In honor of November being National Prematurity Awareness Month and November 17th being World Prematurity Day, I’ve put together a few questions that many of my readers and fans have asked me over the years- questions in which the answers will help others know that they are not alone and will help them heal.
Today I’m thrilled to share Stephanie Vaughan’s story. Both Stephanie and her preemie twins are inspirational!
Here is Stephanie’s bio…
On October 29, 2010, Stephanie experienced the unexpected birth of her sons Shaymus and Morgan at 28 weeks, one-day gestation followed four days later by Morgan’s diagnosis of Necrotizing Enterocolitis (NEC) and subsequent loss of 20% of his small intestine. Before coming home, Shaymus spent 85 days in the NICU. The 109 days that followed left them forever changed and on the path to establishing The Morgan Leary Vaughan Fund (Morgan’s Fund)—an all-volunteer, public charity dedicated to Necrotizing Enterocolitis. Its mission is to promote public awareness about NEC and the potentially devastating effects it can have on preemies and their families and to advance research to prevent, diagnose, treat, and ultimately, cure NEC. Named after Morgan, it celebrates his survival, courage, and strength. In addition to serving as President of Morgan’s Fund, Stephanie is the Print Production Coordinator at an investment firm in Austin, Texas.
What led to your baby’s premature birth and how early was your baby?
My cervix measured short at a routine ultrasound. I was hospitalized for pre-term labor after additional monitoring showed that I was contracting every seven minutes. After a two-and-a-half days of attempts to stop labor, I developed medically-induced pulmonary edema (water on the lung). My twin sons Shaymus and Morgan were born via C-section on October 29, 2010 at 28 weeks, one-day gestation.
What surprised you the most, as far as others responses to your baby’s premature birth?
I don’t remember any surprising responses to my sons’ premature births. Recently, I learned that a relative did not want to send a gift in case they did not survive. Generationally, based on the person’s age, I don’t think that is surprising.
Do you believe you were educated about the possibility of a premature birth before your early delivery and if not, do you think pregnant moms should be educated better, in the event that they have to deliver prematurely? What would you tell them?
Yes, I was made aware that premature birth was a possibility simply because I was carrying twins. Once I was hospitalized for preterm labor, my OB-GYN discussed birthing options with me and my husband in the event that we were facing an imminent delivery; and we were told that each baby had a 90% chance of survival based on their gestational age. There were 60 hours between the time I entered the hospital and the time my sons’ were born. During much of that time, the primary focus was on stopping my labor during so I would not say that we were “educated” by any means. We were given bits and pieces of information based on what was happening in the moment. I would tell parents potentially facing a premature birth to discuss with the doctor which hospital can best accommodate their and their baby’s situation before they face an imminent delivery. My OB-GYN sent me to a hospital with a level 3 NICU. The only thing that could not be done within that hospital was neonatal surgery. When Morgan ended up needing surgery, he was transferred to a level 4 NICU in the same health system. It was 30 minutes away.
What do you think the NICU nurses and neonatologists could have done better (or more or less of) to have given you a better NICU experience?
Overall, I feel like we had a good NICU experience with our boys.
What are some of the best practices that you experienced in the NICU? What did the staff do that made you feel good? What milestones meant the most to you while your baby was in the NICU?
The most memorable milestone was the first time that held each baby. Shaymus was four days old, and Morgan was 11 days old.
How is your baby now and please give us an update?
Shaymus and Morgan are healthy and happy eight year olds.
What was your NICU discharge experience like?
We had two NICU discharges from two different hospitals. Shaymus came home first, followed by Morgan three weeks later. At both hospitals, the discharge itself was fine. Coming home, on the other hand, was absolutely overwhelming. I was terrified that first night with Shaymus. I called the NICU more than once to double check the dose and timing of his medications. I hovered over him, crying, until I fell asleep on the coach while he slept peacefully in his papasan chair on the floor next to me. Morgan’s first night home went much more smoothly for me, but not for him. When Morgan first came home, we saw some residual effects from the additional time that he spent in the NICU resulting from his second surgery and recovery. Understandably, he had quite an aversion to “hands-on” manipulations, like having his diaper and/or clothes changed. He would get extremely distressed and cry, hit, and kick — easily becoming inconsolable. However, other than these necessary “hands-on times,” he was very content to be held and cuddled. Our visiting nurse likened it to suffering from Post-Traumatic Stress.
