The Wright Family

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

Update 4/1

At our 36 week ultrasound we learned that our baby boy, Oliver, had CDH. We were referred to specialists in our area who were confident they could treat our son based on what was seen on ultrasound. The specialists ordered an MRI on Oliver and at almost 38 weeks pregnant we received devastating news - that Oliver’s condition was much more severe and our specialists were no longer confident in the outcome. 

I refused to accept that one scan would be so drastically different from our previous ultrasounds, so I called Dr. Kays’ office in Florida hoping to arrange a consult with our doctors to get some clarity. 

Dr. Kays’ office instead offered for our family to come to him for treatment in Florida, so at 38 weeks pregnant and on 48 hours notice, our family relocated to Florida where we moved into the Ronald McDonald House.  

Our Oliver was born 3 days later and placed on a ventilator. He remained stable and had his hernia repair at one week old and has still been remarkably stable and is currently working towards weaning off of the vent. 

Receiving the ECCF monthly grant means so much to our family. What it is helping with most is to allow us to have a rental car while we are living in Florida, which makes getting around with our toddler and her car seat possible! We are so thankful to ECCF and their generous donors. 

Update 4/22

Since our last update Oliver has successfully weaned off of both the ventilator and cpap and is on wall oxygen. The transition off of the ventilator marked a huge milestone because we were finally able to hold our baby boy for the first time. 

Our two year old daughter Thea also has gotten to get a little taste of what being a big sister is like. She’s been able to snuggle with Oliver, give him his pacifier, and help with bottles. These moments seeing them together are ones Andrew and I will cherish forever. 

Oliver also has started taking bottles since our last update and is doing well overall learning to eat. His progress eating hasn’t been linear like his progress weaning off of respiratory support was (he recently had to go back on IV nutrition after weaning off of it), but Andrew and I are trying to stay encouraged and keep in mind that this is a slow process that usually has ups and downs along the way. No matter what, we are so proud of Oliver and the hard work he is doing.

Thank you again to ECCF for helping sustain our family financially during this time. 

Update 5/23

I’ll write out an update later, but we are discharged and home!! I’m a SAHM mom of a two year old and newborn now, so it may be a couple days before I have the bandwidth to sit down, write, and choose photos, but I will send an update!!

Update 12/5

Oliver was discharged after 40 days in the CDH unit! After discharge our little family of 4 spent moved out of the Ronald McDonald House and stayed for about two weeks at an AirBnB waiting to see Dr. Kay’s to get a clean bill of health to go home. The ECCF grant helped tremendously with the cost of staying at the AirBnB during our last bit of time in Florida. 

Oliver’s discharge appointment went so well and we flew home with our baby boy the next day. 

Our first weekend home was Mother’s Day weekend, and there was no better way to spend my Mother’s Day than at HOME with my beautiful, amazing daughter and my STRONG, HEALTHY baby boy. Oliver was actually dedicated in lurch church that first Sunday we were home, and he received a standing ovation from our congregation because he finally was home and healthy. 

Shortly arriving home, we started room air trials during the day and Oliver was able to be off of daytime oxygen completely fairly quickly. Nighttime room are trials are next!

Thank you again to ECCF, this month’s grant helped significantly with our Airbnb after discharge.