Finding Someone Who Understands How Hard the NICU Experience Is

Watching a vulnerable child during a NICU stay is emotionally draining and difficult whether your child has many complications or just a few. Courtney’s son Jackson was born at 27 weeks and was in the NICU for 79 days. She contacted Hand to Hold to find a mentor to support her through the emotional roller coaster and who knew first-hand how hard this experience is. She was matched with Jessica, mom to Isaac who was born at 28 weeks gestation and who had a 50-day stay in the NICU. Despite the early birth, both boys had very minor complications and are both doing well. Both moms were glad to have found the peer support they needed to give back, find hope and heal.

Courtney B and her son

Courtney with her son Jackson

Courtney B

“There are so many benefits to receiving support!  In the very beginning, I felt like I was thrown into this unknown world and I felt alone. I found comfort knowing that someone, like Jessica had gone through a similar experience and that I could go to her for advice! When I was worried about something or scared, I would write her and she always had something helpful and positive to say!! It’s also comforting to have someone who knows your story and who is rooting for you and your little one!

Talking to Jessica made my NICU experience less scary, and gave me hope! We became friends on Facebook and it helped me a lot to see her son Issac’s pictures and how good he is doing now! Her positive words brought me happiness during a gloomy time!”

Jessica D

“Being a mentor to Courtney has also helped me continue my healing process from the premature birth of my son. When someone has a similar story to yours, it can help you see situations in ways you would not have when you were the one in their shoes. You can say “I know how you feel” and truly mean it. I was matched with Courtney very soon after her son was born and it has been amazing to get to know her and her baby Jackson through messages and photos that she shares.  

I believe that having someone that can relate to you no matter where you are in your NICU journey is extremely important. At the hospital where I had my son, there was no peer support system for parents which is very disappointing. It is a very scary time and just having an ear to listen can help tremendously. My only regret is not finding Hand to Hold sooner!”

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.

Kim & Wynne: Finding Simple Joys in Preemie Parenthood

Kim, who had her son at 25 weeks gestation, was matched with Wynne, also a preemie mother of a son born at 25 weeks. 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 allowed them to honor their unique stories and parenting journey. Together, they’ve inspired one another to find comfort, understanding and meaning in small moments even when there may be challenges yet to face.

Kim J

Kim JohnsonBeing a preemie mom is really hard some days. I was struggling with different hurdles – both my son’s as well as my own. It’s hard to relate to “termie” moms because their babies rarely face the challenges my little guy has faced, and their path is rarely as traumatic as a preemie mom’s can be. When I reached out and was given a match from Hand To Hold, it made such a big difference! Having someone available who is/was willing and able to support me in my new journey as a preemie mom has been invaluable! The main benefit for me has been having someone who’s not only a mom, but a preemie mom herself and can relate on a “preemie level.” That makes sharing and talking a whole lot easier. My match, Wynne, not only has a child with very similar needs to my own son, and but has also been through the struggles I’ve had (and am still working through) myself. She’s been there to talk to about my fears and concerns – and she really gets them! She’s helped make my path easier and I know I can text or email her at ANY time! There are no conditions and no judgement. She’s there to help me navigate this new world of being a preemie mom in a way that only another mom can help with. She’s helped me to gain perspective and has given me hope that this journey – although full of bumps and turns – does get better.

Wynne M

We all have a story that needs to be told. Our stories are unique to each one of us and to tell it makes the story more real, tangible, something to be understood celebrated or grieved. As a helping hand volunteer, I hope to welcome people to tell their story whatever it may be. I have enjoyed being matched with Kim through Hand to Hold. Kim has tremendous strength and tenacity to see the positive and bright side in her situation with her young son, Xanny. She comes to helping her son with joy, love and humor. These qualities might I add are great strengths for a new mom! For instance, Kim shares with wonder how great it is that Xanny is now wearing glasses so he can see shapes, colors and enjoys books more than ever before!! By sharing the ups and downs of her experience, she has shown me inspiration that one’s outlook determines their destiny. Though the diagnosis of her son is currently in question, Kim continues to be amazed at his gradual progress. Kim has taught me to see joy, special moments, and to relish in the small things. Kim: Thank you for sharing your story and allowing me to share mine so we could inspire each other.

