March for Babies ambassador family shares their story

March for Babies

The Orrs, representing the Coastal Empire as the 2020 March for Babies Ambassador Family (courtesy March for Dimes)

SAVANNAH, Ga. (WSAV) — One local family is sharing their story to inspire others ahead of this year’s March for Babies event.

Though it’s usually a 3.1-mile community walk, due to the COVID-19 outbreak, the event will instead be held virtually. It’s all in an effort to benefit the March of Dimes, which works to improve the health of mothers and babies.

It’s an organization that’s helped many, including the Orrs, representing the Coastal Empire as the 2020 March for Babies Ambassador Family.

Paula Orr says she’s “beyond honored and humbled” to have been chosen this year. She says March of Dimes helped her when her daughter Charley Orr was born prematurely.

Now, Paula Orr says it’s her mission to help raise awareness and funds to help prevent early childbirth.

“While we are grateful for Charley and her health, no family should have to endure a baby being born early,” she said.

Read the ambassador family’s full story below.

One Christmas as a little girl, I received a set of preemie triplets. These three little babies were so tiny and their accessories were so small. At that age, I never thought of micro diapers and itty bitty bottles as being a part of real life, but fast forward to 29 years later and my pretend days became a reality.

Brandt and I married in the fall of 2011. We always teetered on the idea of starting a family as I was happy with my growing career and our time being just for us. But while we were “still deciding”, I became pregnant with our first in the fall of 2013.

We were one of the lucky ones that got pregnant on our first try, and my pregnancy started out as a total dream. No morning sickness, no weird cravings, no restlessness – everything was great until it wasn’t. I went in for a routine appointment in March, 2014 only to be surprised that I was in pre-term labor. I had no pain, no contractions, no warning signs that I knew of- I just thought Carter was a little more active that day than usual, but turns out it was more than that. After being sent to the hospital for observation and to get the contractions to stop, I was sent home on strict bed rest and Procardia twice a day. I’m happy to report that I was able to carry Carter to term, and he delivered at 38.5 weeks at a healthy 8.2 lbs.

Fast forward to 2017 when I got pregnant with our second child, Charley Kate. As one can imagine, we (specifically me) had reservations about having a second child. There was nothing appealing or intriguing about the possibility of having to do bed rest again. My job had been so gracious and understanding the first time around – I shuddered at the thought of having complications and having to ask for accommodations a second time. Also, who said that I would experience the same thing twice, as everyone has always said “no two pregnancies were the same?” So here we are, pregnant in the fall of 2017 with baby number two.

The second pregnancy was much harder than the first and Carter was an easy one. I had less energy, a little nausea and a lot of restlessness. I don’t know if it was because I was older, I was keeping up with a toddler, or carrying a girl vs a boy but this time it felt different.

Here is where our March of Dimes story begins.

At 18 weeks, just a few days after Christmas in 2016, I went in for a routine checkup and anatomy scan. We were so excited to find out if this little nugget was going to be a boy or a girl. Well, within a few minutes of finding out we were having a girl, we found out I was 1 cm dilated.

From that moment, Dr. Helmken and her team worked quickly to contact and connect me with Savannah Perinatology to be evaluated and complete a cerclage as quickly as possible. I went from Candler to Memorial via ambulance and in through the ER. Everything happened so quickly but I felt that time was standing still.

I was admitted to the hospital. We met with Dr. Art Baker, who sat with Brandt and I, to discuss what a cerclage was, what our options were, what the complications associated with the procedure were, what potential outcomes looked like, the whole nine yards. Our future was looking at best case scenario; I would carry her until around 26 weeks if I continued with the cerclage. We could not understand how a baby could survive at 26 weeks, but we knew that our little girl deserved a chance to be in that small percentage of survivors.

The cerclage was performed on Dec. 28. I was sent home on bed rest for 2 weeks and returned to work part time after those 2 weeks were up. On Jan. 30, 2017 at an appointment with Dr. Keisha Reddick, she told me that I was continuing to dilate despite my cerclage holding and admitted me to the hospital until further notice. I had the thought of doing a second cerclage – “if one cerclage isn’t enough, just add another”. The very next day, Dr. Lynn Leaphart who was the physician covering the hospital that week quickly and calmly explained why that thought process wouldn’t work and said it was best to stick to being hospital bound. At this point, we were back to just hoping for the best. On day one of my admission, I was given steroids to help with lung development and magnesium to help ward off preterm labor and reduce the risk of cerebral palsy, which is common in babies born prematurely.

