Tuesday, November 16, 2010
I know...
I know! I'm soooo behind! I have GOT to get my act together! I'm working on a post. It's taking me forever, but I'm hoping to finish it tomorrow. Our boy is 7 months old now! He's a joy...when it's not feeding time. No...feeding isn't going any better. More on that later. Just wanted to let you all know it's comming! Check back tomorrow or Thursday!
Sunday, October 24, 2010
Spina Bifida Awareness Month
Most people don't know this, but October is Spina Bifida Awareness month. It's kind-of overshadowed by Breast Cancer Awareness. *sigh* Both are good causes. Given that it's a time for awareness, I thought I'd post the "story" and pictures of Davis' back at birth, just after surgery, and now.
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.
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!
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!
Saturday, October 16, 2010
6 Months
We made it!! We made it to six months with no shunt!! We had a little party Thursday night...cake and all. Very good cake, I might add. (Davis agreed!) The doctor and his physical therapists still say everything is great...NORMAL! :) Developmentally, they said the range for sitting up is 6-8 months and crawling is 7-9 months. He is really sitting up well! You can almost classify him as a full time "sitter." He does still fall over some...especially when he gets excited. Every day he does a little better. We're still working on crawling. If he could figure out the arms, he'd be doing that too. The doctor said by nine months he should be standing holding onto furniture. He got more shots (3), and also his first flu shot. He was NOT a fan!
As far as feeding. Ugh. No better. The doctor and dietitian started him on an appetite stimulant yesterday. They said give it a week. He'll either be eating better, or he'll be frustrated. We will see. So far, the only thing I notice is that the "increased drowsiness" side effect is strong. He was only awake for about 3 hours today. TOTAL! They said that should go away. I hope it's soon. His height and weight are still affected by his lack of intake. Even with the feeding tube, we can only get 4.5ish ounces in him at a time before he starts trying to puke. They said he needs at least 6. *sigh* They said if we can't get anymore liquid in him, to try to start increasing his food intake. Neither is going well. We'll keep working on it.
He weighed 15 pounds, 1 ounce (10th percentile...ugh), and was 25 1/2 inches tall (also 10th percentile). He's short and "small." The size itself wouldn't be a problem if he was at least growing. Again, we'll keep working on it.
Other than the feeding and weight, they say everything is perfect! I love hearing that! Please keep praying for our sweet baby!!
As far as feeding. Ugh. No better. The doctor and dietitian started him on an appetite stimulant yesterday. They said give it a week. He'll either be eating better, or he'll be frustrated. We will see. So far, the only thing I notice is that the "increased drowsiness" side effect is strong. He was only awake for about 3 hours today. TOTAL! They said that should go away. I hope it's soon. His height and weight are still affected by his lack of intake. Even with the feeding tube, we can only get 4.5ish ounces in him at a time before he starts trying to puke. They said he needs at least 6. *sigh* They said if we can't get anymore liquid in him, to try to start increasing his food intake. Neither is going well. We'll keep working on it.
He weighed 15 pounds, 1 ounce (10th percentile...ugh), and was 25 1/2 inches tall (also 10th percentile). He's short and "small." The size itself wouldn't be a problem if he was at least growing. Again, we'll keep working on it.
Other than the feeding and weight, they say everything is perfect! I love hearing that! Please keep praying for our sweet baby!!
Trying to crawl
He was LAUGHING! :)
See? Sitting!
Trying to grab the camera. I have more pictures of his hands than his face now. :)
A half cake for a half birthday! The cake was really for us, but when we sat it down for the picture, he started playing in it. Then, he put his hands in his mouth and ATE IT!! He sure did. Milk? NO! Food? NO! Cake icing? YES please!! :) If only I could justify feeding him cake icing every day. Ha. My sister said that not only does that make him mine, he IS me. :) She's right.
So happy!
Destroyed. He has good taste. It really was good cake.
