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!
17 months old (1) 20 week ultrasound pictures (1) 24 week ultrasound pictures (1) 2nd Annual Halloween Playdate (1) 30 weeks pregnant (1) 32 weeks (1) antibiotics (1) apples (1) applesauce (1) avoided a hospitalization (1) baby girl (2) Baby Girl Update (7) baby girl update (2) babysitting (1) belly pics (2) Big Boy Room (1) breastfeeding (1) breathe sticker (1) breathing treatments (2) bronx zoo (1) bulldozer (1) camera suggestions (1) Cereal (1) cf awareness video (1) cf cholocate chip cookies (1) cf mamas (1) cf medications (1) cf mommy skills (1) cf sucks (1) cf surgery (1) CFRI Conference San Francisco (1) chest cold (1) Christmas Morning 2010 (1) Christmas Photo Shoot (1) cirpro (1) Clinic Visit Update (3) Coupons (1) cpt (1) current medication and treatments (3) cvs (1) Cystic Fibrosis Masquerade Ball (1) date night with Rad (1) day trips (1) delta f 508 (1) dress up (1) Easter 2011 (2) Easter Egg Hunt (1) enzymes (5) exercise during pregnancy (1) extra treatments (1) favorite pics of 2010 (1) feeling defeated by cf (1) Finding out the cf dx for the SECOND TIME (1) fire trucks (1) First Birthday (1) flash back (1) Flash Me Friday (5) florida getaway (1) flovent (1) fun filled weekend (1) fun photos (1) fun times at the park (1) fun weekend photo's (1) Fundraiser (1) fundraisers (3) fundraising (2) georgia (1) getting rid of toys (1) Getting the amnio (1) good fortunes (1) great strides (3) halloween parade (1) healthy at last (1) helpful mealtime strategies (1) hiking (1) hospitalization (5) hospitalizations (1) How Radek got his name (1) hypertonic saline (1) hypertonic saline treatments (1) It's a Boy (1) it's a boy thing (1) jens wedding (1) July 2010 Clinic Visit (1) kind words (1) leaving for the beach (1) lessons learned (1) Light Up Shoes (1) loving toddler life (1) meconium illeus (1) minnesota (1) Mohonk Mountain House (1) monster jam (1) monster trucks (1) Months 1-12 (1) Musikfest (1) My Favorite Things (1) new cf clinic (1) new treatments (1) ng tube (1) nice weather (1) nicu (1) Nursery (2) October 09 (1) Our First Getaway (1) our trip to the pumpkin patch (4) outrun cf (1) outsmarting Radek (1) peyton is FINALLY home (1) Peyton's new hospital room (1) peytons 7 month pictures (1) Peytons newborn photo's (2) Peytons recovery (22) photo booth fun (2) photography contest (1) PICC line (1) pictures from the beach (1) Pictures from the NICU (1) playing in the snow (1) playing outside (1) please touch museum (2) plus side of treatments (1) Poop (1) pregnancy cravings (1) pseudomonas (4) pumpkins (2) punishment (1) rad and his cousin (1) Rad Meeting Peyton (1) Rad's trip to the Zoo (1) Radek and Santa (1) Radek Loves (1) radek loves to breathe logo (1) radek's current health status (14) Radek's Gene Mutation (1) Radek's Large Appetite (1) Radek's Sick :( (1) Radek's third hospital admission (1) Radeks Birthday (1) Radeks impression of our Mean Cat (1) Radeks list of demands (1) Radeks LOVE for Cars (1) Radeks WUS THAA phase (1) Rads first time using chopsticks (1) Rads Second Birthday Party (1) rainy day fun (1) raisins (1) recipe (1) salty skin (1) scuba diving (1) Setbacks (1) sickness (1) smoking (1) snacks (1) soap box derby (1) spring is right around the corner (1) stomach bug (1) swimming (1) synagis injections (3) team radek loves to breathe (1) thankful for cf (1) thanksgiving (1) the official cf dx of my unborn child (1) the possibilty my baby could have cystic fibrosis (1) the time out bench (1) Things we do for our kids (1) this time last year (1) three days to get better (1) tobi (1) trampoline to help clear mucus (1) vacation (1) Valentines Day (1) vest (1) weaned from the pacifier (1) Wordless Wednesday (8) worst week ever (1) Xopenex (1) Yo Gabba Gabba Live (2)