In my last post, The Very Beginning, I told the story of Isaac’s birth and the swarm of questions that began with his first breath. Here, I go back to the early months of “not knowing,” a gut feeling that something was different about Isaac that we couldn’t quite articulate. Fifteen years later, it is still a hard story to tell because I remember the fears so vividly.

Newborn questions

Everyone who’s ever had a baby knows how hard life can be with a newborn. In this respect, Isaac was no different. Around-the-clock feedings and diaper changes, and very little sleep. It was quite a change from the professional life I’d had up to that point with all of the independence and self-sufficiency our culture celebrates. All that was just gone, and in its place was this tiny little life that needed me all the time. My hands were always full, and I wasn’t much good at doing two-handed tasks with one. I didn’t always know what to do with myself. I was a mix of emotions and chronically sleep deprived. But all mothers of newborns go through this, right?

I wasn’t the super nervous or controlling first-time mom you might be imagining. I’m a second-born child myself. I’m comfortable not being in charge of everything. I’m a highly sensitive person and a four on the Enneagram (if you follow that kind of thing). I observe. I take things in, internalize them. I am more prone to depression than anxiety. I opted not to do amniocentesis. Didn’t have a birth plan. Didn’t interview pediatricians ahead of time, though in hindsight, maybe I should have. 

The first pediatrician we saw was terrible. Isaac was one week old, and we were still distressed about IUGR, among other things. The doctor was cold, unfeeling, disinterested. To this day, I have no idea why anyone would have referred us to him. Clearly the person who did knew him as a colleague but never experienced him as a clinician. Our OB gyn later told us he was going through some things in his personal life. (Still, my husband, Todd, is a doctor who has had more than his fair share of personal stressors and would never be so curt and dismissive of a concerned patient.) 

After our initial visit, we were supposed to follow up in one week. We set an appointment with his female partner instead. She was definitely an improvement but had little to offer in the way of answers or calming my fears. And I don’t know, maybe no one would have, but I didn’t understand that at the time. I don’t remember now if we saw her more than once or just began looking for another practice after that visit, but before long we were on pediatrician number three.

Developmental concerns

Isaac remained small, and that was a major concern. He wasn’t a preemie. He was born full-term at 4 pounds, 10 ounces, for no known reason. He wasn’t just in low percentages on the growth charts; his measurements didn’t register on the growth charts at all. I remember one doctor (though I don’t remember which one, maybe the neonatologist) saying they expected he would start gaining a bunch of weight and catch up in a short time. He didn’t. Isaac would often fall asleep during feedings, and I had to try to wake him back up so he would keep eating. They recommended I bottle feed in addition to breastfeeding. I remember giving him a bottle after I nursed him, just trying to get more food in. He immediately threw it all up, which totally defeated the purpose. Whatever the expectation was for feeding and weight gain, Isaac’s body wasn’t having it.

Almost every Friday, I went to a mom’s group at the hospital where Isaac was born. That was the norm where we lived In Chicago and something I absolutely needed. Some of us had been in birth classes together, and we formed little groups of new moms and babies who were born around the same time. It was my one weekly social activity, led by a newborn baby specialist and a lactation consultant with a lovely British accent. 

When Isaac was five months old, we were sitting with our group of new moms and five month olds, and I looked over at the two month olds who were sitting to my right. I couldn’t shake the feeling that Isaac looked more like the two month olds. Not just because of his size but because of what he was doing (and not doing). It was undeniable. All of the five month olds were propping up on their arms, facing each other in a circle, the first glimmers of social interaction. Isaac was sleeping, and not because I didn’t “time his nap schedule” right. There was no schedule. There was no real measure of development that I could follow or discern. 

I had some books with milestones markers to measure a baby’s progress, but I didn’t find them all that helpful. Or maybe I couldn’t tell whether or not Isaac was doing what they printed for his age because he wasn’t, in fact, doing those things, and I just couldn’t wrap my head around it then.

I remember reading that by a certain age the baby should be able to hold and shake a rattle. And I thought, Isaac has been doing that for a while now, so that must be a good sign. But it wasn’t clear whether he was doing it because of new muscle control or that he hadn’t lost the newborn reflex where babies grasp on to your finger and don’t let go. One way or another, Isaac was grasping the rattle. I was grasping at straws. 

And then there was his arm. When Isaac was lying on his back with his arms at his sides, one fell just as you would expect, and the other, his left arm, turned slightly out so that the flesh inside his elbow joint faced up. It wasn’t anything too odd, but it was noticeable and added yet another question mark to the growing queue. 

