Wednesday, September 12, 2012

Day 88

Today was a whirlwind of discharge preparations. The discharge nurse went over some g-button information, as well as reviewing infant CPR and discussing oxygen suppliers. Anya had two feeding sessions that were both difficult. It has been very hard for us to find a good position to sit Anya in that lets me have control over her neck while still keeping her in alignment as well as allows me a free hand to control the bottle. I was near tears when the OT trouble shooted me into a position we could both work with. I have a lot of numbness in my right hand and the standard hold she tried did not work for me. When she figured it out Anya did a lot better working on taking the bottle. She still does not take enough formula to make up a whole feeding but right now the goal is to get her to like bottle feeding.

Dr. Kays reviewed her MRI, cardiac echo, and her chest x-ray with me. As he had prepared us, her MRI is not normal, but not all that bad. Her brain is smaller than it should be, but there is no other abnormality. A lot of this is caused by the ECMO. Dr. Kays expects she will have some delays but nothing that cannot be overcome; she may just achieve some milestones later than a normal baby. The echo looked pretty good as well, she has a small hole between two of the chambers of her heart, and this is something that is open in the womb but closes later. It may be an issue in the future but will probably close on its own. The x-ray showed a little more fluid on the left side of her chest than he would like, and her heart has not shifted as much either, however his main focus is how she is breathing and he is happy with that.

It sounds like the earliest she will be discharged is Tuesday. The central line will be taken out next week. The goals are working on feeding and hoping that all of the medical suppliers line up well. I have been working with our family pediatrician and the group from Children’s to coordinate Anya’s care when we leave. When we go to the pediatrician’s office I plan on requesting that all the doctors and staff come in and meet Anya. Anya’s breathing is so fast that at first glance she looks like she is in distress, until you look closer and realize in every other sign shows she is not. I want them to know her baseline.

So I suppose we can set the countdown: estimated seven days to go!

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