Archive for the 'Prematurity Awareness' Category


Spring School Pics

I love that his school does pictures in the spring and fall. He changes so much every week!

We are having a beautiful spring although this weekend is a bit cold and rainy for me.


This is the new family team quilt for the Greater Cincinnati March of Dimes chapter. It made me catch my breath. Our walk is Sunday.


Happy NICU Nurses Day!

To the Ladies and Gentleman at Good Sam who took care of our little man:

Thank you, thank you, thank you from the bottom of our hearts. Today, we have a two and a half year old full of boundless energy and spirit. He loves Thomas the Tank Engine and Jake & the Neverland Pirates. He says grace when I give him a Hershey’s kiss for going on the potty. He’s just learning to say, “I wub Mommy.”

He’s still in his night-night shoes for his left clubfoot. He’s in SMO’s now for his Hypotonia. He still struggles with weight gain and reflux. However, he loves to play outside. He loves to give hugs. He BEGS to go to his grandma and great-grandma’s house, or to call Nana and Papa on the iPad. He still loves to be held as he falls asleep. He still loves his NICU puppy dog quilt. He’s really excited to be visiting “Mickey’s house” next month and to wear his Jake costume.

We wanted to drop off a card, picture, and some goodies to you today, but Mommy had an early meeting at work. We will stop in later this week.

All Our Love,

Drake’s Family


Parents of Preemies Day

May 4th was Parents of Preemies Day. This is an annual event created and supported by Graham’s Foundation to honor the parents of premature babies.

Parents of Preemies Day “recognizes the courage and commitment it takes to stay strong and resilient when premature birth turns a family’s world upside down,” as quoted from the official Parents of Preemies Day website. You can find out more about the joys and challenges of preemie parenthood and ways to celebrate next year!

I had planned on taking part more fully in the official twitter chat because there are no events in our area, but we ended up going to Entertrainment Junction with Gammy to celebrate instead. You can search twitter for #parentsofpreemiesday to catch up on yesterdays conversations.

Our preemie parenting journey started on February 19, 2012. My water broke unexpectedly at 29+6 gestation at 10:10 pm and Drake was born the next morning at 10:07 am at exactly 30 weeks. Drake spent 34 days in the NICU. As a parent of a newborn in the NICU, you celebrate different milestones from other parents. The first day on CPAP instead of intubated. The first day on nasal cannula. The first time they can wear clothes or open their eyes. Day 4, the first day we were able to hold him and do kangaroo care was also the day I was discharged from the hospital. It’s a different world than any expectant couple believes they will experience.

Preemies don’t just go home from the NICU and magically transform into a healthy newborn. Families often face numerous, continuing specialist visits, special equipment, special feeding requirements, and isolation from their family and friends for protection from deadly viruses, such as RSV. Every family has their own unique journey. Our life after NICU follow-ups and specialists included clubfoot treatment, hernia repair surgery, mouth cyst, low tone, ophthalmology, failure to thrive and extra calorie intake, and cardiology. We were in RSV isolation March to June the first year and August to April the second year. We started Early Intervention at 14 months because he was having trouble with gross motor skills and communication. We have been lucky, so far all of Drake’s complications due to prematurity have been treatable.

As his parents, my husband and I both processed our time in the NICU very differently and the past two years have been a challenging time for our marriage. My husband had to work and finish the renovations on our house. My husband and his best friend had stripped our carpets the weekend I went into labor, so we were living at my mother-in-law’s house. I wanted to spend as much time as possible at the NICU, and my employer did not offer paid maternity leave. A lot of my emotional turmoil, pain, and hormones were borne by my husband in those early days. Our parents all still work, and were working out of town. We have recently begun discussing some of our feelings and the things that happened then. Even last year, many things my husband still preferred not to discuss.

Two years later, everything is getting better and our son is unbelievably, undeniably, amazing. We are in awe of him and how far he has come.

I hope all preemies and their parents had a beautiful Parents of Preemies Day 2014!

Side Note: We got his first school pics in last week, and they are fabulous!



Cincinnati/NKY March for Babies

We marched in honor of Drake and Mallory and Annabel.

We marched in remembrance of Maggie Elmer, an angel too soon.

We marched for all our NICU friends here and all over the world.

Thank you Team Drake for helping us give all babies a healthy, full term start!













Merry Christmas!

We never think we’ll get here . Sure, I know what it feels like to get up 3 times a night to make sure a hernia isn’t strangulated. Or to cook high calorie formula at 3am because I forgot to wash the dishes on schedule. Or just because I feel like making sure he’s breathing.

