Trouble's Story - My Mother's Day Miracle

Many of you have met other critical babies through their blogs and their stories: Harper. Kayleigh. Stellan. Parker. Maddie.

Trouble in the NICU

Once upon a time, we lived a similar story. I can tell you this: Those parents are lucky to have you all. I have watched the blogosphere rally around these families. I saw the donations made in Maddie's name, and all the purple avatars on twitter. I saw all the orange and notes to Stellan. I have sat at this laptop and cried for Kayleigh and cheered for Parker.

And I know you have, too.

And those parents have gained something from you all. The compassion and prayers that you - the blogosphere - have shown and sent up for these babies has touched me more than I can ever tell you.

Because I was that mom once.

You didn't get to live the day-by-day with me when our own Trouble was born and survived every parent's nightmare. But I know that you would have loved him and cheered him on, just like you do for Harper, Stellan and Parker... and grieved with me on the days we thought we had to say goodbye.

I grieve with Maddie's parents and Kayleigh's parents. And the blogosphere has proven that compassion will never go out of style... that miles don't matter. That those children matter - not just to their families but to thousands who know and love them because of the words their families shared (and continue to share) about them.


Handy Man holds Trouble's tiny foot

Trouble came by his name honestly.

I went into labor with him when I was only 16 weeks pregnant. And in spite of what this Obama administration wants to call a baby like him - I loved him and wanted him fiercely. We tried everything we could think of to buy us more time. Twelve weeks of bedrest. Medication around the clock. It bought us enough to time to reach viability. But it wasn't enough.

He was born via emergency c-section. Silent.

His lungs weren't developed enough for him to cry. So while his face crumpled in pain, no sound came out. We watched as tubes snaked out of his throat, belly button, PICC line, wrists, ankles and for awhile - his scalp. He laid, tiny and naked, under a warming bed with nitric oxide tanks and an IV pole. The world was too much for his underdeveloped nervous system, so his eyes were covered and the sound tampered. We watched as he received blood - and quietly and prayerfully thanked the donors who made it possible. We watched heel pricks and chest x-rays... and got good news and bad.

The NICU is like a roller coaster.

We cheered as his belly was able to digest milk months before he was supposed to ever eat.
We cried as chest x-rays proved that his lungs just weren't up to par.
We cheered as IVs were removed, and medicine doses were lowered.
We crumbled hearing the news that our baby boy's head had bled out. His brain injury was major.

I would have loved to know about the blogosphere back then. Because as I've watched you all rally around the mothers who are aching, your words reach many, many more mothers on the sidelines. And you may not think that you can be healers - but your keyboard and your words really do have the power to comfort and embrace. And I have drawn great comfort knowing that the journey those parents have to make with all of you at their side - is somehow less lonely, less isolating, less paralyzing because you have given them a soft place to land when they crumble.


Trouble's NICU homecoming - length of a ruler.

After Trouble was sent home from the NICU, it wasn't the end of the journey. In fact, that's when the hard part really starts. All of the things a new baby is supposed to mean... they are all there - joy, wonder, happiness, a true miracle - but they can sometimes be overshadowed by fear, guilt, isolation, desperation and loneliness.

Trouble came home on oxygen. He had a heart monitor that strapped to his chest like a belt. He was on all sorts of foul-tasting medicine. And he braved it all. He survived...

Not just a traumatic birth. Not just 3 months in intensive care. Not just the oxygen needs, monitors, medicine, frequent doctor visits and feeding issues... but the whole thing. And he was a really happy baby.


age 4

None of this happened in a bubble. While we didn't have the blogosphere to rally around us, we did have an amazing support system. You may have wondered how we managed to keep a bedside vigil with two older children. My mom and mother-in-law came to the rescue - taking the boys at alternating times for much of that long summer. I had the support of a BFF who happened to be there, miraculously, at all the right times. The Ronald McDonald House was our home away from home for most of the summer. Our families, coworkers, neighbors and friends supported us and helped when they could.

Dr. D. I could write a book about this man. I will suffice to say that if you have to trust the life of your child to a single man, there is no other person I would rather have in the NICU that day, and for the months and years he helped us grow the boy. To our favorite nurse, Diane... we couldn't have survived it without knowing you were a phone call away. Your names will always be legend in our home - revered for the services you provided.

And my Handy Man - I have no idea how he managed to work, commute, spend all evening in the NICU, shuttle the boys and keep me from becoming totally unglued. He was Atlas during those months, bearing the weight of the world as our family faced the hardest thing it has to date.


Handy Man and his boys

3 months in the NICU. 17 months on a monitor. 38 months as an oxygen-dependent child. Years of watching and waiting, slowly allowing him out of the safe bubble we built around him to keep him safe. We are now filled with hope. We know we are the lucky ones. We know that Trouble will grow up to be whatever he wants to be; That he has a tenacity inside him that the rest of us could only imagine. He may be little. He may be scrappy. But that boy loves life.

So every year as Trouble's birthday falls in the same window as Mother's Day I reflect on those early days. The fear has lost its intensity but the gratitude for his life and the chance to be his mother never will.

I hope someday Trouble will write from his perspective what it was like to grow up knowing each breath he takes is a miracle and every moment we've had with him has not been taken for granted. I can only tell his birth story from the perspective of being his mother.

Happy 6th birthday, Trouble. You will always be my Mother's Day Miracle.

Handy Man has also reflected on Trouble's birth story, here.

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