Wednesday, September 15, 2010

Crossing Fingers, Holding Breath

I went to see Natters this morning and we eventually had a very nice snuggle. She had a hard time settling down because of the ET tube but once she did it was divine. Steve and I have both noticed how difficult it is to stay awake when holding her...she's such a snuggle bug.

I was there too early in the day to catch the doctor and Steve went in after her left for the day. We did hear, however, what he wanted to talk to us about. The official report is in on her echo and there is no visible change. There is also no evidence of the clot. Big sigh of relief. We would love to hear her echo looks better, but from what we've been told it will take a long time. The fact that it is not worse is incredible and we are very pleased.

The other piece of news is that while ENT has not come to meet Natalie, they told the neonatologist that they were looking at MONDAY!!!!!! Originally we were warned they may not make any moves toward scheduling until she was officially off the iNO, and even then they may want her off a few days before getting serious. Today she is at 2ppm, tomorrow should be 1ppm, she has the weekend to come off all the way so Monday is the absolute soonest. People, you know I am thrilled. I realize it is not a promise but it does show they are serious about moving ahead. Smiles!!!!

Do you wish I knew how to spell ophthalmologist? I realized that I have been missing the first "l" in previous posts. Sorry. I suppose it is a word I should learn well. We are still waiting for them to come see Natalie and give us their opinions. I have done some reading on infant eye issues and am really not surprised that she has developed problems. The poor child has been kept in cave like darkness (of course this is because she demands it) and her head is almost always sideways. When she looks straight ahead one eye is blocked by her mattress. Add in the high levels of sedation she's been on and the lack of normal baby activity I suppose maybe eye issues were inevitable. After the trach I imagine her eyes will be my next obsession. That and snuggling.

Right now I feel like I am chomping at the bit. I want Natalie to be in a position where she can be comfortable and move ahead developmentally. We are so close and I am trying to remind myself to be patient. Even when she can be more hands on there is a lot of catching up to do developmentally and I need to prepare for slow steady progress. I also do not want to get so caught up in her development that I miss just enjoying Natalie.

Nat gained some, then lost again two weight checks in a row. The nurses have talked them out of fortifying her more before surgery. They are too afraid it will throw her off and cause issues. I am increasing my pumping efforts and seeing some gains. I am determined to catch up to her needs. Seeing what a measly 4 teaspoons a day of formula has done to her digestion makes me realize just how much human milk means for her.

Thank you for you continued support and prayers. I can not express how much it means to all of us. I am always telling Natalie that people we have never met are loving her and sending prayers on her behalf. We are beyond blessed.


  1. Jen - I can't tell you how happy I have been reading all of these amazing updates on Natalie. She is such an amazing baby. Just know that I think of you everyday and pray for all of you. Much love and hugs,

  2. That is great news! I hope she has a nice, quiet weekend and that surgery on MOnday goes smoothly:)

  3. I do love her and I pray for her everyday! She has touched my heart and so have you!

    Love and prayers,