Help Cover Costs for Grady Thiel's Surgery
Donation protected
My name is Heidi Stenlund and my sister is Amy Thiel and her husband is Chris Thiel. Their 2 and a half year old son Grady was born with spina bifida. Due to complications from spina bifida, Grady will be having cranial reconstructive surgery soon. This is the reason for this gofundme page. They live in Billings, Montana but will be traveling to Salt Lake City, Utah for the surgery. There will be significant expenses including medical, travel, room and board, and meals for a couple of weeks during Grady's recovery all while missing work. This will be a difficult time financially for them so it would be a blessing to them if we could help them out in this way. Consider donating and keep my nephew Grady in your prayers as well as Amy and Chris as they have to leave their three month old Max behind with gamma and gamps and as they watch their child have another surgery.
If you want to read Grady's whole story, here it is. This is a compilation of Facebook posts from Amy Thiel that shares their experience of having a child with Spina Bifida and everything leading up to this upcoming surgery.
It was a summer day in 2018 that we found out the baby I was carrying would most likely be born with Spina Bifida. The doctor called a couple days after my 20-week anatomy scan to tell us the ventricles on baby’s brain were measuring much larger than normal. I would need to see a specialist to see if they could find out why. I didn’t see my doctor because she was out of town at the time. At the specialist we found out the cause of the extra fluid was most likely Spina Bifida, although she could barely pick up the opening on his spine at that time (because it was still quite small at that point). She went through what it entailed and I sat and listened in a bit of a daze. All I really picked up was that, because it was so tiny and low on his spine, there was hope that he wouldn’t be a severe case. We clung to that hope. Although I’ve come to understand all the terms better now, we had no idea what all this meant for us as parents. We heard things described in terms we were supposed to understand like “extra fluid on the brain,” lemon shape, banana shape, nerve damage, bladder and bowel incontinence, and more. Although we understood these terms better than the actual medical terms, it was still unknown exactly what the impact would be on our particular child. Doctors would tell us all of these were possibilities but we wouldn’t really know until the baby was born. We decided the best approach would be to listen and prepare the best we could but choose to be joyful in hope we would have a beautiful child that was a gift from God, regardless of what challenges lie ahead for us. For me the last half of pregnancy was the most difficult with extra ultrasounds, MRIs, and difficult conversations with doctors all centered around “possibilities.” It was not until Grady was actually born that they really knew what we were dealing with. It was also then, seeing my baby boy with my own eyes that I was able to really know it would all be okay. This was the beginning of our journey with Spina Bifida. I am so thankful for the lack of understanding during this time, because I think I would not have been able to enjoy pregnancy as much as I did. We could not wait to meet our little one and find out that we had a boy!!!
We were not able to hold Grady for four days, due to the defect on his spine. His tiny opening between vertebrae low on his back led to a pretty large bubble of fluid on the outside of his lower back. This would need to be surgically closed up. On his second day of life, Grady received this surgery. Because he was so tiny, all the wires and tubes made me really sad. Besides that he could only lie on his tummy or his side. I remember just sitting next to him, holding his tiny hand and resting my other hand on top of his head. He worked hard to start breathing on his own after the surgery in order to get the breathing tube removed. The nurse had shown us on the monitor which line meant Grady taking breaths and which was the machine. We would watch him respond when we talked to him or touched him. It took two days after surgery for that breathing tube to come off, but once it did my baby boy looked much more like a healthy baby to me. We were able to hold him the next morning; we just had to stay in reach of all his wires and be careful if his incision. This was a Friday, so I remember the weekend being a little quieter with more time for Grady to get stronger. He also started taking a bottle when the breathing tube came off, so we were able to take turns feeding him too!
The other quite noticeable concern was the deformity on his forehead. We knew from ultrasounds that our baby’s brain had more fluid than was normal. The doctors didn’t seem to think it was a concerning amount but we would only be sure after he was born. At that time it would be determined if he would need a shunt to drain that fluid. Once he was born it was still not a concerning amount but it seemed that some of the fluid had flowed out into his forehead. This was not a common occurrence with hydro but happened because of a small damaged area on the left side of his brain. They decided a shunt was probably the right thing since we weren’t sure what that fluid on his forehead was going to do. We had already been in the NICU for 7 days at this point. Our emotions were beginning to get the better of us and, even though this surgery was minor in comparison with the one he already had, I struggled with it more than the first one. The shunt was successfully placed and we immediately noticed a difference in his forehead size. He recovered from the breathing tube much more quickly this time, having it removed the same day. We were hoping to take him home the next day but Grady really needed one more day. So on Thanksgiving morning 2018, we brought Grady home to our little house in Elma, WA, where he saw his pets and his room for the first time. As scared as we were for the responsibility of taking care of him, we were relieved to have made it home after only a 9 day stay in the NICU. We were filled with gratitude that nothing about Grady was a surprise to his doctors and we were beyond pleased with the caring nurses who watched out for him those first days.
