Monday, November 10, 2014

An Interview with Preemie Mom Michelle Stevens - Author of the Preemie Blessings Blog



Hi! I'm Michelle Stevens, mom of a micro-preemie, and author of the Preemie Blessings blog and "Bentley’s Preemie Blessing." I live near Washington, D.C., with my husband, Craig; our preemie daughter, Emily; and our shih tzu-poodle, Bentley.

This month, I'll be showcasing interviews from a handful of preemie moms in honor of Prematurity Awareness Month. Since I have written more than 100 blog posts and my readership has grown since I first started writing, I think today is the perfect day to reintroduce myself and retell the story of my preemie blessing.

Two and a half years ago, prematurity and Prematurity Awareness Month didn’t have much meaning to me. I didn’t know much about babies, Intrauterine Growth Restriction (IUGR), Small Gestational Age (SGA), or prematurity. I was a woman with an exciting career, dealing with politicians and Chief Executive Officers. Today, I am a stay-at-home mom. Conference calls have been replaced with diaper changings and bottle feedings. Prematurity and Prematurity Awareness Month has new-found meaning to me and my entire family -- all because of my strong and beautiful daughter, Emily. 

Emily is my preemie blessing. She was born three months early, weighing one pound, eight ounces. My husband and I knew that she would enter our lives early, but we never expected her to come into the world as soon as she did.

Below are several questions that I will be asking other preemie moms throughout Prematurity Awareness Month. Every preemie story is different. Below are some tidbits about my journey.

****

Question:  What was your experience like being pregnant? 

Michelle: From the get-go, my pregnancy wasn't a merry-go-round. It was a roller coaster ride, complete with twists, turns, and many ups and downs. There were countless challenges and frightening moments. I was told that I would miscarry; experienced abnormal alpha-fetoprotein test results; and was diagnosed with IUGR and SGA. 

For months, I had ultrasounds and blood work conducted every two weeks. Our baby -- a teeny tiny little girl -- clearly wasn't growing like she should. One doctor, who I now refer to as "Dr. Gloom and Doom," sighed heavily when looking at my ultrasounds. He compared my pregnancy to men attempting to survive an Antarctic winter without food. I still remember him saying, "some live, some die." Another doctor suggested that I speak to a neonatologist about the challenges my daughter would face -- and indicated that I was approaching the gestational age limit for obtaining an abortion -- which wasn't of interest to me or something that I was willing to contemplate.

I only told my family and one friend about my pregnancy. I also informed my employer (when ultrasounds started to become needed regularly). I didn't want to tell people about my pregnancy. I didn't know what to expect -- and I was afraid.

I never experienced strange cravings, like ice cream topped with pickles. I never felt my baby kick.  I didn't buy maternity clothes and didn't have a baby shower.  There were no champagne or cigar celebrations when my baby was welcomed into the world. Instead, there were tears of joy mixed with tears of fear.

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

Yes. We knew that our baby would arrive early. But we never expected her to come three months early!

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

Michelle: The Christmas presents had barely been opened but on December 26, 2012, I was 25 weeks pregnant and had back-to-back doctor's appointments. The first appointment was with the ob-gyn and the second was with the perinatologist, who conveniently had office space inside of my designated hospital. The ob-gyn warned me that I would likely be hospitalized at some point in the future, but I never expected to be an inpatient the day after Christmas.

Craig and I drove the hour-long trek to the perintologist's office. After a long and detailed ultrasound, I was unexpectedly admitted to the hospital for reverse end-diastolic flow. My baby was feeding the placenta instead of the placenta feeding the baby. In other words, a hungry customer was feeding the local McDonald's instead of the local McDonald's feeding the hungry customer.


A nurse tucked me into a wheelchair and whisked me away to the Labor and Delivery Department. That's where I filled out paperwork that I honestly didn't read. My street clothes were exchanged for an unflattering hospital gown that completely exposed my heiney. 

