Monday, August 22, 2011

Never Ending Setbacks!!!

I know I have been slacking on blogging lately, but to be honest I am pretty much too frustrated with everything at this point to write most days..I barely have the energy to call or text my friends and family to let them know what’s going on!

It seems like the minute I get excited about how things are going, the very next day everything starts going wrong and we are back to square one!  Not only is it agonizing watching my 5 week old daughter go through this, but being away from my family for such long periods of time is really starting to take it’s toll on me.

Peyton’s still not gaining weight like she needs to so they have decided to reinsert a picc line for her so she can get additional nutrients intravenously along with her bottle feedings. Her bottle feedings consist of breast milk mixed with fat lipids.  They add the fat lipids to give her even more calories in hopes she will fatten up!!

They sedated her with morphine on Friday and tried to insert the picc line by her bedside, but after almost 2 hours of poking and prodding at her they unfortunately weren’t successful.
Today they took her to interventional radiology to have it inserted.  This requires even heavier sedation and they do a continuous xray so they can see where the picc line is going as they are feeding it through her arm. 

They successfully got it in HOWEVER it fell out tonight after only a couple hours of having it put it!!!  It was quite traumatizing for me with the amount of blood that was coming out of her little arm.  SO now tomorrow she has to go back there again for more sedation and more xrays to have it reinserted.  I honestly can’t even cry anymore…I just feel numb at this point! 

Thankfully Radek seems to be holding up really well thanks to the help from my  AMAZING friends and family.  I honestly can’t even imagine how much worse this situation would be without their help!

I have lost count of all the xrays, heel pricks, and needle sticks she’s had, but I’m pretty sure for each one the number is close to if not over 100!!


  1. Praying for Peyton, you and the family.

  2. I know you probably read a ton of comments saying " I am sorry that you have to go through this..." I don't think any of us can imagine exactly what it must be like. I wish that we could make it all better for you and little Peyton. One day, sooner than later it will be better. Hang in there mama. We are rooting for all of you. hugs

  3. Im sorry for the pain you all are enduring. Praying always.

  4. Oh Jamie I wish I could give you a huge hug!
    I can only compare our first year with Soph to yours with Peyton. I know it feels never ending, I know it feels like two steps forward and about a hundred back but I promise you things will start to get easier once she turns that corner.

    Soph was in for nearly her whole first year and it was the worst thing I have ever experienced but now she's four and it all feels like a distant memory. Almost like it was someone elses world not ours.

    I hope soon you will be able to feel like that and get to enjoy having your family of four all together. I know this will happen.

    Lots of positive thoughts and prayers for you all and if you ever need to talk to someone that has experienced this, please get in touch if I can help at all.

    You are doing amazingly well, trust me.

    Much love to you all.



Related Posts with Thumbnails


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)

Total Pageviews