Wednesday, November 14, 2012

The Face of HIE


What a frightening diagnosis.

What a beautiful face!

Khloie's medical diagnoses include HIE ~ hypoxic-ischemic encephalopathy ~  (reduced cerebral blood flow or perinatal asphyxia), so we’ll be on the fast track once Khloie comes home.  She will need to see a team of specialists regarding her brain, heart and vision.

From my limited understanding, basically her brain was starved of oxygen and blood in utero.
  
The morbidity and mortality rate is high for infants with HIE, but 10% are healthy with very little central nervous system deficit.  

One possible complication is pupil/eye involvement, and it appears Khloie has strabismus.

Another possible complication is heart involvement.  Khloie is diagnosed with CHD (presumably congenital heart defect)  and ASD ~ atrial septal defect.

ASD  is a birth defect of the heart in which there is a hole in the wall (septum) that divides the upper chambers of the heart (atria).  There may be reduced myocardial contractility, severe hypotension, passive cardiac dilatation, and tricuspid regurgitation.

It appears Khloie has a shunt and her heart is functioning normally.

So much uncertainty.

Yet so very sure!

We fell in love with Baby Girl the moment we saw her picture.

We ordered further tests.

We received documentation.

But we had already decided…

It didn’t matter what the tests showed.

She is our daughter.

We are not educated on medical needs of the heart or brain.
But we know the experts, and our daughter will receive the very best care.

We don’t have the funds required to bring her home.
But we know the Provider, and He owns the cattle on a thousand hills!

Will you please join us in prayer?

We are praying that China will grant our LOA quickly so Khloie can get the medical care she needs.

And we are thanking the Lord in advance that He will supply ALL the funds necessary to get her home quickly!


I will not leave you as orphans; I will come to you.  
John 14:18



10 comments:

lizzielou said...

Praying for your beautiful baby girl sweet friend. xoxxo

Dardi said...

There were so many unknowns with Kemeri before she came home. I did a post shortly after she entered our family about her most prevalent diagnosis: Daughter. I am not minimizing her needs, but they don't define her, nor will they define your sweet girl.

thesleepyknitter said...

Praying for swift LOA and God's full funding!

CarrieT said...

Will be praying for you and the family and especially Khloie, Connie. I like what Dardi says up above. As you know our daughter has good health but signicifant developmental disabilities, but Dardi is completely correct--her biggest need was for a family. And we needed a little girl to fill that place in our home!! May God lead you, give lots of wisdom to you and the doctors, and give miraculous healing to Khloie!

Carrie T. - mom to 4 from Korea

Ronnie said...

Connie,

Thank you for modeling discipleship as you are. I read your story on Adeye's blog. We adopted a 13.5 yo daughter from China almost 8 months ago. You perfectly describe our experience. We have been searching for answers. Tears of thankfulness stream down my cheeks as I praise Him for you.

Blessings,
Ronnie
www.provided4.blogspot.com

Cari said...

Khloie is just a darling. I read your story on Adeye's blog and sent the link to my husband to remind him that we are not alone. You have such a positive outlook that I hope someday I will have as well. I cherish your friendship, support and prayers!

Jami said...

Oh my goodness!!! She is DARLING!!!! Seriously...just as cute as a button!!!

bytheriver said...

Our NSN dd has had hypoxic-ischemic stroke and strabismus. After 7 years home, we just found this out as the cause for her difficulties. She is in 3rd grade and hanging in there workwise in public school. Looking forward to your travel.

bytheriver said...

Another note: We have found occupational therapy and vision therapy helpful in assisting our dd to get the best eyesight she can and to strengthen her arm.

connie said...

bytheriver, I was so hoping to hear from a parent walking this HIE journey! Can you please contact me so I can ask you a million questions?!? Thank you!
cjohnson@pldi.net

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