Fort Worth, Texas,
20
March
2015
|
10:48 AM
America/Chicago

Avery turns 1!

Avery's journey (part 10) A Cook Children’s employee documents her daughter's time in the NICU

How is it possible that Avery is 1? In some ways, it seems like she was just born and in others, it feels like she’s lived such a big life, she should already be a teenager!

We’ve been through so much already in her young life and many of you reading this have followed her story since her birth. I thought this would be a good time to provide an update. “So, how is Avery doing?” A question my husband, Shawn, and I get on a daily basis and we’re often not sure how to answer. Avery is doing well and is a very happy and easy-going baby. She is still on oxygen and will be for a while. And she still eats primarily through her G-button (feeding tube). She continues to make progress but at her own pace. Some people take baby steps; we take micro preemie steps.

One of the hardest parts about being home is that we no longer have a medical team that monitors her daily. I got so used to asking her nurses, therapists and doctors about what was considered “normal” for micro preemies and what wasn’t. Now it’s our job to decide whether something is worth calling a doctor about.

As time goes on and we continue to deal with new issues related to her prematurity, I am developing new coping mechanisms. Some are more productive than others. One has to do with planning her first birthday party.

As I began thinking about her first birthday, it became an obsession for me to create a perfect “Pinterest” worthy birthday party. For those who know me, this is laughable. I’ve never been one who has the patience to attempt anything like most of the “crafty” things you see on Pinterest. But it became my mission. After coming home several nights in a row to me “crafting,” I think Shawn was starting to worry about me!

After thinking about it one night (while crafting), I realized it was my on-going guilt manifesting itself in a new way. Maybe she would look back to pictures of that day and not blame me for her early entry into the world because of how fabulous the birthday party was. If I could make things pretty like a picture then it would fix everything else. I think it comes down to the fact that this was something tangible that I could control whereas I can’t control how quickly she gets better.

In thinking about other ways to celebrate Avery’s birthday, we also decided to do something special to give back to the place that saved Avery’s life – the Cook Children’s NICU. Plain and simple, without the NICU, we wouldn’t have a birthday to celebrate. And so, our family made a donation to the NICU that allows us to have a plaque with Avery’s name on it outside of her room. We used to joke that she deserved a plaque outside that room because she stayed there so long. Now, thanks to my very generous parents, she has one. It’s my hope that her story will inspire and provide hope for others who come to stay in that room.

And so, while I can’t control how quickly Avery gets better, I can control how I use our experience to others who have similar journeys. Thank you all for following Avery on her’s.

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Kerrie Sutton
07
July
2017
Kelly,
I don't know you personally, but I want you to know I gave birth to a 28 wk premie, Jennifer in 1978. They thought she wouldn't survive. She is now 39 years old. It was a long journey and I had those guilt feelings you talk about. Then God gave me a position in NICU and I began the healing process. God has His own reasons, about why things happen. Only He knows. Due to the process with Jennifer, I was able to help other Mothers going through the same thing. God has Jennifer in His hands. She never meets a stranger and sings Gods praises to all. She is a JOY. I am so glad I get to be a part of her life.