Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)

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Lilypie Second Birthday tickers

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Lilypie Pregnancy tickers

Saturday, September 8, 2012

Counting my Whitney blessings

I'm feeling depressed right now because I can't figure out why Whitney won't stop throwing up.  It also makes me feel mad, sad, and helpless. (I seem to feel this way at least once a month or more.) Why is it getting worse?  Why don't the doctors know.  I feel like I've asked this question her whole life.  I feel like I've done so much research that there's nothing left to find out.  I feel like she has had sooo many different tests and procedures and surgeries to help her to stop vomiting but nothing works. I've asked about all sorts of medications and homeopathic remedies. But as always, I'm going to do my best to help my daughter.  I'm going count my blessing.  I'm going to think about this in a humble and prayer manner.  Although I also feel like I've prayed about Whitney's eating struggles specifically her entire life with no answer, no solution.  I've had several promptings and insights that work for a little while but nothing has permanently helped my daughter to stop vomiting. Whitney gets feed formula, slowly, for 20 hours a day.  So it's usually not a huge amount of vomit.  It doesn't even seem to bother her.  I will hear her coughing then gagging, then I grab a cup and run to her or I run her to the sink. 
 Home life is very difficult. 
 Whitney throws up every single morning.  She's throwing up three times a day now.
 Usually (not always) she throws up:  when playing on our bed.  when jumping on the couch.  after a bath.  during swimming if water gets in her mouth.  when she is sad, scared or anxious.  when she is hurt. when she doesn't get her way.  when she is just standing there doing nothing at all! when she is in her high chair with food.  if I try to "bolus" feed her. 

So tonight I'm looking back on my miracle (which I do often)  baby and will tackle this question tomorrow when I can think straight.





Birthday

ECMO surgery

Opened her eyes

survived ECMO

CDH repair surgery

Broviac line surgery

I will survive! 15 days old, first time being held








Extubated at 3 weeks old
breathing on her own!

growing strong everyday


Going home!

first day at home. first day she smiled.




































Posting most of her hospital stays and some doctor appointments makes me feel so grateful that my daughter is alive and thriving.  She may have lots of health issues but she is doing so well.  We always appreciate your prayers.  I love her so very much. 

2 comments:

  1. Oh my goodness do I feel your pain!

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  2. You have such a beautiful daughter! I am amazed at how strong you and your family are! Good luck, Alicia. I can't imagine your struggles, but I will certainly send my prayers your way!

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