Tonight, both my fellas are in bed and I’m wide awake because we are going to visit Drake’s preschool tomorrow and sign up for the 2 year old class.

I spent the day today organizing the crazy amount of things Santa and relatives gifted little guy with. A large box of “baby” toys are packed up ready to go in the attic. More because I can’t bear to part with them yet rather than the “just in case” reason the grandmas are hoping for.

Christmas was wonderful. D smiled for Santa, and opened his gifts and demanded, “OPEN, oooopeenn” for each one so he could play. We kept our gifts small and took suggestions from his EI therapists on what would help him most over the next six months.

Those two ladies in Early Intervention have been the biggest blessing and biggest healer of my psyche. It’s hard to believe I was ever worried about that program. Hearing how we are doing the right things has been balm to both mine and Daddy’s souls.

Tomorrow feels like the start to our new year. This is the year of the potty, and the Magical (yeah, right) catch up year of 2. Twenty two months old. He still refuses to eat on occasion. Spends other days begging for cookies or chocolate milk. It’s actually pretty fun to see the looks on people’s faces when I allow him that sip of coffee he’s begging for.

When your 22 month old is just 20 lbs, he gets anything (a taste at least) that he wants and actually asking for it is like winning the Powerball lottery. It was a beautiful holiday, so different from the quiet season in isolation last year. I feel blessed and thankful beyond words.

One moment in particular was very precious to me. When I was 21 weeks pregnant, my husband and I attended our church’s 5 o’clock children’s Christmas Eve service. It was December 2011. They asked for the youngest child to help with placing the baby Jesus in the creche in the Nativity scene on the altar. It brought so many memories of services as a child, being an acolyte,  and my family 800 miles away. I sat through most of the service in tears or filled to bursting with the joy of the thought of my child possibly being the youngest the following December. Instead of the 17-19 weeks I thought I had left, D was born in mid-February about 9 weeks after Christmas. Instead of an Spring baby, I have a Winter one. And Christmas 2012 was spent at home, just the 3 of us.

Christmas 2013, my child finally walked in the procession with me holding him, and put the baby Jesus in the manger to the sounds of O Come All Ye Faithful. It was the first night he said Jesus. It was the first night he sang along matching tone with the piano. Two years of milestones. Two years of fear and joy and wonder and disappointment. Two years of miracles.

Peace to all preemie families out there getting through each day in the NICU, or RSV isolation and beyond. I wish you the joy of the season and hope for your future.

I feel awesome after this week of celebration and rest. I am ready to face the annual follow-ups and IFSP meetings I see on January’s calendar. I’m not feeling quite so ready for the first day of school, but I’m sure we’ll survive and come to enjoy that, too.

Another big Christmas milestone? He actually got to visit AND enjoyed Mall Santa?! 🙂

Santa 2013


World Prematurity Day

World Prematurity Day Collage 2_Page000




21 months actual,18.5 adj



loves cookies, chocolate and brooms

hates car seats and night night shoes


Prematurity Awareness Month

November 17th is World Prematurity Day.

I think it’s important that we share our stories and raise awareness because so many people don’t understand. I’m glad they don’t in a way because it means it’s never touched them or their children, but it can be so heartbreaking to fail to find someone who gets it.

A few things about preemies:

1. Mom didn’t cause the early birth. It really falls under S… happens.

2. The journey doesn’t end at the NICU door upon discharge.

3. These kids are amazing.

And the D report:

I am really thankful for D’s therapists in Early Intervention. There are days where I feel like those sessions are the only ones in which my concerns are listened to and addressed. Special people choose to do this work. I can only imagine the rough days they must have, and they are so upbeat and awesome.

At this point last year, we were becoming very concerned with D’s weight gain. His pediatrician was handing out failure to thrive diagnosis and scheduling him in for weight checks. He lost 4 pounds after his hernia surgery. We just could not get that kid to eat. I wonder now if it had to do with the sedation part of things. I researched other parents forum posts and life after nicu discussions, and it didn’t seem to affect any other kids of various gestation that way.  Then at his 9 month/6.5 adj checkup we got the go ahead to try a few “real” solids at Thanksgiving dinner to see if he just didn’t care for baby food puree. He got one bite of mashed potatoes and gravy and things started looking up. We still have our bad days and weeks, but it’s been getting better. He at least has a few go to food loves that, while not healthy, save my sanity by getting something in him. 

Drake’s 3rd Birthday

February 20th, 2015

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