Superman AJ

AJAge: 2 years
Weight at Birth: 1lbs 8 ozs
Weeks Gestation: 25
Time spent in the NICU: 110 days

My Preemie Power Story:

Avery aka AJ and his twin brother, Archer were born on July 21 2011 the day I turned 25 weeks. Archer was born first and let out a little squeal amd tried breathing on his own. AJ had to be resuscitated, he has been a fighter from his very first breath. The boys were sent to the NICU to fight for their lives. After three weeks, AJ’s brother passed away from a blood infection. It was rough sailing from there.

AJ was intubated until he was 6 weeks old and that was the first time mommy got to hold him. He fought off multiple infections which scared his mommy and daddy very much. He had chronic lung disease and multiple blood transfusions. When he was finally able to come home he weighed 5lbs and was still on oxygen and an apnea monitor and had seven different medications. The first year was tough and slow going, but with the help of his Guardian Angel he has pulled through and thrived. He is now a rambunctious two year old with no oxygen or monitors or meds. He is our little Superman

Super Hero Characteristics:

Fighter- He fought for his life from the beginning and has beat all odds
Strong- AJ has scars on his hands, arms, legs amd bellybutton from all the needles he had to endure. Most of his veins were blown. So not much phases him now. He is the toughest boy I know!
Loving- He is so caring and loving. He gives the tightest hugs and always seems to know when to comfort someone.

Mighty Mouse

KaitlynAge: 11 months
Weight at Birth: 1 lb 1 oz
Weeks Gestation: 26
Time spent in the NICU: 91 days

My Preemie Power Story:

On November 11, 2012, I gave birth to twin girls, Kaitlyn and Kristen. I was 26 weeks gestation when I had a placental abruption and learned that my daughters had to be delivered immediately via c-section. I had no idea what the future held or what the fate of my two daughters would be. When I awoke from surgery my husband told me that he saw the babies as they were brought up to the NICU. He told me they were both really small, but they were both moving and we had to have hope.

Kaitlyn (Baby A) weighed 1lb 1 oz, 12.5 inches and Kristen (Baby B) weighed 1lb 14oz, 13 inches. Both girls were immediately placed on ventilators and we learned that while both girls were in extremely critical condition, Kristen was suffering from pulmonary hypertension and every minute would count. [Read more…]


JohncarloAge: 17 months
Weight at Birth: 2 lb 6 oz
Weeks Gestation: 28 weeks
Time spent in the NICU: 85 days

My Preemie Power Story:

After suffering two losses, an ectopic (surgery needed and lost a fallopian tube) and a miscarriage, my husband and I found out we were pregnant after the doctor recommended clomid, due to only having one tube. Well…a short time afterwards! Not only were we pregnant, but we were pregnant with TWINS! We went in for our 16 week check and we were finding out the sex! We were so excited! Well that excitement almost immediately turned into fear, sadness, array of emotions that no expecting mother should ever have to face.

It turns out my cervix was shortening and I had to get an emergency cerclage and go on complete bedrest for the remainder of my pregnancy. Needless to say we were in total shock and disbelief. I had a cerclage placed and stood on my head pretty much. I was monitered weekly and all was going ok, just taking it day by day.

One evening I was sitting on my couch ( laying) and all of a sudden my water broke. It was out of control. After sitting in NYC traffic, having a police car and ambulance intercept us I finally made it to the hospital. I was immediately sent to labor and delivery.  I thought this can’t be happening I am only 27 weeks!!! I was closely watched, received steroids and drugs. My boys were doing ok, the one whose sac broke was hanging in there strong! About a week later I woke up feeling off, something was not right. As it turns out I had fierce infection which was taking over my body. I was immediately rushed back to LND and had an emergceny c section. My husband came up as soon as I said I was feeling off, at 12:00 on May 16th 2012 I gave birth to my two boys Andrew Joseph 2lbs 8 ounces and Johncarlo 2lbs 6 ounces.

The boys did not make a peep. I was in excruciating pain and so unbelievably scared. Both boys were taken to NICU, I couldn’t hold either of them. After fighting for 2 days my son Andrew lost his battle and went to heaven to be his brother’s angel. I was still fighting this fierce infection and was very ill, can you imagine what a 2 lb baby was trying to fight? My other son spent a remaining 85 days in the NICU, we had lots of ups and downs, lots of fear, sleepless nights, crying, praying but most of all strength, I somehow found the strength for my little boy. After 85 days he came home and is now a happy healthy 17 month old boy. I know he has an angel watching him and that is what gets me thru the day! Some people in their lives aren’t able to say that they get to meet their superhero, well I am proud to say that I gave birth to mine!

Super Hero Characteristics:

Strong, Determined, Smart

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!

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.

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.