Justin and Emily’s Story
Read below as their mom shares their story.
Let’s start from the beginning, can you tell us how you learned about the pregnancy with twins and your initial reaction?
Discovering we were pregnant with twins was a tremendous blessing! Six months earlier, we had gone through a complicated pregnancy that ended in a miscarriage. While our twins will never take the place of the baby we lost, we are extremely grateful for them!
When did you find out that things in the pregnancy were not going perfectly? Did you know you would have to spend time in the NICU?
At my mid-pregnancy ultrasound (22 weeks), we learned that the babies were very likely going to be born prematurely. When I learned I was pregnant, my husband and I were living in Papua New Guinea where we lived and worked as missionaries. After we learned I was carrying twins, we decided I would fly back to the States to deliver the babies. My first appointment with an OB in the US took place when I was 21 weeks pregnant. The ultrasound a week later discovered that I was at high risk for delivering early (as in, at any moment). I was placed on immediate bed rest.
Can you share what you are comfortable with on the delivery of your babies?
By God’s grace, my husband (who had stayed in Papua New Guinea so that he could work for another month before returning to the US) was able to rearrange his flights and make it in time for the babies to be born. They were born at 25 weeks, 2 days. Due to complications in the delivery room, the medical team had to do an emergency C-section.
What was the scariest day for you in the NICU?
In some ways, that is a difficult question to answer. Honestly, there were many scary days. The scariest was probably the day we received a phone call in the wee hours of the morning from a nurse practitioner, telling us to get to the hospital as quickly as we safely could do so. Our son had experienced a particularly rough night, and they wanted us to be at the hospital to be prepared to say goodbye to him.
I know the NICU is a roller-coaster of emotions; what was the hardest day for you in the NICU?
Again, this is a difficult question to answer. Perhaps the hardest season for us was when our children were at two different hospitals. When the twins were one month old, our son needed brain surgery that was not available at the hospital where the twins were delivered (in Cincinnati, OH). He was moved to a nearby children’s hospital (also in Cincinnati), but our daughter could not be moved at the same time because our insurance company would not pay for her transport. So for the next month, we traveled to two hospitals so that we could spend time with both of our children each day. Thankfully, the hospital where they were born eventually paid for her transport (as they were over capacity and needed the space) so the twins were able to be in the same hospital for the final two months of their NICU stay.
Tell us about your NICU nurses and doctors.
To say that we were blessed with wonderful nurses would be an understatement! In the two NICUs our children were in, they were each assigned two primary care nurses (one during the day and one at night). This enabled us to develop solid relationships with 8 different nurses over the course of our children’s NICU stay. These nurses were incredible! They cared diligently for our children, and we were blown away by the compassion they showed us.
Since you have twins were you able to take the home at the same time? If not, what was it like taking one home and still having one in the hospital?
Thankfully, we were able to bring them home at the same time. What a blessing!
What was the biggest challenge that you had to face for Justin and Emily when you went home?
The biggest challenge we faced was trusting that we would know what to do. For 120 days, it took a team of nurses, doctors, respiratory therapists, and a slew of other medical professionals (along with a host of complicated machinery) to care for our children. Now it was just down to my husband and me (along with the help of my amazing parents). It was easy to be overwhelmed by the medications, the therapy, the equipment, medical appointments 3-4 times each week, etc. Add in all the “normal” things of bringing a baby home from the hospital (sleep deprivation, etc.), and we felt very inadequate.
Can you tell us a little bit about this therapy, how you heard about it, and what the benefits are for it?
As I understand it, hippotherapy is a type of therapy where a horse is used as a tool to help a child achieve his/her therapy goals. Sometimes a physical therapist works on gross motor goals while the child is riding the horse. Other times an occupational or speech therapist works on other goals. The benefits are vast and varied. Our son lives with cerebral palsy, and his mobility is affected by it. Because the horse’s walk mimics a good human gait pattern, riding a horse helps his body gain muscle memory to develop and maintain good walking patterns.
How did you hear about Bee Mighty?
We first heard about Bee Mighty from friends of ours whose children had also benefitted from your generosity.
What does a typical day with Justin and Emily look like now?
In many ways, a typical day for Justin and Emily looks pretty much like a typical day for any 9 year old: school, freetime, and chores. One big addition to all of this is the commitment to complete physical/occupational therapy exercises. As a homeschool family, we try to take care of their academic subjects during the morning. Each afternoon, we work on physical and occupational therapy goals intermixed with good, old-fashioned playtime. Their early birth left them with some medical issues that puts them at high risk for any respiratory illness. This means we’ve been home much more this past year than we normally would have been. One of the biggest changes for us is that we have not gone to any in-person physical therapy sessions at an indoor clinic since March 2020. That is the longest time we’ve ever gone without officially attending PT sessions. Being able to attend these hippotherapy sessions has been a tremendous gift to us! As they take place in an outdoor facility, we are able to safely get some of the therapy our children would otherwise be missing at this time. What a blessing this has been for our family!
Any advice you would give another family going through the process? Anything that really helped you get through the experience?
By far, the biggest help we experienced was our Lord and Savior Jesus Christ. We want to thank Him for sustaining us each day. One of the ways He encouraged us was by bringing people around us who were walking similar roads. These folks could relate to us in ways that many other people could not. Being able to talk with them about our daily routines was not only a blessing, but at times it turned into a networking session and led us to finding new therapies to try and/or new providers who might work well for our children. We were also blessed with friends (who were not walking similar roads) who came alongside us in other practical ways (bringing meals, learning our routines so they could provide childcare, etc.). I would highly encourage anyone walking through something similar to intentionally build a support network of people to help you. Do not isolate yourself! We need others; we were meant to work together and support one another.