What was life like 1 month after NICU discharge and 3 months after NICU discharge and when did you finally relax and feel like you were “out of the woods”?
One month after Shaymus’ discharge/one week after Morgan’s, we were adjusting having to two babies being at home. Morgan was released from his surgeon’s care, and we were told to “treat him as normal.” That was first time that I felt like the parent. Three months after discharge, I was back at work which I think normalized things for me.
What advice do you have for a parent who just delivered a premature baby that was admitted to the NICU?
The best advice that I ever got was from a graduate NICU mom at a Mothers of Multiples meeting that I attended while pregnant. Know that if your baby needs to spend time in the NICU, they are in the very best place to receive the care that they need. Also, in my opinion, ‘breastfeeding’ can be a polarizing term. My twin sons were born at 28 weeks gestation, after which I exclusively pumped for 4 ½ months. I was fortunate to produce an ample supply of milk. However, my husband and I decided early on that feeding at the breast was not something that we wanted either baby to attempt. What premature babies need is access to an exclusive human milk diet to reduce NEC and so much more. The nutritional benefits can be provided in many ways: feeding at the breast, expressed mother’s milk, donor milk, the addition of a human milk-based fortifier, or any combination thereof. If you are going to attempt to pump, invest in a hospital-grade breast pump. The hospital where my sons were born provided me with one for the duration of Shaymus’ NICU stay.
The Morgan Leary Vaughan Fund is currently working to secure a venue and date for the upcoming Speaking of NEC: Unplugged event, a one-day regional conference focused on identifying practical solutions for reducing the devastating effects of Necrotizing Enterocolitis (NEC) on premature infants and their families, to be held in Austin during the winter of 2019. Speaking of NEC: Unplugged brings together relevant NEC experts (neonatologists, clinicians, and researchers) and influencers (parents, patient advocates, medical and nursing students, media, and policy makers) to engage and learn from each other’s experiences across the full continuum of NEC; its impact on patients and their parents, the cost to the hospitals that treat it, and the methods to improve both its short and long-term outcomes. Morgan’s Fund has also established a partnership with the National Organization of Rare Disorders (NORD) and created the NEC Registry and they also created a Podcast series called “Speaking of NEC“.
Please visit http://morgansfund.org/ for more information on The Morgan Leary Vaughan Fund.
Did I mention that I am on their Board of Directors and have enjoyed every moment of helping Morgan’s Fund raise both awareness and money to help reduce and treat cases of NEC in premature babies? I am proud to be a part of this organization.
You can donate to The Morgan Leary Vaughan Fund by clicking HERE. The money we raise goes to the scientists and doctors who are researching better ways to treat and prevent NEC in premature babies. Some of the monies also go towards our Speaking of NEC: Unplugged conferences. We held our first one in June (in Connecticut) and we plan to hold our second one in the late winer, in Texas! We has such glowing reviews of our first one that we decided to take it on the road to Texas and we would love your support in doing so. As mentioned above, these conferences bring together relevant NEC experts and preemie parents to further encourage research into treating and ultimately preventing NEC in premature babies. You can read about the inaugural Speaking of NEC: Unplugged Conference HERE , and in my article in Neonatology Today by clicking HERE and turing to page 20.
Check back to speakingformomsandbabies.com next Friday, because we’ll be sharing another Q & A with a NICU expert in honor of World Prematurity Day. In fact, we’ll be sharing one each Friday in November.
November is National Prematurity Awareness Month and November 17th is World Prematurity Day.
Please visit my social media sites throughout the month because I’ll be sharing a lot of personal stories and resources for families of premature and NICU babies. You are welcome to share them all.
Have a great weekend and please think about how you can spread prematurity awareness and help another family in honor of World Prematurity Day.