Medical Update and More

 So I guess this is where they the "honeymoon is over".....Our real life with Huahua really begins. Life with a medically fragile child become reality.  Part of me felt tried to rationalize if you stay away from the doctors long enough maybe she'll never be sick.....right?  And another part of me was waiting for Huahua to adjust and feel safe with us before enduring medical testing.   Instead we jumped right in all at once and got a lot of answers.   Granted she is very bonded and I would say felt very protected during these procedures, but it was a lot for a little girl to process.   Praise God for the bonding we have already secured!  What I have learned during these rough patches is that it's hard to ask for help.  I don't like to ask for help anytime, it's like admitting defeat.  There is this odd feeling when you adopt a child with severe special needs, that you get what you have coming and it becomes even harder to ask for help.  A good friend reminded me this weekend (and with a meal) that the Christian church not only reaps the joy of this adoption but also bares the burden of the struggles we face.   This is so true and I was thankful for her words of encouragement. I was reminded of when I grow closest to the Lord is when I am the weakest.  If we are not weak and vulnerable, there is no need for a savior.  When I am humbled on my knees there is only one way to look up to the heavens for His grace and mercy.  So the bottom line--- asking for help is not defeat, it's recognizing you're human, with limits to what you can do, and that we need to rely on our community and most importantly our Savior to walk us through the valleys.

I realized the last update did not give you much for her medical status.  I think I needed time to process and digest before I reiterated it to family and friends.  Most stunning for me was her oxygen levels which we had thought were running around 94% was not accurate the week before or things just dropped.  Most likely just not an accurate reading.  Needless to say I thought she was doing a lot better heart wise due to her spunky personality.  During her hospital stay she ran around 82 for oxygen level and then at her follow up this past Wednesday she was at 78% saturation.  Normal people run at 99-100%.  The cardio doc wants no lower than 75%.  While getting my oil changed earlier that day, a friendly woman commented how lovely Huahua's purple fingernail polish was.  Yikes!  I guess we'll save on nailpolish, but seriously that struck a ouch in my Mommy heart.  I smiled and said "Thank you", so glad Huahua probably didn't understand her.

In the hospital, Ultrasound confirmed no spleen, as we suspected, so she started preventative antibiotics.  Her liver is across her entire stomach instead of on one side.  And tomorrow we go for a GI ultrasound to assess her small intestines.  Just learned while at hospital, it's fairly common in Heterotaxy Syndrome for the small intestines to have rotation abnormalities.  Praying this will not be added to her list.    I am learning more about the complexity of her conditions and apparently the Heterotaxy is the grand accompliance in which causes the multiple things to array.  Would you believe this rare condition is only found in 4 out of 1,000,000 children?  Can you believe we were blessed with her?  She truly is a gem in the rough  :)

The most humbling thing we learned while at the hospital in that her pulmonary artery (the one that carries the oxygenated blood back to the body) is no longer working.  The doctors had expected to hear at least a murmur, but nothing.  So this means a few things.....
        1..  As I learn more about how her heart was set up, even as deformed as it was/is --God made it that way to sustain her till her time of surgery.  He knew before all of us when that would be.  Some of her narrowed arteries saved her life because they prevented too much blood from flooding into the lungs where her values would not have kept up with the pressure.  It's just amazing that her heart was so defective, but yet so perfectly formed by her maker.  Today I spoke with a cardiothorasic surgeon about her case over the phone.  He said God has a plan for her life and I would agree.
        2.  When the doctor in the hospital told me the pulmonary artery was closed, I was struck that sometime in the last year our baby would have surely died had someone not intervened with the funds for her surgery.  Her little heart would have said no more.  It was so humbling for me to recognize the means we live with today.  The resources we have are incredible and we should remember to be thankful everyday. There are mothers and fathers that choose to place their children at the doorstep of a public building or hospital in hopes their little ones life will be saved, simply because that can't afford medical care.  These are sacrifices we have never faced but mirror our father in heaven, a sacrificial love for us.
       3.  The bidirectional glenn shunt that was performed in the hospital in China was done very well and her heart is functioning well, except for the aorta value, which controls the flow of the blood back to the body.  Will continue to monitor.
      4.  Her hemoglobin is too high.  I am learning, but from what I understand this is when the body thinks it's not getting enough oxygen.  They will monitor this too.

So we continue with a more testing and imaging to get ultimately the best pictures and idea when to perform the Fontan surgery.  Timing will depend on her oxygen saturations and hemoglobin levels.

This was from the hospital stay.  Thought it was so cute she was hanging out of the bed.  Reminds me of Jackson who would lay sideways in his bed at the hospital and the nurses would try to move him and he would scream!  This one has the same spunky personality.  Jackson and Huahua have become really close.  Love to snuggle....there must be some understanding between them we just can't recreate.  

Maybe we should not dress in purple???  Notice her little nails and lips.

Huahua and Dr. S. 

This is from two weeks ago.  Finally a family picture!  Taken at Justin's BB tournament.

The girls love to play dress up.

Someone learned how to use the scissors today!  Notice Bubba in the background, never to far away.  A few days ago I was reading a book to the girls before bed.  We all sit on the floor and Jordan sits in between my legs and then Huahua between her's and then Bubba tries to squeeze in there too.  So he was between Huahua's legs and she started squeezing his ears too rough.  I warned her to be gentle and when poor dog winced in pain I removed her from the book train and stood her off to the side and told her not to hurt Bubba.  She gave me to biggest glare out of the side of her face, like I can't believe you did that Mommy.  Typical two year testing me.
Her English comprehension is incredible and she will repeat almost anything spoken.  Today her favorite words were "excuse me".    She continued to fake cough and walk past to say "excuse me"