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.

Feelings of Grief, Gratitude and Healing

Neonatal Maternal Transportby Cindy Marks

After a difficult pregnancy, my son was delivered nearly 6 weeks early due to the fact that I had HELLP Syndrome. He was medevaced to a larger hospital while I had to stay behind as a patient at the smaller hospital. For 30 days, my husband, one year old daughter, and I traveled back and forth from our home to the larger hospital to visit our “Superman.” When he was finally discharged, I thought that everything was over and life would continue as normal. I was wrong.

For the first year of his life, I barely had time to think about what had happened with his delivery and our NICU experience because my life was consumed with taking care of two small children. When thoughts of what had happened would creep into my mind, I would shove them back because it was never a good time to think about them. I was taken by surprise on his first birthday when feelings of grief snuck in with my happiness. I felt something must be wrong with me to feel sad since everything turned out okay. Again, I pushed it back.

Eight months after his first birthday, my friend had a premature baby in the NICU. I wanted to provide her with my support, so I was forced to face pictures of the NICU, feeding tubes, and everything else that goes along with the experience. Her experience turned out different than mine, and her precious baby boy passed away a few days later. For the first time, I cried—hard. I cried for my friend and the injustice of what had happened, and I cried for my boy who also had been in the NICU. I was no longer able to push away what had happened. It was right there staring me in the face, and I had to face it.

A Google search led me to Hand to Hold. Laura Romero immediately responded to my request and was available to provide me insight to the unique feelings I had. She matched me up with my mentor, Kimberly, and the two of us talked on the phone. I told Kimberly of how I had tremendous feelings of guilt. I felt guilty that my son had to be delivered early because of my syndrome and had to be in the NICU. I felt unworthy of my sadness of the experience because my son was healthy and alive. I couldn’t figure out why I wasn’t “over” the whole experience and able to just move on with life. Kimberly shared her experience with me. A key thing she told me was that even after 8 years, she still has moments of sadness but that those moments are briefer and further apart. She told me that you don’t ever have to get over it. It’s a traumatic experience that happened to your child. You are that child’s mother and you never want anything tragic to happen to your child. And when something tragic does happen, it’s okay to feel sad—even years later.

My son just celebrated his second birthday. A week before his birthday, I found myself curious and wanting to see his NICU pictures which I couldn’t look at before because of tremendous sadness. As I was looking at the first days of my precious boy, I realized something . . . I was smiling. Today as I watch my son running around the house playing with his sister, my heart swells with gratitude and healing.

Desinee and Amy: The Comfort of Knowing You’re Not Alone

Evan, Photo courtesy Dwyer Familyby Amy Carr, Helping Hand Peer Mentor

“Fortunately, not everyone knows another parent who has spent time in the NICU. Unfortunately, when you are that parent, you need someone who has been there to answer your questions and remind you that the feelings you feel are normal,” shared Desinee, a parent who was matched with a Helping Hand peer mentor from Hand to Hold. “The NICU can be a lonely place even when you have the support of friends and family like we did. You still feel alone because no one else quite understands what you are going through. Hand to Hold matched me up with someone who understood the ups and downs and who had been where I was. She’s been an amazing resource and shoulder when I’ve needed it.”

Desinee is the proud mother to Evan who was born at 31 weeks and who spent 26 days in the NICU. They were fortunate to have a relatively uneventful NICU stay and her son has thrived since coming home. I was matched with Desinee because she had a very similar experience to my own. My daughter, Ella,  was born at 35 weeks almost 7 years ago. Her early birth was a complete surprise and unexpected complications led to her 10-day NICU stay.

