Tuesday, August 18, 2009

Diagnosis

Kara Faith, 15 weeks, 5 days

Last Wednesday, August 12th, 2009, our baby girl was diagnosed with Holoprosencephaly (HPE). We saw Dr. Richards at Shands at UF. We weren't given too much information at the time of our appointment. Dr. R drew a picture and wrote the name of it down on a piece of paper. He told us our baby would not live very long once she is born. At almost 16 weeks, her other systems looked normal on the scan, which was good. He didn't detect a cleft lip/palate on the ultrasound. He said that my pregnancy should go to term. A possible problem could be overabundance of amniotic fluid due to the baby having trouble swallowing (polyhydramnios). We ask for specific prayer that this would not happen. We will go back to Shands for another ultrasound with Dr. Richards at 22 weeks. There is so much to tell, but the past few days have been trying. We are praying for a miracle from Jesus for our daughter. If that is not His will, then we are praying that He would transform us through this situation and use our baby girl as a testimony and instrument of His grace.



I had an appointment with my favorite OB yesterday. It was not encouraging, but the ladies that I have met on the holoprosencephaly support group I joined are very supportive. Meanwhile, I'm trusting in God and am thankful for ALL the prayers we are receiving. We really feel them!



Kara Faith comes from: Kara which means "Pure" and Faith which was given to me after some prayer. God gave me the word Faith and a scripture to go along with it a couple of weeks (8/1/2009) before we knew what we were having or that we would be on this journey of faith. Hebrews 11:1 "Now faith is the assurance of things hoped for, the conviction of things not seen." I wrote this note, "For we do not always know where we are going, but we can trust in Him who does." Wow, God is so faithful to meet us at our need!



So, I believe that the gift of Kara Faith is going to take us on a journey of pure faith. I am thankful for a special name for my sweet little girl.



"Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows." James 1:17



I will be updating about Kara as I am up to it on her blog Sweet Kara Faith.




2 comments:

Putting the FUN in DysFUNctional said...

I'm so sorry that your family is dealing with this. I live in just outside of Gainesville and I work at Shands...if there is any way that I can help you, please tell me.
Also, I read a blog by a mother whose son was born with a condition that I think is similiar to your daughter's condition. Here's the link if you would like to read his story. http://mylesstraveledroad.blogspot.com/
Sending love & prayers.

Gae said...

How hard for you
I will add mt prayers
God Bless