About 5 last evening Dr. Wilson, the NICU Dr. that's taking care of Kysa came down & told us some very devastating news. Kysa has congestive heart failure. The bottom chamber of her heart is grown together & by a physical examination she has signs that point to a chromosomal disorder called Trisomy 18. Although they haven't diagnosed her for sure with Trisomy 18 they have collected blood & will be sending it to a genetics lab today (Monday) with the results to return within 48 hours. We won't know the results of the blood test until Wednesday evening.
At this point even if she doesn't have Trisomy 18, the heart condition that she does have would be a very risky procedure for any surgeon to fix, due to the fact that she is so premature & the fact that her lungs are very under-developed. Currently she is on a ventilator to help her breathe, because they couldn't get enough oxygen to her with just the nasal cavity.
Mark & I were able to hold her last evening for the first time & Fr. Hemann came & baptized her.
Please pray for us that we may continue to have strength in the coming days.
If you'd like to read about the possible chromosome disorder here is the link.
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002626/
Amy i am so sorry to hear this!! Praying for strength, comfort and understamding during this difficult time. Our God is bigger and He will be by your side indefinitely. Hugs to you and your sweet girl.praying for the best possible news.
ReplyDeleteSending hugs and prayers. I'm familiar with Trisomy 18. She's your special little angel to love and treasure. May God sustain you all.
ReplyDeleteAmy, you and your family are in my thoughts and prayers during this difficult time.
ReplyDeleteMark and Amy our hearts break for you. May God bless you with courage and strength during this difficult time! Cherish, hug and snuggle that sweet baby girl as much as possible. Our thoughts and prayers are with you.
ReplyDeleteMark and Amy... no words can express the way my heart feels right now for you both and your families. I was happy they let us come see you and Mark and precious Kysa yesterday. She is so beautiful...just know she isn't alone. God is with her and will continue to be with her every moment. She feels your touch and hears your voices so love her and savor each moment she is trying to get stronger. Dont give up your faith~ God is good... some things are just hard to understand.
ReplyDeleteMark, Amy, and Owen - many, many prayers being said for all of you. Kysa is beautiful!
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