Barrett’s Story

Site created on October 13, 2022

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Here’s a little info about us. Dean and i married in 2015. In 2017 we had a tiny little girl named Emma Rose. She was diagnosed with IUGR (intrauterine growth restriction) and then at 36 weeks i got preeclampsia. She was born at 36 weeks weighing in at 3 pounds 14 ounces. I was watched throughly by my OBGYN and a Maternal Fetal Medicine dr and they assured us it shouldnt happen again. but beings that they never fully knew why it had happened, they couldnt promise. Shortly after that pregnancy we found out i had a partial gene for Factor five Leiden which is a blood clotting disorder. That explained some of the problems with my first pregnancy. In 2020 we had a little boy, Connor Jack. Precautions were taken all along for the clotting and to make sure there was no IUGR. He was born at 39 weeks weighing in at 7 pounds 1 ounce. Fast forward to 2022, we found out we were expecting baby number 3. It has been rocky since the beginning of this pregnancy with having numerous scares. In September my dr asked for an extra ultrasound just to check in and make sure all was ok. On September 20 at 16 weeks, we were told that our baby had an enlarged vessel on the back of his head. The Choroid Plexus is 4 vessels that provide fluid for around the brain to keep it suspended. One of those vessels was enlarged and needed to be checked out by Maternal Fetal Medicine. The next week and a half was lots of worrying and praying but we felt like it would be ok. At almost 18 weeks, our baby showed all the signs for Spina Bifida. I was in the appointment alone, and i was asked ‘what do you want to do?’ Without a second thot i said ‘we’ll do whatever it takes. Id like to do fetal surgery’. Thus begin the weeks upon weeks of Dr.s appointments.

Newest Update

Journal entry by Dean & Tara Schmidt

Wow… what a year… a year and a few days ago i sat on the table in the OR wishing i could keep my baby safe while also wishing i could meet the little troublemaker. I wondered what he’d look like, what his personality would be. And now… here we are… Barrett had a birthday on the 22nd. We celebrated his birthday together with his birthday twin, his great grandma Schmidt. Part of the table was decorated with vintage books (a compilation of the old winnie the pooh and the collection of Beatrix Potter stories) and then beside the books i put a silver plated tea kettle full of white roses. The napkins and dessert plates were old style winnie the pooh. Barrett DEVOURED an entire cupcake! Left no crumbs😁 liked the gifts but loved the bags they came in even better. Lol hes such a little character. His personality shows more everyday. The day of his birthday he learned how to play peekaboo! He waved very diplomatically at everyone and hid behind his hands for peekaboo. Hes learned that ppl think its cute when he tips his head so he likes to tip his head waaaay over and grin with a mouthful of teeth and the twinkliest blue eyes🥰 developement wise he continues to amaze! I had never had a baby walker but i decided to get him one since it seems like i havnt had the time to spend teaching him how to move his legs to walk. He has caught on to the walker very quickly and tends to mow over small children and big ppls ankles🤨🤣 rather dangerous… lol he army crawls EVERYWHERE. He can get up on hands and knees but seems to prefer army crawling. We have started taking him with us to the chiropracter and the chiro uses the little clicker gun to stimulate the nerves on Barretts back. For the next 2-3 days after being at the chiro, he will pull himself to standing and get up on hands and knees much more! But then eventually decides thats too much work. When youre the third child and greatly catered to by your siblings, theres not much need to go get something. You just wait a bit and big sis will bring you whatever you need🤪 he can be veeery laid back in some ways and yet when its time to sit in church… lets just say, Barrett and sitting still do not go together😆 Mom becomes a jungle gym and everyone ends up sweaty and exhausted by the time church is over. Lol As for the medical side of things… the week before his bday we did a few tests. Another urodynamic and renal ultrasound to check if the oxybutynin is at the right dose and then got xrays of his back and pelvis for scoliosis. I asked for copies of his xrays to show his chiro and i was amazed at how straight his back is! My xrays look worse then his😂 his chiropractor could point out which vertebrae had been corrected and how he knew based on xrays alone that he has spina bifida. Was super neat to see and he was thrilled to see the picture! Our chiros wife has spina bifida occulta (the mildest form of sb. She had no idea she even had sb til she married him!) so he has been very invested in Barrett… Anyways, we feel pretty confidant that ortho will be happy with what the scans show. (Spoiler alert: they think he looks great!🥳) Our chiro had nothing of concern and just was amazed how straight everything looked. I honestly think Barrett has better posture then my other kids. Lol his renal ultrasounds came back PERFECT🤩 he had signs of his kidneys dilating a tad from his meds not being strong enough last time they did scans. By this time there was NO dilation at all so it seemed like we had the right meds! However, his bladder is still putting on more pressure then necessary so we opted to up his dosage. Were hoping thats the trick!🙏🏼 so all in all, we get to take home a chonky lil goober and watch him grow! The first 6 years of life, bodies change so drastically. They say for now he has no sign of scoliosis or hip dyslpasia but that doesnt mean he never will. Some of those things happen or show up as they are growing. I asked if the swing walk that sb kids sometimes get would show up now already. She said yes it does show up. Well the good news is, Barrett has no sign of that! But once again, not saying it wont show up. The urologist told us he has met four spina bifida patients that perform perfectly normal medically and hes really hoping that Barrett will be patient number 5. 🥰 there will definitely be some things in life that he may take more time to do developmentally but he will eventually get there. He will most likely always be on some form of bladder meds because neurogenic bladders cant be reset to ‘think right’. He’ll always need a chill pill for his bladder.🤪 his quality of life tho is wonderful. He isnt suffering or hurting in any way, he’ll live a long full life. I told Dean abit ago that i feel incredibly blessed to have a child like Barrett. I used to struggle to accept the extra medical stuff. But God needed Barrett to be who he is so He could show so so many people just how much He loves and cares for us. So what if Barrett isnt perfectly healed? Hes living proof that God loves all the tiny things. 👶🏻 We’ll never know this side of Heaven just why He chose us for Barrett. But Barrett has brot hope and cheer. I dont think we’ll ever know just how far and wide his life touched. 🤍 thank you for following our journey. So many of you have picked us up and carried us in our times of hard things, and we want to be there for any and all of you. Feel free to reach out at any time! I may not post on here as much beings that things arent changing as much. But rest assured i’ll keep you all updated as he reaches his milestones.😉 have a wonderful week!
Love from the Schmidts🥰
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