Four years ago today, November 10th, 2007, my friends Heather and Mike Spohr had a baby girl named Madeline. Maddie was born 11 weeks early and had to stay in the hospital for two and a half months. I didn’t know Heather at that time but on November 26th of that same year, my twins, Sadie and Matilda, were born about six weeks premature.
While Heather and Mike were in the hospital NICU sitting vigil over Maddie’s isolette, I was in a different NICU with my twins, watching while they learned to breathe, eat and regulate their body temperature on their own. The hospital days are like a blur to me in some ways, in most ways really. The stress is what stands out the most in my mind. The stress became an almost physical being in the room with us. And we were lucky. There were no surgeries to be performed on either of our girls, only Matilda needed assistance breathing because Sadie at only two pounds breathed room air from the start. But it didn’t matter how well they were breathing; I could never catch my breath.
Everyday I struggled to find balance. The babies needed colostrum but my breasts wouldn’t cooperate. I cried as I pumped at home. I cried as I pumped in the NICU, shielded only by a little white curtain. I couldn’t hold Sadie for awhile because she was too small.
It may have been three days, it may have been over a week, like I said, it was a blur, but when I was finally able to lift her out of her isolette and put her against my bare chest, heart to heart, it felt like holding a tiny guinea pig and it was hard to believe she could be this small and yet be okay.
Some days I’d get the hospital after dropping Elby off at preschool and the girls would be asleep. The staff didn’t want us to wake the babies -they needed every bit of sleep to grow and develop – so I’d spend my visiting time just sitting near them reading US Weekly, eating candy compulsively and worrying, mostly worrying. I felt isolated and terrified and numb. It was wrong to leave every day without my children, to go home and sleep in my bed and have to call a night nurse to see how they were doing. Or worse, wonder if they’d call me because something was wrong.
In some ways I coped with the stress by shutting down. I never felt that I stayed long enough at my visits, I never felt that I did enough while I was there, there was a lot of guilt and no one to really tell me what to expect, what was normal.
By Christmas, both girls were home with us and if you’ve followed my life at all, almost four years later, we’re all doing fine. Along the way, Heather Spohr and I met through blogging and came to find out that our girls, Maddie and Sadie, were in the same weight class. Two teeny tiny loveable as sin babies almost the exact same age. We knew we had to meet and see for ourselves. And so we did. We met, held each others’ babes, laughed at the ridiculousness of infants who wouldn’t eat and then we began to keep each other company online and face to face when we could.
And then in April of 09, when she was only 17 months old, Maddie passed away completely unexpectedly. She would’ve been four-years-old today. Unthinkable. Wrong. All kinds of Fucked Up. Where do you start right?
Heather and Mike got an outpouring of love from the Internet who’d come to love their daughter through her pictures and videos. Mike and Heather donated $100,000 of that money to the March of Dimes and with the rest they started a charity in Madeline’s name called “Friends of Maddie.” The charity helps families who have children in the NICU.
I for one could’ve used a friend of Maddie while my babies were in the NICU.
In honor of Maddie’s birthday, Mike and Heather put a song that they wrote and performed called “You Are The One” on iTunes and are giving the proceeds to their charity. All you have to do to donate is download the song for .99 and then spread the word. I can’t link to iTunes but just go open your iTunes, search for Mike and Heather Spohr or “You Are The One” and buy it.
Please help me honor Maddie, sweet Maddie Moo.
You can find Heather’s blog, The Spohr’s are Multiplying here.