March for Babies Ambassador Family Talk

We had our March for Babies this past Saturday and were the Ambassador family for our town. Our event more than tripled in walkers from last year, which is incredible, but the venue was too small for the walkers to all gather in one place. When we talked, only a small fraction of the people got to hear. I thought I'd post our talk on this board in case anyone is interested in reading it. To me, feeling the spirit of so many people coming together to help babies is just incredible.

I wrote (and spoke) the beginning & end and my husband did the middle. 

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 March for Babies Ambassador Family Speech - April 28, 2012

I wanted to begin by telling you how honored we feel to be sharing our story with all of you this morning. I know there are so many stories out there ? stories of love, stories of loss, stories of hope, and stories of heartbreak. We are one of the fortunate families whose story has a happy ending, and yet every time I feel immense gratitude and joy for my miracle little boy, I also feel a deep ache, an astounding sadness for all of the families who have struggled.

Our story begins with pregnancy complications leading to my hospitalization at 23 weeks, 2 days gestation. What was thought at first to be no big deal turned into a grave situation as the obstetrician, sitting between my legs, stated quietly, ?This is more serious than we thought.? For the next several days, I was on nasty drugs, lying with my head lower than my feet to enlist gravity, and doing everything possible to try to keep our little one growing safely inside a bit longer. Thankfully, I made it to the all important viability marker of 24 weeks and even a few days beyond. On December 13, 2009, Jacob Lee was born into this world 3 and a half months early. He weighed just 1 pound and 14 ounces. As the doctors removed him from my uterus, I heard 3 tiny cries, the sweetest sounds, and I knew my baby was still alive and that he had been born strong.

After his birth, Jacob was transferred to the Neonatal Intensive Care Unit where he would remain for the next 98 days.  When Jacob was only one month old, he needed to have surgery to close off what is called a Patent Ductus Arteriosis which is an open valve in the heart.  It was extremely scary and difficult to see our fragile little baby have an operation, but he was a trooper and made it through the procedure very well.  After he recovered from his surgery, we were finally able to hold our baby in our arms after five weeks of waiting.  By the time Jacob was eight weeks old, he was able to initiate all of his breathing on his own.  He was then able to come off of the ventilator that he had been on since birth.  Jacob still needed equipment to help him to breathe, but the new equipment was far less invasive than the ventilator.  In his remaining six weeks in the NICU, Jacob learned how to bottle feed, gained weight, and weaned back on the amount of supplemental breathing support he needed.  This led up to March 21^st, 2010, the long awaited day we were able to bring Jacob home with us. 

For four months after Jacob arrived home, he remained on supplemental oxygen and on a monitor that checked the oxygen level of his blood.  This presented some challenges as Jacob was typically confined to the twelve foot radius surrounding his oxygen tank, and the monitor would beep loudly at all hours of the night, oftentimes for false alarms.  One of the largest challenges for us in having Jacob home was in limiting his exposure to illnesses.  Jacob?s lungs were still quite fragile so that even a basic cold had the potential to make him quite ill.  As a result, for over a year after leaving the hospital, Jacob stayed at home except for going to doctor appointments.  We also had to be very careful about having people over to our house.  Usually, grandparents were the only visitors allowed over and only if they had no signs of a contagious illness.  These restrictions made life difficult, but they certainly proved worthwhile as Jacob remained healthy throughout his first cold and flu season at home. 

Since developmental issues are common among preemies like Jacob, shortly after coming home Jacob began meeting with therapists who helped to monitor and foster development in areas such as gross motor skills, fine motor skills, and speech.  Although some skills and milestones may have come a little more slowly for Jacob than for the typical child, Jacob has shown steady development in all major areas.  

Today, as you can see, Jacob is a remarkably healthy, intelligent, mobile toddler. Seeing my tiny, fragile baby grow into this charming, rascally, able child has been such a blessing. We are grateful to so many who have made this journey possible for us: the incredible doctors and nurses at Saint Joe?s; friends, family, and even strangers who offered us endless support; and the March of Dimes for funding research which has led to the development of medical practices and procedures to keep the tiniest babies, like Jacob, alive and to allow them to thrive.

As we walk today, let?s remember and honor all of the stories. Let?s feel the heartache and hope, the grief and the joy. With each step we take, we are walking toward a new future ? a future with more happy endings. Our involvement with the March of Dimes, our fundraising, and our passion for the cause will lead us into a world where the stories of more families conclude with that fabled final line: ?and they lived happily ever after.?