Now I'm 17 weeks, 3 days and counting...
So far I have been just living with Kara's diagnosis and letting it be part of me. Sleep is not as elusive the past few nights. We have had some trouble with some family having very different opinions about our choice to let God decide our baby girl's days. Unfortunately, some have removed themselves from our lives. We are praying that God would change their hearts and that we would be a testimony of His grace to them. For the most part, our family, our friends, and our church has been a wonderful support. I think the reason I am feeling such peace is the covering of prayer we are receiving by so many. Thank you!
We saw my personal OB, Dr. M, last week. We still have lots of questions. Again he was not the most encouraging. HPE babies are so rare that he has not delivered one. We were told that the level II special care nursery at my favorite hospital would be adequate for her, but we are still praying about that. (I am really not sure. I would prefer my care be at that hospital, but her care may be best done at a hospital with a level III NICU.)
What we know about our baby girl:
**she has Alobar Holoprosencephaly (HPE)
**at 15.5 weeks, all of her other systems looked normal
**she did not appear to have a cleft lip or palate (which is common in HPE)
**she has two small eyes and we're not sure about her nose yet
**I can feel her moving every day
**she is fearfully and wonderfully made by our Lord
What we don't know:
**Which hospital is best for Kara and me (I am having some anxiety about this.)
**What her respiratory status will be once she is born
**How long we will get to enjoy her sweet spirit (I'm hoping for weeks or more...)
**What conditions she will have that go along with HPE
I am hoping and praying for: a doppler to listen to her heartbeat at home and record it (this is in the works), a 3D/4D ultrasound to have as a keepsake of her time inside me, and for God to work a miracle in her. I go see Dr. M on 9/10 and I have another big ultrasound with the specialist on 9/23. Keep praying!
I am reading and savoring James 5: 7-20. May God bless you this week!
"fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand." Isaiah 41:10
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7 weeks old forever... 01.08.10~02.26.10
Click to Help Other Families with HPE
"My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be." Psalm 139: 15-16
Our Little Peanut
7 weeks old forever... 01.08.10~02.26.10
About Me
Kara Faith's Diagnosis
Kara Faith was diagnosed in utero at 15 weeks with Alobar Holoprosencephaly (HPE). This is a malformation of the brain. Hers is the most severe type. We serve a BIG God and are thankful for the gift of her life. We are trusting Him as we walk through this pregnancy. To read Kara's story from the beginning, please go all the way back to where Kara's story begins. Thank you for your prayers!
Links of HoPE
Kara's Foundation for HoPE, Inc.
Click to Help Other Families with HPE
Follow My Blog
Kara Faith's Songs
7 comments:
I was just thinking the other night... isn't it interesting that it is those who like to be called "pro-choice" are the ones who get upset when we CHOOSE something other than what they would?
Nancy, you said this is in the works, but I wanted to let you know I rented a doppler from babybeat.com for a couple of my pregnancies. I was very happy with their basic model. Praying for you!
Jamie Sibley
Wife to Tom
MOMYS to 7
Nancy,
I am moved by your faith and pray you continue to hold fast to Him. I''m currently doing Beth Moore's bible study of Esther and tonight's lesson is ""It's tough being a woman in the tight fist of fear". I left my pregnancy in his hands upon our DX and felf such a great peace that it would work out. That peace never left me in the 4 1/2 years we had Cayden with us on this earth. As we look to celebrate his 6th birthday by sending up his balloons to heaven, i hang on to Beth Moore's other lesson... if my worst fear came true, then what? then, my God WILL take care of me. He takes care of me, and you and our babies and they fit into his master plan. Perhaps not our plan, but HIS plan for us and our lives. Beth said the most common command in the bible is "DO NOT BE AFRAID" so my prayer for you is that you release the fear of the unknown, embrace His plan, and rest in the peace that passes understanding. Hugs, Shira
Shira,
Very good words! (Made me cry at the truth you bring to me this day.) Thank you! I love Beth Moore--I finished Believing God this spring. Didn't know how much I would need it...
Nancy,
I found your blog through Judy at BenMakesTen. All I can do is offer you prayer. I admire your great faith and courage despite family members being difficult.
May our lady wrap you and your family in her mantle of loving protection.
God Bless!
I also found your blog through Judy at BenMakesTen. You will be in my prayers but remember that if God has chosen you to be the mother of little Kara He has his reasons. Don't worry. Just let yourself be guided by Him.
My youngest daughter has autism and there are no words to describe the blessings she has brought to the family.
God bless you.
Nancy,
When it comes to choosing a hospital, I would go with your gut instinct. If it is telling you to go to the hospital with the NICU, then that is where you should go! We chose to deliver at a bigger hospital that was almost two hours away from our home, but it was well worth the drive. Abby still receives her care from this same hospital. Our local hospital is nice, but just doesn't have the specialized care that Abby requires.
I am sorry to hear that a few in your life have chosen to remove themselves, because of your decision. It is their loss, and hopefully in time, they will come around. We haven't had anyone remove themselves from our lives, but we have encountered this same issue. I wrote an entry about it on my blog called, "The Right Decision." It is in my July archives, if you would like to read it. Hang in there and stay strong!
Carly
http://carlyandjay.wordpress.com/
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