Wednesday, June 3, 2009

Thanks for the hope

Hey everyone. You may see some of the pics and a video I am trying to upload of Sara's hiccups and wonder- how can she look so good and be so bad? According to the neurologists, all that is good about her right now, vitals and reflexes, are functioning out of the brain stem - which is not damaged. As she progresses, the top of the brain will begin to develop and take over those primitive functions and suppress them. This is normal and should happen. But that is where the damage is and there is no way to predict how normal functioning will be impaired. As early as 33-34 weeks when suck, swallow, breathe coordination begins to show we may begin to see signs. Maybe earlier if the damage is more extensive.

In her favor, she is very young and her brain is very pliable and resilient. Other parts of the brain could take up those operations for the time. On the other hand, not only is the stroke, or as they call it - infraction, a problem but the blood is also in the tissue. The doctor is very confident the blood will drain, especially with the reservoir put in. But the blood in the brain tissue is like putting a drop of water on a sugar cube. There is damage left behind when the blood is absorbed. How much? We won't know until further MRI's and CAT scans are done in the next few days and weeks.

I'll be honest, the picture painted by the dr's and nurses is very very bleak. I know they have to speak from their training and experience. But as I posted earlier, God has the final word. And this is the tension we are living in right now. To have the medical tests and facts staring you in the face, while walking with and serving a God who does the impossible. Can God heal her? Yes. Will He? Only He knows. What best will give Him glory and make His name known among the nations - I wish I knew. As one pastor friend advised me today, when the storm is the darkest, step out of the storm look to God and ask - How does it look up there?

If the tears of a mother could heal a child, Sara would never be sick for the rest of her life. Pray for Jennifer (I and a few others call her Jenny). Pray for God to give her rest, peace, hope, and comfort. Pray for God to speak very clearly to her heart and reassure her of His love and plan for all of this. Pray for our two daughters. Pray for our doctors and nurses. I know it is their job, but they don't enjoy this either. We may have some hard decisions to make in the next few days and weeks, and all the options stink. Pray God would speak clearly to us so we know that our decisions are His will - that is all we want.

All of your comments, emails, phone calls, meals, cards, prayers, and support are what give us a hope only surpassed by our God of hope. There is not much hope floating around our child in the NICU. Thanks for caring, posting, and praying.


  1. Please take a few minutes to read my daughters story on our blog. She has serious damage to her brain from Meningitis. Difuse infarctions over the entire surface from bleeding and strokes. We were told that IF she survived, she likely would not see, hear, move or have awareness of anything at all. That was 14 months ago and we're witnessing a miracle every day when we look at her. She is 17 months old and doing so well.

    When she was in the ICU it was so difficult to be hopeful for a miracle. We were so scared to have hope and then be devastated again. I prayed and begging God to spare my little girl and he answered our prayers 10 fold.

    We happened to be at an appointment yesterday with her Developmental Pediatrician and he was amazed and humbled at her healing.

    All this to say...I am praying for a miracle for Sara. It IS possible and my little girl can show you that.

    How I wish I could do more for you.

  2. Thanks Kristine, I read your wonderful daughter's amazing journey. I'll pass it along to my wife. We are hanging on to these stories right now.

  3. Dear Jarrod and Jenny,
    I can't imagine what you are going through right now. I think that feeling hopeless is such a natural part of this process. I will pray especially hard today that you and Jenny will find peace today. That today something will happen that makes you smile. We'll worry about tomorrow, tomorrow.
    The best part is I know that God is snuggling Sara so close to Him right now. I can tell by the pictures that she is sleeping so soundly. Only the arms of God provide that kind of sleep :)
    We are strangers (linked here through Kelly's Korner) but I am with you for the long haul.
    God bless,
    Jamie Corona
    North Carolina

  4. Jarrod and Jennifer,

    My husband and I are still praying for you and your beautiful Sara Rose.

    You said, "If the tears of a mother could heal a child, Sara would never be sick again for the rest of her life." I want you to know that the same is true about the tears of a stranger -- who happens to be a mother. I have cried and prayed...and I will cry and pray some more.

    Hoping, praying, crying and believing with you...

    Chad and Leslie Moore, Gus, Kate and Claire (born at 29 weeks)
    Tyler, TX

  5. as the mom of 3 preemies - 2 who were micropreemies and did not survive - my heart aches with you. the NICU is a rollercoaster where things change from hour to hour...

    praying for your sara rose. that God would keep you both strong...

    hang in there.

  6. I wanted to give you some encouragement about little Sara's brain bleeds. My daughter was born at 34 weeks, a week stay in the NICU and they sent her home. Starting around 6 weeks of age we noticed her head was enlarging quite quickly but the doctors continued to dismiss our concerns until she was 4 months and they discovered bleeds all over her brain. The end result was the insertion of a permanent shunt and 3 surgeries but our little girl is thriving. She has some physical delays but nothing God cannot handle.

