Share the first part of Easton's story for readers on Sleuth! When and why did you start to feel concerned?
Easton's story started before he was born. At about 28 weeks pregnant, I found myself very sick in the ICU with an infection, pneumonia, and relentless fevers. At the time I was blissfully unaware of what cytomegalovirus (CMV) was. However after weeks of testing, I was diagnosis with CMV and told that there was a chance that my child would be born with a congenital form of CMV as it could pass through the placenta. However, I was told to not worry and that it was unlikely to cause issues. This was far from true for us and so many. A few months later, Easton was born! At 36 weeks and 5lbs, he was doing well but had issues from the get go. He did test positive for CMV at birth but I was again reassured that he would be fine, and there was nothing to do for it. He was jaundice at birth and didn't as eat much as I felt he should. Every time he ate he would spill so much milk around his mouth that it soaked his shirt and mine. He sounded like he was gargling milk when he drank, almost like he was drowning. It was so concerning to me, but it was brushed off by doctors very frequently. I took him to his pediatrician, lactation consultants, chiropractors... I was desperate for help, He cried all the time, slept restlessly, and developed thrush. He was diagnosed failure to thrive at two months old weighing just 6lbs 7oz. This is when we were able to move to a larger children's hospital and start on this journey!
Share the first part of C.'s story for readers on Sleuth! When and why did you start to feel concerned?
My son (nicknamed C.) is a sensory seeker. He's very active. At 18 months, he was constantly moving and doing a lot of physical activities that I didn't see other kids his age do. He also had an enormous amount of trouble self-soothing at night to go to sleep. He was having trouble going from a highly aroused state to a calm, relaxed state where he could fall asleep. We tried sleep training. We tried to do all the typical things that people tell you to do at that age. None of it worked. I just felt like something was off. Like there was something else going on. And when he would wake up in the middle of the night, which a lot of kids that age still do, he just couldn't go back to sleep. He was in a highly vigilant state, wide awake. It was at 18 months that I first mentioned this to his pediatrician. She said, “Well, his nervous system is still maturing. Let's see what happens”. As the months went on, and he started to walk, we noticed that it was like he had no sense of where he was. And then feeding challenges started: he was a really good eater until he wasn't. It was very dramatic. We felt like there might have been some sensory-related stuff going on with either what we were putting in his mouth or what he was seeing. We still struggle with feeding. I mean, it's gotten better. But picky eating was a big indicator of his condition. Then there was the activity level and the lack of focus. C. had a hard time staying focused on one activity. My son was born extremely premature at 24 weeks. Not everybody knows that 24 weeks is the line of viability. He was literally four days after the line. It was a very traumatic birth for him and also a traumatic labor for me. He was born weighing 705 grams. I'll tell you why I say it in “grams.” Because when they are born that early, every gram matters. They consider your probability of surviving partly based on the number of grams you weigh at birth. After he was born, all the nurses kept coming into the recovery room saying, “Oh my! He's 705 grams! Isn't that amazing?” There was like this celebration. He was a little bigger than normal for 24 weeks, but 705 grams is actually one pound and nine ounces. He was tiny. He fit in the palm of my hand. He was very, very small. He spent about five months in the NICU, and it was a very complicated NICU journey for him. Every child in the NICU has their own story. He was challenged with a host of medical issues that almost claimed his life, and also were potentially going to impact his development. When we came out of the NICU we were linked with Strong Start, which is Washington D.C.’s version of early intervention. We started Strong Start at about four months of age, if we correct his age for his premature birth, or eight months old from birth. We were working on some very basic things around gross motor skills, making sure he was moving his head right, that he was making eye contact, some of those typical infant developmental milestones. From the beginning, I had a sense of vigilance around potential delays in his development. In that respect, I think my story might be a little bit different than most families. I already had a heightened awareness that things were probably not going to be typical. The challenges that I had were really the struggles with the system. We knew C. was going to need a lot of therapy. We knew that he was potentially going to be diagnosed with a host of medical conditions that we couldn't predict in his early infant years. I was very proactive about it. But it was still very, very challenging to get the right services, to know who the right people were to talk to, to get coverage from insurance. I always tell people who have questions about what it is like to have a child who was born early or has special needs: this is all really hard. You have the typical challenges of raising an infant. And then you also are a medical coordinator, you’re an insurance advocate, and you're an expert at X, Y and Z diagnosis. You have a host of different hats that you have to put on every single day. The system is not always cut out to support you, right? It's almost the opposite. There are some days where I wake up feeling, “Okay, I'm in fight mode. Let's go!” I have to fight to get through the day, to be able to accomplish the things that my son needs in order to continue to develop and to thrive. That’s our overarching experience. He is now three years and seven months old. When you're born early, they use “corrected age” (based on the date you should have been born, so to speak, if you came to full term at 40 weeks) versus actual age for the first two years of life, because there is a developmental lag. The medical and school systems assume that by the time you are two years old, the child should have caught up, unless there's a major medical issue. Then after two years, you use only on the actual birthday so to speak. So he's actually three years and seven months from his day of birth.