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Another Hurdle

Today was an ok day.  We thought we would be moving to the floor today, but Lia had other plans.  We found out today that her diaphragm on her left side is not moving resulting in some issues with her left lung.  We have a flouroscopy tomorrow morning to determine it the diaphragm is truly paralyzed, or if it is working paradoxically (sp?) with her other diaphragm.  That means they are working opposite each other.  If it turns out that they are working opposite each other, she would most likely need surgery to tack down the diaphragm so her lung could have more room.  Paralyzed diaphragms are some-what common after open heart surgery, and she could go on living a normal life with it paralyzed.  So, we're still in ICU for now, waiting to hear more news in the morning.  Her surgeon said that he was very surprised to hear about this and that he was no where near the nerve that would cause this to happen during her surgeries....not what a mom wants to hear.  Although, I wouldn't want to hear him say "yes, I caused this to happen" either...it's a lose/lose for me I guess.

In other news, we did see a little improvement in her feeds today.  She took 16 MLs all by herself. The rest goes into her feeding tube. OT comes and watches our feeds with her to coach us through it and provide advice.  We have to hold her upright in order to get her to take her bottle, which she still hates the taste of (she can only have enfaport now due to chylothorax diagnosis yesterday).  She is going to have to start liking it one of these days.  Looks like we're going to have a picky eater on our hands. 

I'm attaching a few photos from our day today.  Thanks for checking in on us!  Also, thank you for the care packages, cards, texts, emails, phone calls, comments on here or Facebook, and most importantly, your prayers! Someday we will look back on all this, and say "remember everything we went through when Lia was born?"

Look who got her hair washed today!  And with actual baby shampoo! 

Daddy trying out our new feeding position

Mommy and her favorite little girl!

Comments

Ashley Quarles said…
She is so beautiful!!!! Love the pics! You guys will continue to be in my prayers!
April 25, 2012 at 10:23 AM
Pam the Realtor said…
Seems with all illness it's two steps forward and one step back. But Lia has made so much progress! Focus on the positive and this stuff will get figured out too. Hang in there!
April 25, 2012 at 10:33 AM
Deb Wagler said…
Hope everything is going well, praying and our thoughts are with you everyday!
April 26, 2012 at 1:55 PM
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