Leilah the Lovebug

LeilahAge: 20 months
Weight at Birth: 1 lb 12 ounces
Weeks Gestation: 26 weeks 1 day
Time spent in the NICU: 85

My Preemie Power Story:
Arriving into this world weighing a whopping 1 lb 12 oz…. Our miracle would turn out to have the greatest power of them all…. The power of Love…times 2! See, she came at a time when we thought having a child was out of our reach! With determination and faith in God, we went for it! So imagine our shock when we found out we were expecting identical twins! But like the previous paths to parenthood we traveled, this would not be ordinary.

Through highs and lows we found out we would lose one of our daughters either at birth or shortly there after. And at 24 weeks we feared this was happening sooner rather than later! However our angel baby knew her sister needed to make her mark on this world so held on and gave us two more weeks in the womb. Finally at 26 weeks, we gave birth to Abigail our angel in heaven and Leilah our Lovebug here on earth! Abigail knew our hearts needed unconditional love and before passing to heaven transferred all her love to Leilah so that our hearts would never be empty….hence the power of love…times 2!!!! The power of her love through her laugh, words, and cries, she keeps our love tank full from now until eternity!

Super Hero Characteristics:
The sweetest, happiest, determined, tenacious little girl we know!

When a Difficult Diagnosis Means Hard Decisions

Kelly P with her son

Kelly with her son John

Hand to Hold Helping Hand Peer Mentor Kelly P. is the mother of John, who arrived early with a rare congenital condition and who earned his angel wings at eight months old. She was matched with Kathy M. who requested a mentor due to her son Nathan’s diagnosis with a life-threatening condition. Together, they are navigating this difficult journey together and despite the hardship and pain – finding hope and a measure of healing in the midst of it all.

Kelly P

One of the blessings that has resulted from the difficult life and premature death of our son John is to walk with others as they face a similarly difficult road. Before having John, I had neither the empathy nor the insight into sitting with someone learning how to care for their special needs child. Now Helping Hands has allowed me to serve in a way that I might lend a hand to others, as others so faithfully lent hands to us while we needed it.

Through supporting others I am encouraged because I can share just a tiny piece of John with those who never got the chance to meet him.  His short life is lengthened whenever I share a part of his story with others who want to know how I “made it through those difficult times.”  And it helps to me to experience some of the joy of John that we had while he was with us.

Kathy M and her son

Kathy with her son Nathan

Kathy M

I am very thankful to have been matched with Kelly through Hand to Hold. She was one of the few people I could talk to about my NICU experience and all of the hard decisions we were facing without feeling like I was a tremendous burden. Everything was so heavy and I didn’t feel I needed to filter what I said to her for fear of being judged. She was in a different, yet similar situation. Through sharing the similarities in our stories, she provided me with affirmation that what we are going through is hard and there is still hope in the midst of it.

One of the most beautiful, unexpected things that came out of our meeting were a couple of book suggestions she gave me. I love to read. Reading, journaling and blogging have been very helpful for me to process all of Nathan’s special medical issues and what the future may, or may not, look like for him. The first book she recommended is, The Power of the Powerless by Christopher De Vinck and the second is Can You Drink the Cup? by Henri Nouwen. I will return to these books again and again knowing they also provided encouragement to another kindred spirit.

Being matched with another person who has been through something resembling my experience makes me feel not quite so alone and a little bit more hopeful, especially on the harder days when I really need it.

Do you need support from another parent who has been there? Contact us today. Click to learn more.

Are you a new parent with a baby or babies in the Neonatal Intensive Care Unit? Have you recently experienced a loss? Are you a direct caregiver or grandparent of a preemie?  We welcome your call at any stage of your journey from bedrest or as other complications arise during pregnancy, after the birth of a baby or multiples born premature, during or after a baby’s NICU-stay, after a diagnosis of a child’s special health care need, or in the event of a loss. We want you to know that you are not alone, and peer-to-peer support is available no matter where you reside.

