Eloise’s Journey
We found out we were pregnant with our 3rd baby in February 2021. Already having two rambunctious boys, we were nervous and a bit overwhelmed by the news but so excited to officially complete our family. Knowing this was our last baby, we went back and forth on if we would find out the gender.
Having two boys already we were expecting our 3 rd to also be a boy and waited until our anatomy scan to find out! That night, just the two of us went out to dinner and opened the envelope to learn we were having a GIRL. It all felt meant to be.
Fast forward 9 uneventful months, Eloise Josephine was born at 39 weeks after a long and eventual induced labor. She came out screaming and my first thought was, what healthy lungs our girl has! Born at 7lbs 11oz she was our smallest babe, but was healthy and within 48 hours we were home enjoying life as a family of 5 ( with three kids 4 and under!)
Within a few days, we noticed Eloise was having a hard time with digestion. She had a hard time going to the bathroom and as a seasoned breastfeeding mama, I was surprised with how little she was going number 2.
Her pediatrician wasn’t concerned and gave us some tips and tricks to work through it. Eloise also struggled to gain her birth weight back and we needed to have weekly check ins until she surpassed her birth weight around one month old. It was around that time, her reflux started. She would scream in pain, turn red, burp, swallow air and spit up almost every time she nursed. It was terrible watching our little baby in so much pain from eating and we felt helpless in finding her relief. We eventually starting seeing a GI specialist who prescribed special formula and medication – which unfortunately didn’t help. Eloise struggled to eat. She would barely drink 2 oz every 4 hours. Around 9 weeks old we went for a swallow study and were recommended for feeding therapy.
It was also around this time we started noticing Eloises subtle delays. First, a lack of eye contact and social smiles along with physical delays in lifting and holding her head up. at first, I thought, and perhaps hoped, it was due to her inability to practice tummy time. with all her digestion issues, Eloise did not like being on her tummy. She was also a very unhappy newborn, and I didn’t want to make her more upset with tummy time. However, this wasn’t my first rodeo, I had two other children and by 3.5 months I knew Eloise was very behind in neck strength, mobility and more.
It was at that point we demanded Eloise be referred to a neurologist. We quickly were and started the journey we are still on today in identifying a diagnosis for Eloise. At 4 months old Eloise had already had an MRI and EEG – both results coming back “normal”. With no improvement physically, we got Eloise in early intervention therapy for PT and OT. It was then we learned exactly how delayed Eloise was. We continued therapies 2x per week for the next couple of months with no real improvement. I continued advocating for more specialists and tests for Eloise. Within this time, we gained another neurologist, GI, and Genetics doctor. Eloise had another more detailed MRI by 6 months that still showed normal results as well as extensive genetics testing that didnt provide any answers.
It was around this time, when Eloise was about 7-8 months that we had a realization, we may never know what was causing Eloise’s delays. But we were going to do everything we can to help her reach her full potential. That includes receiving 2nd and 3rd opinions, researching the best therapies and ensuring above all that she knows she is so loved and cared for.
Eloise continued to fall more and more behind physically. By the time she turned one, she was still unable to sit up on her own, crawl, stand etc. We continued routine examinations, specific to her brain and nervous system. We had scheduled a routine 48 hour EEG to evaluate her brain activity. It was during this routine visit we finally received news that wasn’t “normal.” Within 20 minutes of being hooked up to the electrodes, a doctor monitoring video from another room came in to share Eloise was showing extremely abnormal brain activity. We would later learn that its called Electrical status epilepticus in sleep or (ESES). A very RARE childhood form of epilepsy that occurs most often during sleep. We were transferred from Rhode Island hospital to Yale where we would spend the next 5 days treating her status epilepticus with an intense steroid regimen. After our hospital stay, Eloise was sent home on an anti seizure medication and routine follow ups to assess her brain activity. Although we finally have an explanation for her severe delays, it is not telling to what her underlying condition is and we continue to look for answers there.
Eloise continues to receive differently therapies throughout the week ranging from physical to speech and feeding. Each therapy is critical in her progress physically and cognitively. Recently, she enrolled in JumpStart a 2 day a week program for children with developmental disabilities. It’s meant to be a transition year prior to Eloise starting officially in the public school system at age 3.
This is a journey we will continue to navigate as we work to improve outcomes for Eloise.