Wednesday, June 22, 2011

June 22, 2011 - Day #18

Today we got a mat for the floor!! I know that I don't really need to "worry" about Riker's milestones but I just want to do all the normal things everyone else gets to do with their babies. No matter how short or long her life is, I want this time here in the hospital to be as good as it can be. I want Riker and Valentine to play... I want Riker to develop and enjoy everything she can. I don't know how much time she has and I don't want any of it to be spent lying in bed while she's awake. Other parents don't leave their babies in their crib all day long and I don't want to leave Riker there either.

Riker's not a great sleeper while I'm away. It seems that as soon as I get to the hospital, she feels safe enough to sleep. I know part of it is she never wants to miss anything. I've always been the only one she'd relax with. I so badly want to be with her all the time - I also want to be with Valentine all the time. I know they'll both be ok. I know they will adjust and not remember most of this. *I* don't feel ok, though. I miss them - it breaks my heart to leave either of them. When I'm with Riker, I nap when she naps. When I'm with Valentine, I go to bed early. This doesn't help the exhaustion caused by the stress... the driving back and forth... the trying to get it all done.

The doctors continue to be concerned about Riker not taking a bottle. Dispite my insistance that this is normal for her, I think they are more concerned than they need to be. They've put in orders for her to work with a nutritionist and a speech therapist. I am 100% supportive but still not yet concerned. I have confidence that she'll get there. This is more about personality than ability. They worry it's a development issue.

The nurses are still only giving Riker 1 ounce of breastmilk every 4 hours. I'm not sure why they haven't tried to gradually increase this - especially with all their concerns about calories and wanting to get her off the NG tube. I'll be discussing these issues with the team tomorrow. They're a great team of people here but sometimes I just don't think they're on the same page! I'll set them straight ;)

Her weight is currently at 11lbs 11oz and when she came to the hospital she was only 11lb 20z. I truely believe that the weight she is losing right now is still fluid. It would make a lot of sense that a baby who's been through everything she's been through over the last two weeks would lose weight not gain 9oz. We'll see tomorrow, though.


  1. I just happened to randomly stumble upon your blog. We don't know each other and it may not mean much, but my heart goes out to you and your wonderfully strong family. Much love to Riker. You are in my thoughts.

  2. Would you want to spend some time recording yourself reading bedtime stories to play at the hospital for her while your away?

  3. She is looking better and better!

  4. I just heard about Riker and the terrible ordeal she and you are experiencing. You all are in my prayers. I will be in touch to see how I might help.

  5. Dresser family,
    you are all in our thoughts and prayers. I read this and it breaks my heart that you are going through this, i have three children and i cant imagine having to go through something like this. I can see by reading your posts that you are a very strong family and Riker is a very strong little girl.
    My prayers are with you all...