Friday, March 5, 2010

IV Free

Claire is now IV free! It was pretty much just hanging on by the tape in her hair so I had them take it out. She is doing pretty well, but we've had to keep bumping her O2 up over the past couple of days to keep her levels around 90. She still isn't on much, but every time we move it up she's a little further away from going home. I'm still hoping for Sunday, but it may be Monday. Sorry for the poor picture quality, but I have to use my phone.

Tomorrow I'll get out of the hospital for a while. Jake heads back to CA on Monday for his infantry training, so I'm meeting them at the zoo to hang out with them before he leaves again. We had this planned before Claire got sick and I'm really bummed that we won't be able to take her like we wanted to.

That's one of the hardest things for me with her being sick...we were soooo careful to keep her away from sick people, were hand washing fanatics, and hardly took her anywhere. And yet here we are. I want to be able to take her places and do things with her, and I feel like we don't get to do that. I know this is a bad time of year, and she won't be quite as fragile after she heals from her surgery, but I feel like she's already missing out.

Darren is feeling better, but he still has a terrible cough. He came in for quite a while today and hung out with us though. He'll come back in tomorrow and stay with Claire while I go to the zoo.
I may have the day care situation worked out. I hate to be too happy about it for fear I'll jinx it, but if it works, it will be close to perfect!

I met the cutest little boy today. He was cruising around the floor in a red wagon. Every time his mom would ask him if he'd had enough he'd sign 'more' and off they'd go again for another lap. He had his heart surgery (for a slightly different defect than Claire's) a couple of months ago, and is back because he got RSV then a secondary infection. I talked with his mom a bit about his signing and his surgery. When I said goodbye to them, she asked if Claire had DS. I said yes and she got a huge smile on her face and said I was so lucky.

I really needed that today. The uncertainty of DS still scares the crap out of me. I needed to meet this mom who is thrilled that her boy is starting to talk at 3. I need to remember that Claire will do all the things that other kids will do, just on her own timeline, and to enjoy the slower pace. It is truly a blessing that I met this beautiful little boy and I hope I get to spend some more time with him. His wonderful smile was exactly what I needed.


  1. Hi Melissa! I just wanted to share with you that we have friends in Broomfield who have twin DS sons. Mike and Mark are around 40 and are the neatest guys! They have been active in Special Olympics...they swim, ski and play basketball. Also worked out with the CU football team in their training room while they were in high school. They both have jobs and usher at their church. Their mom Sandy was telling me that the Mile High Chapter for DS has been supportive. Has Mile High been in touch with you through the hospital where Clare was born?

    If you are still in Denver on Monday, call me if you could use a visitor!

    Love & prayers,

    Barb (303)651-2779

  2. so glad you met the cute little boy and his nice mommy while you are in the hospital, which is a very hard/not fun place to be! i am happy that claire is doing alright and i hope that her o2 levels will get into the 90s on her own very very soon!!!!!!!!!!! have fun at the zoo and enjoy a little time away from the hospital, the nurses and doctors will take good care of your baby girl and keep in mind how important it is to take good care of yourself, which is much easier said than done (said from experience!) :) thinking of you guys!

  3. Hi Melissa,

    Baby Claire looks soooooooooooooo cute! I sent a package on Friday to your Mom's house with some cute stuff for her. I hope she gets out soon so she can model them for us! I just wanted to share with you that both of my boys did not speak until they were 3! Devin had less than 10 words at 2 1/2 and Alex 15 words. Kids develop at their own pace and there are so many new methods even since my boys were younger. These are the best of times for Claire and she is a beautiful, happy baby. You should be very proud of her. We are all sending our love from NJ (minus the snow!). Hugs, Lisa, Rob, Devin and Alex

  4. Melissa, Claire is GORGEOUS... I'm happy I got to "meet" you briefly while you were pregnant. You are amazing. Just know I'm here if you ever want to poke your head in and say hi. Or ask questions :)


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