The doctors and nurses put me on continuous electronic fetal monitoring. Wide, stretchy bands were placed around my stomach. One band monitored my daughter's heartbeat, which was somewhat comforting since I couldn't feel her inside of me. Another band monitored my contractions -- which were completely non-existent -- given that I was only 25 weeks pregnant.

The nurses conducted Doppler readings every few hours and gave me two rounds of steroid shots -- 12 hours apart -- to help my daughter's lung development. The approach was to wait and see. If my daughter showed any signs of fetal distress, the doctors would conduct an emergency c-section.

I ended up becoming a long-term hospital patient. Although it was agonizing, hospital bed rest helped me and my daughter. Instead of reversal of flow, the doctors saw intermittent flow. My situation still sucked, but it was an improvement. 

I was confined my hospital bed and was only allowed a shower every other day for five minutes. I got a rash all over my face and torso from the hospital towels. My body was sore and puffy, so the nurses gave me knee-high inflatable compression socks to help with swelling. 

Every day my daughter stayed inside of me, was a good thing. I celebrated New Year's Eve in the hospital and made friends with the nurses and the restaurant staff  -- most importantly, the smoothie delivery ladies. After two weeks, I actually thought about changing my mailing address to the hospital.

During my hospital stay, I had a few scares. One morning, I was surrounded by a team of doctors and nurses. My daughter's heart beat had reduced.  The doctor suspected that my baby was laying on top of the umbilical cord.  I was promptly put on oxygen and my body was maneuvered into different positions in an attempt to get a better heart rate reading.Another day, I was leaking fluid.

At 28 weeks, reverse end-diastolic flow was found once more. I was promptly given another round of steriod shots; put on magnesium sulfate to help reduce the risk of cerebral palsy; placed on oxygen; and given the dreaded catheter. The doctors performed a c-section the very next day -- and I gave birth to a beautiful, inspirational, and heroic one pound, eight ounce baby girl, Emily. She is my preemie blessing.

Question: What was your experience like in the Neonatal Intensive Care Unit (NICU)?

Michelle: Our NICU experience was full of ups and downs. Emily had a private room in the NICU, which had both pros and cons. The private room helped us feel more at home and encouraged around-the-clock stays. It was nice to be able to visit Emily as often as I wanted and for as long as I wanted -- without inconveniencing another family. Our private room also allowed special and intimate moments, like kangaroo care and pumping sessions, to take place without an audience.

Although a private room worked for us, it also limited our interaction with other NICU parents. In general, I only saw other parents walking down the NICU halls or eating lunch in the NICU Parent Lounge. It was hard to develop and maintain a relationship with these parents -- especially since conversations in the doorways of private rooms was discouraged. It would have been nice to have had more opportunities to develop relationships and obtain support from others going through similar situations.

I am thankful to all of the doctors and nurses who provided Emily with special care during her 67-day NICU stay. I also feel blessed to have family and friends who support us during this journey and beyond.

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

Michelle: Medical advances played a key role during my pregnancy, hospitalization, NICU stay, and beyond.

During my pregnancy, ultrasounds helped the Maternal Fetal Medicine doctors understand Emily's growth and well-being. These special images helped the doctors determine when a C-section was required.

During Emily's NICU journey, she received Surfactant to help with lung function. And, because her vein were so tiny, she got a PICC line for the administration of nutrients and medicines.

She received caffeine injections, fortified breast milk, and fortified formula.

At the beginning of her journey, she was connected to a SiPAP machine to help with breathing. Later on, she transitioned to a high-flow nasal cannula until she didn't need any breathing help at all.

Once Emily became stable, I was able to provide her with kangaroo care which is skin-to-skin touching. This technique is called kangaroo care because it is similar to the touch between a kangaroo and a young joey.

She also received Synagis shots and multiple vaccines.

Thanks to the doctors and nurses at the NICU, as well as medical advances, Emily was given a chance to survive and thrive.

