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.

Madison & Janet: Connected Through Their Daughters’ Legacies

Madison, who recently lost her daughter Zoe, was matched with Janet, also a bereaved mother. They both explain what it has meant to them to participate in Hand to Hold’s Helping Hand program, which matches peers with one another for support. Such meaningful exchanges have now blossomed into a beautiful friendship, a legacy of their two daughters.

Madison M

Madison MooreAs a first time mother afflicted with the hardships of losing a baby full-term, the pain and heartache of it all is a life changing experience. The benefits of receiving support from my match with Janet has been an essential part of pushing through the extra tough days and talking with someone who really knows what’s going on and knows how you may REALLY be feeling has made all the difference in the world for me. Being a person who has always been independent and strong for others was something of a disadvantage for me when I really needed someone to talk to about my feelings, concerns, and personal keepsakes such as my daughter Zoe’s death certificate.

Each day I hope to be a woman of strength to walk through life knowing that I have the love of my daughter with me and the blessings of being able to see her for the last time even though it would be my last. The experience of chatting with Janet has made me a better person in knowing that you’re not alone. I still have a long way to go in my grieving process since this would not quite mark the first year. I’m just very grateful to have someone who is willing to listen and be empathetic when I feel as if the loss is too much. Thanks for giving me such a great match….

Janet C

I love the honor of supporting another grieving mother. It allows me to carry forward life-to-life ministry and also honors my daughter’s legacy. Being matched with a woman who has experienced a similar loss is also beneficial because I am able to understand and empathize with her loss.

Recently, we discussed some of the details of the paperwork involved with losing a child. It’s not something that parents want to manage, but have to. I was able to share my experience with it and give Madison some advice in her situation. This is just one of the ways I’ve found this match to be beneficial.

The most important aspect of the match is that two women, who never would have met, are now becoming friends because of the children they no longer have with them. And hopefully we will get to meet when I travel to Texas this summer!

Peer Support Was My Lifeline

By Donna Mossholder

ThurstonWhen my son was born prematurely, nothing could have prepared me for how my life and the life of my family would change.  That deer-in-the-headlights feeling when they wheeled me into the NICU for the first time, seeing my poor 1 pound son hooked up to what seemed like a million wires and machines, doctors and nurses fluttering about like moths to a light, medical terms flooding what little brain capacity I had left, not knowing if my son was going to live or die: it was an all encompassing surreal nightmare I wished I could wake up from.  What I needed more than anything was someone to lean on, someone to be there for me emotionally, to walk me through the nightmare: But not just anyone.  Not the nurses, not the doctors, not the therapists not the social workers, not one of them, no matter how many years of experience working in the NICU, could understand the gravity and emotional whirlwind we were going through.  

Mossholder familyThat is why I will always be forever indebted to Hand to Hold.  Hand to hold understood what I needed because every single person that comprises this amazing organization has gone through it before in some way, shape or form.  They held my hand through the worst of times, gave me comfort when I didn’t have any, sheltered me from wave after wave of bad news.  The peer support, the many hospital visitations, phone calls, emails and events throughout my son’s year long hospital stay and eventually his passing helped to sustain me, gave me some relief at times I needed it most, and gave me hope when I thought there was none. They continue to be an integral part of my life and have helped me realize that through helping others, healing begins to take place.  I cannot recommend this organization enough to those in need.  They have helped me and my family so much and we will forever be grateful they were there to hold our hands when we needed it most.

Chloe the Conqueror

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

Chloe G. ~ Super Hero Alias: Chloe the Conqueror

Age: 8 months 10 days at death
Weight at Birth: 1 lb 8 oz
Weeks Gestation: 24 weeks
Time in the NICU: 211 days

Diagnosis, complications, surgeries?
Micro preemie, bowel rupture, PDA Ligation (open heart surgery), pneumothorax, colitis, multiple hernia repair, 3 bronchialscopes, nissen funduplication, g-button placement, compartment syndrome, abdomen opened and internal organs placed in a silo, 4 abdominal surgeries to close her abdomen, tracheostomy, 3 central line placements, multiple pneumothorax’s, multiple chest tubes

