Day 3

Anya is still on ECMO and has made it through the first 48 hours without any major problems! She also had her first dirty diaper, a good sign that her intestines are going to work well. They have been trying to get her to wake up; Sunday she was on a lot of sedatives because of surgery, Monday they took her off a lot of them, but she is still not very responsive. We spent a lot of time messing with her feet and her hands, trying to wake her up. Dr Kays is not too worried, but it is something to watch carefully.  There is always a threat that her brain could have suffered a lack of oxygen, and have permanent damage. That being said at no point has she ever had numbers that were dangerously low, so hopefully she is just feeling especially nappy.

So this is the first day since she was born I started having real anxiety. I had prepared myself for none of this to work, the fact that she made it the first 24 hours left me feeling euphoric. Today I was so exhausted, I hadn’t been pacing myself as  I should. It has been difficult for me to remember I just had a baby, and I need to rest. Most women who just delivered aren’t walking all over a medical complex and going out for meals, even if they are busy with their babies they are at home. I didn’t get to the hospital for a visit until late afternoon, and this made me feel really guilty. Then when I got there I started obsessing about Anya being so sleepy, and realized that in the scope of the problems that Anya will have to overcome, this is a minor one. How am I going to deal with the more complicated ones when this one has me so rattled?

I had a long, tearful talk with her nurse that left me feeling a lot better. When we started off on this journey I had two end results in mind- either she would not survive or she would, and would be normal. Now I am coming to grips with the fact that she may not be normal. (Really, any child of Adam and I is not going to be ‘normal’ but I digress) The  uncertainty of this is really overwhelming, and this only gets worse when I am in the NICU. When I am away everything is rosy, but when I am there the risks are staring me right in the face, impossible to ignore.

I am trying to think of this as Anya’s ‘fourth trimester’. She has a different developmental task than other babies. This softens the blow that I won’t get to hold her or treat her like a normal baby for a long time. There are a lot of crying babies in the NICU and I can’t wait to get to that point. Tomorrow I am going to try to visit when they have to assess her more, she has been more responsive then and it will be nice to be more involved.

Dr. Kays is planning on putting a chest tube into the left side of her chest tomorrow, I believe just to drain any fluid and take pressure off her small lung. There is still a risk of bleeding, so he is going to cauterize the incision as he makes it.

So for tomorrow I am praying for Anya to wake up and show us her personality, for the tube placement to go well, and for no bleeding. A good dose of peace would also be welcome. Thank you to everyone with your words of encouragement and your prayers! It is wonderful to hear how well Anya is loved!