I felt as if my whole life was just put on hold in a matter of minutes. I went from doing great, back to work, caring for my child, being a wife, all the things that make up who I was, to sitting in a hospital bed until further notice. I will add, that although I didn’t like it at the time, I’m thankful for Dr. Tony Royek for not giving into my pleas to let me go home after almost 4 weeks in the hospital because that notice we were waiting on, expired on Feb. 18, 2017, when our little girl, Charley, was born at 1:37AM weighing in at 2.2 lbs. and only 14 inches long.

The NICU transport team filled my delivery room with all of their large, bulky and noisy equipment in preparation for Charley’s arrival. They were steadfast in their processes and worked quickly to get her stable and over to the NICU. Brandt and my mom followed them over to the NICU and waited for an update.

When I was able to go visit later that morning, one of the first people I remember meeting with was Trisha with March of Dimes. She was so kind, so gracious and so helpful. Navigating the NICU is no easy task – understanding regulations, times to visit, protocols on hand washing, our resources for support – all of that was so overwhelming, but she was patient and quickly became a friend and valued resource. Charley did so well so early on that we were hopeful that she would be in and out by her due date in May. But as we had already learned, nothing ever goes as planned.

In April, Charley was up to 4 lbs. She had moved into an open air bassinet, got to wear clothes, was regulating her own temperature, and had started on bolus feedings. Everything seemed like it was happening as it should and we really would be home by her due date in May. Well… as we began working with her to take a bottle (I pumped religiously and had no interest in breastfeeding due to the terrible experience I had with Carter) she began struggling to breathe while eating. Later that month on April 19, she had to have a bronchoscopy with possible trach placement. We all breathed a sigh of relief that no trach was needed at this time.

After a couple weeks of rest, we started the process all over with attempting to feed her but had no success. She continued to stop breathing while eating and on May 9, 2017, she had a repeat bronchoscopy but this time with trach placement.

So here we were, so close to coming home (so we thought) to now having a new hurdle to jump – a baby with a trach. We were not prepared for this, but no one ever is. We reached out to March of Dimes and the NICU team to start helping us learn. We needed to understand and figure out our new life as a family who had a baby with a trach. We were quickly provided resources on how to start preparing our home, given education and even dolls to practice on for cleaning and changing the trach.

As it turns out, if you cannot change your baby’s trach, you cannot take your baby home. So we put fear and worry aside and became experts in all things trach. At this point, we are feeling confident and positive about everything as we are heading into June working with Charley to feed over her trach, and she takes a step back. It just wasn’t working. Her vitals dropped every time she tried to eat or she would throw up (which is extremely dangerous for a trach baby). We were going nowhere fast. I asked for options. At this point, I was exhausted and ready to go home. We were looking at 4 months inside the NICU, her due date/possible going home date had come and gone. We just wanted out! I remember telling the NICU team that I would figure out how to bottle feed her once we got home. I just wanted to go home and wanted to know my options on how to get us there quickly.

They listened to me and arranged a consultation where I met with Dr. Miller Hamrick. He told us we could place a peg tube in her stomach, and he could complete a procedure called nissen fundoplication (lap nissen) that would help reduce her ability to throw up. I was in. We scheduled the procedure and were on our way!

The next couple of weeks were spent educating us on how to hook up, clean and change her feeding tube, and continue to care for her trach. Then the glorious day came on June 25, 2017 that we were heading home with a 9.7 lbs. baby complete with a trach and peg tube. Our 129 days inside the NICU were finally over.

Fast forward to coming home. We still had our struggles but overall, Charley did amazing. Her trach was removed on Aug. 28, 2017 and her peg in Dec. 2017.

Looking at her today, you would never guess that she was born at just 25 weeks and there is no way we would be where we are without the March of Dimes support, the incredible NICU team, and the providers of Savannah Perinatology who helped me keep her in as long as possible. These reasons alone are why I am an advocate for the March of Dimes and beyond honored and humbled to have our family represent the Coastal Empire as the 2020 March for Babies Ambassador Family.

The education, the resources, and the support are just a few of the things that March of Dimes offers to families in need during these trying and difficult times. As the chosen family, I will work to help be a part of the process to help educate families and women of childbearing ages, to help raise funds that bring awareness to women, and support their efforts to help prevent early child births as much as possible.

While we are grateful for Charley and her health, no family should have to endure a baby being born early.

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