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 due date was supposed to be June 20 but because of my high blood pressure, we knew that I would be induced before my due date. So I knew I would have this year’s Father’s Day gift covered; I would have just given birth to a beautiful baby girl making for the best present ever! Well, obviously things didn’t go as planned and Shawn’s Father’s Day gift came three and a half months early.

Since Father’s Day is this Sunday, this blog is dedicated to all the NICU dads out there. I want you to know how important you are. I’ve seen how everyone is always focused on mom and baby, especially if it was mom's health condition that caused the early delivery but dad often gets neglected. Well, I can honestly say that Shawn is the reason people think that I’m handling this situation so well. Of course, every relationship dynamic is different, but for us, Shawn is the glue that holds our family together. 

He has truly embraced his new role as Avery’s daddy and shown so much strength throughout this whole experience. He stays positive even in our darkest days and truly is my rock. He can always find something to be positive about, no matter what is going on with Avery at the moment.

Once Avery was brought into this world, Shawn walked with the Cook Children’s transport team across the bridge from Harris downtown to the Cook Children’s NICU with Avery in her isolette and has never looked back. For the first few days of Avery’s life while I was stuck in the hospital, Shawn was the one over in the NICU all the time, meeting her doctors and nurses for the first time, learning the terminology and about what battles Avery would face. He would send me pictures of Avery when he was over there and then come back to my hospital room and give me reports. Never once did he seem scared or intimidated. Never once did it seem like it was too much.

Now that we’ve been in the NICU for a few months, Shawn has really gotten comfortable with Avery and all of her equipment. Some people would be overwhelmed by a baby hooked up to so many different machines but I can tell that when he looks at her, all he sees is his beautiful daughter. In fact, he’s so comfortable that he’s learned how to operate some of the equipment and is always willing to give the nurses a hand. As a joke, I’ve started to call him Nurse Wooley.

In talking to several of my friends who are dads, they’ve talked about feeling somewhat helpless in the first few days and weeks of their child’s life. The most important thing that a baby needs, besides sleep, is something they are unable to give them, milk. As a mom in the NICU, I know that helpless feeling all too well but dads, you should never underestimate the role that you play. The moral support that you provide to your wife and child is priceless. Shawn may not be able to provide Avery with the food she needs right now but he stays up late sometimes with me to pump and always encourages me even when I’d rather hit snooze on the alarm than get out of bed for yet another pumping session.

So, to all the NICU fathers, please don’t feel helpless. You are helping more than you know. Keep pushing the wheelchair because your wife isn’t well enough yet to walk to the NICU; offer to wash her pump parts so she can get an extra 10 minutes of sleep, proudly deliver her milk to the milk bank and most important of all, know that just by being there, you are helping.

To Shawn, happy first Father's Day. You are the best father Avery could have ever asked for. I am in awe of the strength you have shown.

Avery update:

We are off the ventilator! In true Avery fashion, Avery pulled her own tube out on the morning the doctor was already planning to take it out. She definitely does things on her terms! She is 5 pounds, 8 ounces and doing great on continuous positive airway pressure (CPAP). Our doctor is hoping to have her off CPAP in the next couple weeks. After that, there are a couple more steps to breathing on her own. We are able to hold her so much easier now. Grandparents are taking turns holding her and she's getting used to sitting in our bouncy seat. She loves being out of her bed and is definitely a very social baby. She is in clothes and already very fashionable! She gets many visits throughout the day from the nursing staff so they can see what she's wearing. We are getting that much closer to be able to take our sweet girl home!

Related links:

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

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.