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

It’s been a long time since my last blog post. Honestly, I just haven’t really had anything new to say. I was hopeful that my next post might talk about how we were starting to bottle feed Avery or some of the other “milestones” that we have to achieve to get closer to going home. But unfortunately, that update is yet to be written.

Since the beginning, we have talked about the importance of taking it one day at a time, but up until last week I don’t think I had been. It is my tendency to be two steps ahead of whatever is going on in my life, whether it’s work or personal. In most cases, this has been a good thing. I like to make plans and be prepared for whatever is next. However, in this situation, that way of thinking can be dangerous. On any given day, there are far too many options for how a day might go. There are too many potential next steps, both good and bad. Trying to prepare for all of those will drive you insane.

For me, part of being “prepared” is the need to know what the worst case scenario with Avery could be. In Avery’s case, our worst case scenario is ending up with a tracheostomy and a ventilator. They don’t think it would be permanent, but no one knows how long she would need to have it. I have been told that it’s not as bad as it sounds and, of course, we will deal with it if that’s what Avery needs.

Up until last week, things had really been pretty uneventful. We had slowly been weaning down Avery’s oxygen support until it was low enough so she could start working on bottle feeding. We were literally days from this when everything changed. Her lungs had been tolerating the changes we were making, but just barely. It seemed to me like we were always waiting for the other shoe to drop. And then, it did.

Without going into too much medical speak, Avery’s lungs took a turn for the worst and within just a few days, we were close to facing our worst case scenario. And then, just as quickly, thanks to some powerful steroids, things were better again. But what happened in those few days has changed me. I think for the better.

Now, I am not just repeating what I’ve heard from so many others: “Take it one day at a time.” “Celebrate the good.” “On a bad day, hope for a better one tomorrow.” “Enjoy the moment.” I am actually living that way.

I imagine this is the way that any parent of a chronically ill child must cope. It’s hard to believe that it took almost six months for me to really learn this lesson. This last up and down roller coaster ride helped me figure out that living in fear of the worst case scenario is no way to live. For now, thoughts of Avery needing a tracheostomy creep into my mind occasionally, but I know that if I focus on them too much, I’ll miss out on all the good days that Avery is having. And she does have a lot of good days.

P.S. Just as I hit send on this blog entry, I got a phone call from the nurse telling me they were going to go ahead and try bottle feeding for the first time. Further proof that you REALLY never know how any given day in the NICU might play out.

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

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