Tuesday, September 29, 2009

Update

Kaitlyn's doing well.  They moved her from one wing of the ICN to another; it's a good thing that she's not as "high priority" to them anymore.  She's hitting all her benchmarks; they've increased her feedings a few days in a row, so now she's up to 30 ml (one ounce) every three hours, and tolerating it well.  She still has a few episodes of apnea and bradycardia (see last post), but they'll keep an eye on that.  They had to move her IV to her forehead, so she looks like a little unicorn.  We have to continue straight cathing her for now because her kidneys were slightly swollen the day she was born, but they aren't too concerned.  They will do urodynamics when she is discharged, which is where they evaluate her and tell us whether and how often she will need to be cathed when we bring her home.  We've both cathed her quite a few times and are already pretty comfortable with it. 

Shelly was discharged on Sunday and is doing great, feeling better than she has in months.  So we're back in the Family House for now.  We miss our other two kids, but are grateful for the chance to relax and focus on Kaitlyn.  We go in every day for a few of the feedings, to help change her and cath her and do all that fun stuff.  Grandma Burr is in town and is excited to see her today for the first time.

 

8 comments:

  1. Awww, she's so adorable. I'm glad to hear that things are progressing so well, and that Shelly is feeling so much better! We love and miss you guys =)

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  2. She is so blessed to have parents like you, and she is so cute. I am glad she is doing so well.

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  3. I just have to interject here that Kaitlyn is even more sweet and adorable in person than she is in the pictures. The first thing you notice is how tiny she is, and then how beautiful she is--like a little china doll. It's such a treat to be here and enjoy her. Kendall and Shelly are doing great at taking amazing care of her. Yay!

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  4. I am certain Grandma Burr just loved holding Kaitlyn for the first time. Congratulations on her arrival, she is so precious in pink! We continue to pray for your family, and look forward to your return.

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  5. SO beautiful. I want to hold her right now! We miss you guys. Giving Audrey and Damon lots of kisses and hugs for you.

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  6. I can totally tell that she's a little Burr. I'm so happy she's progressing so well and that Shelly is feeling better. We're looking forward to your return!

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  7. Hi Shelly. Becky emailed me yesterday and asked if I knew what was going on with your family...I had NO idea. I have stalked your blog for a few hours now and am absolutely amazed. You're a strong woman and I am SO amazed by the things doctors can do! Wow! Kaitlyn is gorgeous (as are your other two!). Your family is in our prayers...please let me know if I can do anything from afar. Sending lots of hugs and prayers...

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  8. Wow! I had a feeling you had your baby and felt I should check your blog. Can I just tell you she is beautiful and her back looks amazing. Tyson's synthetic skin patch looked way worse. I cannot belive how well Kaitlyn's has healed. I think about you family often and will continue to pray for you. I hope to talk to you guys again. Feel free to call if you have questions. P.S. Shelly asked me what level Tyson Charii malformation was, it was C5. I looked on our MRI records from USCF. Congrats, she is beautiful. We would love to meet you guys if you ever make it to Utah.
    Thomas's for Utah

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