Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)

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Friday, August 20, 2010

Best Feeding Ever!

This is Thomas still writing. Over the past few days we've been working with Whitney on a few things. First and foremost is training her to feed. As mentioned previously they've been trying to bottle feed her, and she is slowly getting better at it. Sometimes she drinks the formula, and sometimes she doesn't, sometimes she digests its well, and other times she pukes it right up. We just need to be patient with her. I have to brag that the first time I got to do the bottle feeding, Whitney consumed the most milk orally than she ever had before! She drank 43 mL of formula and didn't throw it up! I tried burping her but she either didn't want to burp, or just didn't really have any air in her to burp up, but that was a neat experience too.

video

Whitney is also seeing an Occupational Therapist and a Physical Therapist to help her out with movement. Both of her thumbs are almost perpetually clenched tight to the palms of her hands, and so they are alternating putting a splint on each hand between her thumb and pointer finger to try and relax her thumb so it isn't always so tight.

Everyday we can tell that Whitney is getting more and more ready for that day when she can finally come home! The only thing right now that is keeping Whitney in the NICU is her feeding. Once she learns how to completely feed orally, they will have no other reason to keep her in the hospital. She is still using a high flow nasal cannula, but they will be taking her off that very soon, to use what I presume is just a regular nasal canula. Whitney is either on zero oxygen support, or very low oxygen support. The nurses say that she needs so little help on her breathing now that they don't really need her in the hospital for breathing anymore, its just the feeding they are focused on now.

Our hunt for a Pediatrician has begun. The doctors advised us to look around for a good Pediatrician that perhaps has experience with working with kids who have had CDH. The hospital recommended a few doctors near where we live, and we called some up, but none of them allowed us to even talk with the doctors! The receptionist people were like, "You can meet the doctor on the baby's first appointment." The only problem with this is that we don't even know if we like the doctor enough to want to bring our daughter there to begin with. Other Pediatrician offices had an automated menu with a huge web of selections we had to choose from. Alicia tells me for one office she had to choose from 11 different menu options before she actually was able to talk to a real person! So finding a Pediatrician is actually turning out to be more frustrating than we originally thought. We've gotten some good referals from friends and we called up a place called Northwest Clinic for Children which was a close by place that was referred to us. We called and immediately were able to talk to a real person who sounded very caring, we were able to set up a time when we could see one of the doctors, scheduled a tour of their facility, they asked about Whitney's condition and seemed overall very helpful. It was actually a very easy and reassuring phone call. So we're looking forward to checking out this Pediatrician office to see if its right for Whitney and us.

Enjoy these photos!



Whitney got a new Beanie Baby friend named "Hope"





The bottle used to be pretty full.





Daddy feeding Whitney.





We turned the overhead lights on when we need Whitney to be awake, especially for feeding. Whitney's eyes open up wide when she gets used to the light being on.





Family Photo!





Alicia holding Whitney





How can you say no to a cute face like this?





Daddy and Whitney singing together!

3 comments:

  1. Glad to hear such positive news! She is a strong little girl!

    Sorry to hear that you are having pediatrician frustrations already. Any office worth their weight should be more than willing to let you meet with / interview their practice and physician. Good luck!

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

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  2. I take my kids to Cactus Children's Clinic. I like it there! It's nothing too fancy, but they do have a section for sick kids that is seperate from the room for healthy kids to wait. I see Dr. West and I really like him a lot, but I have no idea if he has experience with Whitney's condition. I should have asked him yesterday when I went, but I didn't even think of that till now! Anyway, I don't know if you've tried them yet... they aren't very far from where your parents live though! Oh, and she's so adorable! I can't believe how cute she is and how much she's improving! I love that most of the tubes are gone now too and you can tell how much better she is!

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  3. The northwest clinic for children on 31st and greenway? That's where my boys go and they are awesome! We like Dr Kennedy, she is great. Good luck and we are so happy for you and adorable Whitney!
    Jessica and josh Darnell and boys

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