Happy 4th Birthday, Avery Rose! We love you!
Happy 4th Birthday, Avery Rose! We love you!
Happy New Year dear friends and family. Enjoy this glimpse into our new year’s joy…
One year ago today, our NICU hell ended and Avery Rose came home with us. After 5 terrifying months, 6 major surgeries, and the earthly loss of her twin sister, she was finally in our arms. For the first time since her birth, we were able to hold her anytime we wanted to, without asking for permission, without an obstacle of wires, without constant monitors beeping, and without the flurry of angels in scrubs rushing from child to child. Today, we celebrate our Christmas miracle and what feels like her truest “birthday.” Despite our inevitable uphill journey, we cherish every second, and EVERYTHING about her is sacred to us. We appreciate your continued prayers for our tiny warrior.
Robin finished the video and we burned a few hard discs to give to our families and one to keep for ourselves. Then I began putting it on the internet for others to enjoy. In watching the video myself, I looked at many of the pictures for the first time in months (and a few of them I hadn’t seen since last year). Doing so brought back all of the emotions of the last year. I laughed, I cried, I cried, I cried, I laughed. I started the video over again.
Then I began reading some of the posts that we have written on this blog over the past year. I haven’t read many of them since they were posted–the emotions filled my heart and mind. I remember how I felt, in general, over the past year but I guess that I had suppressed specific feelings. It must have been my way of coping with all of what had happened.
And then I listened, I mean really listened, to each of the songs that we had chosen for the video. Each of them is representative of how I (we) have felt over the past year, especially pertaining to Avery. I had heard all of those songs before, the first three numerous times, and I told Robin months ago that I would like to include them in Avery’s birthday video. She didn’t argue as she too finds each of them to be powerful. But that last song, Unwritten, by Natasha Bedingfield I had really only heard in passing. Though I recognized the beat I had never really listened to its lyrics. As I sat watching the video and actually feeling the lyrics of each song, I realized how perfect that song is for the end of the video.
“I am unwritten, Can’t read my mind, I’m undefined, I’m just beginning, The pen’s in my hand, ending unplanned,” these lyrics slammed me to my chair and I had to sit and listen. And I began thinking. Despite all of the odds, Avery was always a warrior and she just powered on. “Staring at the blank page before you,” now I had no choice but to rewind and listen again. The rest of her life really is a blank page, despite all of the stuff she has been through, the sky really is the limit and the simple fact is that no one knows what the rest of her life is going to be like. Sure, the doctors can make really good educated guesses, but aren’t those the same guesses that told us she would never (insert normal milestone here)? The simple fact is that the most certain thing that I learned from the time in the NICU is that, “every baby is different.” (Fellow NICU parents, can I get an Amen?) We heard that quote at least twice a day every day that Avery was in the hospital. I even began to throw it back at doctors and nurses when they told us that Avery would definitely/never (X, Y, Z- bad thing, bad thing, bad thing) . Now, I’m not trying to doctor or nurse bash, I am eternally grateful to them for all that they did for Avie. I’m just saying that there are very few certainties in life and even fewer in the life of a baby that was born as early as Avie. It works both ways.
“Today is where your book begins, the rest is still unwritten,” I found myself really enjoying this song. Everything that has happened to this point is her history and certainly is part of who she is and will be, but the rest of her life is yet to be known. And as a very good friend of ours (and someone who knows our journey both as an observer and also a parent of a 23 weeker) wrote, “I have no doubt that she will continue to amaze and thrill us!” How right you are, Kristin!
On June 24 I took Avie to the neurologist where I received pretty bad news. In fact, this news hit us so hard that we both refused to share it with anyone other than family and very close friends until the past few days. The doctor told us that he believes that Avie is blind and that the issue is in her visual cortex, thus there are no procedures to repair it. We took solace in the fact that if she is blind, at least it will have been from birth and therefore easier to compensate for than someone who loses their vision later in life. And then we thought about how much we had been told throughout this journey-twenty years ago our babies would not have lived. Period. Who knows what the future is going to bring in the medical field in the next few years? IF and I really stress, IF she is actually blind (look at some of the pictures and it becomes very difficult to believe that she doesn’t see anything), there could be a procedure just around the corner that could repair the issue. We really don’t know. “The rest is still unwritten.”
So, what did we do for Avie’s birthday? Well, Avie slept through most of it. In the past couple of weeks she has become pretty nocturnal. I’m not suggesting that she wakes up every few hours during the night, I’m saying she simply doesn’t sleep at night. We wanted to do something different and that Maddie would enjoy, but we didn’t want to go too far and we had decided against the traditional birthday party. We decided to pack up and go to Burke Lake Park (locals to this area have probably heard of it) where we rode the train, and the carousel then ate ice cream and watched as Maddie put on two performances in the ampitheater. Avie was awake for approximately thirty minutes of the adventure.
When we got home, with the birthday girl still asleep and a big sister who was chomping at the bit to see some presents opened and enjoy a cupcake, we did the only logical thing we could do. We had Maddie open Avie’s gifts so that cake business could get underway. At the end of it all we had quite a show with gifts surrounding a sleeping Baby Avie. I put a little smudge of icing on her lips in an attempt to get her to wake up. No dice. She slept the remainder of her birthday away and awoke sometime after midnight to start her new day. Despite the toll that it is taking on Robin and me, somehow it’s all okay.
As most of you who read this know, Avery turns one on July 26. I promise to update more soon, but for now please follow this link to view a video that Robin made to commemorate this milestone of our Tiny Warrior.