Thursday, January 10, 2013

Evelyn's Medical Update

It has been a roller coaster of emotions this past week, from first finding out something was wrong with our baby girl to the unfolding story of what is going on with her.



It is frustrating to a point because we really don't know that much.  There are a lot of unknowns still and they still don't know for sure what has caused the Hydrops or how exactly they need to treat it.  I'm sure there is also an added barrier with language too.  Although we have been very thankful that the doctors here all speak English very well, it still is not their first language and the topics we are talking about are highly specialized so it makes communication and understanding more difficult. 

Mama meeting Evelyn for the first time
This is what we know:

- At our 35 week ultrasound Baby Evelyn was diagnosed with a rare condition called Hydrops.  She had fluid surrounding her lungs and heart, excess amniotic fluid and her body was beginning to swell.

- Her previous ultrasounds were all "normal" and showed no signs of Hydrops so it appears to be a late onset, which bodes in her favor.

- She has really cute little hands and feet and lots of dark hair



- She was born at 35 weeks, which is later than most Hydrops babies and this also is a really positive thing.

- She is responding well to everything they have done to her and remains in "stable" condition.  She can not breath on her own (her lungs are very immature) so she is on a breathing machine.  She is also constantly having fluid drain out of her lungs.  She has lost about 1.5lbs already as the fluid has drained and the swelling is going down.  This is really good news - just about the only time you would want your infant to LOSE weight.

- She started urinating on her own yesterday - this was really good news as it shows her body is starting to function on it's own.  She has a cathetar and her body is making a good level of output, which makes the doctors happy (and us of course!).

- They have been able to reduce her oxygen levels slightly because she is trying to take breaths on her own. 

- Because of her poor oxygenation and because her lungs are not functioning on their own, it has caused her to have Persistent Pulminary Hypertension which could turn serious so they are monitoring this heavily.

- She is not able to eat and won't for a while...They have her on IV nutrition for now.

- One negative thing is they were really hoping once the fluid was drained, it would be gone but today they are seeing that more fluid is being replaced in the lungs as they are draining which is not the best case scenario.  They will continue trying to figure out "why."  It's hard to see our sweet baby girl with holes in her chest, draining dark fluid. 


- Her heart continues to beat strongly, which is another good sign.  We love watching her little chest move up and down as she lays in her special bed. We love the times we get to spend with her, praying over her, singing to her and telling her all about our God, our family and our friends.

3 of the 4 of us!

2 comments:

  1. What an AWESOMELY BEAUTIFUL little girl you have! Rest assured, my heart, my thoughts & prayers continue to be with her constantly. I know God's loving hands are in this all. I wish I could do more than just sit over here & pray but like I said, I am praying. Praying you will all continue to lean on Jesus for strength, peace and the love and hugs of Jesus be felt by each of you. I love you! A. norma

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  2. You are such a beautiful family. Hawa, I really liked the pic ofbyourbfirst meeting with Evelyn. What a precious little girl. She, without being conscious of it, has been blessed with a great Mom, Dad & big brother. She has been blessed with good medical attention. I will pray that you will be together soon. Dad

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