Bee Mighty: A Special Guest Post for Prematurity Awareness Month – by Candace Richter

Most woman dream about being a mother. As a child, we dress baby dolls and rock teddy bears to sleep. As a teenager, we fall in love and dream about having the perfect family (and swearing we will never be like our own mothers). Then, as an adult, the desire becomes real as our heart grows exponentially to include the thought of having a baby.

I would be willing to bet, not one of those dreams has ever included having a premature child.

15 million babies are born prematurely each year. Millions are affected with disabilities, unlimited surgeries and endless struggles. One million of these babies will not make it.

If you or someone you know has been thrown onto the roller coaster of having a preemie, buckle up. The ride is long, terrifying and emotional. Fortunately, one day you will be able to look back on this experience, a totally different person than when you began – and with a miracle by your side.

Our son, Shaw, was born at 27 weeks gestation, weighing only two pounds. He spent 122 days in the Neonatal Intensive Care Unit.

I wish someone had been able to give me a roadmap to navigate the NICU; however, every family has a different course. With the hope of making it slightly more bearable, I have compiled a short list of my personal experience of surviving the NICU:

1)      Stop Telling Your Story – Before we could make it to the hospital’s parking garage, my husband and I were on dueling cell phones updating our parents, church, friends and family about the daily (sometimes hourly) changes with our son. While we relish the support from so many, we were reliving the emotions each time. Whether you use a social media website like Facebook or CaringBridge, even mass emails, share your updates, draw from your support system – but don’t spend all of your time outside of the NICU walls returning phone calls and reliving the turmoil. This will ultimately allow you more time and energy for yourself and child.

2)      Choose a Primary – Many hospitals are structured to provide a primary nurse (for days and nights) to streamline the best care for your child. When our primary nurse was working, she would be Shaw’s primary care provider. The relationships that we have with our primaries were critical for our journey. The trust that we have, the conversations that we share and to know that these women (in our case) are also pulling for your child. They will be you and your child’s advocate.

3)      Manage Meals – When Shaw was born, his big brother, Nash, was only fifteen months.  The balance of trying to provide a stable household for our baby at home, while living at the hospital, overwhelmed with worry was the most challenging. A dear friend volunteered to manage meals for us. She set up a website and shared it with everyone we knew. She included the following parameters that made our lives much easier: 1) Delivery by 6pm  2) Only disposable dishes 3) List of allergies  Not having to worry about cooking, stripped my brain of one less responsibility. The most important benefit was the time that I would have been preparing dinner; my husband and I were able to be with our oldest son.

4)      Say Yes (and No!) – In addition to meals, people will offer to pray for you. They will offer to make grocery runs, babysit, run errands, etc. Say yes – even if you are not accustomed to accepting help from others. Preserve your energy for taking care of yourself (ie sleep!). Say NO – to thank you notes, to obligations, guilt and guests. Make your world small. Give yourself a break and be okay with it.

5)      One Hour at a Time – The old cliché, “Take one day at a time” can even seem overwhelming at times. Some of the best advice I received while in the NICU was to allow yourself ‘crisis’ status. Set short-term goals, (yes even surviving one hour at a time) and know that you are one step closer to going home.

November marks Prematurity Awareness Month and the launch of the Bee Mighty Foundation. Bee Mighty is a foundation established to provide financial assistance to the parents of micro-preemies battling medical challenges with limited financial resources.

Bee Mighty (www.beemighty.org) was established to allow families to focus on each other and concentrate on the development of their preemie, without the added stress of financing much needed therapy. The fund is a nonprofit 501(c)3 with an advisory board comprised of doctors, nurses, social workers and micro-preemie parents.

The NICU ride is long, but it doesn’t stop when your baby comes home. Life as you knew it (or dreamt it) will be different. Somehow, along the way – it becomes richer, clearer and more fulfilling than anything you had ever imagined.

For more information on our son, Shaw, his miraculous triumphs and our personal journey through the NICU, please visit www.mightyshaw.blogspot.com. Also, visit Bee Mighty on Facebook to learn more.

 

 

 

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