Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)

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Monday, August 8, 2011

All About Whitney!

I've learned that "titles" are very important.  It's what gets us intrigued about reading the story. Well, it's really hard for me to come up with a good title but I hope you read it anyway!

I feel like I haven't written in forever!  So the week right after Whitney's 1st Birthday Luau was super busy.  First off, the Luau was a ton of fun! I will post the pics as soon as I get them!  The Monday we spent almost 6 hours at PCH just for 2 Dr. appointments.  First was the Cardiologist.  Whitney got an echo, which she hated this time.  She was fine when she was younger but now she just cries the whole time and we can't console her.  Everything is still the same in her heart which is a good thing.  Dr. P. thinks she need another Cardiac Cath in a year and to stay on the medicine till then (to help with her pulmonary hypertension). 

My mom and I ate in there cafeteria.  It was super yummy and not expensive!

Then we went to see the pediatric surgeon for a follow up.  When she came in and saw that Whitney still has the NG tube she said that Whitney is the last person she want to do a G-tube on.  And... I was like really, cause we want one.  So then she said that it is do-able.  I guess Whitney just has some complicated insides and lots of scar tissue.  So I only trust this surgeon to do it. They showed me what it looked like and told me a little about it.  She's just had to tube for so long and I really hope that this will help her!

I have been doing a ton of research about G-tubes (as you know), just trying to learn everything.  It's really not that big of a deal.  *Still wishing she would eat*

While at the hospital I'm reminded of how much harder it really could be.  There was a baby on a breathing machine (trach) and she had a lot of gear! I can't believe I complained about caring the oxygen, oximeter, and feeding pump.  There could have been so many and much worse effects of CDH. I realize how blessed I am to even have Whitney and that she will live a normal life.  I thank my Heavenly Father daily.

The next day was feeding therapy and a weight check.  Whitney gained 8 oz in 2 weeks.  Now she weighs 16 lbs 10 oz.  Later that week she had physical therapy and they say she is doing really good and will need it less often! And to focus more on speech therapy.  Then we went to the Pediatrician for her one year checkup.  Got the last two shots in a series.   I do like her but she was just telling us some "normal" things to be doing like start weening her off the bottle.....uh!  No prob she hates the bottle and will only drink in her sleep.  But the therapist said to keep doing the bottle but push for the cup and try a straw now (not asleep of course). Any way that was a really busy week but we ended with BOWLING!  so fun!  Whitney came for the first time!

Whitney also got another upper GI to see her stomach.  The surgeon needed it to prepare for the G-tube surgery.  I thought it would be easier because they would just put it through the tube.  But not for poor Whitney who screamed the whole time.  She had to lay on a bed with the big xray on her, it was very scary for her.  When they were pushing on the syringe of barium it detached and squirted all over me and some on mom!  Gross! 

Whitney is still doing the same old thing.  Not eating and vomiting once (or twice) a day.  I thought that if I do the same feeding schedule for a while she would get use to it and be tolerate it.  But no.  Then  I tried a new one and she still threw up!  I even tried to give her less volume and she STILL throws up!  Maybe I should start a separate blog about her feeding issues.  I know I've read a ton of blogs specifically about stuff like that and tube ween's.   


Whitney & Carsten

Lately she likes to crawl or walk around with things in her mouth.  One time she had a rummy tile (not a good idea) and had it in to far so we quickly got is out she starts bawling.  I hate making her oral aversions worse!

Won't let me brush her teeth!

But they sure are sweet when they sleep!


1 comment:

  1. I hope things start going better with her feedings. It really is so hard when you're baby can't eat normally. She's such a beautiful little girl. Thanks for posting, I love hearing how she is doing.