When Isaac was a baby, swaddling was highly recommended. I learned how to make a perfect swaddle folding the blanket carefully under one arm to wrap Isaac up like a tight little burrito, snug and secure. One day my mom pointed out how Isaac’s arm turned and said she thought it was because of how I swaddled him, something they apparently didn’t do when I was a baby. I was furious. Not that she’d called attention to his arm—I was already concerned—but that she suggested something I was doing had caused it. As if I didn’t already question everything about myself as a mother. As if I didn’t already have enough fears.  

Sometimes when I was looking at Isaac, he would look right past me, as if there was someone behind me, even when we were alone in the apartment. It was unnerving. Many times, I turned around to look. But there was never anybody there.

At this point, the message we received from every professional seemed to be, don’t worry. Like I was stirring the pot unnecessarily and just needed to relax and enjoy my baby. And believe me, I wished I could. But I couldn’t ignore the feeling that Isaac was not developing like a typical baby. I was his mother. I held his life in my hands. Literally. And I knew my instincts weren’t all wrong.  

Early Childhood Intervention (ECI)

To his credit, our third pediatrician did listen and said if we were still concerned, we could reach out to ECI, early childhood intervention. If you’re not familiar, as I wasn’t, ECI is a government-funded program to help children from birth through age three who may benefit from therapies and other assistance. (Speaking as someone who has now paid for private therapies for over 12 years, I am definitely a fan of ECI.) 

Pediatrician number three also touched me on the knee in a way that stopped my feminist blood in its veins, so we moved on to pediatrician number four, a woman in the same practice who thankfully struck the right balance of professional and concerned. She remained Isaac’s doctor until we moved from Chicago to Houston when he was 10 months old.

I made the call to ECI and set an appointment for a developmental evaluation. They would be sending a team of specialists to our home to assess Isaac’s progress and give us a report and recommendations, if necessary. But the day they were supposed to come came and went because Isaac was sick. Very sick actually, with rotavirus. The evaluation would have to wait. (There are common vaccines for preventing Rotavirus now, but they weren’t widely used in the US until 2006/2008.)

A huge setback

Rotavirus was awful and a huge setback for Isaac. Near constant diarrhea and vomiting. We could hardly change one outfit before he needed yet another. Same with the sheets. We couldn’t wash them quickly enough to keep his crib made. Couldn’t move one load from the washer to the dryer before we had another soiled load for the washer. Within a matter of days, Todd and I were also sick, and it was downright miserable. Our parents offered to come and help, but we worried they would only get sick, too. In the end, we were all wiped out for 10 days. 

The scariest thing was, Isaac didn’t have any weight to lose. For newborns, healthy weight is linked to healthy development. Before rotavirus, Isaac rolled over on his back. That was a clear-cut developmental milestone achieved, right around the time it was expected. I saw it one time. And after rotavirus, it didn’t happen again. Not for a long while.

ECI, continued

We rescheduled with ECI, and Isaac was six months old when they finally came for the developmental evaluation. I don’t remember everyone who was on the team, but I believe there were two or three specialists, maybe more. Following the assessment and observation, the team lead reported that yes, Isaac was behind. His development was more in line with a three month old. Again, I was terrified. But at least someone finally acknowledged what I was seeing. I felt like there must be some explanation, but they couldn’t tell me why. ECI recommended we follow up with a medical evaluation, where a team of physicians and therapists would do a similar assessment and offer their medical opinions and recommendations. 

I no longer remember if they suggested a particular clinic or if I had to find it through our insurance, but a few weeks later, when Isaac was 7 1/2 months old, we followed up with a “med eval.” Todd was there for it, too, and thankfully the news was good. At that point, Isaac’s development was in line with a typical six month old, so he had done some catching up. The lead doctor assured us that Isaac did not have autism, which I’d never even considered. He thought it was possible that rotavirus may have been responsible for some of the delays. That didn’t answer everything for me, but maybe rotavirus was just a further setback to his progress, and now he was finally on the right track, catching up. They recommended physical therapy and occupational therapy once per week through ECI to help Isaac progress. Otherwise, he had a clear bill of health.

It felt like a win. We took the good news and went out to lunch to celebrate. We cried. I tried to let it wash over me and let go of my fears. After lunch, Todd went back to work, and I went back home with Isaac. 

I remember watching TV to pass the time and thinking after a while that I should turn it off, but I didn’t. I waited to see what was coming on next, some sort of documentary programming on a random cable network. The next story was about siblings growing up with disabilities, and my heart went to my throat. It was a silly coincidence, but it felt like more than that to me, a tiny flame of a question still lingering. I decided not to tell Todd about it, because we weren’t supposed to worry anymore. (In fact, I told him that story for the first time this week.) But I still worried. Because Isaac was my baby, and I was his mom. 

And even though there were things we didn’t know, somehow, I just knew.

(Note to readers: I am intentionally working to limit the length of these posts, as I know they are dense and heavy. My next blog post will pick up here. Thank you so much for following our story.)