Read about Jay's journey from his mom, Haley.
Let’s start from the beginning, can you tell us how you learned about the pregnancy with Jay and your initial reaction? I learned about our (slightly unexpected) pregnancy with Jay on Dec 28, 2020. On Christmas eve, a dog we rescued attacked me, and I had to go to the ER for 25 stitches in my face, ear and head. I thought the stress made me late, so I took a test just to check a few days later. My first reaction was fear! I was so scared some of the medications and the stress on my body would be bad for the baby. Luckily, fear turned to joy very quickly!
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? My pregnancy was rough. Although I was never diagnosed with HG, I was sick for most of my pregnancy. However, it wasn't until 36 weeks that my blood pressure got borderline concerning. I went in a couple times for nausea and to keep an eye on my BP. During these visits, Jay checked out fine. We had no indication we would spend any time in the NICU until he was born, at 38 weeks. On that day, he wasn't moving at all, and we went to the hospital to be checked out. It was then we learned I’d need an emergency c-section because my placenta had detached.
When was the first time you were able to hold Jay? The first time we held jay was Wednesday, August 18. He was born on August 15.
Tell us about your experience with the NICU doctors and nurses. Our NICU team was incredible. We were treated with compassion, care and understanding at every moment during our journey. One of his nurses was particularly instrumental in helping us both deal with the mental stress, and we still use her practical sayings all the time! His doctors were amazing as well. I will never forget one of them telling me, on the morning after his birth, that coming in when we did saved his life. He had lost half of his blood and would not have made it until my scheduled check that Monday. I also appreciated that they celebrated every small or big win with us. When tubes came out, when he had his first feeding, passing his screening tests and going home were all met with high fives and congratulations. I truly felt their love and care for our son.
When did you realize Jay would need extra therapies and which ones have been the most beneficial? We knew Jay would need some additional support around 2 months old. I have a child care background and could see some delays, so we had a PT eval at 3.5 months and started at 5 months. I am so happy we started early, and that his therapist worked hard to connect us with even more therapies he has benefitted from. For Jay, PT and craniosacral therapy have been crucial to his success. He also receives OT and chiropractic care, none of which are covered by insurance, but help him greatly.
How did you hear about Bee Mighty and what made you apply? Bee Mighty was suggested to us in the NICU, and again from our service coordinator with the CDSA. I am so glad for that support! We applied due to the financial stress from doing several therapies at once. Since Jay did need so much extra support, I quit my job to be able to focus on him.
What does a typical day with Jay look like now? A typical day with Jay looks like waking up HUNGRY and spending some time working on our new skills, playing outside, and reading books. Recently, he started school and is adjusting well. He has craniosacral therapy and OT twice a month, PT weekly, and chiropractic as needed. This is in addition to neuro follow-ups and regular checkups! He is also followed by the NICU clinic, and we love those nurses and docs as well.
I know your story will really help other families going through the same thing. Do you have any advice for parents currently going through the same experience? The best advice I can give anyone going through a similar experience is to remember that no matter what, you are the perfect parent for your baby! You can be their advocate, their team but don't forget to be mom or dad first. Trust your gut, speak up when you have questions or objections. The doctors and nurses are there to support your family, but make sure you feel comfortable. Don't put too much focus on test results and technical terms, they are a small part of your child. Always put your child before the diagnosis, and ask for help when you need it!