I remember feeling constant fear those first few weeks after bringing Grady home, fear that the doctors had missed something, fear that he’d get an infection, fear that I wouldn’t wake up to feed him or that I would do something wrong. I assumed most of my fears were the same as those experienced by all first time mothers, but I also knew Grady was at a higher risk for infection and malnutrition. I was thankful at first for the many extra doctors appointments; I always felt a little more confident with the assurance from the different doctors that he was doing well! I absolutely loved the timing of Grady’s birth, bringing him home on Thanksgiving, and getting to enter the Christmas season with a newborn. Chris and I had so much fun dressing him in Santa clothes and fancy Christmas church clothes. We also had lots of opportunities for visitors between Thanksgiving and Christmas. It was not until January that I began to let reality sink in, the reality that, as well as my son was doing (Don’t get me wrong, I was extremely grateful!), his life would always be impacted by this thing called Spina Bifida. Up to this point, I remember hoping we would just have to get through the first surgeries and then he’d be fine. When appointments continued into January and we began to see a physical therapist right away, I started to realize he’d always have extra appointments. Then when his therapist said, “I think there’s a good chance he’ll walk someday,” it hit me that he MIGHT not or that he might take longer than other children.
I am so thankful for the support our family had Grady’s first year. We were far from family, which at first we didn’t understand, but our church family was like nothing we’d experienced before. My community at work was so supportive and I remember just craving the advice and wisdom from many who had also walked through difficult situations. We knew God had us there to be close to good medical care for Grady and he provided family when ours was not near. I will say that our families both made great effort to visit often.
Grady had his third surgery in March of 2019, at about four months old. It was routine for hernias, which are common in little boys with shunts. He would not have to stay overnight. I remember experiencing something I never had before. Now that I was a mother, there was a Mama Bear instinct that made me feel extremely protective of my little guy. I did not want him to be in pain!! It was very difficult to let them take him back to the operating room. Of course everything turned out fine and surgery was successful.
Just before we moved back to Montana in the summer of 2019, Grady had an appointment with each specialist (we didn’t totally know what Billings would have for pediatrics although we started doing our research). His urologist said we would need to begin catheterizing Grady four times a day, which we knew was a possibility but was overwhelming nevertheless. His neurosurgeon said it would be a good idea to start discussing surgery on his skull to fix the deformity on his forehead. We knew there wasn’t neurosurgery available in Billings and we knew this surgery would be one that we would insist on happening in a children’s hospital. We decided we would try to pursue going back to Washington for it. These were definitely overwhelming thoughts in the midst of everything else moving out of state entails. Once we were back in Billings, though, we knew we were “home.”
I can’t really think of a good word to describe Grady’s first year, except to say it was blessed. We were blessed to be his parents! If you’ve ever met Grady, you know his smile is a gift to everyone he meets. From the very beginning, he has charmed many with his facial expressions and his eyes. We wouldn’t ask for it to be any other way.
By the time Grady turned 1, he was sitting without support and army crawling to get where he wanted to go. He was definitely not walking or even close, but we were thankful he always seemed to be making progress!
The last year for Grady has been primarily focused on physical development; the last year for his parents has been us trying to slow everything down because he’s growing and changing faster than we are ready! Grady received his first pair of leg braces (AFOs) just after he turned one. I sort of thought, “Cool, now he’s going to walk soon!” Although he didn’t walk right away, he did continue to make progress. He went from army crawling at a year to hands and knees crawling at roughly 16 months, although he preferred crawling on knees and elbows in order to entertain everyone in the room. He was now sitting up so well that he was able to enjoy riding toys like a train that he rode all around the living room and kitchen last winter. His therapist began introducing us to the idea of getting him a stander that would allow him to be upright with complete support. This would help him gain strength in his feet and legs, as well as get him used to bearing his weight. Right at that time we were offered one from a friend who was done with theirs!! It was exactly the right size and Grady began standing in it everyday. We noticed a difference after one day; already Grady was trying to pull himself up more on furniture! Grady took a little bit to get used to the stander, maybe because of all the straps or maybe it was the feeling of standing straight up (above the floor). However it didn’t take long for him to ask for it by pointing, since he knew he probably got to watch a movie while in it. Last summer we were able to get Grady a gait trainer (KidWalk) to help him learn to walk and continue to gain strength. He didn’t really like it but we would spend time out in the garage twice a day through the summer working on walking. As he got better at using it, he began to like it more. It still isn’t his favorite thing but he has made so much progress from using it!
