Saturday, April 3, 2010

A New Prayer

Well, yesterday kind of took us by surprise. We had been told that Mattie was scheduled for a repeat brain ultra sound because she had a Grade 1 bleed just like her sister had last week. Sophie's had completely gone away by the repeat ultrasound and we expected Mattie's to do the same. After the ultra sound we went in to find out about the results. Since the doctors had not read them yet or come to talk to us about it, I asked the nurse, who was new to us that day, what they looked like "unofficially." I don't think that was fair for me to do. Looking back, I think she probably balked a little before saying it looked like a Grade 1 bleed still. Grade 1 is very normal and doesn't really mean anything as far as damage goes.

Needless to say, when we came in yesterday and asked about the official results and the nurse called the Doctor in to explain them to us, our stomachs sank. I can't begin to explain exactly what it is, because I don't recognize most of the words that we heard and read. Put simply, it's not one of the "graded" things which is what we expected because that implies bleeding. Mattie's ultrasound showed spots in the front and back of her brain near where the spinal column attaches where there was a lack of blood and oxygen at some point. Periventricular Leukomalacia, I think is the diagnosis. They will do another routine ultra sound when the girls are 30 days old that will show even clearer how much damage was done. We've been told and we've read that this type of "insult" results in a 60-100% chance of cerebral palsy in some form.

Yesterday, we tried to absorb the shock. Amber wanted me to say that since Twin-Twin Transfusion, and having twins, and not knowing about the Twin-Twin Transfusion until so late, among other things were all very rare, low percentage types of occurences, and we got all of them, then maybe we just like hanging out on the low percentage side of things and there won't be any problems at all:)

If any of you went to CYC then you saw the second speaker on Saturday give maybe the most touching lesson of the weekend. He has cerebral palsy. I took a picture of him on my phone and last week some time I put that as my backdrop on my phone. I won't ask you to pray that Mattie won't be handicapped, because I'm not sure how praying in the will of God is supposed to work. Maybe this is God's will. My prayer is that God will keep them safe physically. Amber's prayer is that Mattie will be able to feed normally (not being able to suck and swallow is one of the dangers of PVL). Both of our prayers are that God will prepare us to be the parents that we need to be to our girls no matter which class they are in at school (or as one of the neonatologists joked 3 weeks ago, if they will ride the long bus or short bus). We would ask that you would pray for whatever God leads you to pray.

To the person who commented a while back on our faith and referenced the passage about the father of the demon-possessed boy crying out, "I do believe, help my unbelief!" I want you to know that we do not have great faith. We are struggling like that dad. I guess I'm believing that God can work whatever miracle he decides to work, whether that's no CP or just keeping us sane throughout, whether we have the faith that can move mountains or not.


  1. I love you guys so much, and I am praying every second that God's perfect will will find its way into this situation. You both are amazing. If you need us, we are here. Meanwhile we'll keep the prayers coming as diligently as we can.

    Natalie T.

  2. Short bus or long, your beautiful girls' lives will glorify the One who lovingly made them. They're doing it already!
    Much love and prayer for you all as you press on!

  3. I don't know you guys, but went to Freed with Amy Porter and have been keeping up with your story. Just know that there are hundreds, thousands of people I am sure, that do not know you...who are praying diligently for you, Sophie and Mattie. You are in our prayers and on the prayer list in Cookeville, TN. Sending lots of love and prayers your way!

  4. You, Amber, Mattie, and Sophie are in my prayers every day. Life can be hard at times, but lately the words that I heard "If God brings you into it, he will bring you through it" means so much to me. I know this applies to everything in life. I love you and Amber and will pray. I have been writing my prayers down and I try to write them about 25 times for you . I know God will see you through. Love, Carol Overton

  5. You are in our prayers, all the congregation at Stantonville is praying too. I know my heart cannot know your fears or concerns, but Jehovah our God does. As I read this the words God spoke to Paul echoed in my head, "And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness." He will be your strength.
    Larry Redmond

  6. I cannot imagine the amount of stress the both of you must be encountering . Mix in not sleeping well and you have a couple of minds bordering on hysteria. Remember, if Christ is for you who can be against you? Although it seems like the world sometimes, there aren't two people on this earth that are better suited to be parents, no matter what, than you two. God has prepared you both and you both are on a hill shining brightly. We remain prayerful.

  7. Praying for you and your sweet Mattie and Sophie.

  8. Josh and Amber i don't know a lot about most things but I think that when we come to times like these we tend to second guess ourselves and how strong we are or arent. I have read the last paragraph several times and to me I believe you have more faith then you believe yourself to have. you sound to be submitting yourselve to God's will whatever the outcome might be, as you stated "I guess I'm believing that God can work whatever miracle he decides to work, whether that's no CP or just keeping us sane throughout," WOW!!!! isnt submitting to God's will having faith? I watched you the other day with that little girl and have no doubt in my mind that you and Amber will be great parents no matter how the girls leave the hospital. I am praying God will work a miracle and the next scan will so nothing, after all I just love it when doctors get stumped lol :) regardless we are praying for strength for all of you and even when you can not see your faith you continue to show it to others. we have grown to Love you all through your postings and JD. please if you just need someone to scream at or pray with whatever you may need we are hear for you. may you have a blessed day. Chris and Penny Kieffer

  9. Josh & Amber: My prayers are with you and the girls and know that whatever happens God will open windows for you. I am glad you are staying at Natchez Trace. I went there for years before moving back home. Not many people I knew still go there but it was always a blessing when I attended.

    Kitty M. Steede

  10. Josh and Amber-

    Love, love, love, and prayers for you! Josh, I was so touched you took time out to come see the gang at L2L Saturday. After hearing about the news you had just received, it means even more. I teared up a little when Copeland saw you and ran to hug you without even thinking. You have both made an impact on our family for the better and if there is ANYTHING we can do for yours, please let us know.