Sunday, February 3, 2008

Prayers for Baby Peyton

Talk about miracles! I go to church with a special family! Peyton and his Momma have defied all odds! Doctor's didn't give much hope that either Kim or the baby would survive the diseases their bodies were fighting...but they did...and the way God is using their story is unbelievable! Here is the beginning of their story...easier to copy than to try to remember the details...

Last summer (June) I was diagnosed with a neuromuscular autoimmune disease called Myasthenia Gravis. Its a disease where my body produces this antibody that blocks the nerve impulses to my muscles and causes weakness and muscle fatigue. It's really not a bad case of it either, my left eye muscle gets weak from time to time and my eyelid droops as a result. Lack of sleep or stress triggers it. I take medicine to correct the symptoms. In July I became pregnant with Peyton and was referred to a high risk doctor to watch the pregnancy because they thought the pregnancy would cause my symptoms to worsen. Not the case - I was perfectly fine. Just before Thanksgiving I had my 20 week level 2 ultrasound they discovered he had some severe abnormalities with his limbs. We were devastated. My doctor knew what it was and actually encouraged an abortion but still referred us out. We flew to Children's Hospital of Philadelphia a week later where he was formally diagnosed with Arthrogryposis Multiplex Congentia. It was caused from the Myasthenia Gravis I have. The antibodies were going to his bloodstream and blocking his nerve impulses. This is called transient myasthenia gravis. Only a handful of cases have ever been documented and most babies died. The arthrogryposis itself is uncommon, but what makes the difference is the disease I have causing it. The weakness and lack of movement in the fetus would usually cause abnormal lung development and respiratory insufficiency was the cause of death. The doctors at CHOP suggested the only hope for him was plasmapheresis. I would have to have it every week until delivery to filter the bad antibodies that were attacking him from my blood. Basically they take all my blood out, and replace my plasma with a synthetic. This would be the first time this would ever be performed on a pregnant woman from the time of diagnosis until the delivery. The doctors here at home weren't experienced with doing this so we traveled to Duke every week for me to have this done. It took approximatley 5 hours to do the procedure and do the NST monitoring/ultrasounds afterwards. Oh it was awful. At 32 weeks we had to temporarily move to Duke until after the delivery. There were almost instant improvement with Peyton's overall condition. The damage to his limbs was already done and nothing could really be done about that, be he started thrusting his trunk and moving his head around more - the weakness was subsiding. He was delivered at 39 weeks via classical c-section, (they cut straight up and down to lift him out of me with out damaging his stiff limbs); weighing 7lbs 2 oz and 19 in long; and spent 12 days in the NICU. In the beginning he had a lot of trouble breathing and was almost placed on a respirator but after the first week he stabilized all on his own with only the help of an oxygen tent/nasal canula. He had a feeding tube until he learned to eat on his own and then after that he was sent home and we got to return to Tennessee. No doctor at Duke predicted he would live, much less have such a short stay in the hospital. He's still doing great and packing on the pounds. Peyton has a very severe case of arthrogryposis. He is unable to move his toes, fingers, feet (they are both clubbed), hands (which are clubbed as well), wrists, and his elbows and knees will not bend. The movement at the shoulders and hips is minimal. Both hips are dislocated. His limbs are shorter than they should be and he has abnormal muscle development, some muscles are missing. He will require many reconstructive surgeries but usage of his limbs will depend on what muscles he lacks. If there is no muscle then he will never be able get full function from his limbs. We don't know how much he will be able to do for himself, or if he'll ever walk. But God is clearly working in his life and we remain positive. We're trying to get set up with Shriner's. Until then we travel to Knoxville biweekly to see the pediatric orthopedist. They currently are treating his clubbed feet with casting that has to be changed out every time we go. He will be in casts for the first year of his life. He will soon be seeing physical and occupational therapists weekly, and the doctors at Duke are going to follow his progress. He will be in many medical journals to come and ETSU has already done a case study on his condition. My tubes were tied and he is the end of the road for us. The recurrance rate is very high and likely another baby would end up the same as Peyton. We have 3 babies though, our cups runneth over. We run our tails off day after day and our house looks like a daycare center.

A lot has happened over the past year; I am including the family's myspace page so you can learn more. Peyton will have surgery this Wednesday. Prayer is so powerful! Join me in praying for:

1. Safe travel to and from Houston, TX - not too much fun with a10 month old baby!

2. Success of surgery on his feet which will help straighten them

3. Peyton's tolerance of the anesthesia process

4. For Chad's parents who are keeping the other kiddos! Morgan (7) and Brady (2)

5. Good health - Chad's mom has been under the weather and Kim thinks Brady is getting for the rest of the gang too!

6. For Morgan and Brady who have to be away from Mom and Dad so much!

7. Wisdom for Doctors

8. Peyton's continued progress

9. Financial needs of the family to continue to be met

10. Praise to God for the way He is working miracles all around!

Here's a picture of Peyton. Check out that smile! He smiles all the time!

1 comment:

Susan said...

What an incredible story. Life is so precious. Obviously God has mighty plans for this little boy.