Tuesday, October 18, 2011

Spina Bifida Awareness: Meet An Amazing Family!

There are not words in my mind to introduce this family adequately...
So I am just going to let Pamala tell their story....

It's hard to believe it's been 23 years since my husband, Kevin, and I heard the word Spina Bifida.
We had been married 3 years and we were wanting to have a baby. We were both college students at the time so when my OB/GYN told me I had a severe case of endometriosis and had to have a laproscopy to have it "fixed" so we could conceive, we didn't worry too much. I went in for the laproscopic procedure and blood and urine tests were done,,,,come to find out I was pregnant!!! We were excited beyond measure!!!
I had the AFP test done which came back negative for neural tube defect and also had two sonograms where all measurements were normal. Devin's hand was over her spine on both sonograms but our doctor said it was nothing to worry about. I went into premature labor 7 weeks early due to pr-eclampsia, When my sonogram was done in the hospital, our daughter still had her hand over her back but she was breech so my doctor had to perform a C-Section.
I thought a c-section was scary enough, but when our daughter was being delivered I heard my doctor yell out this weird word that has become an everyday word for us now and that was MYELOMENIGOCELE!!!!!.......
I was unable to hold her, I had no idea what was going on, but Our God was there the whole time. I got a brief glance at her as they rushed her out of the operating room and for those few seconds our eyes connected and I knew she would be a fighter. Devin  weighed 4 lbs 4 oz and was 17 in long.
Our pediatrician was unable to be in the delivery room so a pediatrician that was the specialist at the time for the Spina Bifida clinic was able to explain a little before he rushed off to take care of our baby.
The neurosurgeon was the first to "visit" us after he was interrupted from a golf tournament. I thought he was the devil himself. He had nothing encouraging to say. He said Devin would probably never talk.....she started at 13 months and hasn't stopped yet, he said she would never walk and she started walking with small leg braces at 2 years old. Then basically he told us that since we were poor college students and my husband was a youth pastor on a limited income we shouldn't have ever had her, but since she was here we should think of our options. Was this guy nuts? My first question was "Ok, tell me what she can do? I know we had prayed for her even before I found out I was pregnant."
So we decided to focus on what Devin could do and not what the doctors said she probably wouldn't do.The first thing we focused on was right after her first surgery she could smile and that smile still keeps me going. Besides, Our Lord is bigger than any kind of medical theory or statistics that man came up with.
Our precious baby girl had her first surgery at 19 hrs old to close up her back which we found out later was level 3-4 on her spinal cord. She was off the ventilator even being a preemie after 12 hrs. The NICU kept close watch on her for any sign of hydrocephalus which started being obvious by the 2nd day after they closed her back. When she was 4 days old she had what is called a shunt placed inside her brain to drain the spinal fluid. The way we described what hydrocephalus was with Devin is like a water hose being crimped and it builds up pressure.
We were able to bring Devin home from the hospital when she was 2 weeks old. She was able to go to her daddy's college graduation. Yes, he was able to finish even with her being born in April, his professors worked with him and the nurses in NICU helped him with his final term paper. God is Good at ALL time.
We thought we had strong faith before Devin was born but we had no idea the plans God had for us. 
Devin had to have a shunt revision at 6 wrrks, 9 months, 2 yrs, de tethering of the spinal cord at 3 yrs old. Then we noticed her eyes weren't really straight so she had 2 eye surgeries to correct her beautiful blue eyes.
During this time we went to monthly spina bifida clinics in Austin, TX. We actually started to look forward to them, it was a place we could be around people who were going through the same stuff we were. They understood our talk of shunts, CT Scans, VCUG's, renal sonograms, Urodynamics, and hospital stays. Our favorite part was it was like a pageant for all the little girls there. All of us mommies would dress our little girls up that were around the same age and show them off.
On one of our visits, I happened to notice a baby in a stroller with only a diaper on, covered halfway with a very dirty blanket. The woman with him acted mad at the world and wouldn't even look at her baby when he cried. I couldn't take my eyes off this precious  baby. We saw him again about 6 months later but with a new woman. She was a foster mother. He was malnutrition and we found out he was neglected physically and emotionally and was left to starve to death in a closet where his birth grandmother found him. I know it had to hurt to call CPS on your own son and daughter in law and that is why I know she has a place in her heart for our Brannon and would have taken him if she could but was unable too.
That next day we saw Brannon's picture in the paper, Wednesday Child, it was called. I showed Kevin the picture and the first thing we thought of is what we had told God when we miscarried our son Micah at 5 months due to a chromosome abnormality. We had told God that we would have taken our child no matter what, we just wanted him to live. Brannon was the same exact age as Micah would have been and it was as if God was saying to us.."did you really mean it?"
I called and got the process started and was told it might take 2 years. We had Brannon Luke in our home permanently in his forever home, 6 months later. His level is S1-2 but has split spine with a bone spur at T12 which was removed, he didn't move his legs until he was 2 years old, has a VP shunt that was revised when he was 12. He has absolutely no paralyzation, no bowel or bladder problems. He was able to start crawling at 3 yrs old and weight bearing. Things were looking good for him to be able to walk but he has a severe case of hip dysplasia and it got to where it was just too painful for him to stand. He uses a wheelchair and Devin started using one when she was 7 for long distances and all the time when she hit middle school because she could get to classes faster.
 Devin started dance class,T-ball and piano classes when she was 4 but now after attending two years of college has found her true love of writing music and has had one of her songs copyrighted.
Brannon just completed his first year in Challenge League baseball. His smile is never ending and is our peacemaker of the family. He brags all the time about he was born IN my heart.
All things happen for a reason.
The scripture Romans 8:28 "and we know that all things work together for good for those who love Him" God has a purpose for allowing my husband and I to raise these two masterpieces to bring Him glory.
We prayed for healing so many times and now we are seeing more and more of the story He is is writing for our children. They bring sunlight to every room they enter.
One of their other biggest fans is their sister, Kammie, born right after Devin and right before Brannon. She knew so many medical terms regarding Spina Bifida before she hit 1st grade, it was crazy.
I can't say it's been easy but with God on our side raising Devin and Brannon, we can't go wrong. My scripture for them is Isaiah 40:31 "but those that hope in the Lord shall renew their strength. They shall soar on wings like eagles. They will run and not be weary, they will walk and not be faint"
 I know their race isn't over yet but when it is they will be complete...there will be no hole in their spine, there will be no hydrocephalus and shunts and there will be no more spina bifida. Jeremiah 29:11 " For I know the plans I have for you,declares the Lord, plans to prosper you, plans to give you hope and a future." The way I see it, from the minute our children took their first breath, God had a wonderful,magnificent story he was writing for their life, and He isn't finished yet.

United by Spina Bifida Group on Facebook
See what I mean??? Isn't that a great family story???
I am feeling SO BLESSED tonight with the stories I am editing and sharing.
To everyone who has shared a story with us, thank you for entrusting us with such inspiration to share!
Thank you Pamala!


Jamie said...

I love that story!!