Everything changes last minute.

Today is the second time we've had to change our hotel arrangements. First was because we didn't have the the $500+ to pay to stay in a hotel for a week in Boston, to be with Madison. That is every penny we have. So we lowered it to two nights which comes to about $270 and that is a half hour from Boston. The next change was today. We were told yesterday she might not go to Boston on Sunday because they changed the minds about it because of her belly and all that then they got a call from the hospital saying they have no beds. So instead of going up Monday a day after she is there we will go up Tuesday because she is now "supposed" to go Monday but again that can all change again. Another thing that aggravates me, your a "children's" hospital and have a place for parents to stay but can't guarantee the room and the room only has one bed for one of the parents to sleep on...seriously? AND there are near by hotels with a reduced rate for parents/families to stay at but the rooms still even then are $200/night...ridiculous. So now I can only stay a couple nights a half hour away from her because the hospital doesn't have the right set up or can for sure say we have a room. The social worker even called yesterday and was like yeah we had to give your room away, boy was I glad I decided we weren't going up the day she will be going up. This whole thing is really just a big mess. If it were up to me I'd say leave her here until her belly is under control and send her when she is a bit bigger, but really what do I know...

Off to Boston we go.

It is official Madison will be headed to Boston for her surgery and my husband and I will follow. Supposedly we can stay at the hospital which is good that way we can be with her. She looked to beautiful when we saw her yesterday. We saw so much of her eyes this time and for quite the while.I took one of the best pictures "with my phone" unfortunately...which I could have used my Canon without blinding her with the flash BUT those days will come. My husband changed her diaper this time...was funny to watch. He fed her a bit of colostrum and I fed her the other half...it was weird when I was feeding her, her eyes were open this time and she was looking at me...I never had that before. When the nurse was doing things and getting her situated she was crying :( but without sound because the tube is between her vocal cords...still sad to see. I saw her belly and to my husband and I it looks terrible...to the nurses its a tad bit better? I don't know I just hope the color gets back to normal and it comes down to a more normal size...she has no belly button because of how much it sticks out. But she is more stable now it seems to the meds for the infections seem to be working. There hasn't been a positive blood culture since the 12th. She can tolerate handling better. Her respitory settings are lower than before. Now they seem to be in the 20s and 30s. We are hoping after this surgery she will start to eat and handle it well.

Update here!

My husband and I have been sick for a little over a week which means we haven't gotten to visit Madison which is do to the lack of real updates. We are going to see her today but I thought I should update since I just got off the phone with on of her doctors. Respitory wise she is still good, head scans still coming back negative also good. They did remove the drain from her belly and are currently kind of waiting to see with that. They waited a week did a follow up echocardiogram and are still seeing the PDA (murmur) as being a moderate size and also finding a chamber of her heart becoming enlarged because of it. So because of her belly she can't try the final round of medicion they want to send her to boston to surgically ligate it, and well it will have to be done. They figured while she still isn't getting feedings they would take this time to send her out, get it fixed and then try and feed her. I've been told she has grown an inch which is awesome. I wonder if she will look any different since I haven't seen her in a while. There will be more updates to come.