BENEFITING: March of Dimes Foundation
EVENT DATE: Nov 06, 2016
My journey with March of Dimes started 7 years ago when I decided to walk with a coworker whose son was born prematurely. I have walked almost every year since, understanding the importance of the research and prevention the March of Dimes provides to new families and their unborn children.
Eric and I combined our families, bringing his 2 children, my 2 children, a dog, and 2 turtles together to create a modern day Brady Bunch. We then found out we would be expanding our family by adding a new bundle of joy. I had a healthy pregnancy, but measured big at 34 weeks. An ultrasound showed that Nolan was breach and measuring big as well at approximately 6 lbs already. At 35 weeks gestation I went into labor not anticipating there to be any complications as I was close to term and I knew Nolan was big. Nolan arrived at 3:00 am on August 6th, 2014 at 7 lbs 1 oz. Other than swallowing amniotic fluid and struggling with breathing right after delivery Nolan appeared to be healthy. As the first day went on he struggled with maintaining his body temperature and his sugar was a little high.
Late the first night the nurse offer to take Nolan for a couple hours so I could get some rest; a matter of an hour later we woke up to a team of NICU doctors telling us that Nolan had been taken to the NICU as he had stopped breathing and need to be resuscitated. We spent the next three weeks on the roller coaster that is life in the NICU. Even though Nolan was only 5 weeks early and was 7 lbs, he went through all the struggles most premature babies go through. He struggled to maintain his body temperature, struggled with his sugar level, had apnea spells, he couldn’t coordinate suck, swallow, breath which caused him to struggle with feeding, he was under the lights for jaundice 4 times, and the list goes on. We would have good days and see the possibility of going home followed by apnea spells that would keep Nolan in the NICU for 5 more days.
I wouldn’t leave Nolan’s side, sleeping on a couch near the nurses’ station; because of this Nolan was sent home after a 3 week stay on a modified discharge. We went home with an apnea monitor, back up oxygen, a list of appointments and services at home. It wasn’t a week later and we were back in the hospital for a week as Nolan was struggling with feeding. He has had several additional stays in the hospital with more to come. Our sweet Nolan started having seizures at 2 months of age and we have started a long journey to determine why.
During Nolan’s stay in the NICU we were surrounded by support, information, and education from the March of Dimes. I was unaware of this portion of the organization and what they do for families in the NICU. Beyond the resources and support, the March of Dimes provides families with a small escape in a challenging time; offering snacks in the family lounge, professional photos of your little bundle of joy, and a musician to play soft music to the babies, among other things. I am extremely grateful for the support, knowledge, and joy they brought us during Nolan’s stay. For this my family will continue to walk to support the March of Dimes.
Nolan was diagnosed with a very rare genetic disorder at the age of 8 months. It was determined he has Congenital Disorders of Glycosylation (CDG) type 1e. At this point we are not sure if this was the cause of his premature birth or not. Due to how rare Nolan’s condition is we are unsure of what his future holds as well. We do know that he is a beautiful, loving, sweet boy. He smiles, giggles, and laughs. He loves music, balloons, bells, and to be tickled. He enjoys the adventures we go on as a family and his time with his siblings. His motor skills are very delayed and at 2 years he still does not have head control. His mental capacity desires for him to be able to do more than his motor ability allows; a struggle that will most likely challenge him his entire life. Nolan has about 8 specialist he sees now on a reoccurring basis as well as therapy twice a week. I was recently able to return to work as we now have in home nursing care for him. We have been through quite a journey with Nolan so far and it is just the beginning. We take each day as it comes and cherish the smiles and snuggles we get with him.