Pax's Piggy Bank for Spina Bifida
Donation protected
Hi everyone! This is Chelsea Mitchell, Summer & Pat's sister-in-law. I wanted to set this site up to aid in Paxton's journey. If you do not know the story, all of the words below tell you everything in Summer & Pat's own perspective. We know that, on average, the first year of life for a child with Spina Bifida is $51,000. We love this little family and want them to have everything they need for Paxton. This is going to be a financially trying time for them. Your support and prayers are so very appreciated! Please feel free to share Paxton's Piggy Bank with your family and friends, along with facebook! You can also follow along on Facebook at https://www.facebook.com/groups/803995219655302/
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We went to the doctor for our regular anatomy ultrasound. It was so much fun, we got to see every inch of little Paxton. Pat thought something was weird when we left (judging by the way the ladies were acting), but I thought nothing of it. A few hours later, my OBGYN called and said that I needed to come back for a blood test (Harmony) that the radiologist found a cyst on Paxton’s back that could be Spina Bifida. I knew the name was bad, but I hadn’t studied it since college.
Our OBGYN referred us to a Specialist in Tupelo, Dr. Brewer. We went there the very next day and he confirmed that Paxton did have a lesion on his back that is Spina Bifida. On day 25 of conception, Paxton’s spine didn’t close completely leaving him with an opening, or a cyst. In this cyst is parts of the spinal fluid and nerves. Our lesion seems to start at L2 (L= lumbar, a little above the belt area) and stretches to S4 (S= sacral, butt area). We had a pretty big lesion on our hands. This could cause paralysis of the legs, trouble controlling bowl and bladder, and a struggle walking. Although these are typical things that doctors see in Spina Bifida patients, many of the patients walk with assistance, walk with no assistance, have fully functioning bowl and bladders and never see a wheelchair. Brain function for Paxton is normal, he will be able to carry on a full conversation, and have a normal IQ. As of now, we have NO IDEA where Paxton will fall in this spectrum, but I do know that we will do EVERYTHING we can for this sweet baby. So, Dr. Brewer referred us to LeBonheur in Memphis where I would have to deliver by c-section and Paxton would go straight to surgery to fix this cyst.
We went to LeBonheur the following Wednesday, and they too confirmed that Paxton has Spina Bifida. The good news is that every place we go, the ultrasound technicians RAVE about how good everything else looks (heart and other organs). Dr. Samson, the neurosurgeon, said that he thought we had a secluded Spina Bifida case and that he can see no other issues (praise the Lord). My awesome husband researched everything there was to know about Spina Bifida and found an in-utero surgery to somewhat stop the progression of the damaging of the nerves. The surgery would be performed at 24 weeks. Pat definitely had us prepared to talk to a neurosurgeon and be able to understand everything that he was saying. The in-utero surgery would give Paxton a better chance of walking and being able to control bowl and bladder. But, the surgery is NOT a “fix-all.” As Dr. Samson was talking, Pat and I were shaking our heads up and down and I was thinking, “Tell me something I don’t know.” (I’m not knocking Dr. Samson at all, I mean he’s brilliant! He just didn’t know that I have a smartie on my hands, too!) So, as far as Dr. Samson could see, he thought we were candidates for the surgery and he referred us to Vanderbilt Hospital and CHOP (Children’s Hospital of Penn).
After researching and contacting both hospitals, they seemed to be pretty comparable so we went with Vandy because it was closer to home. After talking with Vandy for 2 days, they informed us that their neurosurgeon would be out of town the week that we should have had our surgery (week 24), but it wouldn’t make “that much” difference if we waited until he got back into town. Needless to say, this didn’t settle well with Pat and I because we knew, from our own research, that the sooner the better, so he contacts CHOP and gets us in a week earlier, because to us “that much difference,” is still going to be a difference.
