Phew, what a new experience all around! To try to condense all the information and emotions into a few paragraphs and pictures is practically impossible! I'm going to try anyway.
Yesterday morning was very good. Penelope had been intubated Christmas morning so when we came in and asked, her blood gases started looking so much better (so much so that they had to run it twice in a row to make sure the improvement wasn't a mistake) that they decided to extubate her later. Little miss feisty decided to hurry the process and pulled it out before they could get to her and was doing so well that they decided to keep it out at that point. She's good at communicating what she wants! Her CO2 and other blood gases have stayed good since. Lydia is steadily improving on her breathing too and is now on a low flow canula with very low O2 assistance. Last night she even pulled her O2 out of her nose and it was down around her neck but her O2 levels were just fine. The only reason the nurse saw it was because she had to come in to change a diaper and noticed it wasn't in place. I'd say that's a pretty good sign of her lung development.
They had a repeat echo to check their hearts again in regards to the Ductus and the Aortic Coarctation. Both of their PDAs are still open, and it was confirmed that Penny has the Aortic Coarctation. She will have to have surgery to repair this within the next few weeks or months. This means she'll be taken to Le Bonheur for the surgery, or possibly a good time before to be monitored and fattened up, and then after she recovers she'll come back here to Methodist Germantown to be with Lydia. Here is a link to a more detailed medical explanation. Of course this is not something we were hoping for, but we're very grateful to live in a city with world renowned medical facilities for children.
The Cardiologist also believes that it was actually Penelope who had the cystic hygroma at 11 weeks. Since they switched positions just before birth it is possible that they had done the same earlier in the pregnancy. The Hygroma, single umbilical artery, single kidney, and aortic coarctation are all possible markers for a chromosomal disorder called Turner's Syndrome. Penny will be tested for this soon I imagine but it's not in the orders yet. Also we'll be having their DNA tested to see if they are identical or fraternal. It would be very rare for an identical twin to have a chromosomal disorder that her sister did not have (not to mention that Penny's hair is noticeably lighter than Lydia's) so the results of that test should be pretty interesting.
This morning Jonathan dropped me off at the hospital so that he could go get the girls' social security cards applied for (super dad). We got a good report from the night nurses that their bilirubin was down enough to take them off the phototherapy and their skin was doing so well that the humidity could be removed from their little heat boxes. This is such great news because it means we can actually see them (and maybe start Kangaroo Care!!) The nurse was just about to change the bedding out when I got here so I offered to help and I'm so glad I did! She let me cradle each girl in my arms while she changed the bedding!! It was like heaven. Lydia just relaxed immediately and slept through the whole thing. Penelope was looking around, looking at me, and just plain being adorable. I can't even begin to describe the feeling...I'm sure it's something only parents would understand for now. What a gift!
They're both sleeping very comfortably now and sucking on the tiniest pacifiers you've ever seen. It's been a peaceful day so far and we hope it stays this way.
Things to pray for:
- Continued growth for Lydia and Penelope
- Wisdom for us as we face decisions about their care
- Penelope's Aortic Coarctation
- Lydia's Ductus to close
- Rest and balance for Jonathan and me
- Continued success in pumping breastmilk
- God to be glorified
Jonathan had the chance to hold Penelope last night before I did so it was nice to get my turn! Here's his video.