I should start by saying that on November 13, they drew blood to screen for neural tube defects (spina bifida is a neural tube defect). About a week later they called and told me I had failed the screening and that I was being referred for my "20 week anatomy scan" to a specialist so I could have a "special" ultrasound. Everyone, including the doctor said it was probably a false positive. The doctor said there is an 80% false positive rate. I KNEW IT WASN'T. I just knew it. Clearly my "mommy instincts" had kicked in. I actually told Brandon and my supervisor at work that I REALLY didn't think it was a false positive. I don't know how I knew, but I did. December 1, 2009 is a date I will never forget. I'll never forget what I was wearing (green scrubs), I'll never forget what I had for breakfast (a blueberry bagel). I'll never forget that when the girl began the ultrasound, I saw that he was a boy and she let me tell Brandon (I told him "it's a Davis"). I'll never forget when she scanned to measure the spine. I SAW THE LESION. I almost threw up...on her. It looked HUGE. She wasn't a doctor. She could tell us NOTHING. She measure the lesion. It was 1 cm x 3 cm. TINY. She measured his legs. They were moving like crazy. I smiled. The doctor came in to talk to us and was so cold. So impersonal. So not the bedside manner a high risk OB/GYN needs to have. She didn't answer any questions. She told us his spinal cord was NOT out in the sac. It was exactly where it should be. She told us termination was an option. I told her it ABSOLUTELY was NOT. Brandon didn't say anything. We got a few pictures of our baby. His face, his foot, etc. We got a disc of the ultrasound. She did an amniocentesis to make sure there wasn't anything else "wrong" with him. Though nothing it could have shown would have made us change our minds about having him, I did NOT need any surprises. We left. We cried. We rode the elevator to the parking garage with the doctor who DID NOT SAY A WORD TO US. We called our parents. We cried some more. Because of the amnio, I had to go home and do NOTHING for 24 hours. I layed on the couch, Brandon sat at my feet. We put our phones on silent, and watched TV all day. Almost in silence. The next morning, I was at peace. I knew everything would be OK...my God is good. He is faithful. He is in control. The next 5 months were LONG. We went to a different specialist for me...one that I requested. HE IS FANTASTIC. He typically has no personality. He typically sees patients the first time, then not again until delivery. When he saw us, he smiled. Laughed. Joked. Asked what we needed him for. :) He also told us the spinal cord was exactly where it should be and was not out in the sac. He told us the vertebrae were perfectly formed. He was amazed by our boy. I was amazed by our God. Every 2 weeks we had an appointment...with him. Every month we had an ultrasound...with him. He didn't pass us off to other doctors. I looked forward to those appointments, and dreaded them at the same time. Every time we were checking for leg movement, and his brain. His perfect brain that NEVER showed any sign of chiari malformation or fluid in the ventricles...both almost always present. Every time he put that probe on my belly, Dr. Tabor told me to "relax. He's perfect." I know I've mentioned it here before, but I LOVE THAT MAN! :) He never had anything but good news. The neurosurgeon was equally amazed. He also told us the spinal cord and vertebrae were perfectly formed and exactly where they should be. He told us he was optimistic. He had his nurse call me a week later to tell me he had studied the MRI and ultrasound disc's I had brought in, and that he had never seen a lesion so low, or so tiny. He just wanted me to know...it was a VERY good thing. Phew. After the c-section, they wrapped him up, and let me see him. He was perfect. He had perfect apgars. He could have been his cousin Logan's twin. I told Brandon that the minute I saw him (Wyatt genes are strong). They let me touch him, and they let me kiss him. The nurse took a quick picture of the 3 of us. They took him away. Brandon went with him to the NICU while Dr. Tabor finished closing me up, and they took me to recovery. In the NICU, the neurosurgeon took a piece of gauze, and poked the sac. A little fluid came out, then the sac kind-of "sucked back in." Very cool. They covered his back with sterile dressing, and I never saw it in person. Only pictures. The next day, I felt miserable...SO MUCH PAIN! SO MUCH SWELLING! But, my baby was having surgery. I WAS GOING TO BE IN THAT WAITING ROOM WHEN THE DOCTOR CAME OUT. And I was. I'm stubborn like that. Sending him off to surgery was the hardest thing I have ever done. Ever. But, I trusted my God, and I trusted Dr. Roberts. They called me when they started, and said they'd call again when they were half-way done. We waited. ALL of us. Our family FILLED the surgery waiting room. :) I got nervous because it was taking so long to get "half way." My pain medicine had run out hours before. Not a good combination. Then Dr. Roberts came out into the waiting room WITH A SMILE ON HIS FACE!! Ah, sweet relief! He said our boy was perfect. His lesion was so small, he had to make a bigger hole to put the sac in. He said there were a couple of very small nerves in the sac, but nothing big. He said his legs had perfect function. He said there was still no indication of any extra fluid on his brain. NO shunt (for now). He said we'd just have to "wait-and-see" as far as what the nerves were. (At this point, they appear to be his ability to "hold it" as far as bowel/bladder is concerned. A non-issue for a few years. We'll worry about that later.)
