Avery's journey - part 2
A Cook Children’s employee documents her time in the NICU
Avery turned 1 month old on April 14, 2014. Instead of celebrating that milestone in July at home like we had originally planned, Shawn, my husband, and I celebrated in the Cook Children’s Neonatal Intensive Care Unit (NICU). In an effort to celebrate the occasion with a “normal” parent activity, we bought those one month milestone stickers that you see parents sticking to their child’s onesies and posting pictures on Facebook and Instagram so we could do the same. The whole activity didn’t take long at all but for those 15 minutes of taping the sticker to her diaper and taking pictures, I felt like a “normal” parent.
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.