Hand to Hold's Official Blog: Written by Parents for Parents

A Defining Moment for Our Micropreemie

jackson a 24-weeker is ready for footballThe night my son, Jackson, came barreling into the world four months too soon, my husband and I shakily stood at his bedside in the Neonatal Intensive Care Unit (NICU) and listened to the neonatologist compassionately but matter-of-factly explain the many challenges Jackson would face during the first hours, weeks and months of his NICU stay. The first of which was just to breathe. The doctor went on to explain that Jackson might be deaf or blind, he may have Cerebral Palsy or mental retardation, he may have life-long respiratory problems, he may have speech and learning delays. We were in a state of shock! How could this have happened? Why us? Why Jackson? Were we prepared to be the parents this tiny, medically fragile baby needed us to be?

I admit it took months before I would allow myself to envision Jackson as a NICU graduate. I was so afraid of losing him, I could not allow my heart and my mind to picture rocking him in his nursery, helping him take his first steps or blowing out birthday candles. I certainly would never have dreamed of him playing football in seventh grade. And never could I have imagined him guarding a wide receiver three times his size, intercepting a pass and darting for the end zone. But recently, this dream played out in full color on a brightly lit football field in Texas. While he did not score, to this preemie mom, it was so much more than a touchdown! As I screamed and rang my cowbell as if it were Super Bowl Sunday, I could not hold back the tears. It seemed like a defining moment in our family’s quest to overcome prematurity.

Maybe it is only something another NICU parent can fully understand, but this was so much more than an interception, it was a symbol of the resiliency and strength of preemies and babies born with special health care needs. It was a reminder of our tremendous blessings and the insurmountable obstacles hundreds of thousands of NICU families must overcome to ensure their child meets their full potential. It was victory over respiratory infections, surgeries, occupational, speech and physical therapy, sensory integration disorder, ADHD, learning delays and hours upon hours of doctor’s appointments and consultations with teachers, therapists and tutors.

During November (Prematurity Awareness Month), Hand to Hold celebrates the resiliency and strength of our NICU super heroes through our national photo and essay contest, Preemie Power. NICU parents from across the U.S. and three other countries flooded our Website with stories of tiny babies that beat the odds. There are many who will endure lifelong medical and developmental challenges, but each brings so much joy and light into the world and the lives of all who know them.

While great strides have been made during the past decade to reduce the rate of preterm birth, the parents of more than 15 million babies born preterm each year worldwide (about 500,000 in the U.S.)  must have access to support, resources and ongoing education to equip them to be meet the needs of their medically fragile child to ensure their tiny super hero reaches his/her full potential.

In celebration of  World Prematurity Day today and to honor the preemies in the U.S. and around the world, I ring my cowbell for all the amazing preemies who inspire me daily to never give up and to enjoy life to the fullest! A special shout out to Bryce for his stellar performance in the Miracle League and Andie who skis competitively! Three cheers for Hanna and Rachel who excel on the track, and Casey and Brooklyn for their beautiful ballet! Spencer, keep mixing it up in martial arts. Lauren keep wowing the crowd with your back handsprings and Ella bring down the house with your Irish dance! You are what Preemie Power is all about!

In honor of all the precious children born early, I would love to hear about the defining moments of the preemie(s) in your life.

Kelli Kelley About Kelli Kelley

Founder, Hand to Hold - Kelli D. Kelley (TX) is the mother of two preemies – Jackson born at 24 weeks in 2000 and Lauren born at 34 weeks in 2003. She is the founder of Hand to Hold, a 501(c)(3) nonprofit dedicated providing support and navigation resources to families who had a preemie, who had a child in the NICU or with a special healthcare need, or who experienced loss. She has experienced the emotional fallout and isolation that having preemies often causes. As a direct result, Kelli has dedicated her life to offering hope and sanctuary to all parents who have had similar journeys. Contact her via email.

Comments

  1. Addie lost her first tooth today! I’m treasuring the milestone of starting to say goodbye to those ugly TPN baby teeth and welcoming the beautiful healthy adult teeth that are waiting. 🙂

  2. I love this, Kelli! My “moment” came when our 25-weeker, Andie came flying through the finish line of a slalom ski course. My ski goggles were pooling with the tears that would not stop flowing. If only we had known all those years ago, perhaps we would have worried just a little bit less!

  3. Melanie Purvis says:

    My defining moment came this summer as I sat on a NC beach watching my daughter, Halle, as she did the most beautiful cartwheel I have ever seen. Her form wasn’t anywhere near perfect in a gymnast’s eyes. But, to me, it was a “10” and left me speechless with tears streaming down my face, and bursting with pride. It’s all I asked of God for my little girl. She was born at 25 weeks, weighing a pound and a half. After struggling for 6 months in the NICU, 8 of 9 doctors predicted she wouldn’t make it. But one doctor believed in her fighting spirit and suggested a tracheostomy to save her life. All I could think of was my little girl was going to be attached to wires and tubes all her life. It horrified me and I looked at the doctor and just told him to promise me she would be able to do a cartwheel one day. That’s all I wanted for Halle. After getting the trache, she continued to fight in the NICU for another 6 months. After a year’s stay and on her first birthday, we finally brought her home with the trache and attached to a ventilator. She had her trache removed at two and also was weaned off her vent. This past spring, at the age of 9, she finally had her feeding tube removed and is now free, or shall I say, “wireless”! But best of all, I witnessed a miracle this summer when Halle did that first, ever-so-beautiful cartwheel on a sandy, North Carolina beach!

  4. This is so encouraging to see! Charlie, who just turned 1, was born at 28 weeks and 1 pound 10 ounces. It was also very hard to see pass our days and nights in the NICU. After 76 days in the hospital we arrived home, but it was a slow and steady start. Around 7 months, his growth began to increase more consistency and we began seeing more changes developmentally. Charlie just turned 1 and moves non-stop and eat’s as if he’s already a teenager:) Our latest milestone was today during our physical therapy session – he started climbing stairs as if he had done it a 1,000 times!

    Congrats to all the preemies who continue to amaze us – and their amazing parents:)

  5. Pam Marthaler says:

    I love this!!! My little guy is now 15 months and was born at 23 weeks weighing 1 lb 4 oz. We are currently going through all the follow up you refer to with constant, PT, OT, specialists, etc and it is something few people we know can truly understand. Our son is my hero and the strongest person I know! He is healthy, strong and doing amazing, despite the fact that he had very little chance of survival. I look forward to the years to come watching him grow! Congrats to you and your son on this defining moment, you give hope to many preemie parents!

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