In August Grady began going to daycare two days a week, since school was starting back up again. I am convinced that he has made more developmental progress since then than he has from going to therapy or working with me at home or using all his equipment. Don’t get me wrong, ALL of it has helped him and I am so thankful for therapists that work with him regularly to keep him progressing. However, since starting daycare, Grady has gone from babbling to saying two-word sentences. We have watched him start climbing onto coffee tables and then on to chairs and the couch. He is spending much of his playtime standing and cruising along the wall, his toys, and the couch. I am so thankful that in the midst of COVID, he is still able to be socialized and learn all kinds of things from other kids (we won’t discuss the hitting, haha)!
Before we left Washington, we knew we would be catheterizing Grady regularly and that there was potential for another surgery coming up on his head. We have now been cathing him four times a day for over a year and it’s completely part of our daily routine. We hardly think about it being challenging, although at first it definitely was! We kept in contact with the neurosurgeon in Washington as well as our pediatrician here in Billings about the possible cranial reconstruction surgery. The hospital began working on getting approval from insurance before we really moved forward. They hit several dead ends after trying some different approaches, and then all elective surgeries stopped due to COVID. When more elective surgeries began to take place again I called the pediatrician and asked if we could pursue it somewhere else because I just didn’t think we’d get anywhere in Tacoma. Her recommendation was Salt Lake City because she had had good experiences sending patients there in the past. She sent the referral and we got things all set up for surgery on September 30. It was not until we got to his appointment the day before that we were told this would be multiple surgeries. We were a little shocked but prepared to deal with it. It did all make sense but it was a lot to process in a short time. We discovered that the first surgery would only be to widen his skull, not to fix the deformity. We were informed that we’d be bringing our boy home to Montana with two devices sticking out of his head that we would have to twist periodically to stretch his head. It sounded really scary! The doctor assured me it wouldn’t be a big deal and lots of parents have done it. Once that healed really well, we would go back for the second surgery, which would be to repair the deformity on his forehead and hopefully get the openings to close. We ended up coming home without the first surgery, only because Grady’s COVID test came back positive. He had no symptoms so we were not expecting that and it seemed a small reason to cancel a surgery we’d been waiting over a year for. However, after having had some time to process the new information, we are thankful we can schedule it at a later date. We now plan to go back in May for the first surgery.
If you want to read Grady's whole story, here it is. This is a compilation of Facebook posts from Amy Thiel that shares their experience of having a child with Spina Bifida and everything leading up to this upcoming surgery.
It was a summer day in 2018 that we found out the baby I was carrying would most likely be born with Spina Bifida. The doctor called a couple days after my 20-week anatomy scan to tell us the ventricles on baby’s brain were measuring much larger than normal. I would need to see a specialist to see if they could find out why. I didn’t see my doctor because she was out of town at the time. At the specialist we found out the cause of the extra fluid was most likely Spina Bifida, although she could barely pick up the opening on his spine at that time (because it was still quite small at that point). She went through what it entailed and I sat and listened in a bit of a daze. All I really picked up was that, because it was so tiny and low on his spine, there was hope that he wouldn’t be a severe case. We clung to that hope. Although I’ve come to understand all the terms better now, we had no idea what all this meant for us as parents. We heard things described in terms we were supposed to understand like “extra fluid on the brain,” lemon shape, banana shape, nerve damage, bladder and bowel incontinence, and more. Although we understood these terms better than the actual medical terms, it was still unknown exactly what the impact would be on our particular child. Doctors would tell us all of these were possibilities but we wouldn’t really know until the baby was born. We decided the best approach would be to listen and prepare the best we could but choose to be joyful in hope we would have a beautiful child that was a gift from God, regardless of what challenges lie ahead for us. For me the last half of pregnancy was the most difficult with extra ultrasounds, MRIs, and difficult conversations with doctors all centered around “possibilities.” It was not until Grady was actually born that they really knew what we were dealing with. It was also then, seeing my baby boy with my own eyes that I was able to really know it would all be okay. This was the beginning of our journey with Spina Bifida. I am so thankful for the lack of understanding during this time, because I think I would not have been able to enjoy pregnancy as much as I did. We could not wait to meet our little one and find out that we had a boy!!!
