Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)

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Saturday, July 17, 2010

Not Yet!

No, she's not here yet. But I just wanted to write, even though I should go to sleep being 4 in the morning. I woke up today at 4PM. I think she'll come soon (obviously) because I'm 'nesting' and now I feel her on my hips! I hope she come naturally this weekend. If not they will probably induce me on Monday the 19th. So mark your calendars Family! And get ready for THE phone call.

We haven't picked a middle name yet but we did get some suggestions from Thomas's Dad that we might go with or it inspired us to make one up.

Just to make sure everyone is one the same page here. Our daughter, first child, Whitney, has severe Right-sided Congenital Diaphragmatic Hernia. Basically where her (every case is different) intestines & liver are in her chest instead of her stomach area, compressing her lungs due to a hole in her diaphragm. She will need surgery, after she is stable, to push the intestines back down, and her liver, which is very difficult because there's not much space and that's where it grew. She will need to be on some kind of life supporting Oxygen for a long time because HER lungs cannot support her in this world.

Apparently CDH is one of the most common birth defects in the United States. When bringing home a baby with CDH, they have many special needs. They could require oxygen at home, requires tube feeding, and need lots of different medications, physical and/or occupational therapy. Hearing Loss is very common, also breathing issues, feeding problems, delayed growth, and low muscle tone. This is all stuff that I have read on various websites, and not really told by my DR. Most of these are not permanate and they grow! I am very determined to bring home my baby.

I am so grateful for all the support we've gotten, even from people I've never meet! It helps a lot, seeing others (very unfortunately) go through this. I've even gotten flowers from a good friend far away!

1 comment:

  1. Oh Alicia and Thomas, I am SO sorry to hear about Whitney's condition; please know that you are in our family's thoughts and prayers!!! And please my dear cousins, do not hesitate to call on us for help...that's what family is for!!! HUGS!!! Any day now she will be here!!!! :)