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.

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

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.

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