The surgery was scheduled for Wednesday, February 25th. We got to CHOP on Tuesday the 17th for meetings and tests to make sure we were candidates for the surgery. We had a two-day consultation starting Friday and day 2 was on Monday. This was very extensive and we understood that we “looked good on paper,” but could get up there and they might deny us for the surgery if they didn’t like even a single thing (the criteria is very extensive). The qualifications for this type of procedure are very strict, and many women get turned down. We were so thankful for everything to fall into place for us to have the surgery.
Wednesday finally got here and surgery started at 7:30. Paxton's lesion was successfully closed and everything went just as planned. After surgery, we had a four day stay at the hospital and then we were transfered to an apartment-like home associated with the hospital here in Philadelphia. We were there at the apartment for two weeks and are now in a room at the Ronald McDonald house in Philladelphia. The remainder of the pregnancy will be spent here with weekly check-ins. We're looking at the average delivery date at 35 weeks due to the surgery. Paxton will be spending some time in the NICU after he is delivered by c-section.
At this point, we are asking for prayers that Paxton stays all nestled in my tummy until at least 35 weeks! You can add us to as many prayer lists as you can think of. Also, we don’t want to hear “I’m sorry,” because we are so not sorry for this at all. We know that it is going to be difficult, but God gave us Paxton this way for a reason. He does not make mistakes and Paxton went straight through the hand of God before He gave him to us. He fits perfectly into our family already (with Pat being a physical therapist), and we can see God’s plan playing out in our lives already. We may not know now, a year from now, or in this lifetime why this happened to Paxton, but we completely trust God’s plan for our lives. We are SO happy to be Paxton’s parents and we wouldn’t trade him for the world! He is already loved by so many people, and I know he will be forever thankful for your support throughout this journey.
This page is for Paxton's future obstacles. We have no way of knowing how he will develop, as the surgery is not a cure but can only improve his chances of doing things on his own. He could be in a wheelchair, or he could eventually be walking on his own. Paxton may require a shunt to disperse fluid build up on his brain, may require a lifetime of catheterization and will undergo many orthopedic, neurological, and urological appointments as Spina Bifida affects all these areas. We know he will need physical therapy for years to come and special equipment may be recommended to improve daily tasks for Paxton. This journey is going to be hard, but full of love and we are excited about what the Lord has planned for Paxton. Your prayers and support are appreciated more than you know. We believe in the power of prayer.
All our love,
Pat, Summer, & baby Paxton
This photo was taken right before the fetal surgery started! We were SO nervous!
**********************************************************
We went to the doctor for our regular anatomy ultrasound. It was so much fun, we got to see every inch of little Paxton. Pat thought something was weird when we left (judging by the way the ladies were acting), but I thought nothing of it. A few hours later, my OBGYN called and said that I needed to come back for a blood test (Harmony) that the radiologist found a cyst on Paxton’s back that could be Spina Bifida. I knew the name was bad, but I hadn’t studied it since college.
Our OBGYN referred us to a Specialist in Tupelo, Dr. Brewer. We went there the very next day and he confirmed that Paxton did have a lesion on his back that is Spina Bifida. On day 25 of conception, Paxton’s spine didn’t close completely leaving him with an opening, or a cyst. In this cyst is parts of the spinal fluid and nerves. Our lesion seems to start at L2 (L= lumbar, a little above the belt area) and stretches to S4 (S= sacral, butt area). We had a pretty big lesion on our hands. This could cause paralysis of the legs, trouble controlling bowl and bladder, and a struggle walking. Although these are typical things that doctors see in Spina Bifida patients, many of the patients walk with assistance, walk with no assistance, have fully functioning bowl and bladders and never see a wheelchair. Brain function for Paxton is normal, he will be able to carry on a full conversation, and have a normal IQ. As of now, we have NO IDEA where Paxton will fall in this spectrum, but I do know that we will do EVERYTHING we can for this sweet baby. So, Dr. Brewer referred us to LeBonheur in Memphis where I would have to deliver by c-section and Paxton would go straight to surgery to fix this cyst.