Some stories have better outcomes than others.  Emily's story is a miracle.

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

Michelle: Although we would have liked for Emily to stay in the womb a little longer, she made her debut when I could no longer offer her a suitable environment. Some may say that she was born too early, but I think she came into the world when it was just right for her.

When Emily was delivered, she still looked very fetus-like. She was perfectly formed with skin so thin that you could practically see right through it. Watching her grow in special medical beds, such as a giraffe and an isolette, was an incredible experience. Having her at home, being full-time parents, and watching her grow and change has been even more extraordinary.

Our biggest challenges concern germs and eating.

As preemie parents, we work hard to keep Emily healthy. We wash our hands more than the average bear, and have hand sanitizer in every room. 

We had hoped that Emily would qualify for Synagis this year to help reduce the severity of the Respiratory Syncytial Virus (RSV), if she catches it. Unfortunately, our health insurance company denied our request.

So, we will again limit Emily's exposure to others during flu and RSV season in order to protect her from germs. We will also require visitors to our home to have the flu shot and be up-to-date on the Tetanus, diphtheria, and Pertussis (Tdap) vaccine. 

Protecting Emily from germs is very isolating for me as a stay-at-home mom living in a new town, but I know it's worth the effort. I would much rather be over-protective of Emily's health and well-being than put her at risk of illness and possible hospitalization.

Question: How is your preemie doing today?

Michelle: Today, Emily is a happy 22 month old who enjoys dancing, singing, and finger-painting.


She is a talented artist and even has her own "gallery" in our home.

Emily continues to have feeding and nutrition issues and weighs only 20 pounds three ounces. Although she is petite, she is pretty much a typical toddler.

She is crawling like a high-speed train; babbling like a motor boat; exploring every nook and cranny of the house; and busy tormenting our shih-tzu-poodle, Bentley. Emily runs instead of walks and keeps us constantly on our toes.

Question: How has having a preemie changed your life?

Michelle: Emily has certainly changed my life, but I wouldn't have it any other way. I am fortunate to be a stay-at-home mom and feel lucky that I do not have to put her in day care. That would be hard on her, since she is still at risk of lung issues if she becomes ill. Nevertheless, I have to admit that I sometimes think about the days that I was a high-power career person. But, I was a workaholic, and that would never work with being a good mom too. There are days in which I would like to have a paycheck, but the time I spend at home with Emily is priceless.

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

Michelle: Although Emily is too young to understand prematurity, I am working very hard to educate others about prematurity through my words and actions.

I started writing the Preemie Blessings blog to help others through pregnancy, hospitalization, the NICU, and beyond. Writing this blog and interacting with other moms, including both full-term and preemie moms, is very therapeutic. I hope that Emily will be able to read this blog and reflect on it when she is older.


I also wrote the book, "Bentley's Preemie Blessing" in her honor. I plan to use this picture book to help her understand her early entrance into the world, as well as her NICU journey. This true story is told from the point of view of Emily's dog, Bentley. I have read it to her many times already and, although she doesn’t understand it all, she loves seeing and pointing to the pictures of Bentley.

In addition, I volunteer for multiple organizations that focus on increasing awareness about prematurity, including the March of Dimes, the Graham's Foundation, and Preemies Today.

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

Advocate for your preemie. If you think your preemie needs certain services or medication, then ask for those services. Don't be afraid to appeal decisions. Remember: You know your little one best. If something doesn't look or feel right, then check it out. AND, just as with any other child, love your little one with all your heart. 

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

2 comments:

  1. You are so blessed to have Emily! She has come a long way in her journey and it is mostly due to having great parents who have made sure she is getting what she needs to keep her healthy and happy. Happy 22 months, Emily!


    ReplyDelete
  2. Emily is so lucky to have a mommy like you! You've offered her such wonderful support and love!

    Katie @ Cup of Tea

    ReplyDelete