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!”

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.

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!”

 

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

 

 

 

 

 

 

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.

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.)

Preemie Parents Share the Power of Peer Connections

Preemie parents describe their experience with having a child in the NICU and how relationships they have formed with fellow preemie parents have made all the difference. If it has been 2-3 years since your child’s NICU experience and you’d like to be matched to support another family, please contact Erika Goyer. If you think you could benefit from support, call us toll-free 855-424-6428  ext. 1 or email Erika Goyer, family support navigator and fellow preemie parent. Having a baby in the NICU for any length of time can be traumatic and isolating. We want you to know you are not alone and we are here to help.

Finding Support When You’re Far From Home

Terra born at 24 weeksAlthough they call Washington State home, Loran and her husband were living in Japan when their baby was born. In May 2010, Terra came into the world at 24 weeks and just 286 grams (0.6 pounds). She was in the hospital in Osaka until November. In January, Terra’s mom, Loran, contacted Hand to Hold about how to get connected with other families. She was paired with Colleen, a fellow parent of a preemie, who has served as her long-distance Helping Hand peer mentor.

Loran’s Story:

How did you find Hand to Hold and what made you want to use this resource?

I found Hand to Hold when I was browsing the Internet looking for support groups for micropreemie parents. It sounded like a nice, easy-to-use site, so I wrote! As many parents have or are learning, there are a lot of unknowns with micropreemies and not a lot of information is available, so it is really great to
have a site like Hand to Hold.

What were some of the things you encountered being in Japan and so far away from Seattle when Terra was in the NICU?

In our situation, it has been especially trying just figuring out what kind of services we should be trying
to get for Terra. I feel like our NICU and hospital stay was very good and we got a lot of support there,
but once we came home, it seemed that there was not a lot of follow-up support. It took us awhile to
figure out that it wasn’t that Terra didn’t need follow-up, it was that there isn’t a lot of knowledge on
this side of the hospital doors about micropreemies. So as long as she was not really sick, they were
fine to just “see what happens.” We wanted to be more proactive, and so have had to rely on groups like
Hand to Hold to figure out what practices are like in the States and then try to get that support here.
Of course, there are also language issues; even though our doctor speaks English very well, a lot of the
things we have to discuss are out of his league. And truth be told, even in our own language, we aren’t
sure what we are talking about!

[Read more…]

Summer Sibshop

I wanted to spread the word that I will be facilitating a Sibshop at the Texas Parent to Parent Conference in June of this year. For those of you who are not familiar with Sibshops, they are “lively pedal to the medal celebrations of the many contributions made by brothers and sisters of kids with special needs,” says Don Meyer. Sibshops provide opportunities for peer support in a recreational context. We play lots of games, have great conversations and spend time celebrating siblings. Registration will be available shortly. If you are a parent of a child with special needs you don’t want to miss this conference and if you have additional children you will not want them to miss the opportunity to participate in a day that is just for them. Enrollment is limited so make sure to check the website listed above or this blog frequently for updates.