Thursday, November 13, 2014

An Interview with Preemie Mom - Rebecca Wood

As part of Prematurity Awareness Month, I'm thrilled to be featuring preemie parents and their personal prematurity stories on the Preemie Blessings website.

Photo Courtesy of Rebecca Wood
I recently had the privilege of interviewing Rebecca Wood, a loving and dedicated preemie mom in Front Royal, Virginia. Rebecca's preemie blessing, Charlie, was born at 26 weeks gestation, weighing 790 grams (1 pound 11.9 ounces).
Medical advances played a key role during Charlie's Neonatal Intensive Care Unit (NICU) journey. She received surfactant to help with lung function and donor human milk to help reduce feeding intolerance and to treat suspected necrotizing enterocolitis.

Charlie is truly a miracle. She spent a total of 89 days in two different Neonatal Intensive Care Unit (NICUs). Today, Charlie is a happy two-and-a half year old. She weighs 22 pounds.
In the below interview, Rebecca discusses hospitalization due to preeclampsia; Charlie's NICU journey, personal relationships, and dreams for the future.


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Preemie Blessings: What was your experience like being pregnant?  


Rebecca: Since I was only pregnant for twenty six weeks, I barely remember what it was like. It started off as an ordinary pregnancy. I had the usual first trimester exhaustion and morning sickness. It wasn’t until twenty weeks that something seemed “off”.

Preemie Blessings: Did you anticipate that your baby would be born early? If so, why?

Rebecca:
The doctors started discussing my baby’s imminent early arrival the day I was hospitalized with preeclampsia at twenty four weeks. At first, a doctor was worried that I may have to deliver that day. Once I was stabilized, we discussed my best case scenario of delivering at 32 weeks. 26 weeks was as far as I could carry her. 

Preemie Blessings:
Can you briefly describe the events leading up to the delivery of your preemie? 

Rebecca:
As I mentioned, I was hospitalized at 24 weeks with preeclampsia. I think my husband and I were in shock. I don’t think we really believed she was going to be delivered early. Unfortunately, things fell apart much quicker than anyone anticipated. On Memorial Day at 25 weeks 6 days, my OB/GYN wanted to deliver but the perinatalogist decided to wait. It was a mistake. The next morning, I was rushed for an emergency c-section. She was a twenty six weeker by ten hours.

Preemie Blessings: What was your experience like in the Neonatal Intensive Care Unit?

Rebecca:
Terrible. I remember having to meet my baby for the first time (two days after her birth) in a large room full of strangers. I remember stifling tears as people stared and whispered. I remember being terrified, furious, mournful, sad, lost, overwhelmed, powerless, and lonely. We had to leave her every night and we lived almost an hour away. 

Things slowly improved for me and Charlie grew. After two months, we had her transferred to a NICU with private rooms and that made such a huge difference. I still felt those other things but I had my privacy and dignity. Things were quieter. I could kangaroo all day (which I sometimes did). Plus, I was able to stay with my baby if I wished. 

Preemie Blessings:  How were medical advances and technology used to improve your preemie’s health?

Rebecca:
I think the two biggest advances that helped Charlie are the pulmonary surfactant and the donor milk she received. Charlie received pulmonary surfactant a few times. Despite being delivered while her eyes were still fused shut, she never had to be intubated. 

Also, Charlie had periods of feeding intolerance that was classified as suspected NEC (necrotizing enterocolitis). I gave pumping my best shot but my milk failed to come in. I feel if she hadn’t received donor milk, she may have had bigger issues than suspected NEC. 

Preemie Blessings: What has been your favorite part of parenting a preemie?  And, what are the biggest challenges?

Rebecca:
My favorite part is watching a miracle unfold. 

The biggest challenge is being neither here nor there. Charlie hasn’t caught up with her peers but she might. Charlie currently has special needs. However, she doesn’t quite fit in that category either because she is improving and they may not be permanent. It makes things like applying for programs and receiving insurance coverage tricky. It makes connecting with other parents difficult. And, it makes balancing hope and acceptance an emotional juggling act. 

