We’ll start with her lungs. Our pulmonologist has us taking her off oxygen while we’re at home and just seeing how long she can maintain her oxygen saturation levels. Our record so far is eight hours without oxygen, which is very exciting for us! When we first came home, she could barely go five minutes. We see Avery’s pulmonologist tomorrow and I’m hoping he’s pleased with her progress. One hour at a time is our mantra! It would be great to be off by her second birthday. But by now, I should know better than to make statements like that.

Onto her heart. As we wean off the oxygen, we’ll have to watch her pulmonary hypertension and make sure it doesn’t put any added stress on her heart. The hope is that as her lungs get better so will her heart and we can wean her off her medication.

Next up is her tummy. I’m happy to report that her reflux is much better and we’re down to her throwing up just 1-2 times a week (HUGE improvement!). And she’s finally starting to gain some weight. But, between having a tube down her throat for her first three months of life and severe reflux, she isn’t the biggest fan of eating.

That leads us to the three T's – physical therapy, occupational therapy and speech therapy - which Avery receives weekly. In speech therapy, we are working on her speech and her eating. I’m happy to report that she’s making big improvements in both. She’s babbling lots and we’re down to using her G- button once a day (down from six)!

For OT, we’re working on things like stacking boxes, putting things in containers and clapping. This is one of those areas where it’s tough for us to tell the difference between what Avery can and can’t do and what she WON’T do. Man, she has such a strong personality already!

We’ve probably made the biggest improvement with her gross motor skills (PT). She’s officially walking! But, she turns her left leg and foot out a little too much because of some weakness in her hip and quads so we’re in the process of getting her fitted for orthotics ... Nothing is ever easy.

Finally, her “emotional” development …Gone are the days in the NICU of five people in a room trying to coax just the tiniest smile out of her. Fast forward a year and we’ve got this fiery little 19 month old who walks around the room like she owns the place, blowing raspberries, “talking” and chasing after our kitties.

Avery Leigh Wooley, we are SO proud to be your parents and can’t wait to see what the next year has in store for you!

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
• Avery's journey - part 8
• Avery's journey - part 9

About the author

Kelly Wooley is a Marketing specialist at Cook Children’s. She is writing a series of blogs chronicling the birth of her daughter Avery and their time spent in the Neonatal Intensive Care Unit.

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

So much has happened in this first month. We’ve been through what the nurses and doctors call the “honeymoon phase” when things are going well and are relatively drama free. And then, the “roller coaster ride,” as everyone refers to it, began. There will be a few good days in a row that really get your spirits up and then you’ll come back the next day and, like a slap in the face, you are met with unsettling news and faced with setbacks. All that progress your child has made is erased and you feel like you’re starting over in some cases.

In this first month, we’ve been through things that no new parent wants to experience. We’ve learned that Avery has a congenital heart defect called a patent ductus arterius (PDA) and she could possibly need surgery. We’ve witnessed her being “bagged” or resuscitated more times than I care to count. I’ve watched her get a catheter because they thought she might have a urinary tract infection. She’s had multiple blood transfusions. Poor baby has fought off pneumonia and continues to get help breathing with the support of a ventilator.

In addition to those scary things, we’ve also hit some key milestones. She is now over 2 pounds! She has grown an inch and a half. She has been cleared of brain bleeds. She is tolerating her feeds and is producing dirty diapers regularly. Poop is something that is highly celebrated around here! I never knew I would be so excited to see my daughter poop, but it’s a great sign that her digestive system is working properly.

It’s hard to actually feel like a parent in a situation like this when you have a team of doctors and nurses doing most of the work for your child. Right now, I cherish the simple things like taking her temperature and changing her diaper because those are actually things I can do for her by myself. I got to help give her a bath the other day and it was the most I’ve been able to touch her since she’s been born. It was the best day I’ve had in weeks.

And even though we have very limited interaction with her right now, we are getting to know our daughter. Things we’ve learned so far: She is a feisty little thing. She doesn’t hesitate to push the nurses away when they are doing something she doesn’t like. She doesn’t like to sleep very much. She is not very good at being still. It often looks like she’s having her own little dance party in her incubator, especially when she lies on her tummy and shakes her little booty.

The more I learn, the more I am intrigued by her and I can’t wait to learn more.

You can read part one of Avery's Journey here.