Meet Mighty Stafford, our latest Mighty Bee. Stafford was born in 2017 and spent several months in the hospital before coming home to his loving family. Learn more about his story from his mother, Anna.
How did you learn about your pregnancy and what was your initial reaction?
My husband, Nathan and I were so excited to learn we would be expecting our fourth baby! This was our first "surprise" pregnancy but we were overjoyed for the addition to complete our family! However, I did find out at an 18 week anatomy scan that Stafford would have cardiac complications making this pregnancy more high-risk and more difficult than my other three pregnancies.
For those reading that may have never had an experience with the NICU, can you explain what it was like learning your child would in the Neonatal Intensive Care Unit? When did you first learn you would be spending (a lot of) time there?
Our situation was a little different than most NICU situations because we had time to research his complications and prepare ourselves knowing that we would not be able to bring Stafford home following delivery. While pregnant, we were under the assumption that Stafford would need his heart repaired before being able to come home from the hospital. We had planned to spend a few weeks in the hospital post delivery but things didn't go as we "planned". We never really "knew" we would spend as much time in the hospital as we did. This made it very difficult to plan anything. Mentally, I think it's almost better not to "plan", most likely things will not go as "planned".
A lot of times you may not be able to hold your baby for a period of time right after they are born. When was the first time you were able to hold Stafford and what was what experience like?
I honestly think it was about 2-3 days before I held him. Because he was full-term, he wasn't tiny like a premature NICU baby. He was; however, receiving airway support and had multiple other lines in him making it more difficult to hold him normally. The hardest part during the initial time in the NICU was how lonely it felt. Stafford was born during cold and flu season so visitor restrictions were in place and my other three children were not able to visit.
What were the first days in the NICU like? Did it seem to get easier as the days went on?
Unfortunately for us Stafford's time in the hospital got worse before it got better. Stafford was in the hospital for about 100 days before his initial heart surgery. Our family had to adjust to a "new normal" at that time. Fortunately we had extra help from Grandparents to assist with children at home. Nathan was able to continue working and we would rotate spending the night in the hospital and I spent the day at Stafford's bedside. Stafford was then med-flitghted to Boston Children's hospital for his initial heart surgery. Once his heart was repaired, we felt like we were "on the other side". We completed his post-operation care back in Charlotte and finally felt like we were working towards a goal of being able to bring Stafford home!
When did you know that Stafford would need extra therapies and which ones have been the most beneficial?
While still in the hospital I knew we would need additional therapies for Stafford. We were so fortunate to get set up through CDSA and had a caseworker to guide me through the whole process from birth until he was 3 years old. Stafford was tube-fed until he was about 5 months old and I knew this would pose feeding challenges later in life because he missed out so much on critical "normal development". Because of the airway support Stafford required in the hospital, Stafford was not able to leave the crib which also inhibited his ability to meet early developmental milestones.
How did you hear about Bee Mighty and what made you apply?
Our CDSA caseworker and I reconnected at a children's soccer game once Stafford was in Kindergarten. In our discussion I was commenting on the resources we are still pouring into Stafford in order to continue to "catch up". She recommended applying to Bee Mighty for assistance with his OT services at school. We are very grateful for the support of Bee Mighty for aiding in his OT services.
What does a typical day with Stafford look like now?
We feel very blessed to say, NORMAL, just like all 3 of my other children. Stafford is in 1st grade now in a local school and he loves it! He plays soccer, has lots of friends, goes to birthday parties, plays with siblings and just loves life!
Any advice you would give another family going through the process? Anything that really helped you get through the experience?
It truly is a marathon not a sprint. Expect the worst but pray for the best! I had to learn how to also accept support. We could not have managed without the village that helped us when we needed it. Stafford was only in the NICU for a short time of his long hospitalization. He spent more time on the "floor" than in the ICU. The biggest challenge was needing to be at his bedside 24/7. My best advice would be to allow others to sit with your baby (even if it's just to go take a walk outside). The hospital can get really lonely really quick and parents need a break, too!
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