Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)

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Wednesday, January 5, 2011

Plans about gaining more weight

The other day we went to the G I, dr. M, to evaluate Whitney's feedings and growth. She weighed in at 12lbs 1oz. I was hoping it was more like 12lbs and 4 or 5 oz because she is suppose to gain an ounce a day and it's been five days since she's been weighed last. She didn't throw up or any thing so I'm not sure why she didn't gain much weight. DR. M said it's because of her CDH and having reflux. So his plan is to keep doing (put her back on) the prevacid and the bethanechol meds. Put her on a new formula called Similac Alimentum, it's hypoallergenic and pre digested. And of course it has to cost double the amount of regular formula! Also he wants to increase the amount of food per a day and stay on the continuous drip. He ordered another Modified Barium Swallow xray and wants her weighed once a week and re evaluate things and to be seen again in a month. They might need to increase the calories, too. If Whitney doesn't gain enough weight by then (a month) then he's talking about doing something called an endoscopey (stick a camera down her mouth) to see the esphogus and make sure it's working and if anything else is visibly wrong. Darn! I pray she will eat better and gain weight! And if something is wrong then she may need surgery to repair it. Sad day.

Sitting up by her self, hanging on to her play mat!

Right before she lost her balance and fell over.

Would you look at that hair! It's so long and goregous!

Grandma loves me! It's from Grandma P. but I know all 3 love her!

Trying to pull of her socks! She does that a lot!

Found her favorite toy!

All I need are hugs, kisses, and Grandma. So true!

Fun stuff!
If you didn't noticed, the NG tube use to be in her right nostril and now it is in her left one! I had to pull it out on Sunday the 2nd morning before church. I was re-taping her face and it came out a little so I pushed it back in and when I checked for placement I didn't get any stomach juice in the syringe. Darn! So I gave her a little break and put it back in Sunday night with the help of my mom and hubby holding her. She didn't take much by the bottle when it was out so she's not ready to be with out it yet but I' m really hoping only a couple more months. Slowly but surely.

Thomas made me a quesadilla with pork, olives, peperoni, and cheese! YUM!

One day she will be free of the oxygen and NG tube. Here's a sneak peek of what Whitney really looks like! But for now she needs them to be healthy and I'm perfectly okay with it! Every day I think about what a miracle she is and how lucky I am to have her.

Thank you to every one who has supported us and prayed for us. One lady said that I was amazing too! THanks!


  1. You don't know me but I stumbled across your blog tonight. Your story is very humbling and encouraging. I have twin daughters that were born the day before your daughter and they both have medical problems on a lesser scale. I find out on Friday if my daughter will need an NG tube and seeing your daughter gave me some comfort. Thank you for sharing this.

  2. I just want you to know what an AWESOME Mom you are a what a special little girl you have. I have really enjoyed reading your blog and finding out the progress of little Whitney. I think of you all often and pray for you as well. Some day when she is grown, you'll look back and think WoW we really went threw all that. She's is such a blessing an, an inspiration to so many. I want to wish you the best of luck and I will keep reading and enjoying your updates!
    Catherine Everett, Mom to three busy boys Highland, UT :)

  3. I can hardly wait to hold my precious little granddaughter again. Unfortunately, I am in the throes of a cold right now, and it's still getting worse. I'm going to stay away from the nursery this Sunday, too. Please give Whitney my love and kisses for me. I see her face on my wallpaper and screen saver every day and she never fails to bring a great big smile to my face!
    You're always and ever in our prayers, too, Whitney! Grow, baby girl, grow! :)

  4. She is so stinking cute!!! She is an amazing child!