Friday, July 29, 2011

Frustrated

I haven’t updated on Peyton’s progress lately because their really hasn’t been anything to update.  We’ve been pretty much at a stand still for the past 4 days.  She’s still only eating 20cc’s, which isn’t even half of where she needs to be.  We have to get her up to 35 before I can start nursing her and 50 before we can go home. 

The issue we’re having is that her output is higher than it’s suppose to be.  They calculate this by the amount she eats by the amount she digests and it’s suppose to be under 30%.   P’s been riding the upper 30% lower 40% range. The numbers for this was (read paragraph below) getting worse instead of improving like it’s suppose to be.  My 5lb 12oz baby now weighs 5lb 2oz.
 
I asked the doctors over and over again if we can start introducing enzymes to her, but they kept turning down my suggestion insisting that the volume of feed that she’s on isn’t enough to require enzymes.   For me it makes no sense that they wouldn’t put her on them because the symptoms that she has with her malabsorbtion are the same exact ones my son had before he started taking them.  Rad did not gain a pound until he started taking them, so how in the world do they expect her to gain weight without them??! 

Well THANK GOD a doctor who specializes in GI came to see her yesterday and went with my suggestion about starting her on enzymes.  She’s has now been on them for about a day and a half and not only has her output been decreasing, BUT she seems so much more comfortable, as in no more belly aches from her food not being digested properly!!  I’m praying these enzymes are the key to getting her feeds up and getting us the heck out of here!!!! 

This whole process has been so slow and frustrating and I’m really starting to feel the effects of my life being so dysfunctional lately.  I miss Radek sooo much…It is truly agonizing for me being away from him for such a long period of time..especially since I’m use to being with him every second of every day!! 

We’ve been doing this for 2 weeks now and although Shane and I have worked out a schedule, which consists of us switching out every  2 1/2 days so I can spend a day with Radek..I really don’t know how much longer I can do this to Radek. 

BUT SERIOUSLY…How do you choose between your kids???  This is by far the hardest thing I’ve ever had to go through in my life…I want to be here so bad for Peyton, but I don’t want Rad to think I’ve abandoned him….I seriously CANNOT wait until this hell is over with, but if these enzymes don’t do the trick P’s going to be down here for a very long time!!!!

In the midst of our NICU boredom and the fact that Peyton didn’t get any newborn photo’s taken, her and I decided to have a photo shoot the other day and I have to say…She’s quite the lil model!
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3 comments:

  1. Good for you for advocating for enzymes! I'm no expert on NICU babies and what Peyton has been through but I do know that Aidan absorbed nothing as a newborn until he started enzymes, like Radek. Even if he nursed 3 drops without enzymes, it went right through him. I pray that it is the answer for Peyton and you get home soon as a family of four. I cannot even imagine how difficult it must be. She's adorable!

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  2. You are such a GREAT advocate for your daughter! Sometimes it seems as though "mommy wisdom" is what doctors really need. Keep fighting for your little girl- you know her the BEST! Thinking of you and hoping that she starts packing on the pounds. Your "little model" is simply beautiful!

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  3. You are a GREAT advocate for your little girl. Sometimes "mommy wisdom" is all those doctors need! Hope P starts WOWING those doctors by putting on the pounds with enzymes! Your "little" model is simply beautiful!

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