The experience of having a child born early and their subsequent hospital stay remains with parents like us for longer than most of our friends and family realize. It takes time to work through all that and realize that the complicated “stew” of emotions NICU parents like us face are completely normal. It was a trauma, afterall!  Healing takes time, but it does come.

I was so honored to be able to support Desinee during part of her NICU journey after she brought her son home. Sharing our mutual experiences and feelings was helpful for us both. Even though I didn’t know anyone who had a baby born early when my child was in the NICU, I appreciated the opportunity to lend a helping hand to a fellow mama – if nothing else to let her know that “Yes, I know exactly how you feel!”

 

Victoria Chambers Remembers Her Son James

Victoria and James, Photo courtesy Chambers Family

Victoria holding James

What made you want to get involved with Hand to Hold?

After I lost my son, James, the compassion Kelli Kelley showed my husband Matthew and me, as well as the parent mentor I was partnered with, made us want other parents to have the same resources and opportunities available to them. We spent a very long 6 months and 11 days in the NICU, and dealing with all of the issues that comes along with that makes having a parent with similar circumstances to talk to a nice safety net.

What would you like to share with other bereaved families?

I would like other parents to remember that they are not alone in their grief. Their families will never understand what they are going through, so Hand to Hold is a valuable resource to turn to. I hope that they do not feel alone and know that they will always have someone to help them in any way that they might need.

What would you tell parents about being in the NICU and facing the possibility of losing
a child? What do you wish someone had told you?

James, photo courtesy of the Chambers Family

Make every day count because you never know when it will be the last. Make sure your baby knows that he is loved and that he is special just the way that he was born. Celebrate every milestone and achievement – it’s the small things that matter the most (like bath time for Matthew and me). A very special person dear to Matthew and me told us that some people need 60 or 70 years to achieve what they were put here by God to do, others may only need 6 months to achieve their purpose in life.

The only thing I wish I had been told sooner was that my son was going to be in the NICU for a while and that I may want to save some of my maternity leave. He was sick for such a long time that I was always running low on time off. I wish the doctors had been honest about that so that I could have just gone back to work.

What do you think bereaved families can do to support each other?

Remember that everyone loses a child differently and that we are all affected differently, but all babies are special no matter how short a time they may have been here.

We know that you have a new daughter. A lot of families worry about getting pregnant again and having another child after a loss. What would you tell them?

Kathryn, Photo courtesy Chambers Family

James’ Little Sister Kathryn

Not to worry. Babies are something precious to be enjoyed. No one can tell you when you are ready for another child. Only you and your partner can decide that. You also both have to be ready to accept a new child. Matthew and I decided to have more children only a few months after James had passed away. He was my first child and I never was able to take him home. After he was gone I missed caring for him but I knew he was in a better place and he was no longer hurting. We didn’t allow our family and friends any part of our decision because we felt like it was none of their business. There are some people who think you will never be ready. Matthew and I waited until after my great niece was born to see how we would react to her and the fact that she was born so perfect and healthy. When I was able to hold her for the first time and see the “normal” process of birth, we felt that we were ready together to have another baby. I would not trade my Kathryn for anything and she was not a replacement for James. Make sure you are not trying to replace one baby with another. As soon as you feel ready and your partner is ready, then have another child and enjoy every moment of it.

I also would like to share with families that Matthew and I chose not to hide James from Kathryn. His pictures are up in our house and he is still very much a part of our family. When we go to Mass we teach Kathryn to ask James for our prayers. Part of her middle name (as well as any siblings she may have) is James so that she will always know that her big brother is watching out for her and protecting her. We also have celebrated his birthday every year to keep him close to our hearts.

Meet Lisa Ruley and Her NICU Grad, Sloane

Helping Hand Peer Mentor Lisa Ruley describes the familiar kinship of a NICU experience and why she decided to get involved to support other families new to the experience. Her daughter Sloane, now 5, was born at term and faced complications that landed her in the NICU with more equipment and tubes than most of the babies there who were smaller than she was. Volunteering has tremendous meaning for her because only other parents who have been on the NICU rollercoaster really understand the ride.