We were not able to hold Grady for four days, due to the defect on his spine. His tiny opening between vertebrae low on his back led to a pretty large bubble of fluid on the outside of his lower back. This would need to be surgically closed up. On his second day of life, Grady received this surgery. Because he was so tiny, all the wires and tubes made me really sad. Besides that he could only lie on his tummy or his side. I remember just sitting next to him, holding his tiny hand and resting my other hand on top of his head. He worked hard to start breathing on his own after the surgery in order to get the breathing tube removed. The nurse had shown us on the monitor which line meant Grady taking breaths and which was the machine. We would watch him respond when we talked to him or touched him. It took two days after surgery for that breathing tube to come off, but once it did my baby boy looked much more like a healthy baby to me. We were able to hold him the next morning; we just had to stay in reach of all his wires and be careful if his incision. This was a Friday, so I remember the weekend being a little quieter with more time for Grady to get stronger. He also started taking a bottle when the breathing tube came off, so we were able to take turns feeding him too!
The other quite noticeable concern was the deformity on his forehead. We knew from ultrasounds that our baby’s brain had more fluid than was normal. The doctors didn’t seem to think it was a concerning amount but we would only be sure after he was born. At that time it would be determined if he would need a shunt to drain that fluid. Once he was born it was still not a concerning amount but it seemed that some of the fluid had flowed out into his forehead. This was not a common occurrence with hydro but happened because of a small damaged area on the left side of his brain. They decided a shunt was probably the right thing since we weren’t sure what that fluid on his forehead was going to do. We had already been in the NICU for 7 days at this point. Our emotions were beginning to get the better of us and, even though this surgery was minor in comparison with the one he already had, I struggled with it more than the first one. The shunt was successfully placed and we immediately noticed a difference in his forehead size. He recovered from the breathing tube much more quickly this time, having it removed the same day. We were hoping to take him home the next day but Grady really needed one more day. So on Thanksgiving morning 2018, we brought Grady home to our little house in Elma, WA, where he saw his pets and his room for the first time. As scared as we were for the responsibility of taking care of him, we were relieved to have made it home after only a 9 day stay in the NICU. We were filled with gratitude that nothing about Grady was a surprise to his doctors and we were beyond pleased with the caring nurses who watched out for him those first days.
I remember feeling constant fear those first few weeks after bringing Grady home, fear that the doctors had missed something, fear that he’d get an infection, fear that I wouldn’t wake up to feed him or that I would do something wrong. I assumed most of my fears were the same as those experienced by all first time mothers, but I also knew Grady was at a higher risk for infection and malnutrition. I was thankful at first for the many extra doctors appointments; I always felt a little more confident with the assurance from the different doctors that he was doing well! I absolutely loved the timing of Grady’s birth, bringing him home on Thanksgiving, and getting to enter the Christmas season with a newborn. Chris and I had so much fun dressing him in Santa clothes and fancy Christmas church clothes. We also had lots of opportunities for visitors between Thanksgiving and Christmas. It was not until January that I began to let reality sink in, the reality that, as well as my son was doing (Don’t get me wrong, I was extremely grateful!), his life would always be impacted by this thing called Spina Bifida. Up to this point, I remember hoping we would just have to get through the first surgeries and then he’d be fine. When appointments continued into January and we began to see a physical therapist right away, I started to realize he’d always have extra appointments. Then when his therapist said, “I think there’s a good chance he’ll walk someday,” it hit me that he MIGHT not or that he might take longer than other children.
I am so thankful for the support our family had Grady’s first year. We were far from family, which at first we didn’t understand, but our church family was like nothing we’d experienced before. My community at work was so supportive and I remember just craving the advice and wisdom from many who had also walked through difficult situations. We knew God had us there to be close to good medical care for Grady and he provided family when ours was not near. I will say that our families both made great effort to visit often.
Grady had his third surgery in March of 2019, at about four months old. It was routine for hernias, which are common in little boys with shunts. He would not have to stay overnight. I remember experiencing something I never had before. Now that I was a mother, there was a Mama Bear instinct that made me feel extremely protective of my little guy. I did not want him to be in pain!! It was very difficult to let them take him back to the operating room. Of course everything turned out fine and surgery was successful.
Just before we moved back to Montana in the summer of 2019, Grady had an appointment with each specialist (we didn’t totally know what Billings would have for pediatrics although we started doing our research). His urologist said we would need to begin catheterizing Grady four times a day, which we knew was a possibility but was overwhelming nevertheless. His neurosurgeon said it would be a good idea to start discussing surgery on his skull to fix the deformity on his forehead. We knew there wasn’t neurosurgery available in Billings and we knew this surgery would be one that we would insist on happening in a children’s hospital. We decided we would try to pursue going back to Washington for it. These were definitely overwhelming thoughts in the midst of everything else moving out of state entails. Once we were back in Billings, though, we knew we were “home.”
