My mom gave me a ceramic plaque with this quote on it several years ago when I was going through a tough time. Over the years, it’s amazing how many times this quote has rung true. Plan B has meant … A divorce. Being laid off. A second marriage. Fertility treatments. A baby in the NICU. A baby at home on oxygen. A toddler who doesn’t yet speak or like to eat. And now, an autism spectrum diagnosis for Avery.

We’ve known for a while that Avery’s development is delayed. It hasn’t been any big surprise to anyone considering her early entry into this world and her 234 day NICU stay. We just kept saying “she’ll get there on her own time.” And she has made progress. HUGE progress. In a year, she’s gone from not even sitting up to sitting, crawling, walking, running and being off oxygen! She’s babbling more, making more eye contact and overall becoming more interactive.

But still, my mommy instincts have told me for a while that something else was going on. As much as I wanted to just call her development delayed, most of the time Avery is perfectly happy to exist in her own little world without the need to interact or connect with others. And we know that this is not “normal” when it comes to development.

After mentioning this to a doctor at our last NICU follow up clinic visit, we received a referral to the Child Study Center. And even though I had my own suspicions about an autism diagnosis, I wasn’t ready for a doctor to agree with me. And so I sat on the referral for three months. I kept making excuses. It was too early. Her behavior is just a product of the fact that she was in the NICU for so long. But it became clear to me after mentioning the referral to several of her therapists that others had concerns as well. I just kept hearing “It can’t hurt to go and see what they say.”

And so, I filled out the  application, mailed it in and got super lucky when the Child Study Center had a cancellation and got us in, all within a month of mailing the application in. Our appointment took almost three hours and at the end we walked out with an autism diagnosis and a recommendation for ABA therapy.

Avery’s diagnosis is different than a full-term child receiving an autism diagnosis. The doctor kept emphasizing that Avery’s primary diagnosis will always be prematurity. Because she was born so small and her brain had to develop outside the womb and had periods where it went with little to no oxygen, it developed differently and quite honestly, it has some damage. It pains me to type that. The good news is that Avery is young and she continues to progress.

So many things are running through my head as I try to process this new diagnosis. The one thing that keeps coming up is that I am so glad that God chose me to be Avery’s mom and I’m so grateful that I came to work at Cook Children’s, which has opened my eyes to all the resources that exist in our area. I’m grateful that Avery has given me the strength, passion and love to continue to fight for her and make sure she has the best life we’re able to give her.

We are still figuring out exactly what her diagnosis means and how it’s going to change things. I learned through our NICU experience that writing is a powerful coping mechanism for me. I’m not looking for attention, sympathy, etc., it’s truly just a way for me to document and work through my feelings.

Am I sad? Yes, absolutely. For once in her life, I just want Avery to catch a break. I just want her to live a “normal” childhood, whatever that means…But for the time being, that’s not our path, that’s not her destiny and that’s OK.

Previous articles documenting 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
• Avery's journey - part 10

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’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

For the last 234 days, the Cook Children’s NICU had been our home and the nurses and doctors had become our family. I couldn’t believe that after all this time they actually trusted US to take Avery home and take care of her all by ourselves. I wasn’t sure we were ready.

Well, it turns out, we were ready. Have there been times when I secretly wanted to be back in the NICU, “co-parenting” alongside nurses and doctors who all have much more experience in taking care of babies like Avery than we do? Absolutely! But, we powered through the first few scary and lonely days and nights and are slowly getting into a groove. We are finally those sleep deprived parents we longed to be for so long. I spend most days with no makeup and covered in spit up and I’ve never been happier in my entire life.

Perhaps the hardest part about being home with Avery is the realization that this journey isn’t over and her early entry into this world will continue to make things hard for her over the next few years. It’s not as if something magical happened when we drove away from Cook Children’s to erase her medical history of the past 7 and a half months.

We have many doctors’ visits in our future. We have weekly in-home visits from nurses and physical and occupational therapists. And we are still on oxygen and have a G button. But, we’re home and Avery is doing great! I’ve had to throw out all the old preconceived ideas I had about being a mom and accept that this is what’s it’s like to be Avery’s mom.

As we look forward to celebrating our first Thanksgiving at home as a family, there are so many things to be thankful for. Being in the NICU for so long taught us to be thankful for the little things. For example, we’ve celebrated so many firsts since being home: Avery’s first car ride, bath, walk in the park, even something as mundane as her first trip to the pediatrician didn’t go unnoticed or unrecognized.

I’ve said it before and I’ll continue to say it, this has been the hardest thing I’ve ever had to go through in my life, but I wouldn’t change it for the world because it has made me a better person. It has made me Avery strong.

Avery, Shawn and I want to wish everyone a very happy Thanksgiving! We are so grateful to everyone who has followed our journey and been so supportive of us. Whether we know you personally or you’ve just followed our blogs to keep up with Avery’s progress, it is just so incredible to know of the many people we’ve had cheering us on. Hopefully, we’ve made you Avery strong as well!

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:

• 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

We have now surpassed our 100^th day in the NICU. 100 days. Avery’s due date has come and gone. It feels like it’s time to go home. I’m ready. Shawn’s ready. Avery’s room is ready. But our sweet baby girl is not able to breathe on her own just yet. And so we wait.

Throughout this journey we have been through a lot more critical situations than our current one. We’ve dealt with pneumonia, watched our daughter turn blue from not breathing, discussed heart surgery and taken calls from doctors in the middle of the night. Things with Avery are better now than ever. I get to hold and cuddle her whenever I want. She is very alert and interactive and showing more of her personality every day. So why is this whole situation getting to me now?

Avery’s doctor told me once that our bodies are much better equipped to deal with what he called “critical” stress versus chronic, long-term stress. This is the only explanation I have for feeling the way I do right now. It was the “fight or flight” mentality that kept our adrenaline going and allowed us to deal with the critical intensity of the first few months of Avery’s stay. In those early days, we were just taking it a day at a time while Avery was fighting for her life. Now, Avery is stable and the long-term stress of being in the NICU for so long has set in.

It was around Avery’s due date that I started to feel this way. Up until that point, I felt like we were going on borrowed time, but now she is officially supposed to be here so it’s time to go home. I would trade the stress we’re feeling with the stress of a new parent with a “normal” baby in a heartbeat. I’m not diminishing that stress at all, I know it’s hard but it has to feel differently than the stress of having your baby in the NICU. 

We seem to be stuck in limbo right now and are still waiting to officially start our lives as new parents. While we wait for Avery to get better, life has had to go back to normal but it doesn’t feel normal at all. All of the daily activities like going to work, doing laundry, grocery shopping still have to go on but it doesn’t seem fair.

I have so many different emotions in a given day: anger, frustration, sadness, happiness, the list goes on.

Our nurses have become some of my best friends because they seem to understand our situation the best. They have seen families in the same situation and are able to reassure me that the feelings I have are completely normal. However normal these feelings are, I’m just ready for them to go away. I miss the old Kelly and I’m sure Shawn does too. Glimpses of her pop up unexpectedly and it reassures me that I will get back to my old self eventually.

I’m hesitant to put these feelings down on paper and even more hesitant to share them with the world. My hope is that it might validate the feelings that another parent is feeling or has felt and will help them to feel less alone.

I just wish I could close my eyes and fast forward until the day that we put Avery in her car seat and bring her home.

Until then, we wait…

Related links:

• Avery's story - part 1
• Avery's story - part 2
• Avery's story - part 3
• Avery's story - part 4