Hand to Hold, a 501(c)3 nonprofit, provides comprehensive navigation resources and support programs to parents of preemies, babies born with special health care needs and those who have experienced a loss due to these or other complications.

Hand to Hold, a 501c3 nonprofit, provides comprehensive navigation resources and support programs to parents of preemies, babies born with special health care needs and those who have experienced a loss due to these or other complications. Read more about Hand to Hold.

Jennifer Fagan and Her Daughter Natalie Grace

Fagan FamilyJennifer Fagan had her daughter Natalie Grace at 26 weeks due to placental abruption. She and her husband Mike have two other children. In addition to serving as a Helping Hand Peer Mentor, Jenn has also been helping facilitate a NICU support group at North Austin Medical Center. She shares below what volunteering to help other parents means to her.

How did you find out about Hand to Hold?

I can’t remember who specifically shared it with me, but it was one of the moms in our mom’s group that met once a week at the hospital while our kiddos were in the NICU.

What made you want to volunteer? What have you gotten out of it?

Hoping to be there for other families was our first reason. There were times we felt alone or isolated. We didn’t know anyone who had gone through delivering a premature baby. Two different opportunities really showed us the value in having someone who has gone through what you’re being faced with to support you. The first was through a weekly mom’s group for the moms with babies in the NICU. The relationships I developed through those get-togethers provided me with comfort, laughter, shared tears, strength and understanding. Second, we received an email from a family at our church who had heard of what we were going through and they reached out to us, listened, prayed and encouraged us. These things helped us to see first hand how impactful that type of support can be. To have an opportunity to be there for someone no matter how great or small, just to let them know that you are there for them, is our hope. We also want to do our best to make positive things come forth from a tough time in our life. [Read more…]

Marty and Tim Barnes and Their Daughter Casey

Casey BarnesMy entire world changed the day my daughter, Casey, was born–April 23, 2006 just a few days shy of 37 weeks gestation.  Due to a birth trauma, she suffered a severe brain injury. The brain injury led to a handful of other health complications.  The first two months were spent in the NICU.  Then, when we finally did get home, we spent the next six months just trying to figure things out.  The past five years have been spent doing everything in our power to keep her as healthy and happy as possible.  We have had some great days, and some terrifying.  My daughter is without a doubt the most amazing person I have ever met.  She has inspired me in so many ways.

One day a friend of mine asked if I had heard of Hand to Hold.  She went on to tell me the general idea behind Hand to Hold and suggested that I contact Kelli.  When I pulled up the web page and began to read the history and how Hand to Hold came to be, I could not believe my eyes.  I felt like I had just found my long lost sisters.  There were so many times that I wished, even begged doctors, for another family to talk to about our experiences.  During our stay in the NICU, I think I must have asked daily.  At times I really needed someone that had been there to just tell me it will be okay. Other times (after the first year or so), I wanted so much to be able to provide other families with what wasn’t available to us.  The fact that Hand to Hold was created from that very idea was more than a sign to me.  I knew I had to get involved. [Read more…]

Mighty Georgie

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

George F. ~ Super Hero Alias: Mighty Georgie

George FAge: 3 weeks
Weight at Birth: 3 lbs 2 oz
Weeks Gestation: 30 weeks
Time in the NICU: 3 weeks and still attending

Diagnosis, complications, surgeries?

Mother had preeclampsia and baby was endangered.

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

The main reason I believe that Georgie should be preemie of the year is because he has overcome so much in so little time. He was breathing on his own in a matter of a week. He shocked me in so many ways. As time went on and every time I go and visit that boy brings joy to my eyes. He is very strong for a preemie.  He amazingly let go of an IV in his leg in a couple of days. Because he is such a strong boy, he learned to eat more and more. At the moment we are just waiting for that boy to learn to eat from his bottle….it will only be a matter of time before he is a pro at it. I have so much faith that he is going to overcome this timing. He is quite the miracle that I imagined. He is dearly loved by many and the more that people give their thoughts and prayers to these little miracles, they will only show happiness and bring a smile to people’s faces. As much as I wish he was home with family I know that he is 100% safe where he is and one day he will look back and be amazed at his accomplishments.

[Read more…]

Dynamic Duo

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

Chris & Ben K. ~ Super Hero Alias: Dynamic Duo

Chris and Ben KAge: 4 years
Weight at Birth: 2lbs 15 oz, 3lbs 12oz
Weeks Gestation: 30 weeks and 5 days
Time in the NICU: 35 days

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

All preemies are miracle babies…and our boys are no exception.  They are were spontaneous twins (completely natural) and a first for both sides of the family.

But in all honesty, we would not recognize our sons as preemies of the year.  While they did overcome many obstacles and have grown into SUPER little boys.  We are so blessed that they had limited issues compared to many other preemies out there.

