Monday, October 24, 2011

Catching Up

I’m sorry I haven’t had any updates lately on the status of Peyton, but life has been crazyyy to say the least!  She has now been there for over 100 days (which I honestly CANNOT believe)!  I seriously feel like my life has been on hold since July 14, the day she was born.   It’s as if someone pushed a pause button on that day and it’s not going to play again until she comes home. 
Lately I have been spending a lot less time with her at the hospital and a lot more time home with Radek.  I’ve been making the hour and a half drive back and forth to and from the hospital probably 4 times a week.  This has been going on far too long for me to be away from Radek for more than a day at a time anymore!  Although it does make me feel HORRIBLE leaving her for sometimes 2 1/2 days, I can’t bear to be away from Shane and Radek for such extensive amounts of time anymore.  I've been feeling extremely homesick and am beyond sick and tired of sitting in the NICU (which doesn’t even have windows) for hours upon hours a day, just sitting there holding her waiting for her body to be ready to come home. 

Last week was stressful!  Because of some blood work results, they started thinking she was born with a congenital liver issue.  If this were the case it would’ve needed to be repaired with yet another major surgery.  THANKFULLY after lots of extensive testing (one that included sedation and a long needle going through her liver into her gallbladder ) her liver is fine and another surgery is not needed!!

She is about halfway up to her goal for the total amount of milk she needs which is still being given through a ng tube.  I’m hoping in the next 2-3 weeks we will be able to start giving her the feeds with a bottle or better yet…having me be able to nurse her. I’ve been pumping this entire time and let me just tell you…pumping SUCKS!!  Especially when I’m home trying to spend quality time with Radek and the alarm goes off for me to pump (something I need to do every 2-4 hours) so I have to stop what I’m doing and sit there for 15 minutes while trying to explain to a 2 year old why there is milk coming out of my boobs! lol  Although he does LOVE being able to push the buttons on the pump!!  Having to pump while I’m home is just one of those constant painful reminders that Peyton isn’t here with us. 
On a good note…she is gaining weight and looks great. My goal is to have her home with us by Thanksgiving, hopefully her body will cooperate with that!!

Recently I’ve made it a point to try and live life for Radek’s sake.  I feel as though he has been missing out on so many fun things because of this situation.  He didn’t even get to go to the beach this summer!  So this weekend I was determined to take him to the pumpkin patch and although I had to take him by myself AND even though it was hard for me seeing all the families with their little babies along with them, we still ended up having a really good time!

Here’s some pictures of the pumpkin patch AND new ones of Peyton!!
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pumpkin patch
IMAG2623IMAG2625IMAG2718IMAG2780me and the kiddosIMAG2609

2 comments:

  1. She looks so good Jamie!! Please know that your blog inspires me. I have a 4 month old daughter with CF and this is all so new to me, your such a great Mom!

    ReplyDelete
  2. I'm glad to hear that Peyton is gaining weight. She is looking great and is adorable! Rad is of course as handsome as ever. Hang in there, I can only imagine how hard this has been on all of you. Hugs.

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