Preemie bravery isn't just for the NICU

Be brave. 
A sentence that we spoke often in the NICU to our sweet boy.
Every day I would tell Beckett how proud I was of how brave he was. How brave he still is.

My heart has just been heavy for those preemie/NICU graduates who have to continue to be brave for more surgeries, more procedures, more tests...as if it wasn't enough getting a good NICU stay under your belt. I think it's safe to say preemie bravery doesn't stop after going home from the NICU.

Maybe it's because we are anticipating upcoming Beckett's eye surgery (which is rescheduled for March 13, by the way) or maybe it's because right now we are journeying with a lot of brave preemies. And their parents.

There is anxiety, worry, fear of "re-living" being in the hospital. Even though it's different than the NICU, a preemie parent never knows what is going to trigger those ever so vulnerable emotions to take them back to the days of desperation, watching their tiny baby fight for his or her life. And I'm so thankful that not EVERY day in the NICU was like that...but ask any of us...the rough days when they had to be "real brave"...those were ones we do remember. I'll never forget the night I stayed with Beckett until 4 am waiting to make sure he was stable enough for me to feel comfortable going home. The isolette was popped open, a couple more nurses came in to assist, and I'll never forget the words of the charge nurse, as they were giving him blow by oxygen saying "he just won't breathe."

We had to "let go of control" Beckett's first 88 days of life...and Ellie's first 71. So the thought of handing my sweet Beckett over to be put under general anesthesia, just brings me to tears. I completely trust Dr. Packwood. It's not that. I completely agree that the surgery is necessary. It's not that. And I know this is supposed to be a "no big deal/textbook case" type of eye surgery. It's not that either.

I know, even though we are at home, I still don't "have control," but what I mean is in the sense of...
Beckett's under my care now. We've been home over year from the NICU, and then some. I'm the one to comfort him when he's scared. He knows me. I know him. And very well. I am his mama. But now, he is old enough to give you "that look." The "mom, what are they doing? I don't understand" look. And then it just takes you back to the NICU, and you wonder haven't we been through enough?

My heart just is heavy.

I journey with newly titled preemie mama friend who just started the road in the NICU with one, and one in Heaven. I don't want her to have to go through it.

I journey with a preemie mama of twins who continues to get frustrated with every single feeding with both babies, wondering and praying when will get get past this "phase." I don't want her to have to go through it.

I journey with a preemie mama who is exhausted, and trying to comfort her 1 year old son, after having cranial surgery because his sutures prematurely closed. I don't want her to have to go through it.

I journey with a preemie mama who has a 2nd grader who now has seizures likely due to the Grade 4 brain bleed they discovered in the NICU. I don't want her to have to go through it.

I journey with a preemie mama who continues to be patient for when her son will have the desire to eat aside from the "full" feeling he gets from his g-button feedings. I don't want her to have to go through it.

I'm so thankful God gave me an empathetic heart that cares for other people...especially those preemie parents and those tiny babies. But there are definitely days that I don't want to have to go through it. But that's where the bravery comes back into play.

Preemie bravery isn't just for the NICU. And bravery isn't just for the preemie. It's for the parents too. And also for the friends and family choosing to be brave and journey with them...however long it is.

"Watch, stand fast in the faith, be brave, be strong." 1 Corinthians 16:13

Be brave. Celebrate everything. Cheer loud. This life God gave us is such a gift. 

Big Dreams

So, I started a job, a business with Rodan + Fields Dermatologists selling skin care products. A job I can do from my home, so I can do what is most important for me right now...stay home with my preemies. But I have big dreams for this business. I have to put on my brave pants again. And though it may be a slow start, I can't wait to see what God will do through this business...

He continues to amaze me. I have to share this. You just don't make this stuff up! I saw a consultant, Ali, on one of our team's FB sites post about how she was a RN from a medical spa, and had just started with Rodan + Fields too. I had liked the education she had been posting about the skin care products, more from the medical side of things, so I reached out to her asking if I could re-post her stuff. I told her my "WHY" I am in this business. For my kids. For my tiny miracles. And I shared a bit of our story.

She wrote back and said she too has a tiny miracle. Sweet Anna who was born at 1 lb. 3 oz. is her "WHY" she is in this business too. 

ARE YOU KIDDING ME? Of ALL the consultants I reached out to, the one I picked was ALSO a preemie mama?

Of course, insta bond. The preemie mom insta bond.

She has been such an encouragement to me already in this business, and I can't wait to hear about Sweet Anna's preemie journey. We started sharing last night, but then it got TOO late!

She shared a tribute video of her sweet girl. The tears just flowed. And it made me remember Ellie's video we made after she came home from the NICU.

Even four years later. I'm still SO thankful. We are Thankful. Thankful for the greatest LOVE that got us through not one, but two preemie journeys.

Read back...Click on the link below...remember our first sweet miracle baby? Be thankful again with us.

No one knows what life will bring...I will offer just one thing. I will trust HIS LOVE in me. Loving you eternally...

http://elliegramkow.blogspot.com/2008/11/we-are-thankful.html

So why the business? I have BIG dreams. And they all involve our journey with preemies. I would love to become a NICU nurse, and pay for schooling. I would love to give back to all the organizations that served us: Stormont Vail Hospital Foundation, Ronald McDonald House in Topeka, Kansas, March of Dimes for ongoing research efforts for premature infants, NICU Helping Hands Foundation,

and my biggest dream....

To be able to fund a licensed counselor in every NICU. A counselor that parents can meet with IN the NICU, free of charge. NICU parents don't want to leave their babies. But, I think there would be such value in having professional counselors there to talk with parents IN the midst of the crisis...to validate feelings, to validate the norm of the trauma they are going through, to process all the unmet expectations they have had to so abruptly face, to address all the feelings they never "wanted to feel," to help process how we all handle stress in a crisis differently...the list goes on.

I never knew this passion would come out of this journey that I never saw coming. But like Ellie's tribute video song says, "No one knows what life will bring..."

I will trust HIS LOVE in me.

Happy Valentine's Day, ya'll!

Feeding Tube Awareness Week

Team Gramkow supports FEEDING TUBE AWARENESS WEEK! Ellie and Beckett know that some of their preemie friends wouldn't grow with out their feeding tubes, and we are so thankful to whoever invented them! We love you Baby T, Asher and Brooklyn! Grow! Grow! Grow! Thanks to Baby T and her awesome mama for the awesome letter on how we can help understand feeding tubes a little bit better! http://thelindsayfive.blogspot.com/2013/02/feeding-tube-awareness-week-letters-to.html

 Ask just about any preemie graduate mom, and they'll agree that FEEDING is the one of the most difficult and frustrating tasks! All you want them to do it just eat. But sometimes the reflux, the oral aversions, the whatever ... prohibit that from truly being successful. I am SO thankful that there are feeding tubes for the kiddos who need them to thrive to develop. So, so thankful!