    In addition, I have a friend that his wife gave birth to twin boys around the same time as Sara Beth. One suffered bleeds similar to your description of Sara's, they told the family to prepare for the worst but he came home with his brother in time for Christmas. A permanent shunt was required and Im not sure about his development, but God is good and healed that little baby. God will see you and little Sara through.

    Praying in Jacksonville, FL

  7. I have cried and prayed, and am crying and praying some more. I am so blessed to read your words of trust and your acceptance of God's will and plan. We are praying for a miracle of healing and for the doctor's words to be wrong. Man's words are just words based on prior knowledge and facts, God's words are life and are based on His supernatural and miraculous power. He alone knows what His plan is for Sara Rose and whatever His plan it is "to prosper her and not to harm her, to give her a hope and a future" (paraphrased Jer 29:11) As a Speech-Language Pathologist who has worked with many a developmentally delayed or disabled child, it is amazing the way that God created our brains to be able to form new pathways and to take up new functions. I have seen many children so astound medical providers and this is my prayer for Sara Rose. Love and prayers from Texas, Catherine Russell Asher

  8. Prayers for all of you. Woke up this morning thinking about you guys. You are on our prayer list and your faith in God's sovereignty is inspirational to many. Thanks for sharing her journey with us! We are walking in prayer with you-
    Whitney Gates Cate

  9. I know too well how you feel... I will continue to pray. Dee

  10. God is glorifying Himself through this. We will continue to pray for you. We love y'all.
    Ryan, Dee Anne, and Jonathan

  11. My sister, a classmate of yours at WMHS, passed your story along today and asked for prayer. In the past year my wife and I had our second daughter, who was born with trisomy 21 and needed heart surgery within her first six months of life. It is incredibly trying to walk between prayer and medical fact, but as your testimony of faith reveals, God's love is so much bigger than our ability to understand His will. Even in the roughest moments of our lives, His love can see us through. You've got a church in Dallas praying for you now, especially for little Sara.

    Sean Smith

    2 Corinthians 1: 3-5 (The Message)

    All praise to the God and Father of our Master, Jesus the Messiah! Father of all mercy! God of all healing counsel! He comes alongside us when we go through hard times, and before you know it, he brings us alongside someone else who is going through hard times so that we can be there for that person just as God was there for us. We have plenty of hard times that come from following the Messiah, but no more so than the good times of his healing comfort-we get a full measure of that, too.

  12. I just wanted to let you know that we are praying for your precious family and your newest member little Sara Rose. I lifted you guys up at church last night and will continue to petition our Heavenly Father with prayers for strength and comfort for you guys at this time. I have struggled with being able to say anything that could give you even a moment of comfort but I did decide to share this little bit. My younger brother was born at 31 weeks over 30 years ago and my younger sister was born at 28 weeks over 27 years ago. My brother is completely healthy and while my sister has cerebral palsy she is a blessing that no doctor ever thought would survive. When she was born the doctors gave my parents very grim news about her possibly surviving and one doctor even suggested that they institutionalize her because she would never recover. Today she has her Master's Degree and works at West Ridge Middle School. (She did drop out of Tech's PhD. program, but I kidded her that she was just in it to avoid getting a job and was instead becoming a professional student! :) I say all this as a reminder that only God knows the plans He has for your precious daughter. We will continue to petition our Heavenly Father for your sweet family and for little Sara Rose. Thank you for sharing your life with us.

    Tara, Jonathan, Jon Mical, and Mallory Hill

  13. After praying & searching for "Sara's verse," God revealed to me that I needed to share the verse that I clung to while my boys were in the NICU.
    1 Samuel 1:27
    I prayed for this child, and the Lord has granted me what I asked of him.
    Jen, I know what you are facing, I pray for you to have strength and hope. I pray that you cling to God, allow Him to carry you. I look forward to you feeling peace as God heals and develops Sara.

  14. Stumbled upon your blog from another I frequently read and am writing to let you know that I will add your beautiful miracle to my prayers tonight. I have a wonderful son who was born at 36 weeks with multiple complications. We've spent more time than I care to remember in the NICU & the PICU - and it's a tough, sad, disheartening road with its shares of ups and downs.

    Miracles DO happen, though - he's living proof! He wasn't expected to survive the pregnancy..but did. He stopped growing appropriately at 4 months of age..but he's still here. He has had RSV, meningitis, and complications all along the way (clotting disorder, seizures, allergic reactions, etc. etc.) - but he is the light of our lives and has taught us that he marches to the beat of a different drum -- and that perhaps we should listen just a bit harder for the beat that drives him!

    Blessings to you & your family - I will continue to think of & pray for your newest sweet little one.