Chicago – The Beginning

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I was sitting at the gate B28 in the Manchester, New Hampshire airport wishing I had never agreed to attend the conference.

My mind flitted and flurried with worry after worry – soccer games, school lunches, dogs, cats – when in reality I was afraid to get on the plane that would soon be thousands of feet above the ground.

I’m afraid, I whispered out loud.

It helped.  Still, I didn’t want to board that plane.  I didn’t want to leave my babies behind.

A pre-boarding announcement caused me to jump in my seat.

I’m afraid, I said again.

Then I began my Why did I even write this stupid book chant which thus far has occurred before nearly every video, radio and live-in-person talk I’ve given.

Why, Why, Why?  I wanted to stomp my feet on the airport terminal floor.

I checked my email one last time before moving to take my place in line.

And with permission from the author, I share the following email which came at just the perfect moment, leaving me certain that I was in just the right place, at just the right time, and certainly not alone.  Thank goodness I had tissues in my bag!

Hi, Kasey.  My daughter and I stopped by my office last week and the man I work for told my daughter he had a gift for me, and he asked her to bring it over to me.  When she handed me your book Preemie, my knees went soft.  He then went on to say that he was walking through the book store, recognized your Andie, knowing her through some interaction with you and knew I had to have the book. You see, my healthy 5 year old daughter that handed me that book was a 28 week preemie born at Brigham & Women’s where she spent 89 days in the NICU in 2007.  I read the entire book last night and felt like I just relived my own journey. 

We were fortunate to not have too many severe complications, and in fact, never required any surgeries, but I felt as though you had written my thoughts exactly.  Nurse M was one of our primary nurses, and we occasionally had Nurse Y on our team.   We had follow ups with Dr. V ( I knew from your description of her exactly who she was!) and the Center for Healthy Infant Lung Development with Dr. R for a few years until we received the all clear.   We had our ups and downs, throughout our stay, but are so mindful that it could have been so much worse.  I found fenugreek, Reiki and massive parking bills throughout our days too!   We did break the cardinal rule and became very friendly with the family that was in NICU A with us for 8 of the 12+ weeks.  Somehow, we began talking and we had each other to talk to, watch over the other’s baby when we weren’t there, but even now to this day, just to have someone understand what it’s like to deal with monitors and feeding tubes instead of play dates and outings.  They were visiting Boston from Maine, and although they have since moved away, we get the kids together at least a few times a year.  This morning, after reading your book, I called her and shared it with her. 

I really just wanted to thank you for writing your story.  I always felt that I wanted in some way to write ours down, or in some way help other families through the nightmares of this experience.  I feel very fortunate that we ended up at Brigham.   We’ve always felt an immense debt to the nurses….who during our time there, also helped me find my voice as a new mother.  Each one of our team had over 30 years of experience, and they could tell us down to the day, what was going to happen, and for the most part, they were right on.  I also felt that they somewhat protected us from becoming “research” with the young doctors and learning students.  We were, above all, a family trying to pick up the pieces of our shattered hopes and dreams.   It wasn’t until 2 years later, I would have my grocery store breakdown…I suppose it was after all of the therapy visits, the more frequent doctor visits, etc. that I was finally able to just absorb what had happened, and process all that I had missed.  I had been on bed rest at Brigham for 8 weeks prior to her arrival, despite their wishes to send me home prior to gestation week 24.  I told them from day one, I was not leaving that hospital without my baby.  At 35 years old, my first pregnancy that we were told would never happen, I knew she was my miracle, even before I knew she was a she!  I wasn’t giving up…..and neither did she. 

My preemie turned 5 just a few weeks ago and I, like you, simply could not believe this day had come.   We continue to keep in contact with the nurses, we invite them to her birthday every year just so they know how much we always appreciate her life, thanks to their caring ways.  I’ve attached a picture of her, just because I still can’t look at it and believe how amazing she is….just like your Andie.

Thank you again….it’s so nice to know that we weren’t alone!

Barbara 

F8D9

Jillian Grace – 28 weeks 2 lbs 5 oz 14 inches

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