Monday, October 11, 2010
Catch-Up...Again
I really need to find a better system. I cannot find enough time to get everything done...and sadly, blogging lands at the bottom of the list! Here we go...I just counted there are 40 pictures! :)
I just liked this one. He almost always has his feet crossed when he sleeps.
STATE FAIR
I took this one when he woke up that morning. He was ready for the fair! B and I bought these pajamas at the state fair last year. We knew a baby was comming, but had no idea if it was a boy or girl. Worked out perfectly! :) Looks like a gown, but it has legs. He's just laying funny.
Waiting for Daddy to buy the tickets. He wasn't quite sure what was going on. He slept all the way there, and when we got there, we put him in the stroller in the hot sun, and bathed him in sunscreen.
The butter sculpture this year. Davis and I went back to the fair with my parents yesterday while B was at the Ranger play-off game, and I got a picture of it completed. Check below.
My sweet boy. Waiting to see Tom Landry's stuff.
Still waiting.
"The" hat.
Some bracelet thing. It's supposed to improve your strength, balance, etc. Supposedly it works. B said so too. Davis and I didn't feel the need to try it out.
We were well protected. The mounted police were everywhere.
Having fun at the fair!
Can you tell who they are? L to R...lady from the news, Emmitt Smith, Ebby Haliday (realtor), Roger Staubach, and Tom Landry's wife.
His first parade.
He watched most of it.
We had just fed him some cotton candy. He was NOT a fan. If he's truely mine, he'll learn to LOVE the pure sugar-y goodness!
Our walk to the car led us straight down the entire midway. You all know how loud and crazy it is. Davis CRASHED! He was worn out!
He fell asleep in the midway. Slept through being put in the car, the entire ride home, getting out of the car, taking a bath, getting dressed, tube fed, and into bed. He was so tired! I should also mention that we got to the fair around 1:30pm, and left about 10pm.
Watching the Rangers Try to clench the AL title.
They did it!!!
His current mode of transportation. (It's a loose term.) He uses his legs and "scoots" or rather, pushes himself around. He's already had one small carpet burn on his face. :) We're working on the arms.
Sitting up all by himself! We still have a ways to go, but he's able to do it longer and longer. When he saw the camera he started falling forward. Haha.
I just thought this one was cute.
PUMPKIN PATCH
When your Grandpa is the driver for the hayride, you don't have to ride in the back where all the "nasty" is...you get to drive! :)
He really did enjoy the pumpkin patch, but was VERY careful NOT to smile when the camera was out. Stinker.
See?!
WAY too much to look at!
Almost!
"Mama...pick me up!"
The girl scouts were a great source of entertainment for him.
There's a "half-smile."
I just thought this pumpkin was funny. I wish I would have bought it. How fun would that be on the front porch?!
First time in an outside swing. Despite the scowl, he really liked it.
Talking to Aunt Sha...look closely...you can see her on the screen.
The completed butter sculpture.
My sweet boy and all his personality at the fair yesterday. :)
Daddy and D watching the Ranger game today.
This was just too cute to pass up.
Watching the Cowboy game today. :) Haha...notice a theme?!
How was that?! Now you're all caught up. As far as feeding is concerned...blech. Most days he eats NOTHING by mouth. We try, he refuses, so we have to put it all in the feeding tube. SOOOOO frustrating!! Please keep praying for his feeding!! The doctor's say there is no medical reason why he won't eat. He just doesn't think he needs to. He will cry because he's hungry, may take a drink or two, then stops. If you put it in the tube, good. If not? He doesn't care. He'll go all the way to the next feeding time. Again, SOOO frustrating!
He will be 6 months old Thursday! We're going to have a party! The neurosurgeon has said all along that if he "makes it to 6 months without a shunt, he'll likely never need one!" Yes, it's always a possibility, but highly unlikely! And, Dr. Roberts said that he's never put one in a kid (with spina bifida...not injury, etc.) after the soft spot closes!! Please keep praying for that too!
He goes for his 6 month check-up Friday. I'll be back then with pictures and stats! Thank you all for your continued prayers!!
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