Wednesday, August 10, 2011

In it for the LONNGG Haul!

We are now going onto week 4 of this place and I’ve finally come to terms with the fact that Peyton won’t be coming home anytime soon.  I was previously driving myself crazy by going day to day convincing myself that “tomorrow” is going to be the day they let us go home and everyday ending up in tears and completely disappointed.
She is still having a really hard time putting on weight so we are now trying a new method.  They were holding off on doing this hoping she would gain weight without it because it's time consuming, messy, and we can't go home while doing it. It’s a method called refeeding.  The refeeding process works by using the contents that’s currently being digested into her ostomy bag and refeeding it via a pump into the other opening of her intestine called the mucus fistula giving the lower half of her intestines the ability to absorb the nutrients as well.  This will give her body twice as much of a chance to absorb the nutrients in her food and hopefully FINALLY put some weight on her little 5lb self.  Since we had to resort to this in order for her to gain weight we won’t be coming home until they do her surgery to reconnect her intestines, which they won’t do until she’s at least 6 weeks old giving her body plenty of time to heal from her first surgery.

She is going to be 4 weeks old tomorrow and I’m guessing it’s going to be about a 2 week recovery process if all goes well…soooo it looks like P and I are going to be a residents of CHOP for another 4 weeks.
YES it stinks, but I figured at least we will be getting the surgery over with and I won’t have to worry about coming back here to have it done like the original plan was.  I also figured since Radek has become somewhat adjusted to our new routine of Mommy and Daddy splitting up caring for him, it will be easier to leave it like this for now instead of coming home getting him readjusted to just have to throw off his routine all over again.

Now that I’ve FINALLY accepted and come to terms with my new “temporary” lifestyle I’m in a much better place mentally and emotionally. 

Peyton WILL be fixed and life WILL be normal soon!  I have to remind myself often that although my situation is difficult it could always be worse!!

Here’s some pictures of where P and I have been living. 

This is the name tag on her bed that one of the nurses made for her…

Her room…

These are all the machines and medications and iv pumps she USE to be hooked up to…It’s crazy right?? All that for a 5lb baby!!!!

The most uncomfortable chair EVERRRR!!!!  I pretty much spend allllll day long sitting here and most nights sleeping here! 

This is the clipboard where I hang up Rad’s artwork and the encouraging notes from our friends.  I also have a picture on here from when Peyton was born looking close to death.  When I get frustrated and feel like this process is taking forever it helps remind me how far she has come.

This is what her room currently looks like.  She’s stable now so she gets a REAL crib! Notice all the machines NOT there...just a small little IV pole!  The scale at the bottom right hand corner is used for breastfeeding.  I weight her before I feed her and right after and it calculates how much she ate.


  1. Jamie,
    Did they ever start giving her enzymes? What formula is she on? Just curious!

  2. Building that solid base for Peyton is SO important. I know it stinks, but you'll be able to look back in a couple of years and see it as a small blip in time that passed quickly! Stay strong momma :)

  3. You really are such an inspiration! I am praying for Peyton and your whole family!!!

  4. Thinking of you and Peyton often. I really hope her little belly is all better soon. It's so much for one family to handle. You're such an amazing mother. Keep on truckin' Peyton and Jamie!



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