Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)

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Friday, September 9, 2011

Keeping Whitney Well

This past week has been way busy (seems like I'm also saying that ha ha!)!  I'm loving this food and nutrition class I'm taking and so far I'm getting a really high A.  I was never really dedicated to good grades in high school so this is quite the accomplishment for me! 

Whitney saw a different speech/feeding therapist in Scottsdale because our usual one is outa town.  She was pretty nice and Whitney liked her.  She said we were doing all the right things to help Whitney learn to eat.  Then we got her weighed and it was the exact same as it has been all month!  16 lbs. 14oz!  I'm dying to get her to reach 17 lbs!  We got Whit weighed the week before her Gtube surgery and she was 16 lbs 14 oz, did not get her weighed the week off surgery, the week after she was the same 16.14, and now this week it's still the same! So weird! And frustrating! She's doing the same eating wise as she was doing with the NG tube. Still vomits once a day! Except for Sunday and today! 
Yesterday I took Whitney to the pediatrician to look at a rash on her body, actually it's about six rashes and they are from the sticky monitors in the hospital! Two weeks ago! Looks like ring worm! (haha Brianna!)  The dr. prescribed us some cream to help heal it, stronger than cortisone.  So hopefully that will help. 

 The Dr. also said that Whitney probably won't get the Synagis shot to prevent RSV this season.  Which is sad because she is still really at risk and it would be tragic if she got that virus.  That being said we'll get her the flu shot and will be keeping baby Whitney indoors once again! Some info: Nearly every child has had the virus at least once by age two. For babies born full-term and without complications, it is typically a bad cold. But, the highest risk factors for contracting RSV and developing complications like pneumonia, bronchiolitis, and other sometimes fatal complications are; being born premature, being born with a lung condition, or being born with a heart condition.  Whitney is at a high risk!  Preventing the spread of RSV is very difficult. Thus, we must be vigilant about keeping Whitney safe during RSV season (October through April). The virus is spread through physical contact, in the air via a cough or sneeze, or by touching an infected object. The virus can live as long as six hours on hands, and up to twelve hours on objects. If Whitney contracts RSV she will likely be hospitalized since she does not have the necessary immunities to fight off infection like the rest of us. Last year alone, over 125,000 infants in the US were hospitalized due to complications from contracting RSV. Please be prepared to take off your shoes and wash your hands upon entering our home.Please refrain from coming over if you are currently experiencing any illness symptoms, or have been in close contact with anyone showing symptoms.  If you are a parent of young children, please refrain from bringing them into our home during RSV season. The most common form of transmission is from child to child.  Please do not let these precautions frighten you or stop you from making contact with our family. They are simple precautions that every loving parent with a fighter like ours must take during this season. 

When I was reviewing my pictures I noticed that Whitney always grabs her little foot!

This toy vibrates when bitten on. It's actually pretty intense! Whitney will walk all around with it in her mouth.

Roxy Girl!

 Her shirt is wet from vomit and still grabs her foot.

I was worried this dress wouldn't fit...but I made it fit!

 She's obsessed with her pacifiers!...Should I wean her from them!?

 She just woke up from a nap so I laid her on my bed to tube feed her. Then I put her in the high chair with some snacks.  Her meal is about 20 mins. long.

When the pump errors, Whitney always 'helps' me shake the bag or push buttons on the pump!

Loves relaxing in my childhood rocking chair.

Chewy tube (feeding tool) in her mouth. You can see her Gtube sticking outa her shirt!

She loves my kisses! haha


  1. People get way emotional about the whole pacifier thing. Personally I think as long as its gone by 2 you're probably gonna be fine. If its soothes her - and esp w/ her oral aversions if she's cool having something in her mouth - I say go for it. I know if she keeps it up BIG time after a couple years it can screw up her teeth but that takes some doing I think. I'd ask your doc and her speech therapist about it. They're the ones that will be the most opinionated (rightfully) about it. ;)

  2. Thank you for your eloquent way of explaining your house rules re: cold season. This is our first cold season with Annelise at home and I'm struggling how to tell people to be cautious. I'm going to steal your words if that's alright! You put it so nicely!