Lisa and Jason Ruly, Photo Courtesy Ruly Family

Meet Lisa and Jason Ruley with daughters Sloane (5) and Morgan (3)

How did you find out about Hand to Hold?

I had heard of Hand to Hold through the children’s clothing store, Baby Bugaloo.  It’s in my neck of the woods and just happens to be owned by my neighbor.  Baby Bugaloo has sponsored a few fundraising events for Hand to Hold.  Then, while attending the Seton Medical Center NICU Reunion Picnic, I saw that Hand to Hold had a booth set up with information about volunteering.

What made you want to volunteer?

I have been looking for volunteer opportunities, and while there are countless great causes out there, there wasn’t one that I felt especially connected to.  When I saw the mission of Hand to Hold, I knew that it was something I could wholeheartedly get behind and help with because of our NICU experience.

What has connecting with other parents meant to you?

To me, connecting with other parents means validation.  Having a baby in NICU is an experience that is unique and has an effect on you long after your child has “graduated.”  It takes time to learn to cope with that kind of stress. No one can relate to this except parents who have been there.

What would you like to share with other NICU families?

I would like to share that it’s okay to feel cheated out of the experience of having a “normal” delivery or “normal” baby.  It’s okay to grieve that loss.  As a family expecting a baby, you have this picture built up in your mind of going into the hospital, having an uncomplicated delivery and leaving a few days later with a healthy baby.  When this doesn’t happen, it’s devastating.  It’s okay to be devastated.  It doesn’t mean you aren’t happy to be a parent or that you aren’t completely in love with your child.  It just takes a while to find what normal is going to be for your family.

What would you tell parents about being in the NICU? What do you wish someone had told you?

I would like to tell parents to let your support system support you and be specific.  We were so blessed to have many family members and friends support us during our stay at the NICU.  And while we appreciated so much that people wanted to visit us and show their support, it was always tough to carve out time for visitors when you are working around a NICU schedule, pumping every three hours, etc.  I wish that someone would have told me that it was okay to tell that support person that our schedule didn’t leave much time for visiting, but we could really use someone taking our dogs for a walk, or giving me a ride home once my husband had to go back to work, or doing one of the many things that needed to be done.  I know now that these wonderful people would have been glad to do any of those things.

How do you think you NICU experience was unique? How did it differ from what the other parents around you were going through? How was it the same?

Our NICU experience was somewhat unique just because Sloane was a term baby.  I’ll never forget entering the NICU where the baby’s footprints were displayed.  You could pick out her footprint in an instant because it was so much bigger than all of the other babies!  She was originally on a high frequency ventilator, so she took up more space and had more equipment than those babies around us.  All things considered though, I think our experience was more similar to the other parents than unique or different.  We were all on a similar journey.  We were learning a new medical language, learning to bond with our babies despite tubes and equipment, and getting to know the doctors and nurses.  Also, despite the different reasons we were in the NICU, all of the parents were learning to deal with the stress of having a sick child and riding a roller coaster of emotions.  These similarities are exactly why Hand to Hold can make such a difference in the lives of NICU families.

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Daddy Clay from DadLabs.com Shares His NICU Journey

Clay Nichols from DadLab.com, an online resource for Dads, shares the story of his son’s early birth. Born at 30 weeks gestation at just over 4 lbs, his son is now 14 years old. Daddy Clay reflects on the difficult experience of having a child born premature and the emotional turmoil he and his wife endured during those early days.  Clay wishes that Hand to Hold, a nonprofit provider of peer support to preemie parents, had been in existence when their son was younger. He encourages families who have babies in the NICU to connect with Hand to Hold. (Reading this on a mobile device? Click here for a direct link to the embedded video.)

Site last updated June 19, 2017 @ 11:09 pm