Our Expected but Blessed EA/TEF Journey is guest blogger Kristen Horton’s follow up to Our Unexpected but Blessed EA/TEF Journey which she wrote for EA/TEF Awareness Month in 2018. Please welcome Kristen back to Different Dream and read on for a delightful update about the past 12 months in the Horton household.

Our Expected but Blessed EA/TEF Journey: A Year Later

The Final Dilations

Hard to believe that it was a little over a year ago that I wrote my first blog about our EA/TEF journey with my son Christopher. At the time I wrote that post, we had already gone through the repair, NICU stay, 5 dilations, and one day I had to perform CPR on him at 6 weeks old. After January 2018, he had 5 additional dilations for a grand total of 10 dilations in about four months, but has not had any more since April 2018. The most exciting and emotional day since performing CPR on him was hearing the surgeon say “We don’t need to see him except for an office visit in 6 months.”

Starting Daycare

Another exciting time for us was for Christopher to go to daycare! He started around 6 months old and did so great! To this day, he loves to go and play with his friends. I was a wreck but it was one of the best things for him. While we did battle a couple colds, we have been so blessed that he was had relatively good health even while attending daycare with tons of germs!  He turned one year old in September and moved up classes where he runs around, plays, and eats like a champ.

The “Stuckie” and the Esophagram

The only time we ran into an issue was when he graduated to the next daycare classroom because they feed them items from a menu. Unbeknownst to me, the menu had hard cereal for some breakfasts and he got a “stuckie” one Friday, right after a glowing report from the surgeon to taper off his reflux medication. However, multiple after hours calls to the surgeon and an ER visit later, he has to not only stay on reflux medication indefinitely and drink Enfragrow instead of whole milk, but we are currently on a modified diet of pureed/soft foods. This was the first time I felt uneasy since he had his final dilation in April. We did an esophagram to check for a stricture, but he doesn’t have one that requires more surgery at this time. Other than that one incident, this year has been amazing with family and friends and absolutely flown by!

One Final Piece of Advice

I just want to make sure that the parents of EA/TEF and other birth defects know that it gets better!  While it’s so hard to look past the next surgery or next struggle, you will make it through and be even better at loving your child and cherishing life. However, never grow complacent about trusting that gut for when you need to advocate for your child. I believe I did allow myself to get lulled into a false sense of security that Christopher was “all better,” when I needed to continue to be vigilant about his food items and reflux back in October and November. But, you won’t be perfect and can’t beat yourself up over mistakes. Learn from them and continue to be the best parent you can be.

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