Preemie Blessings: How is your preemie doing today?

Rebecca:
When Charlie was discharged from the NICU, we were told to expect her to catch up quickly and easily by two. They were wrong. 

However, she is doing better than any doctor from her post NICU life could have expected. She’s worked hard and she’s been a fighter. She goes to therapy four days a week and has an army of specialists. Feeding, speech, and motor skills have been her biggest challenges.

I think she will catch up eventually. It just wasn’t by two. 

Preemie Blessings: How has having a preemie changed your life?

Rebecca:
Wow! I think the shorter answer would be how hasn’t it changed my life. Having a preemie rocked our lives. 

We had to move because we could not afford (after medical bills) or emotionally handle living where we did and planned. 

Our medical debt will outlive us. Deductibles, co pays, cost sharing, and so forth add up. Before parenting a preemie, we were securely wedged in the middle class. Not so much anymore. Despite everyone in our family having “good” coverage, we are drowning in medical debt. Home ownership, our next pre preemie birth planned step, is now out of our reach. 

We appreciate little things. We don’t care that we don’t have the best or the nicest. It’s a good day if everyone is healthy, everyone is happy, and my shirt doesn’t have weird stains on it.

I have strange anxieties. I didn’t think preeclampsia, HELLP, and a micro preemie birth could happen to me. I did the math once and discovered there was less than a 1% chance of it happening to me. Now during the course of my daily life, I think of the things that can go wrong. I’m constantly pushing past my anxiety. I know it’s irrational and I’m aware of it’s origin. But that doesn’t make the anxiety any less. I take a breath and move through it. 

My relationships are different. Charlie’s NICU stay defined many of my relationships for me. It showed me that I have some amazing friends. It also showed me that I was wasting my time with some people. I’ve reprioritized whom I spend time with. 

My chosen path is different. While pregnant with Charlie, I was in the process of applying to a masters degree program in global health. It was the perfect combination of my social work and chemistry education crossed with my interest in geography and foreign languages. One day, I will live abroad… just not right now. 

Currently, I am interested in health care policy, advocacy, and reform. When Charlie goes to school, I will pursue a career path in that direction. 

Preemie Blessings: How do you plan to teach your preemie about prematurity?

Rebecca:
I don’t think there is much to teach. Her birth has always been discussed around her and with her. She may think it’s “normal”.  I think it will be more shocking to her when she finds out that people are born full term. 

Preemie Blessings: What advice would you only share with a new preemie mom (and everyone reading the Preemie Blessings blog)?

Rebecca:
I don’t really have any advice because I think everyone finds their own way through it. There are no “right” ways to be a preemie mom. There were times that it was so overwhelming that I had to take things from one minute to the next. 

On second thought, I have one piece of advice: I realized that sometimes I needed things that weren’t logical or practical. I just needed them. There is nothing wrong with that. Don’t be afraid to ask for whatever it is, no matter how silly it may seem. The people who matter will understand and make it happen. 

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I'd like to thank Rebecca for sharing her incredible preemie blessing story with us today. She is an amazing advocate for preemies and for her daughter, Charlie. In the future, I hope that Rebecca is able to pursue a degree and career in health policy, and that she eventually has the chance to live abroad. 

I've enjoyed developing a virtual friendship with Rebecca -- and am pleased to report that we finally met in-person. Just a few weeks ago, I met Rebecca and Charlie for a play date, I'm excited to reunite with Rebecca at a preemie conference this weekend.

If you liked what you read today, and don't want to miss future interviews with preemie parents and other tidbits, then don't forget to follow me:  Email Subscription |Facebook | Twitter | Instagram | Google+

4 comments:

  1. Great story. I will keep Rebecca in my prays. Love Grandma Stevens

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  2. Charlie is adorable! What a blessing to you and your family.

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  3. What an amazing story. So many things you never think about if you don't have a preemie. Thanks for sharing it!

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  4. Thank you for sharing, Rebecca. Keep putting one foot in from of the other. Charlie is such a sweet girl!

    Katie @ Cup of Tea

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