Woodson’s Story

Site created on September 7, 2022

Welcome to Woodson's CaringBridge page. We are using it to keep family and friends updated in one place. We appreciate your support, words of hope and encouragement, and prayers for our perfect boy.  

Woodson was diagnosed with hypoplastic left heart syndrome (HLHS) in May 2022 after our 22-week anatomy scan revealed his heart had not fully formed. HLHS is a type of single ventricle defect (SVD) and considered one of the most severe congenital heart defects (CHD). Essentially, the left side of the heart is extremely underdeveloped or non-existent, aka hypoplastic. The heart's left side has the job of pumping oxygenated blood into the aorta, the large artery that carries blood to the body. In Woodson's case, he has HLHS with aortic and mitral valve atresia, meaning those valves did not develop at all. The cause of HLHS still unknown, however the treatment and surgery options have advanced greatly over the last 30 years. Sisters by Heart has a great information page about HLHS if you wish to learn more about Woodson's diagnosis and possible steps in his journey https://www.sistersbyheart.org/all-about-hlhs. 

We started our journey navigating HLHS with a referral to the specialists at Barnes Jewish Hospital and St. Louis Children's. After a somewhat turbulent pregnancy and a lot of uncertainty surrounding if we would make it to full term due to some of mom's complications, Woodson arrived safely (and full term!) at the beginning of September. He was a very healthy 7lb 12oz at birth and loves to be snuggled. Mom, Dad, and big sister are already in awe of Woodson's fighting spirit and love that he is the final piece to our little family. 

Time and testing helped Woodson’s medical team determine that he was not a candidate for the three surgeries typically lined up for single ventricle kids. Instead, Woodson was placed on a ventricular assist device, aka VAD, to support him while he waited for a heart transplant. The VAD is commonly referred to as the bridge to transplant and it is a device we are so grateful for. It allowed our baby boy a measure of normalcy while he fought everyday to get stronger. We received Woodson's perfect heart on March 13, 2023 after a heroic angel and his or her family made a selfless choice to donate life. 

Newest Update

May 28, 2023

Journal entry by Lindsey Bobbitt —

(L) We have been home for 4 weeks + 3 days and what a 4 weeks + 3 days it has been! Lots of tears (mostly happy), smiles, laundry, organizing, snuggles, and very little sleep for mom & dad 😁.  We hope to get back into a regular cadence of posting updates. Home life has been an adjustment for sure, but an adjustment we feel so incredibly blessed to experience. Some highlights: 

  • Daily gratitude to God for all He has done for our family and continues to do. The greatness of what He has done is almost too much to articulate, but I know it will be a beautiful testament one day.
  • Daily gratitude for our donor, donor’s family, and the teams in STL. We wouldn’t be here without these people.  
  • Woodson LOVES getting uninterrupted sleep at home
  • He is still a super smiley and happy guy, still growls but his voice gets stronger every day, loves to babble, has become ticklish, and will giggle
  • He loves to clap & chewing on hands continues to be his favorite
  • He has 4 teeth with 2 more just about to cut through
  • We have started “messy play” where we put him in his high chair with purée on his tray for him to splash in and get tastes of food. It’s all about him making positive associations for hand to mouth and you don’t just get gross medicine. Food can be yummy! 
  • Big sister still loves him more than anyone and gets very sad if he’s still sleeping when he has to leave for school. She can make him smile quicker than anyone and she is always asking how she can help. 
  • 3 trips to STL since we have been home + lots of appointments in Springfield
  • Has been to both grandparents’ houses, met all of his living great grandparents, met a couple of our close friends, and was able to meet his some extended family (MANY more still to go 🤪)
  • Woodson’s biopsies, scans, lab tests, and evaluations continue to be so positive! The team in STL says he is thriving at home & we agree! He is such a joy to be around and has made so many leaps in our month home. 
  • Evaluations here and in STL for therapy treatment plans - speech, OT, PT. Woodson will be 9 months next week and his estimated physical capabilities are similar to that of a 4-5 month old. We are working really hard on building up core strength to sit up, as it is a major building block to many other milestones
  • He is LONG - 95th percentile for height and 19th percentile for weight 
  • On the subject of weight, he continues to throw up multiple times per day and it has impacted his weight gain. We are working very closely with the teams in STL to adjust his feeds and getting weight checks multiple times per week at our pediatrician’s office (we have the best pediatrician in the world ❤️) 
  • A health scare with one of our family members, our washing machine broke & had to be replaced (the new one is huge and it’s awesome), I was down for 2+ weeks with pneumonia, my car is heading back to the body shop because people/objects seem to want to hit it lately 🫠, evicted some critters that decided to move in to our house over these past months, and a few more adventures that Dusty and I just laugh about. 
  • Life outside of the hospital continues to be an adjustment for Dusty and I. We are so thankful for the resources provided to us through the Heart Center to support our well-being. One day I hope to share more about our journey and somehow provide help to families going through long term hospitalization with a medically complex child. 

Read More of the journal titled "May 28, 2023"
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