The Wilson Family

Scroll down to see updates as the Wilson family progresses in their CDH Journey! (All updates are written and given by parents with consent)

Update 11/10/24

Hello, we’re the Wilson family! We were married in 2022 and not long after we decided to start our family. After trying for quite some time and feeling discouraged that something might be wrong, we found out in April of 2024 that we were expecting our first little one. After all of our time trying, we felt it was meant to be! My pregnancy has been anything but easy. Experiencing and being diagnosed early on with HG, I have spent the majority of my days since being 5 weeks pregnant sick in bed. It’s been hard but I kept telling myself that it will all be worth it in the end. It was during our anatomy scan at 22 weeks that they found something wrong. Our son’s heart was on the right side of his body rather than the left. At the time my doctor wasn’t concerned about this but sent me to MFM to get a better look. Two weeks later at MFM they shared with us that our son had moderate LCDH, and all that would entail. I felt somewhat numb being told this news after how hard everything has already been, now adding this. We were then referred to the fetal center in Houston to get further testing and discuss whether a FETO procedure would be an option. Everything happened so quickly, within about a week we were in Houston and meeting with doctors back to back over the course of three days. We did not end up qualifying for the FETO procedure, but we were able to talk in detail with the CDH team about our son’s prognosis and what it would look like to relocate from Wylie Tx to Houston Tx for our care. We felt so much peace with the team here in Houston that we made the decision to relocate at 32 weeks. We’re now 34 weeks just awaiting our son’s arrival in December. We feel so blessed to have so many resources available to us. The Eden Calhoun grant has helped make it possible for us to make the big move and get the best care possible for our son. 

Update 11/25/24

Mom and baby are doing well, everything is holding steady in all of our scans and the doctors have had positive things to say about the growth of Forrest’s lungs and his heart! We got to have some visitors this weekend which was so helpful and encouraging when you’re so far from home, especially near the holidays! We also visited the Houston zoo and enjoyed the nice weather. Now we’re just two weeks out from our induction date and we couldn’t be more excited to meet our little guy! We’re praying for a safe and smooth delivery and the best case scenario for Forrest’s health. 

Update 12/28/24

Forrest was born on December 11th and we couldn’t be more in love! He is one tough little guy who has already been through so much. He had his repair surgery and went on ECMO shortly after, all before he was even 24 hours old. We weren’t expecting him to need ECMO at all but his little body needed a little extra help. He was on ECMO for about 4 days and was then able to come off of it. He was also recently extubated and put on cpap. He’s no longer on any pain meds or sedation so he is not liking the cpap equipment but he is making good progress on it and already weening off of it. I’m hoping in the next few days he can get off of the cpap because it’s so hard to see him so uncomfortable. We are starting to adjust to our new normal of being in and out of the NICU each day and all of the emotional highs and lows. Christmas this year was so hard being away from home, but we got the sweetest gift of being able to hold Forrest for the first time on Christmas Eve! We’re praying for our little guy to continue to improve so that we can come home soon. 

Update 3/3/25

After 76 long, up and down days, we are finally home!! We had the hope of getting to go home 2 separate times before we actually were able to. It was really hard for yet another complication/set back to arise each time just before we were set to be discharged, but we made it through. Our bubs is such a trooper. It’s been tough being back home, figuring out the g tube, and overall having a more medically fragile child, but he’s so worth it! Thank you to the Eden Calhoun foundation that made relocating a little easier. We have been so blessed on this journey and we’re praying for everyone else who’s on a similar journey now.