September 2013

And yet

September 2, 2013

Note, if you haven’t finished The Story of Bug, and you don’t want to know how it ends, don’t read this post!!

 

On a recent trip to the ER at Sick Kids (the reason for that trip was unrelated) I was asked several times about Audrey’s medical history. Whenever I mentioned her gestation and weight at birth, the nurse or doctor would smile and say, “miracle baby”. And yes, at 1 lb 13 ounces I think she was. The complications and painful interventions that she endured over 75 days were more significant than many adults have endured throughout their entire lives.

And yet. Believe it or not, Audrey’s course in the NICU was a pretty straightforward one, even an easy one for a baby her size. The complications she suffered were “self resolving”. It is not uncommon for preemies to have multiple surgeries: to close large holes in their hearts, to drain fluid from their brains, to cut out dead pieces of intestine, to save their eyesight, to fix hernias.

Babies can literally hang on the edge of life and death for weeks. And sometimes the rollercoaster ride ends abruptly. Leaving devastated parents, who have dealt with the trauma of the NICU and now must deal with the loss of their precious child.

When you emerge, if you are lucky enough to go home with a living, breathing baby, there is gratitude unlike anything you have felt. For many, there is a desire to do something to help those who come after, in an experience that it is impossible to understand unless you’ve been there.

For us, that meant starting a concert series called A little OPERA for little BABIES. We supported the Linden Fund, the charity which had held the Christmas party which made such a difference. We also did the yearly Linden Fund walk/ run. And I eventually joined the Parent Advisory committee for the NICU at Mount Sinai.

At our first concert, back in 2009, Andrea Lamont (a music therapist) was in the audience. She asked me afterwards if I knew that music  therapy in the NICU has been shown to help babies. I did not. We started talking, and I brought it to the Parent Advisory committee. That was the beginning of a long period of planning.

Music has been shown to help babies in the NICU:

  1. Regulate their heartrates
  2. Increase oxygen saturation levels
  3. Improve their sucking ability and feeding
  4. Gain weight

It even leads to faster discharge times.

And of course there are the parents. If you’ve read Audrey’s story, you probably won’t be that surprised to learn that parents who have experienced the NICU are more likely to develop postpartum depression (both partners), and are also at risk of suffering with Post Traumatic Stress Disorder. An important part of the planned program is to get parents providing much of the music by singing to their babies. We hope that this will help a little bit towards alleviating the feeling of helplessness that they invariably feel.

Audrey will be 6 in November. It hasn’t been a completely straight line of development. She struggled with growth and weight gain for a long time. She is finally “on the chart” for height, but not for weight and at 32 lbs, I don’t expect she will be anytime soon. Learning to speak and be understood involved nearly three years of private speech therapy, combined with music therapy in the beginning. She has “low muscle tone” and her fine motor control is a bit behind.

But she doesn’t let any of that stop her. Like many preemies, she has what some call the “preemie temperament”. The feistiness that played a large role in her survival has resulted in a child who simply does not give up, no matter what. Parents will understand when I say that parenting her can be tricky at times.

When Audrey was about 2 weeks old (not yet 2 lbs, and not supposed to be born for another 10 weeks), she clearly wanted to be moved but her nurse was tending to a sick baby. I watched as she squirmed around. It took her about five minutes, but she lifted her head and turned it to the other side.  This summer, she learned to go down the fire pole at the park, and started on the monkey bars. And a while back, she taught herself to read.

 

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