Monday, October 19, 2009

Happy Karsie!

video

After a brutal afternoon report (when Karsie usually gets fussy) we thought we would post this from the morning (when Karsie is usually happy).

Updates: A lot of attention lately has been paid to Karsie being home, and rightfully so, but we still have some hurdles to jump. First of all, she needs to gain weight still. Since she is out of the NICU we only do weight checks at the pediatrician's office, which we have weekly visits (our next appointment is Friday). She should gain weight by then, but the hope is that she gains a healthy amount. Last week when we took Karsie in to see Dr. Gorton, she showed us the growth chart and Karsie's status. She is well below normal for her age, but when you account for her prematurity, she is right on the cusp of the low range.

Another thing we look for to gain weight is to make sure she is keeping as much food down as possible. Since she has been out of the hospital, we are noticing either the same or a little less spit ups than normal. Yesterday being the exception (she had 3 pretty good sized barfs). The good news is that we can see she is working on suppressing the emesis when it looks like she will throw up.

Finally, her oral feeding is a big hurdle to overcome. First of all, it would mean that her ng tube could come out. So far that has caused a problem multiple ways. We have had to change it twice (I say "we" but in reality Nana has done it both times, and we know that was hard for her to do as Karsie HATES having that done). The first time the tube was clogged, so we had to change it. And by change it I mean take out the tube that goes from her nose to her stomach, pull it all the way out, then push, for 21 cm, the new tube back through the nose, down her esophagus, and into her stomach. Needless to say, there's a reason Karsie hates this. The most recent time was a sweet and a bit comical story. At around 3:30 in the morning, Michelle was changing Karsie's diaper. She had been up for 30 min. as it was her shift during Karsie's feeding, so Michelle was a bit tired and groggy. At that time the fire alarm went off for no reason whatsoever. In this sleepy state her maternal instincts completely took over any logic and she grabbed Karsie, who was still hooked up to the feeding pump, and took off for the door. The end result was that Karsie's tube was ripped out of her and Michelle was left standing on the front porch with her baby in her arms at 3:30 in the morning waiting for the fire to show up. Both Michelle and Karsie were crying. Luckily Karsie got over it quickly...like 20 seconds... it took Michelle a bit longer to feel better about everything.

Continuing on with oral feeding. Karsie has been doing very well on the bottle feeding. She has been letting us know when she is hungry, and is probably averaging 30 mL a feed when she is hungry. We almost had another full feed yesterday; she came up about 3-4 mL short. We also thought we were going to get a full oral feed this morning as she downed 30 mL in like 5 minutes. However, she was sleepy before her feeding and she slowed way down after we burped her and she ended up taking 46 or so.

Tomorrow we have a GI appointment tomorrow to make sure everything is going well with Karsie's gut.
Sometime this week, we should be having a physical therapy appointment here at the house. We put Karsie on the Boppy pillow face down to give her tummy time (as a flat surface won't do with her omphalocele unless we want to see her do The Superman). She was able to lift her neck for a fraction of a second multiple times. We were very proud of her.

Until later...

4 comments:

  1. what a little miracle...I loved seeing Karsie smile and coo! Poor Michelle, it is sooooo hard to think without sleep. I woke up in the middle of the night the first few days we had Brayden rifleing through our bed pushing Greg around thinking Brayden was in our bed, I was almost in tears when Greg said, "honey, he is in the pac n play next to your side"....He had never slept with us, but I woke up freaked out for some reason :) Will keep praying for Karsie to GROW GROW GROW

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  2. Ach! You are doing brilliantly well!
    Michelle, do not worry that you bravely rescued you baby from a potential fire! Well done you!
    The tube is going to come out once in a while, accidentally too. Such is life.
    I have never met a baby who enjoyed having the tube put back down, but it is over quickly, and then everything is fine again.
    Much as having a dirty diaper or empty tummy is cause for distress, then all better when fixed.

    I am so glad to hear you are taking her to Dr Gorton! She is wonderful! (Say Hi from me?)
    And her weight will not follow the usual guidelines of course. She is not a usual baby and has unusual circumstances. She just needs to keep growing.
    She can catch up later, or just wind up a bit smaller than the average bear.
    I pray she simply grows...enough, for her.

    What a joy to see the video of her smiling and responding to her world!
    You are doing so well with her, she is learning about being loved and how to experience happiness and how wonderful the world is.
    Fabulous job!

    You have been given a difficult task, caring for your adorable daughter, who faces so many challanges most do not. You are meeting that task and passing the tests with flying colors.
    God blesses you!

    Tons of love to all of the family!
    Jen x

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  3. The tears are still running off my cheeks from watching that morning post of Karsie's happiness. What a _beautiful_ daughter you guys have! May God continue to shelter her in the palm of His hand that she might grow to be a smiling ambassador for Him.
    -TL (dj kosmotronix' wife)

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  4. Owen was glued to this video! He was watching it and smiling and he kept looking over at me as if to say "Who is that girl?" Glad she had a happy morning! :)

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