Hand to Hold's Official Blog: Written by Parents for Parents

When Celebrating Your Preemie’s Birthday is Too Hard

There is no celebrating of Caitlyn’s Birthday, it is too hard. Every April I fear as it approaches. The day by day, hour by hour, minute by minute memories flood my mind. There is not a day that passes that Caitlyn’s memories aren’t with me, but in April it is at a deeper level.

I got sick with Preeclampsia and HELLP Syndrome April 4, Caitlyn was born April 5, Caitlyn was then diagnosed with NEC April 15, Caitlyn passed away April 16 – Easter Sunday, then her funeral was April 19.  Depending upon when Easter falls, Easter Sunday is never a day I want to celebrate.

There are many parents that come together with loved ones and do special events to honor their babies, but I can’t. I do feel some guilt in that but it is too hard for me and honestly too hard for my family. I can’t imagine us ever doing anything, rather we all do something in our own way, alone. Every April, on all of her days I go to where Caitlyn is buried. I spend time with her and leave flowers, there is always other flowers. For us, this is how we cope.

For the first three years I never worked on Caitlyn’s Birthday or the day she passed away. Now I do, but it is not easy, nor will it ever be. I know many remember her days and that helps me. I miss Caitlyn more than many can imagine, I wish it she was my beautiful 6-year-old school girl.

Elaine Jones About Elaine Jones

Elaine Jones (Canada) gave birth to a beautiful daughter, Caitlyn, on April 5, 2006. She was born at 28 weeks due to severe preeclampsia coupled with HELLP Syndrome. She contracted NEC and on the morning of April 16, Easter Sunday, Elaine held Caitlyn in her arms as she passed from this life to the next. Life changed forever. A year later, Elaine created Babies with NEC, a website to help parents, like her, share their story and network together. She personally contacts every parent and finds therapy in helping them. Elaine is the proud mom of two other children, Zoe and Phoenix. You can also contact her on Facebook.


  1. Thanks, Elaine. I can relate. That feeling comes back to live with me for a few days every year. Sometimes I talk about it and sometimes I just hold it close to my heart. I think we do whatever feels right at the time.

  2. Talk about or close to your heart….true Erika I feel the same. Tonight I learned of a friends daughter that is 2.5 yrs old just passed away. Diagnosed Christmas Day with leukemia and passed away a few weeks later….it crushed me but I am helping her…..

  3. Elaine. Monday is my daughter’s first birthday. March 7, 2012 she was diagnosed with NEC and within 12 hours it took her life. My fiance and I do not have the money to get a grave site for her yet so I have no place to go. I didn’t get to take her anywhere and she never came home. I don’t have leave time so I have to go to work and nobody there understands and I know I will be emotional and moody. I don’t know what to do for her birthday. I don’t know how to celebrate her life. Everyone says to remember the good times with Camryn and I do but all I replay in my mind is Camryn’s last few hours on earth. I never got to say goodbye or tell her how much I love her. All I can do is wonder what my baby girl and what I did to deserve this when there are so many undeserving parents out there who smoke and do drugs while pregnant and have happy normal babies but I do everything right and I lose my baby girl. Everyone says the first year is the worst but I don’t see it getting any easier. Any words of advice?

    • Ashley, today is a sad day for you and your heart must feel very heavy. A brick on your chest making it hard to breathe, and I feeling of pure emptiness. Ashley, Camryn is who will give you strength. She will help you get out of bed in the morning and move one foot in front of the other. She has never left you. I know you know that, where would we be if they weren’t. Days do pass, and your question about it getting easier….the only way I can answer that is to tell you it becomes a part of you, a new you, a new life, different….not the way you wanted it to be but different. It’s not that you learn to live with it, or that it gets easier….it’s that it is a part of you now. It does feel less raw, but it will come in waves and I believe you have to find your own therapy to get you through the years. I started a website after losing Caitlyn. It is my therapy. I connect with every parent that submits a story and help them through the loss. I help them as they help me….just as this does. Ashley, I want to help you bury your daughter. Where is she now? I am sure there is a way we can rally up Moms like us to help you. Can I help you?
      Oh and about other Moms having babies that do drugs, don’t want them….that will hit hard, forever, but again it is just became a part of you….others don’t know, they don’t understand…but in truth I never really want them too…it is much to dark for others…I couldn’t bare it for so many to know what it is like. Ashley email me at contact@babieswithnec.com. I want to help you. You can email me anytime. My website is http://www.babieswithnec.com if you want to see it too. Email me.

  4. Ashley,

    My name is Laura and I am one of the Family Support Navigators for Hand to Hold. I am so very sorry for your loss and can’t even begin to imagine the depth of emotion you are experiencing. One of my jobs is to match parents just like you with trained volunteers who have had similar experiences. I would be happy to do this for you. Please contact me directly (512)924-8655 or laura@handtohold.org. I would be happy to help you during this time in your life or help you find any resources you may be needing.

    Laura Romero

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