We went to LeBonheur the following Wednesday, and they too confirmed that Paxton has Spina Bifida. The good news is that every place we go, the ultrasound technicians RAVE about how good everything else looks (heart and other organs). Dr. Samson, the neurosurgeon, said that he thought we had a secluded Spina Bifida case and that he can see no other issues (praise the Lord). My awesome husband researched everything there was to know about Spina Bifida and found an in-utero surgery to somewhat stop the progression of the damaging of the nerves. The surgery would be performed at 24 weeks. Pat definitely had us prepared to talk to a neurosurgeon and be able to understand everything that he was saying. The in-utero surgery would give Paxton a better chance of walking and being able to control bowl and bladder. But, the surgery is NOT a “fix-all.” As Dr. Samson was talking, Pat and I were shaking our heads up and down and I was thinking, “Tell me something I don’t know.” (I’m not knocking Dr. Samson at all, I mean he’s brilliant! He just didn’t know that I have a smartie on my hands, too!) So, as far as Dr. Samson could see, he thought we were candidates for the surgery and he referred us to Vanderbilt Hospital and CHOP (Children’s Hospital of Penn).
After researching and contacting both hospitals, they seemed to be pretty comparable so we went with Vandy because it was closer to home. After talking with Vandy for 2 days, they informed us that their neurosurgeon would be out of town the week that we should have had our surgery (week 24), but it wouldn’t make “that much” difference if we waited until he got back into town. Needless to say, this didn’t settle well with Pat and I because we knew, from our own research, that the sooner the better, so he contacts CHOP and gets us in a week earlier, because to us “that much difference,” is still going to be a difference.
The surgery was scheduled for Wednesday, February 25th. We got to CHOP on Tuesday the 17th for meetings and tests to make sure we were candidates for the surgery. We had a two-day consultation starting Friday and day 2 was on Monday. This was very extensive and we understood that we “looked good on paper,” but could get up there and they might deny us for the surgery if they didn’t like even a single thing (the criteria is very extensive). The qualifications for this type of procedure are very strict, and many women get turned down. We were so thankful for everything to fall into place for us to have the surgery.
Wednesday finally got here and surgery started at 7:30. Paxton's lesion was successfully closed and everything went just as planned. After surgery, we had a four day stay at the hospital and then we were transfered to an apartment-like home associated with the hospital here in Philadelphia. We were there at the apartment for two weeks and are now in a room at the Ronald McDonald house in Philladelphia. The remainder of the pregnancy will be spent here with weekly check-ins. We're looking at the average delivery date at 35 weeks due to the surgery. Paxton will be spending some time in the NICU after he is delivered by c-section.
At this point, we are asking for prayers that Paxton stays all nestled in my tummy until at least 35 weeks! You can add us to as many prayer lists as you can think of. Also, we don’t want to hear “I’m sorry,” because we are so not sorry for this at all. We know that it is going to be difficult, but God gave us Paxton this way for a reason. He does not make mistakes and Paxton went straight through the hand of God before He gave him to us. He fits perfectly into our family already (with Pat being a physical therapist), and we can see God’s plan playing out in our lives already. We may not know now, a year from now, or in this lifetime why this happened to Paxton, but we completely trust God’s plan for our lives. We are SO happy to be Paxton’s parents and we wouldn’t trade him for the world! He is already loved by so many people, and I know he will be forever thankful for your support throughout this journey.
This page is for Paxton's future obstacles. We have no way of knowing how he will develop, as the surgery is not a cure but can only improve his chances of doing things on his own. He could be in a wheelchair, or he could eventually be walking on his own. Paxton may require a shunt to disperse fluid build up on his brain, may require a lifetime of catheterization and will undergo many orthopedic, neurological, and urological appointments as Spina Bifida affects all these areas. We know he will need physical therapy for years to come and special equipment may be recommended to improve daily tasks for Paxton. This journey is going to be hard, but full of love and we are excited about what the Lord has planned for Paxton. Your prayers and support are appreciated more than you know. We believe in the power of prayer.
All our love,
Pat, Summer, & baby Paxton
This photo was taken right before the fetal surgery started! We were SO nervous!Organizer
Chelsea Mitchell
Organizer
Harvest, AL