Contact Hand to Hold

By phone: Call us  at toll-free 855-424-6428  or locally 512-550-3181

Email: Erika [at] handtohold [dot] org

Form: Submit a form to receive assistance

 

 

 

 

 

 

The Invisible Man

James C. ~ Super Hero Alias: The Invisible Man

James CAge: 6 months (now deceased)
Weight at Birth: 5 lb, 6 oz
Weeks Gestation: 37 weeks
Time in the NICU: 191 days

Diagnosis, complications, surgeries?

Giant Omphalocele, VSD, Cox-C deficiency

Why should your child be recognized as “Preemie of the Year”?

James personified the NICU and demonstrated without a doubt that some people need a lifetime to make a difference; he only needed six months eleven days.

From his earliest moments he demonstrated an uncanny ability to light up a room, bring family together, and soothe even the most frazzled nerves. Through 9 procedures, he never was unhappy.

Though James has left us now, his caregivers have remained close friends. What better way to be able to remember your child then with the friendships you made while caring for him that continue after they’re gone?
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Ella’s Halo

Ella K. ~ Super Hero Alias: Ella’s Halo

Ella KAge: 2 months (now deceased)
Weight at Birth: 1 lb, 2 oz
Weeks Gestation: 24 weeks
Time in the NICU: 83 days

Why should your child be recognized as “Preemie of the Year”?

My little girl didn’t get to make it home from the hospital, however she is continuing to make an impact at 3 level III NICUs here in the Minneapolis/St. Paul area and continues to be our inspiration and little hero every day. Our nonprofit Ella’s Halo was created in her memory and now helps families who are spending extended stays in the hospital with their preemie. We have donated over 650 welcome bags to families which include a reusable bag, reusable water bottle, notebook, pen, toiletry kit, and a disposable camera not to mention hundreds of blankets and toys to the NICU units as well. Ella’s Halo is providing the strength to families when they need it most by providing small little comforts of home to families traveling the NICU rollercoaster. All of this was inspired by our little hero, our little Ella. Ella may not be here today to show off her super powers, but her memory is continuing to help others in the NICU and to us that is truly preemie power.
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Heaven is for Real

Heaven is For Real by Todd Burpo and Lynn Vincentby Babs Garrett Haller, mother to preemie twins–Kate who is now 4 years old and Jack who died in utero.

I was six months pregnant with Jack when suddenly his heartbeat could no longer be heard. One month shy of the fourth anniversary of losing my sweet boy, I sent out a request for donations in his honor to be made to Hand to Hold. A week before the dreaded anniversary, a package arrived from my grandmother and namesake.

It reminded me of my first Valentine’s Day in college when a care package arrived. It, too, was from Granny Garrett (as she is affectionately known to 24 grandkids and great-grandkids.) I opened the package to reveal the book Heaven is for Real described as the real-life account of a young boy, Colton, who emerges from life-saving surgery with remarkable stories of his visit to Heaven.

I really don’t want to mention specifics about the book because I hope you will experience it the way I did, but I’d like to tell you how it has impacted my life. Jack would have turned 4 in June ~ the same age as the little boy who had the near-death experience.

As you would expect by the reference to Heaven in the title, this story requires some faith on your part. But what altered my life was the way that this book filled gaps of the unknown that were causing my heart such agony.

For four years, I asked God to comfort my sweet baby boy and tell him how much he is loved and missed. My arms ached to hold him but I told myself that he was in a “better place.” The moment I finished Heaven is for Real, I realized that Jack is the one who is probably worried about us. He is absolutely fine. He is in Heaven! And not just a “happy place,” but one that I can now see in great detail. And although the Bible is not explicit about children in Heaven, I now trust that “Jesus really, REALLY loves the children” (to steal a quote repeated by little Colton many, many times in the book.)

