The Allen Family

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

We found out at 20 weeks that our son had CDH. We are originally from the northeast DFW area, but after finding out the severity of our case decided to relocate to Pasadena to be close to Memorial Hermann where we elected to do the FETO procedure. For the last few months Melanie and our 2 year old, Loki, stayed in Pasadena while I commuted back and forth to DFW to work. 

Our CDH boy, Link, was born on 1/26/24 and was placed on ECMO on 1/28/24. We aren’t sure when his repair will happen but it should be in the next few days. The grant is going to help us with housing, the commute, parking at the hospital so we can be with our boy, along with so many other things. We are eternally grateful for everyone and everything that has been done to help us during this time. 

Update 2/25/24

He spent 11 days on ECMO and had multiple surgeries including his repair and fixing an abdominal bleed. He was able to come off ECMO on February 9th and has since made wonderful progress. He spent 5 days on the ventilator, 4 days on CPAP and is now on high flow oxygen. His pulmonary stenosis and regurgitation have almost disappeared, and he is going to attempt his first feed today, the 25th. We can’t believe how wonderful he is doing and we are so thankful!

Update 3/23/24

Our little Link has been doing so wonderful! We’ve had lots of things happen since the last update. He came off all oxygen, but is on just a little bit of home oxygen here and there to help him as he needs. He got to meet his big brother and has been working on feeding too! He’s not been very good at it, but that’s totally okay with us. We have been in talks about getting a G-tube put in within the next couple of weeks. We’re not sure exactly how far after that, but we are expecting to be discharged in the next 2-3 weeks and then headed home after that! So thankful for everything that we have been blessed with! 

Update 4/26/24

It has been a crazy, but exciting month for us! Link had his procedure to get his G-tube and feeds have been going pretty well! After a little time and some practice, we were able to come home a couple of weeks ago. We will never forget all the wonderful people that this little journey of ours has brought into our lives. Link has been doing so great at home and loves being held. He also has the best big brother in the entire world and we feel so complete all being under the same roof!