The Drain is Back Out!

Yesterday I went in to see Lilah, and when I arrived the physical therapist was there working with her. I thought how could they possibly wokr with a newborn, but she was just there to make sure her sucking reflexes were going ok, and looking at her muscle tone and such. She said she has a really good sucking reflex, and she holds her hands up by her face, and grabs at her face, which I guess they like to see in newborns. She said that preemies will tend to be a little far behind than full term babies, so she could still be slightly behind, and that doesn't necessarily mean it is because of brain damage. She said there would be no way to know for certain now, and even if there were certain parts that were possibly damaged, healthy parts of the brain can make up for the damaged parts. When she is discharged she will be set up with a physical therapist, and they will be able to track her progress and see if she needs help in certain areas. Some children with hydrocephalus have fairly large heads, so holding their heads up, sitting, crawling, can be very difficult. Lilah's head is a little misshapen but not at all large for her age. I am hoping she will be able to hit all her milestones, and I won't have to worry about any of this. She gave me a information packet that gave information on the difference between a preemie vs. a full-term baby. It had everything in it from preemie sleep patterns, to handling them, to positioning them. It seemed full of useful info, especially for when I take her home.

I noticed on the little message board in lilah's room, that there was a notecard from bella baby photography saying they had taken her picture, and gave me a link and password, if I wanted to order any. I was wondering about this, because I had signed a release when I was in the hospital for them to take her picture. I knew it was a little different in the NICU, but I wasn't sure quite how they went about taking the pics. I guess they go in there weekly and take pics of the babies to journal their growth and progress, then if you want you can order the pics. I ended up ordering one even though they were ridiculously expensive. It was in black and white and she looked so beautiful, I couldn't help myself lol I am just hoping that they will take another one when the drain and oxygen canulas are out.

I knew that the plan was to take out the drain today, so I waited until about noon then headed over there. I was dissapointed when I arrived and the drain was still in. I had to leave by three because Josh had an appointment, and I had no way to get to the hospital the rest of the day. I was sad that I wouldn't get to hold her. I was there for about an hour and the neonatologist told me he was going to take it out, I didn't know that they could, I just automatically assumed the neurologist had to do it, but I guess I was wrong. He told me I could leave if I didn't want to see, but I stayed in the room, although I definately didn't want to watch. Josh of course did, he is so strange sometimes ( :
The whole thing lasted about 5 minutes, the hardest part was getting all the tape off of her full head of hair, and this was the only part she cried through, she is such a trouper ( : I guess it's pretty much like pulling out a catheter or IV. I assumed it went in a lot farther than it actually does. The nurse told me they were going to do a quick ultrasound and take some pics so the neurologist (not Dr. Allen, he is on vaca still) could review them. She didn't comment on what she was seeing, and when she was done she said she would pass the pictures to the neurologist on call. Dr. Allen won't be back until thursday, and I guess he is the only one who can put the drain back in, so hopefully she doesn't need it by then. The nurse was happy that they could finally move her head around, because she felt her neck and could tell the muscle was stiff rom being in one position, poor thing! I was able to change her diaper, and I asked Josh if he wanted to do it, he was like no way, but when I started changing her, he came over and helped me. It was a real sweet gesture. Finally the best part about the trip, I got to hold her again! It had been a week and a day since the last time, so basically it felt like forever. I feel bad because every time I hold her they have to spike up her oxygen, but I guess this is normal.

I am planning on heading over to the hospital tomorrow with Josh and my mother. It has been two weeks since she was able to see her, because she came down with a cold and didn't want to risk being around her. Josh hasn't been able to see her as often as I have because he is trying to start his own business, plus working another job at night to make ends meet. He literally is working from 6 in the morning until midnight. He is amazing, I wish I could be more like him. When I am feeling down I have to remind myself that Josh not only has to worry about the baby, like me, but also has to worry about financially supporting the family, and being able to pay our mortgage. He handles all this with a positive additude, and a smile on his face, so I have been trying to do the same. It is hard sometimes, I hate when I start to feel sorry for myself, that is something I promised I would never do, so I just have to snap myself out of it and move on. Believe me I am trying my best!