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.

Avery's Journey:

• Avery's journey - part 1
• Avery's journey - part 2
• Avery's journey - part 3
• Avery's journey - part 4
• Avery's journey - part 5
• Avery's journey - part 6
• Avery's journey - part 7
• Avery's journey - part 8
• Avery's journey - part 9

Avery's Journey:

• Avery's story - part 1
• Avery's story - part 2
• Avery's story - part 3
• Avery's story - part 4
• Avery's story - part 5
• Avery's journey - part 6
• Avery's journey - part 7

Her day begins bright and early around 7 a.m. with cuddles from Mommy and then it’s time for her bottle feeding at 8. Other activities for the morning include a visit from the respiratory therapist (RT) for her breathing treatment and morning “massage.” Her “massage” is part of her chest physiotherapy where they use an oxygen mask to firmly pat her on her chest and back to help expand her lungs and break up any mucus she may have. This is one of Avery’s favorite parts of the day. We love to watch her as she lies in her bed on her stomach and dozes off to sleep as the RTs work their magic.

She may also get a visit from occupational or physical therapy for a morning workout where they work on fun things like learning to put her feet in her mouth and building her core strength to help her learn to roll over and sit up. They also have taught us about infant massage and given us stretches we can do with Avery to help her with her flexibility.

After her morning workout, she has likely worked up an appetite so it’s time to eat again. This time, a speech pathologist may come to give Avery her bottle. Learning to eat after 6 months is tough, so a speech pathologist is working with us on what bottles and nipples to use, positions to try when feeding her and different combinations of breast milk and formula to use. All of these things play an important factor in helping Avery to swallow efficiently and effectively and not having her food go down the “wrong way” which can cause aspiration and an infection in her lungs. We are about to introduce her to solid foods which will be another fun adventure!

Once she’s done eating, it’s usually time for a visit from Daddy, where she likes to squeeze in her afternoon nap on his lap. All the activity from the morning often wears her out for a few hours. She is, after all, a baby who needs her rest so she can grow healthy, new lung tissue.

In the afternoon, she may get a visit from the Child Life specialist for some “smile therapy” where we work on coaxing a smile out of her or arts and crafts activities with her footprints. The music therapist may come by to sing and play music while Avery works on her babbling.

Interspersed throughout this busy day of therapy visits, eating, naps and playtime, she also receives countless visits from the NICU staff and our family, all stopping by to see her outfit of the day and get an update on how she’s doing.

The late afternoon and early evening is reserved for family time where she plays on her play mat, works on tummy time or hangs out in her Bumbo® or exersaucer. By the time Shawn and I are ready to go home and sleep, Avery is usually asleep, worn out from all of the day’s activities. After all, she has to get a good night sleep so she can wake up and do it all over again the next day.

Related links:

• Avery's story - part 1
• Avery's story - part 2
• Avery's story - part 3
• Avery's story - part 4
• Avery's story - part 5
• Avery's journey - part 6