Skip ahead a few days. A few LONG, LONG days. I was discharged on a Sunday. We "roomed in" with Davis Sunday night. He was discharged on Monday. WE WENT HOME TOGETHER. Unheard of in the world of spina bifida.
Skip ahead 6 months. We've had WAY too many doctor appointments. He still has no shunt. He has normal bladder function, and is not cathed. He has physical therapy once a month "just in case." She reports that he doesn't need it, but follows him because we request it. All of his function is normal. He even wiggles his toes. He rolls over, sits up, stands and walks holding our fingers, and jumps in his jumper. He babbles, responds to his name, plays, laughs, and growls at us when he's mad (we'll have to work on that later). He is perfect. He is a miracle (all babies are)! There are still soooooo many unknowns, but we wait and see. And continue going to a million and one doctor appointments. They keep a tight reign on him, and that's more than OK with us. There is always a possibility that he'll need a shunt, but they say if he could make it to 6 months without one, he'll "likely NEVER need one." Again I say...OUR GOD IS SO GOOD! We are so blessed!
*A side note...all of his feeding problems, and the feeding tube have nothing to do with the spina bifida...just the severe reflux. Ha. The stuff we worried about is a non-issue. :) Love our Lord's sense of humor. (And, I have no "news" on the feeding front that's any different than previous posts, except that they changed his medicine to a stronger one. I'll post about that later.)
When we first found out he had SB, I knew what to expect (as far as what the lesions look like). I'd seen it multiple times before (at work), and each time, it looked different. Brandon only had 1 reference point...a sweet, sweet boy whom we love more than anything. Who was born just 11 months prior to our diagnosis. :) Anyways, I searched the internet for pictures to show Brandon. It was nearly impossible. I found a few pictures of "worst case scenarios," but the only other things I found were printed drawings. Ugh. It was frustrating. Even other SB mommy blogs didn't have pictures of actual lesions before and/or after. We knew from the very first day that he was kicking like crazy, moving his hip/knee/ankle joints, and would definitely walk. We knew his lesion was low and tiny. We knew it was so low and tiny that both the neurosurgeon and specialist who would deliver him had never seen such a thing. It was one time in my life I was perfectly happy to have something doctors had never seen before. We knew he had no extra fluid on his brain. We knew we were blessed. We prayed like we had never prayed before. We knew others were praying for us, and our sweet Davis, but had NO IDEA just how many people. Every appointment we had from December 1st, until just 5 days before he was born, brought better news. Again I say...people were praying! People still pray. We still very much need people to pray! Thank you all sooooo much for praying for us for the past 10ish months. Please don't stop!
Goodness...what began as a "picture post" turned into a book (at the urging of a SB mommy friend)...that sometimes repeats itself. Oh well. I'm too tired to fix it. But, now for the pictures. WARNING...the first one is right when Dr. Tabor pulled him out. My guts are open under the baby, but it showed the lesion size in reference to his whole body.
See? TINY!
Remember...1cm x 3 cm. Dr. Roberts said the skin actually closed around it.
The day after surgery. See why we had such a hard time keeping poop out of it? We couldn't. It was impossible.
See how tiny the scar is? Golf balls aren't very big, but it's longer than the scar. :)
This was our sweet boy today. JUMPING in the Johnny Jump Up. He LOVES it!
"Down..."
"UP!"
You have all been so faithful in your prayers for us! Please keep them comming! And, please remember all the other kiddo's with spina bifida. Some just like Davis, most who struggle much more. Please pray for them all!
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