we are grateful for every step in the right direction.

I still think we will be bringing her home sometime later this week if things continue as they are and she can jump these last few hurdles. What a happy day that will be!