I can’t really think of a good word to describe Grady’s first year, except to say it was blessed. We were blessed to be his parents! If you’ve ever met Grady, you know his smile is a gift to everyone he meets. From the very beginning, he has charmed many with his facial expressions and his eyes. We wouldn’t ask for it to be any other way.
By the time Grady turned 1, he was sitting without support and army crawling to get where he wanted to go. He was definitely not walking or even close, but we were thankful he always seemed to be making progress!
The last year for Grady has been primarily focused on physical development; the last year for his parents has been us trying to slow everything down because he’s growing and changing faster than we are ready! Grady received his first pair of leg braces (AFOs) just after he turned one. I sort of thought, “Cool, now he’s going to walk soon!” Although he didn’t walk right away, he did continue to make progress. He went from army crawling at a year to hands and knees crawling at roughly 16 months, although he preferred crawling on knees and elbows in order to entertain everyone in the room. He was now sitting up so well that he was able to enjoy riding toys like a train that he rode all around the living room and kitchen last winter. His therapist began introducing us to the idea of getting him a stander that would allow him to be upright with complete support. This would help him gain strength in his feet and legs, as well as get him used to bearing his weight. Right at that time we were offered one from a friend who was done with theirs!! It was exactly the right size and Grady began standing in it everyday. We noticed a difference after one day; already Grady was trying to pull himself up more on furniture! Grady took a little bit to get used to the stander, maybe because of all the straps or maybe it was the feeling of standing straight up (above the floor). However it didn’t take long for him to ask for it by pointing, since he knew he probably got to watch a movie while in it. Last summer we were able to get Grady a gait trainer (KidWalk) to help him learn to walk and continue to gain strength. He didn’t really like it but we would spend time out in the garage twice a day through the summer working on walking. As he got better at using it, he began to like it more. It still isn’t his favorite thing but he has made so much progress from using it!
In August Grady began going to daycare two days a week, since school was starting back up again. I am convinced that he has made more developmental progress since then than he has from going to therapy or working with me at home or using all his equipment. Don’t get me wrong, ALL of it has helped him and I am so thankful for therapists that work with him regularly to keep him progressing. However, since starting daycare, Grady has gone from babbling to saying two-word sentences. We have watched him start climbing onto coffee tables and then on to chairs and the couch. He is spending much of his playtime standing and cruising along the wall, his toys, and the couch. I am so thankful that in the midst of COVID, he is still able to be socialized and learn all kinds of things from other kids (we won’t discuss the hitting, haha)!
Before we left Washington, we knew we would be catheterizing Grady regularly and that there was potential for another surgery coming up on his head. We have now been cathing him four times a day for over a year and it’s completely part of our daily routine. We hardly think about it being challenging, although at first it definitely was! We kept in contact with the neurosurgeon in Washington as well as our pediatrician here in Billings about the possible cranial reconstruction surgery. The hospital began working on getting approval from insurance before we really moved forward. They hit several dead ends after trying some different approaches, and then all elective surgeries stopped due to COVID. When more elective surgeries began to take place again I called the pediatrician and asked if we could pursue it somewhere else because I just didn’t think we’d get anywhere in Tacoma. Her recommendation was Salt Lake City because she had had good experiences sending patients there in the past. She sent the referral and we got things all set up for surgery on September 30. It was not until we got to his appointment the day before that we were told this would be multiple surgeries. We were a little shocked but prepared to deal with it. It did all make sense but it was a lot to process in a short time. We discovered that the first surgery would only be to widen his skull, not to fix the deformity. We were informed that we’d be bringing our boy home to Montana with two devices sticking out of his head that we would have to twist periodically to stretch his head. It sounded really scary! The doctor assured me it wouldn’t be a big deal and lots of parents have done it. Once that healed really well, we would go back for the second surgery, which would be to repair the deformity on his forehead and hopefully get the openings to close. We ended up coming home without the first surgery, only because Grady’s COVID test came back positive. He had no symptoms so we were not expecting that and it seemed a small reason to cancel a surgery we’d been waiting over a year for. However, after having had some time to process the new information, we are thankful we can schedule it at a later date. We now plan to go back in May for the first surgery.
Organizer
Heidi Stenlund
Organizer
Bozeman, MT