[Read more…]

Noah the Nonconformist

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

Noah H. ~ Super Hero Alias: Noah the Nonconformist

Noah the nonconformistAge: 4.5 years
Weight at Birth: 4 lbs 7 oz
Weeks Gestation: 32 weeks
Time in the NICU: 9 days

Diagnosis, complications, surgeries?

It was nothing short of a miracle that Noah has had no known residual problems from prematurity, and progressed through the “tests” of the NICU quickly.

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

Noah the Nonconformist surprises at every turn! Mom and Dad are totally unprepared for a newborn? He arrived anyway! Supposed to have lots of problems due to prematurity? No way! Hate vegetables? Ha, you just think you know toddlers (this one loves good-for-you-foods).

Sometimes Noah the Negotiator, sometimes Nocturnal Noah, Noah continues to amaze us. He’s very loving (generous beyond his years) and bright (reading before 4 years old!), and a joy to all who meet him. He’s a super hero to many–his fan club even spans to Asia!

[Read more…]

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

Enduring Evelyn

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

Evelyn M. ~ Super Hero Alias: Enduring Evelyn

EvelynAge: 4 months
Weight at Birth: 3 lbs 15 oz
Weeks Gestation: 31 weeks
Time in the NICU: 21 days

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

Once upon a time there was a preemie named Evelyn Grace. She was trooper right from the start! Mommy was the one suffering from all the pregnancy complications (placenta previa, vasa previa) and she just hung in there and endured as long as she could. We had MANY ER visits starting from 6 weeks-27 weeks due to excessive bleeding. One visit at 16 weeks we were told we were suffering a miscarriage due to all the bleeding and blood clots, and as it turned out that wasn’t the case. After an ultrasound we saw she was perfectly fine, our little trooper was enduring it all.
Our last trip to the ER at 27 weeks is when they finally decided bedrest in the hospital was our best option. There she was perfect the whole time monitored every 4 hours…the doctors were just waiting for us to get to 32 weeks or have another “big bleed” and that would be the day she would be delivered! July 10, 2010 was that very special day! We finally got to meet the precious little girl who endured a nightmare for 31 weeks.

[Read more…]

Captivating Camdyn & Courageous Cade

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

Camdyn & Cade H. ~ Super Hero Alias: Captivating Camdyn & Courageous Cade

Cade and CamdynAge: 7 months
Weight at Birth: 1 lb 2 oz
Weeks Gestation: 24 weeks
Time in the NICU: 133 days

Diagnosis, complications, surgeries?
Camdyn – grade II head bleed, PDA surgery at 2 weeks old, vented for 5 weeks

Cade – grade II head bleed, PDA surgery at 2 weeks old, vented for 5 weeks, left vocal cord paralysis, pneumothorax, currently on all ng feeds

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

My baby sister and baby brother deserve to be “preemies of the year” because they are so special to me and my Mommy and Daddy.  I knew that my Mommy was having two babies even before the doctors told her that. I told her there were two babies in her tummy, but she didn’t believe me. I was right! Our babies were very tiny (only a little over one pound each) when they were born, so they had to live at the hospital for a long time. Mommy says they were born before they got to finish growing in her tummy, so they had to grow at the hospital. My Mommy wasn’t able to hold them for a whole month. She and Daddy went to the hospital a lot, and I got to stay with my grandma which was good with me. I met my baby sister and baby brother for the first time when they were 2 months old. They were both still very tiny. I just loved their little fingers and toes. When they grew stronger and healthier, we got to take them home to live with us. Mommy and Daddy were so happy! Mommy calls me her “blessing” and the babies her “miracles.”  It would be really cool for my baby brother and baby sister to win “preemies of the year,” but even if they don’t, we’ve already won because we get to hug them and kiss them everyday. – Love,  Big Sister Brenna

[Read more…]

Super Luke

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

Luke W. ~ Super Hero Alias: Super Luke

LukeAge: 13 months
Weight at Birth: 3 lbs 9 oz
Weeks Gestation: 36 weeks, 3 days
Time in the NICU: 44 days

Diagnosis, complications, surgeries?
Luke was initially diagnosed as an IUGR (intrauterine growth restriction) baby – he just did not grow well in utero.  After birth, we discovered two heart defects, PDA and VSD, a pelvic kidney, bilateral arachnoid brain cysts and a tethered spinal cord.  Our biggest complicating factor?  Developing a severe surgical case of necrotizing enterocolitis (NEC) on day nine.  Most recently, he was diagnosed with plagiocephaly and brachycephaly, hence the reason for his awesome Aggie football helmet!

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

Luke is a fighter.  Luke is a miracle.  Luke is complicated.  Luke is a stinker.  Luke is an inspiration.  Even after all the setbacks with his additional diagnoses, he just kept making slow and steady progress.  After NICU discharge we thought we were in the clear!  Then, in the span of seven months, we returned to Dell Children’s for four more surgeries and a total of seven hospital stays.  Through the past year, we have grown into more compassionate parents to our own children, and others who have special needs. I hope Luke’s scars never fade away, they are a reminder of how far we’ve come.

[Read more…]