Some updates..

Sleeping like a little princess <3


That funny thing on top of her head is her drain ) :







Things have been pretty hectic lately, but I want to make sure I try to keep up with all that's been going on with the baby and everything else. Lilah had her drain put in Friday, about 4 hours after her birth. I was able to go up and see her the next morning, and I was glad that the drain didn't look as awful as I had imagined it in my head. The fluid that comes out is a very odd color, it resembles iodine a little bit. I couldn't believe how much was in there, but our bodies constantly produce it, so it wasn't like all that was in her head at birth. I didn't think her head looked big when she was born, but I guess it had shrunk down 2 centimeters since birth. She looked a little better than I had remembered from the night before, and she was sleeping peacefully. The neonatologist told me the plan was to keep the drain in about a week, then see how the draining would go on it's own. Monday I was released from the hospital, and I have to say it was heart wrenching for me. I have given birth to three children, and they all have come home with me, so this was a very surreal, sad experience for me. My doctor offered to have me stay there an extra day, but I didn't think it would do anybody any good. My kids at home needed me, and missed me a lot, as I missed them. Before I left Monday Josh and I went up to the NICU to see how she was doing, she was awake the whole time and seemed very irritable. The nurse told us she wasn't sleeping very well, probably because she was in a little bit of pain. They don't like to keep them constantly doped up with pain killers, because then they come to rely on them. They like to have them deal with the pain, unless it seems they are extremely uncomfortable. They also started feeding her my breast milk which wasn't going over that well, she was putting out more than she was getting in. They had her at 6 cc's every 4 hours. She was peeing and pooping alright, but she was extremely gassy. The nurse pulled a tremendous amount of gas out of her belly. She also let me know that the digestive issue is a common problem in preemies, it is something they expect.



I spoke with the neonatologist, and they were running numerous tests on her to try to find the reason for the brain bleed. They were worried she might have a bleeding disorder, such as hemophilia, because her initial platelet levels were low. They re-tested and they came back normal, and all the tests they ran on her for clotting disorders and bleeding disorders came back normal. Like the doc said that is good news, but it doesn't give us any answers as to why she has this. He told me it's most likely one of those things that happens and we'll never know why.



When we arrived home I was a little on the weepy side, but I did ok. I feel so bad that I can't hold her, I mean it is such an odd feeling to have a child that is already 5 days old and you have never held her. At this point I would give anything for that. It is so funny the things you take for granted.



Today was a really good day. My mom Josh and I went to the hospital to see Lilah, and the nurse came in and told me she had a wonderful night. She seemed to be sleeping a lot more comfortably, and she wasn't nearly as fussy. She is still on a saturation of 40 % oxygen, and she seems to like it at that, because everytime they lower it her sats go down to the 80's. She also told me that she has kept my milk down, and was up to 15 cc's. She told me that Dr. Allen had been in every night around 5 to check in on how the draining was going, and he was impressed with everything. He happened to show up when I was there, and he told me that he was going to take the drain out Thursday, and he would do a quick ultrasound of her head, and take things from there. He said he would know by Monday if the fluid wasn't going to continue draining, and then he would have to re-insert it, and most likely continue doing that until she is strong enough to recieve a shunt. The best news of all was that if they take it out, I will finally get to hold her. I know once I am able to do that it will give me the strength to get through the next couple weeks. I am taking these bits of good info as little miracles. I know she is a fighter, she comes from my family ( : So I am proceeding with cautious optimism, I don't want to get my hopes up too high, but things have definately started looking up.