Can you tell us about your family and first learning you were pregnant?
My husband and I struggled to get pregnant for three years. We did two rounds of Clomid, and one round of Letrozole and were finally successful. It was a long process and expensive process, but very much worth it! We were thrilled. I found out December 6, 2013 I was pregnant! We made special presents for our families to share the announcement at Christmas. Everyone cried tears of joy with us as we wanted to be parents in the worst way and our dream finally came true. We started in February with the regular obstetrician gynecologist.
What did you experience during your pregnancy?
There were many moments of joy during my pregnancy. I was the healthiest I had ever been in my life. I was so excited that I was finally able to realize how healthy eating and exercise really made a difference for me and for someone I loved so very much. Our friends and family were a huge support system, spoiled us rotten with a sports themed baby reveal, and multiple baby showers. We prayed to God thanking him every day for making us parents. We became more faithful as we prepared to bring this sweet gift into the world. We enjoyed decorating his room and preparing together to become the world’s best parents!
There were also many moments of lows during my pregnancy. When I showed up to my first ultra sound appoint at the high-risk clinic. Russ and I never wanted to have any prenatal testing completed, but there was a day that they took blood and ran the tests anyway. When I arrived to my second ultra sound appointment, they started rattling off all these statics and data. I was completely overwhelmed and scared. They told me "no worries" I could always "try again." At that moment I fell apart. First off, religiously we do not believe in anything they were saying. It proved they did even know me or listened to my story. From, that moment on I never went to another appointment without my husband. We also switched from the high risk ultra sound doctor’s office as they were not a good fit for us.
Share what you are comfortable with about the NICU experience for your baby.
Russ and I never had an amniocentesis to confirm if Michael had Down Syndrome. We decided when he was born, we would have the F.I.S.H. test and move forward with our sweet baby boy! I started laboring at home on a Tuesday evening, and Thursday at 2 a.m. Russ drove us to the hospital to welcome our little man into the world. My labor was extremely tough as I had an elevated white blood cell count and could not have an epidural. My blood pressure was through the roof so I had to have magnesium to help lower my blood pressure. It was a six-hour labor, and I was exhausted. Russ was amazing. When Michael was born, he swallowed blood and was laboring as he was breathing. He had to be whisked to the NICU immediately. We were shocked as we thought the only concern would be finding out if he had Down Syndrome. I stayed the night in my room, and Russ went between the NICU and my room all night. There were moments when Michael’s saturations would drop and many prayers were being said. As soon as my blood pressure was stable, I was able to go see my baby the next morning. It was one of the longest nights of our lives. The doctors and nurses in the NICU were nothing but amazing! The NICU was clean, organized, and safe. The staff was out of this world caring and knowledgeable.
How long did Michael spend in the NICU what was the hardest
part of your time there?
Michael stayed in the NICU for 9 days. The hardest part of my stay there was not being able to hold my brand-new baby for 5 whole days! I also had to make peace and pray that he had been confirmed with Down syndrome. I was ignorant to how wonderful a diagnosis it truly would end up being. I shed so many tears worrying about how his little life would turn out. Mike also was still struggling to breath on his own, eating was difficult, he was throwing up blood, we found out he had gastritis, he had serious jaundice, had to pass a car set challenge to leave the hospital, and that he was being referred to Levine’s Heart Clinic just to make sure everything was developed appropriately. I was also alone as our families were in Massachusetts and New York and had not arrived yet, because Mike was 2 weeks early. That is why the staff became like our family.
What was the biggest challenge that you had to face for Michael since being home?
The biggest challenge we have had to face for Michael is his continued need for speech services. As he has grown, he is super stubborn and we are working on that as well! But this kid has moved mountains and met most milestones on a 6-month delay. At one point we were given many possibilities of where he could go to school, and all the special services he might need, and that was very overwhelming and made us anxious about what the future would hold and what choices we would need to make and what it meant for our family. We have been so blessed with amazing doctors, therapists, early interventions specialists, teachers. Mike has exceeded every single expectation that we have ever wanted and hoped!
When did you know that Michael would need extra therapies?
We realize that Mike would need services as being born with DS brings a particular ability that might need extra support. Just like me and you, we didn’t know what he would need and only time would tell. It was very important to get involved with his interventions early. We took advantage of every opportunity that we were offered that
we thought would support Mike and our family. When I was in the NICU they gave me all the paper work for The North Carolina Early Intervention Branch (NCEI) through the N.C. Division of Public Health. We fell in love with our case worker from the CSDA!!! We truly
believe with her help, guidance, love and support Mike flourished. The entire staff of Pediatric Hands-on Therapy are the most amazing human beings ever. Honestly, I cannot imagine what would my life would be like had I not had a child who needed special services. We have been coming here since Mike was 6 weeks old, they are our family. I am so honored to have them in our life.
What therapies have really helped him?
Mike was in Physical Therapy for the first 3 years of his life just to support his growth and development. Then we had him assessed by the OT specialist to help with eating, and he did well so we only met a handful of times. Mike has OT and speech services for fine motor at school 2 times a week for 30 minutes. He attends speech for 45 minutes once a week for private lessons with Britt Mason at Pediatric Hands-on Therapy. Mike loves Britt and we would be lost without her!
How did you hear about Bee Mighty and what made you apply?
The staff at Pediatric Hands-on Therapy suggested we apply several years ago when our insurance stopped covering Mike’s services. Britt Mason our speech therapist helps me handle the application and makes it smooth and easy every time we reapply.
What does a typical day with Michael look like now?
A typical day for Mike is he attends public school at Kinard Elementary School in Clover, SC. He is in first grade and spends part of his day in his self-contained classroom, and morning meeting, lunch, recesses, and activity classes, and special events with his typical aged peers. He attends the YMCA after-school program at our school and LOVES IT!!!! He does his homework and reads every night. Mike has daily chores to take care of his dog Luke, cleaning his room, helping with his laundry, playing with his friends, and going to church. He loves gymnastics and would love to join a gymnastics team next year after school.
Any advice you would give another family going through the process? Anything that really helped you get through the experience?
The best advice for another family going through this process is try not to borrow trouble by looking too far ahead. Stay in the moment and enjoy the process, love your little one even when it’s scary and hard. Pray and educate yourself about your child and their unique needs. There will not be a one size fits all answer or strategy that will work. It will be a lot of trial and error. You will feel alone and jealous and that is when you need to pull from your network of friends, family and church, find your tribe! Listen to the specialists, take the advice, join the programs and ask for help! At the end of the day work as a family unit to make the best decisions for your family. You will get lots of advice and offered many things, some may be just what you’re looking for, and other things might not be a good fit. Try not to get defeated and be scared.