Having been purchased by more than 4.5 million readers, I hope you will note that you do not need to have suffered a loss to benefit from reading this book. In my opinion, it is a tremendous supplement for your journey in faith that replaces “Palestine” with “Nebraska” and prophets with a cute little boy named Colton.

On the June 5th anniversary this year, I shed no tears for Jack. Thoughts of him simply brought a smile to my face. We will be together again one day. The peace that I now have cannot easily be described. Thank you, Colton Burpo (and Granny Garrett), for giving me this gift. And thank you Todd Burpo for sharing your son’s gift with the world.

Photo courtesy Thomas Nelson Publishers.

The WONDER Twinks!

NICU Reunion, Family Celebration, Hand to Hold Birthday, Photo Contest

Leighton and Taylor D. ~ Super Hero Alias: The WONDER Twinks!

Leighton and Taylor DAge: 19 months
Weight at Birth: Leighton – 1lb 12 oz & Taylor – 1lb 14oz
Weeks Gestation: 26 weeks
Time in the NICU: 91 days

Diagnosis, complications, surgeries?
Brain cyst, Inguinal hernias, ovarine torsion and ROP.

Why should your child be recognized as “Preemie of the Year”?

I believe my daughters should be recognized because they are true examples of hope. After losing their big sister when I was 18 weeks pregnant, I was devastated when my water broke at 25 weeks. When we arrived at L&D, I was bracing for the bad news – no heart beat. But as soon as they hooked the fetal monitor on me, we heard both girls’ hearts beating
strong. Those heartbeats gave my husband and I hope that there can be a positive outcome. My girls’ fought every day to stay put but after a week in L&D, my placenta abrupted. I remember not knowing what to expect lying on the operating table. But Leighton and Taylor entered this world with the loudest cry. As soon as I heard that, I knew they would be ok. After 91 days in the NICU our girls’ were home and our lives finally began. Even with some initial issues outside of the NICU, our girls persevered.

When people see our girls and we tell them their birth weight they just don’t believe it. How were these chunky little girls so tiny??? You would never know that they were micro preemies. We feel extremely blessed because we know that many NICU families do not share the same experiences. My heart goes out to all families whose children have had or continue to have struggles. I do hope that our daughters can inspire
other families who are in the NICU that there is hope that your child can be completely healthy and live a normal life.
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Hand to Hold Adds Prayer Blog

mom holding a preemieHaving a baby born early or with a medical condition and experiencing the pain of a loss is heartbreaking and devastating. We are parents who have shared a journey like the one you are experiencing now, and we want you to know you are not alone.  These experiences are often an emotional rollercoaster – and they can take a toll.

We’ve begun this prayer blog to give you an outlet to share your heartache, your child’s upcoming surgery, NICU developments, setbacks and challenges you’ve been holding inside.   Tell us what is going on and we’ll encourage our families to remember you in their prayers and submit helpful comments of support.  Prayer requests can be made anonymously and are open to those of all faiths. All submissions and comments will be moderated.

Also, you may find it therapeutic to write  about the emotional experiences you are going through. Researchers have found that journaling can assist with healing.

You may find this blog posting interesting: 25 Intriguing Scientific Studies  About Faith, Prayer & Healing

Amy Bills and her son Oliver

Worry, anger, grief, joy, exhaustion, relief, bitterness, financial anxiety, physical pain. That sounds like a bad year by any standard. For a parent with a premature child in the Neonatal Intensive Care Unit, it’s not unheard of to experience all of those emotions in a single day.

The phrase “it takes a village” never meant so much to me as during the summer months of 2008 after the premature birth of my 28 1/2-week-old identical twin boys, Oliver and Avery, and the loss of Avery at two days old due to a congenital heart defect. My husband and I were lucky to have a close community of family and friends propping us up as we experienced all of these emotions and more. Because we were cared for, we could care for our children. But not everyone has that network. Volunteering through Hand to Hold to help prop up another NICU family allows me to bring the gift full circle.

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