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

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.