Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)

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Lilypie Second Birthday tickers

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Monday, September 27, 2010

Lovin' Home!

It makes me so sad to read about the Cherubs who lost their battle with CDH. And sad for the babies who are still fighting. Sad for the parents who have to go through what I did. It is so real to me and hopefully you too from following Whitney's journey of survival.

yesterday I was visiting some friends and I came home to an amazing gift from a family we know from church. God still answers prayers, even worldly needs like money! We are so so grateful! Thank you everyone and I promise after this, I'll vacuum, and finish writing my thank you notes, just because I have them and want to personally thank all. Whitney got some new cute clothes as well from friends and family!

Bottle feeding is expensive, and now there is a recall on the formula we use! That was Frustrating! Whitney is on a special 24 calorie diet (compared to normal 20 cal.) So we have a recipe to get the added calories. Now we have to buy the concentrated liquid and add water. ($5 a day). Luckily Thomas went back to work and now we can pay some med bills!

i did a little Turbo Jam with my mom this morning! yay! It's fun stuff to exercise! Whitney had just eaten and was sleeping on her belly on the floor. And I still have to shower and make some phone calls to some doctors! Oh and go to the bank! Wow, never knew there was so much to do!
Also I need to get more pictures printed for the photo album, I'm way behind on that because we are waiting for walgreens to do 10 cents a print and we do like 100 at a time (we have a million!)

Whitney went to the Pediatrician the other day (with the help of my mom) and got a couple of shots. We feel that she does need to be vaccinated but spread out as much as possible and only the important ones first! She's not going to be exposed to Hep B or Polio any time soon! So they will all get done eventually. I also have to give her multivitamin with Iron due to ECMO stuff. She cried more with that than the shots! Speaking of shots, I have to go the dentist next week, blah!

also the other day my mom was talking to my aunt whose sister is a sonographer (ultrasound tech). My aunt shared Whitney's story with her and she said that in her 20 + years, she has never seen a Right sided (liver up) CDH baby live! I know there HAVE been survivors but it's just another example of how rare it is and a testimony builder of faith and priesthood power!

Whitney is really enjoying her baths these days! So cute and free and clear of nasal cannula's (only for the bath).

Chunky Monkey bouncer!

Also the other day, when she was sleeping on the activity mat, I put some pony tails in her hair! Yeah, it's that long! I could probably do four or five at a time, but only when she's asleep!


  1. Seriously, she is so cute. I'm glad you are getting the vaccines and that she is doing so well. I love the pony tails!

  2. I am so happy for you and Thomas..and for Whitney. Hooray for being home and settling in and thriving. Continues prayers...and lots of hugs!

  3. YAY!! I am so SO happy for you guys! She is such a cutie pie!! God is great!

  4. Glad to hear you are so thoroughly enjoying life at home with your sweet little girl!

    If you are using Similac, have you registered on their website (and told all your family and friends to do the same??) They will send you coupons every few weeks after you register with them. The early ones are $5 a piece - - not a huge deal, but it adds up!

    :-) Patty D'Angelo
    mom to Charlie, LCDH survivor, 2/4/09