What a Difference a Year Makes!

One day at the beach, while floating Emma around in her baby float, my mom and I were in the pool enjoying another relaxing day. Emma was loving every second of her pool time, dipping her tiny fingers in the water and sucking the little droplets off her hands. My mom looked at Emma, then at me and said, "Last summer, did you ever think that you would be doing this with her one day?" My answer was a resounding NO!

A year ago, I really couldn't imagine being in a place where we would be doing nothing but enjoying the simple pleasures of soaking up the sun and feeling the cool water against our skin. Just watching our little one experience these joys for the first time. I honestly thought that we were going to be in that hospital room in the NICU forever, watching other babies move into the next bed space and the move out a week or two later to go home to their families.

Even on the days I could imagine a life outside of the 9th floor of Beth Isreal Deaconess Medical Center, I didn't think it would be the life that my other new-mommy friends would be experiece. And, truth be told, when we did come home, it wasn't the same. All of our doctors appointments, surgeries, and constant worry about the continuously growing pocket of fluid on her head, separated our life from the life I expected and the lives that my friends were experiencing.

In that pool in Hilton Head, 11 months after her birth, we were experiencing life as it is supposed to be. My mom pointed out that no one in the pool, or on the beach, had any idea of what Emma had been through. Now that her hair has grown in, there's no sign of what once was an obvious indicator that something about Emma's body wasn't quite right. Notice I said, Emma's body and not Emma. There is nothing wrong with Emma. There never has been. Emma, is perfect (in my completely, unbiased opinion, of course). It's Emma's body that is slightly less than perfect. It's her body that needs a little help, not her. A year later, that is more apparent than ever!

Yesterday we went to see her neurologist for a routine follow-up. I realized that it was, I think, exactly a year from the date that the same doctor came to see her in the NICU. He was the first neurologist to look at her head ultrasound, and though he didn't have another rotation during her NICU stay, he ended up being her neurologist on our first visit to Children's Hospital. When he first saw her, she was a very ill newborn whose full diagnosis was unknown. At that point, she weighed only 6 1/2 pounds,after losing a pound from her birth weight, and a little over 20 inches long. She slept, ate and cried.

Now she is 18 lbs 5 oz and 31 inches long! She does much more than eat, sleep and cry. She talks, crawls, pulls her self up, feeds herself, makes us laugh, pretends to yawn and chew, points out hats whenever she sees one, says hi to EVERYONE, and loves books, ducks and hugging her baby dolls.

Last year, the neurologist wasn't sure yet if it was really meningitis. Hydrocephalus wasn't quite a part of the equation. Her ventricles were slightly enlarged, but it wasn't clear yet that there were going to continue to grow. We only knew that if meninigitis and/or hydrochephalus were the culprit of her illness, that we might have to begin changing our ideas about how Emma would grow.

A year later, Emma has shown us that meningitis and hydrocephalus were no match for her. Despite some intense 'white coat syndrome', which resulted in Emma trembling and quivering in fear as well as some even more intense screaming, the doctor was able to see how well our little Emma Bean is doing. Although she didn't perform any of the tasks he asked her to perform, all of which she could have done with FLYING COLORS, he could still see that there have been no ill effects on the function of her brain. After she calmed down, while the doctor showed us the images from her MRI in February, she began pointing to everything in the office and asking in her sweet baby voice, 'What'sth thisth? What'sth thisth?' Thank goodness she decided to show a little piece of who she really is - a vivacious, bright, larger than life 1 year old, not a trembling, shy, little wallflower.

He said she was clearly doing very well. According to him, she looks fantastic and is talking like an 18-month-old. He asked if she was getting Early Intervention services, but when I explained that she had been until we moved, but that we hadn't pursued it here, he said, 'Honestly, I don't even think she would qualify because she is doing so well.' Music to a mommy's ears! So he wants to see her to have another MRI in February and see her in March with a Neuropyschologist and Phsyical Therapist to get a baseline evaluation of her congnitive and phyiscal development. All standard procedure in managing her care. I'm so grateful that he is the one caring for her through these important developmental years. I'm also so grateful that he is the one who know how far she has come in the last year. Seriously .... what a difference a year makes!