I sat here for hours with the blank post in front of me wondering what I could possibly write.
A year later and I still can’t answer those questions.
It’s been one year since Madeline Sphor became an angel.
One year seems too long and yet not long enough at the same time.
Sweet precious Maddie, you may be gone, but you will never be forgotten.
Maddie’s parents have set up a wonderful charity in her memory. The Friends of Maddie works to support parents who have critically ill children in NICU’s. Speaking from personal experience, it is a vital and necessary charity.
Today, in memory of Maddie, our family will be sponsoring a family support pack through the Friends of Maddie. I hope others will celebrate Maddie’s life in this way, as well.
You can also get a March for Maddie shirt, (Vista is wearing one in the picture below). All proceeds support March of Dimes in their fight to improve the health of babies by preventing birth defects, premature birth and infant mortality.
My Follow Friday post was bumped when Vista got scheduled for an early Friday morning CT scan, late Thursday afternoon. This came about after talking to our family doctor about some regression we were seeing since her last seizure. Apparently regression can be a sign of a stroke, so they wanted a scan to make sure that wasn’t the case (and it’s not… the scan is fine as far as we know). Now we’re just waiting for them to schedule an EEG for her, which, I can tell you right now, will also come back normal.
As we pulled up to the hospital Friday morning, though, Vista chirped from the back seat “Oh! The hospital. We go see doctor?”
My heart broke a little. No two year old should recognize the hospital from the outside of the building. No child should know that pulling up to a hospital means a doctor is involved.
And it made me think of all the reasons she’s been to the hospital and all the different doctors we’ve seen there in the past two and half years.
Some of those reasons have been as a result of her brain issues. But a lot have been because she was born to early and the fact that her system just wasn’t developed enough to handle all the things it needed to.
And so this Follow Friday is dedicated to Heather’s Maddie, who was also born to soon. And it’s dedicated to my friends who are walking in Maddie’s memory to raise money for the March of Dimes, so that one day no child will have to deal with endless doctors visits because of complications from prematurity.
- Messponential - I love Colleen. Her and I talk almost every day, even though we live a country and two time zones apart. I cried when she told me that this year she’s not only marching for Maddie, but for Vista as well. If you’d like to support Colleen in her walk, too, you can click here.
- Adil320 - Ally is one of my roomies for BlogHer this year. I’m also dragging her to get inked with me while I’m down there (just don’t tell her husband that I’m a bad influence, kai?). In addition to Maddie, Ally is also marching for her close friend’s baby girl, Natalie Diana, who was born at 31 weeks. You can read more about why Ally’s marching, and support her, on her March for Babies page
- Mom2snk - Meredith and I first met through our husbands (yes, we’re both SharePoint widows). And in a weird, 6 degrees of separation twist, found out she’s also friends with Colleen. She’ll be joining Colleen on April 24th in for the Jacksonville Friends of Maddie
If you make one $5 donation this year, I would encourage you to consider the March of Dimes.
I’ve touched on Vista’s birth story a few times on here.
At 4 weeks early, she was considered a preemie.
We spent only a week and a half with her in NICU / Special Care Nursery.
That week and a half was one of the worst of my life.
That’s Vista in the Special Care Nursery.
That mass you see at the top of her head is an IV. No parent should have to see their newborn with an IV in her head. V had several of them over a couple of weeks. Two years later her head is still sensitive in the spots where the IV’s were.
Every day, a few times a day, they would come in and prick her foot to draw blood. Seeing your new baby screaming all you want to do as a mother is pick up your child and comfort them. But I couldn’t. I got to hold her for 30 minutes every 3 hours. That’s it. Because her bilirubin levels (the jaundice indicator) were at critical levels she had to remain on her bili-bed with extra phototherapy lights.
Not being able to hold and cuddle your newborn? Sucks the big one.
There are many issues that come with having a newborn. Vista had a terrible time learning how to latch onto a bottle (breastfeeding was right out). Because of her under-developed nervous system she would stop breathing occasionally. Let me tell you, watching your child turn blue is beyond scary. Then there’s also the residual effects. She continues to have stomach issues and sensory disorders. She’s also more at risk for respiratory issues. Those are things we may always have to deal with.
What we went through is minor though. There are many parents who spend weeks and even months in the NICU with their newborns because of premature birth.
November is Prematurity Awareness Month. Prematurity is the #1 killer of newborns. It’s my dream that one day no parent will have to know the stress and fear that comes with having a baby in the NICU. It’s my dream that one day no parent will know the pain of the loss of a child due to prematurity complications. And that one day, no child will suffer the effects of prematurity for the rest of their lives.
Today I’m joining the March of Dimes Fight For Preemies, so that maybe one day all parents can bring their newborn babies home, healthy and happy.