Monday, August 24, 2009

Sinking In

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

Wednesday, August 19, 2009

Hurting and Hope

Sleep is elusive. Between our puking Jack Russell and cute Eden in our bed, I am awake in the wee hours. Since Kara's diagnosis I awake at odd hours and my thoughts click on and I can't seem to turn them off. We are hurting. Hurting and wishing for things that may never be. Hurting for there have been things done and said. Sometimes I don't even know what to do with myself. I have taken it to the Lord in prayer and await His response to my grief, my sorrow, my pain. And I believe He answered with this: "but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint." Isaiah 40:31

"Sweet little babies,
it’s hard to understand it ‘cause we’re hurting
We are hurting
But there is healing
And we know we’re stronger people through the growing
And in knowing-
That all things work together for our good
And God works His purposes just like He said He would…
Just like He said He would…" (Glory Baby by Watermark)

Monday, August 17, 2009

Her Name

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


Here she is on ultrasound at this appointment. This is her humerus (upper arm).

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 have an appointment with my favorite OB this morning. I look forward to it and will try to offer more information. Meanwhile, I'm trusting in God and am thankful for ALL the prayers we are receiving. We really feel them.

What is HPE?

Sunday, August 16, 2009

Psalm 139

These verses mean a lot to me. It tells of how much God loves us and knows us, even from before we were yet to be...

1 O LORD, you have searched me and you know me.
2 You know when I sit and when I rise; you perceive my thoughts from afar.
3 You discern my going out and my lying down; you are familiar with all my ways.
4 Before a word is on my tongue you know it completely, O LORD.
5 You hem me in—behind and before; you have laid your hand upon me.
6 Such knowledge is too wonderful for me, too lofty for me to attain.
7 Where can I go from your Spirit? Where can I flee from your presence?
8 If I go up to the heavens, you are there; if I make my bed in the depths, you are there.
9 If I rise on the wings of the dawn, if I settle on the far side of the sea,
10 even there your hand will guide me, your right hand will hold me fast.
11 If I say, "Surely the darkness will hide me and the light become night around me,"
12 even the darkness will not be dark to you; the night will shine like the day,
for darkness is as light to you.
13 For you created my inmost being; you knit me together in my mother's womb.
14 I praise you because I am fearfully and wonderfully made; your works are wonderful,
I know that full well.
15 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,
16 your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.
17 How precious to me are your thoughts, O God! How vast is the sum of them!
18 Were I to count them, they would outnumber the grains of sand. When I awake,
I am still with you...

August 11th, 2009--Changed Forever

I am now 15 weeks, 5 days pregnant with baby number eight. I went in to see my OB and he did an ultrasound in which we found a problem with our sweet baby. She, yes she, has a partially developed brain. The outlook is not good. I know I serve a BIG GOD and He is going to walk me, Stuart, and our family through this. I am praying for a miracle, but barring that I am praying for His strength to guide me as I go day by day. We have an in-depth ultrasound at Shands at UF tomorrow afternoon and will be talking with a specialist. Please pray for our sweet baby girl and our family.

"I can do all things through Christ who strengthens me." Phil. 4:13 When Doctor M said there was a problem with our baby this verse was the first thing that came to mind. I repeated it three times. God was good to speak to me in my time of need.

First Ultrasound

This ultrasound is from my 1st visit. Here we see our little baby for the first time.