Why should your child be recognized as “Preemie of the Year”?
Chloe Elizabeth Gallaway was known to the Scott and White NICU as “drama queen” or “diva.” To us she was known as precious. Chloe survived more physical trauma than the Scott and White NICU has ever seen an infant endure and survive. Survive them she did! She fought her way to the PICU where she continued to make a name for herself. She was vivacious, filled with more tenacity than most people encompass in a lifetime. Chloe was determined to live, love, and be loved. Her 8 months and 10 days, though enduring 20 surgeries, changed the lives of everyone around her. She left an imprint on this world that can never be erased. Chloe is our hero. She changed more lives in a tiny amount of time than most people change in a lifetime! Chloe’s funeral was standing room only. There were more than 300 people in attendance. The stories told of Chloe by the Scott and White staff and other NICU familes confirmed what our hearts already knew about Chloe. She was special, one of a kind, and never to be forgotten! I believe Chloe should be the preemie of the year because she exudes the essence of all preemies, a strong will to live, love, and flourish in a body that was fragile, weak, and underdeveloped.

[Read more…]

Melissa McSpadden and Her Sons Landon & Gavin

October is National Pregnancy & Infant Loss Awareness Month.  78 infants are lost each day in the U.S. — 2,474 babies in Texas each year.We were so excited to give our two-year old daughter Camryn a sibling so imagine our shock and joy when we found out we were having twins!

For 4 months the pregnancy progressed normally. We found out they were boys and identical. We started on their nursery; painting it blue, buying the furniture, the bedding, and even several matching outfits.

At around 20 weeks I had tremendous pain and swelling in my belly. My husband took me to the emergency room and the ultrasound revealed that I had excess fluid in the sac where the boys were growing. A specialist would see me the following Monday but that appointment never came.

In the middle of the night I had a “rolling” feeling. “There is no way this could be labor”, I thought. I was only 22 weeks and 5 days along. We sped to the hospital, running red lights and all.

[Read more…]

Parents

Brens-family-in-NICUPregnancy is a gift and babies are nothing short of miraculous. Sometimes, however,  things don’t go as planned. If you are a parent whose life has been changed by a NICU stay we invite you to join the Hand to Hold community.

We are parents of preemies, parents of children with special health care needs, and parents who have suffered the loss of a baby. We’ve counted A’s and B’s. We’ve celebrated successful feedings. And we’ve suffered setbacks along the way. But we have survived – and even thrived – in our new role as NICU veterens.

Everyone’s journey is unique, but the road is similar. And the impact is undeniable. Especially the emotional toll on you and your family. Hand to Hold provides support when you need it the most and opportunities for you to help others when you are ready.

Do You Need Support?

Request Support or a Peer Match

Would you like to talk to another parent who has been where you are now? You can request a Helping Hand through our  peer-to-peer support program. If you are interested you will be matched with a trained Helping Hand volunteer. You can connect with your mentor online, by text, or by phone. (Peer support is also available for parents who have suffered a loss.) Whether you just have a few questions or want to talk to someone who “gets it” –  we want you to know that YOU ARE NOT ALONE. Call our toll-free hotline or contact us via email for assistance. CALL 1-855-H2H-NICU, 1-855-424-6428. Or email support [at] handtohold [dot] org

Tap into Information for Parents Like You

Hand to Hold prepares a monthly e-newsletter with helpful articles, information on upcoming events, and opportunities to connect with other parents. Our print newsletter Hand Prints is delivered to parents in NICUs and medical clinics to give them the information they need and invite them to become a part of our larger NICU community. In addition, as you explore HandtoHold.org, you’ll find links to:

Do You Want to Help?

Your experience is valuable. Sharing what you’ve learned can make a lasting difference to a fellow NICU family. Being a mentor to others can also help you feel connected and empowered! Join our volunteer list to request a volunteer role.

Help Us Reach Other Parents

With the touch of a button you can help spread the news that NICU families are no longer alone. With your help, we can instill hope and provide vital resources to empower families to achieve health and stability. Please consider sharing information about Hand to Hold with your friends, family and health care providers. You can connect with us here or on social media sites. Please join the conversation – and join our community of  parents and professionals. Do you want to bring services and support to a particular NICU? Find out how to sponsor a NICU Resource Library.

Share What You Know

Help us improve our online resource directory by recommending websites, books, health providers and other resources that have been helpful to you. Consider contributing to our PreemieBabies101 blog.

Make a Donation

Donations of any size will be thoughtfully applied to further the mission of Hand to Hold. Contributions may be made simply in the spirit of giving, in honor of a loved one or in appreciation for a caregiver. Read more about how Hand to Hold empowers parents. For a limited time lifetime recognition is available by joining the Founder’s Circle.

Visit our Frequently Asked Questions section to find out more.

Site last updated April 16, 2017 @ 9:38 pm