Monday, November 21, 2011

at least they are happy!

Even though our life has been in complete dysfunction these past 4 months, I think we are handling it pretty well for the most part.  Radek is such a trooper…He truly is being so amazing about all of this.  He understands that his Mommy and Daddy have to leave him on a regular basis to go be with his baby sister.  He seems to understand that she’s sick and she needs us and can’t come home until she’s better.  Even when he see’s a big building on TV that resembles the hospital he points out that that’s where Peyton is!

Peyton on the other hand will not be home for Thanksgiving like I had hoped. Sad smile At this point I am not even counting on her being home for Christmas.  She was doing so good as they were increasing her feeds, but once they got to the goal  amount her body started stooling it out not absorbing it.  She has two HUGE hurdles in her way though…She has “short gut” from having 80cm of her intestine cut out, this is a huge issue in itself.  Most babies with ONLY the short gut issue have a really hard time absorbing food.  She has this to contend with along with the CF malabsorption issues on top of it.  Luckily her body should over come all of her “short gut” issues and obstacles within the first year. 

They also diagnosed her with a UTI last week, which she’s currently on iv antibiotics for.  They are hoping that might have played a role into why her body wasn’t cooperating with her feeds.
Her feeds were stopped on Friday and are going to start again today….SO YES this weekend was awful with a starving miserable baby.  Her nutrients are being given through her broviac which unfortunately doesn’t fill her stomach.  They are starting her feeds at 5ml and hopefully will increase by 5ml’s every 12 hours until she gets to 25 depending on how her body cooperates.

As frustrating as this all is I have to remember how far she has come.  I was having a conversation with one of the nurse practitioners the other day and she made it a point to tell me that when Peyton first got here they didn’t think she would make it.  This hospital gets the sickest of the sick babies from all over the world and they didn’t think that MY BABY was going to live!!  Not only is Peyton alive, she WILL BE FINE!!  Yes it’s taking MUCH longer than I want it to, but reminding myself how far she has come and just the simple fact the she IS HERE is what is getting me through this…

Not only is she here…but look at her!!!!!
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As you can see, Radek has been busy being a crazy rambunctious toddler….
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that LOVES to play in the dirt!
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He even made the transition last week from toddler bed to big boy bed!
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This is Rad the the Please Touch Museum..One of our FAVORITE places to take him and it’s only a mile from the hospital!!!
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3 comments:

  1. She's such a sweetie. Thinking about you guys all the time. xo

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  2. Thinking of all you often. You have a lot of strength through this- even when you don't want to. We struggled with Madeline being able to stool, and also gain weight after her emergency surgery at 48 hours old. It was agonizing....and although haven't had the same ride as you have had ...i understand your feelings of pain and frustration. I never thought we would get through it...and we did. Stay strong. Your little girl is so beautiful and she looks AMAZING in the new photos!

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  3. What a sweetheart! Looking at your pictures brings back so many memories for me. Watching your baby grow up in the hospital is heartwrenching! This is such a trying and frustrating time but you are doing a great job supporting your family! Peyton is beautiful and thriving and will heal soon! When my son Ben came home he was on TPN still through his broviac and we still had to NG him at home for a while. Thankfully he was eventually able to wean off of both of those and was tube free by the time he was 1 1/2. Hearing beeping machines at night was a bit annoying but way better than being in the hospital! Just a thought if they can get her feeds up and they feel good with where she is it may be an option to get her
    home faster by doing either one or both of those nutrient options at home. Not fun putting NG's down your baby's nose but being home makes it all worth it! The hospital even ordered a mini fridge just for TPN and I had a designated supply/mixing area in our office room at home. I know the TPN most hospitals use has a plant sterol lipid in it and they think that may be what causes liver damage. My husband and I did a bunch of research about Omegaven. Ben's liver enzymes were super high and he looked like a yellow ethiopian for a while! That is what his CF Pulmonologist called him! Boston Children's uses it and they use a fish oil based lipid in place of the plant based one. It has reversed some liver damage in children. Just another tidbit of information if she has to ever go back on it and you want to push for another option.Praying you will all be home as a family by Christmas!

    Hugs,
    Kati Pannecouck

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