About Our Journey

My daughter, Mya was referred for Physical & Speech Therapies through an Early Intervention Evaluation, two days ago. The decision to call early intervention has weighed on my mind for the better part of this last year. Born at 4lb 4 oz, Mya was the smallest baby I had ever held but she was perfect. In the beginning she struggled to latch, both on my breast and with a bottle. Some nights we resorted to syringe feedings. When her first baby appointment (6 days after birth) put her under 4lbs, I lost my mind and went on a crazy journey to keep her in the positive. We bought a scale and weighed her after feeding. The lowest she got at home was 3lb 8oz. The doctors didn’t seem too concerned, especially after she started slowly gaining in oz. She was healthy they told me. There was nothing wrong.

As the months went on, I struggled to explain why Mya was so small. The question was prevalent when you are holding an 8lb, 3-month-old with a 12.5lb twin brother. Everyone asked, or joked, and I didn’t have an answer. Aside from her size, Mya was slightly delayed in certain areas. She was diagnosed with a slight torticollis at 6m, she could not hold her head up steadily at 7m and she was very much a “floppy baby.” The doctor recommended waiting for her to “catch up,” and suggested evaluated her condition at her 12m Baby Well-Visit. Since she seemed to be hitting milestones on a regularly interval-ed delay (1 months delay), I agreed.

We decided that Angel was going to separate from the Navy in May. By July the babies & I moved to NJ. The whole time period was a blur. They started teething, being more mobile and generally more awake. For all intents and purposes, I was running on nothing and barely had time to remember to eat, let alone take notice of the widening gap in developmental delays. As September approached, and our reunion as a family was in the wings, we decided to have our last Well-Baby Visit with the pediatrician in MD. At this point Mya had just begun to sit up when placed, Ian was already standing. The pediatrician was thorough and reminded me to bring my concerns up with our new pediatrician. She sent us on our way, with complete copies of both babies’ medical histories.

We decided before we ended our last trip to MD, to get copies of the hospital medical records, too. It was an easy process. When I got the paperwork, I immediately delved in and tried to dissect the medical lingo with Google as my translator. I was looking for a reason Mya was so small. And I found it. Noted on the bottom of the very first paper, four letters that now summed up everything about the end of my pregnancy and the beginning of Mya’s life. IUGR (Intrauterine Growth Restricted).

While my doctor had always mentioned Mya being smaller, and grew gravely concerned near the end of my pregnancy, he had never put a name to the issue I was facing. I’ve since learned that all of the extra precautions that he took with me (NST, BPP, kick counts and sugar monitoring) we all the prescribed course for mother’s carrying a growth restricted baby. He mentioned that Mya had taken a steep fall off the growth charts and at my last appointment before delivery he told me they would not wait to take her. She was better out than in.

From the medical record I discovered Mya’s placenta had begun to calcify. She wasn’t getting the nutrition she needed. The twins’ placentas had partially-fused and hers had a loose blood clot and an inadequate connection to the umbilical cord. Things could have been way more serious than they ended up being and I was humbled by the fact that I got to bring her home just three days after she was born.

Through support group and online research I found that Mya’s feeding issues and her slow weight gain were not unique to IUGR babies. And that while growth restriction occurs inside the womb, sometimes underlying factors cause babies to be slightly delayed after birth.

I finally had a name for Mya’s struggle and felt justified in the hours I had spent worrying about her, both in the womb & while she struggled to gain in her first year. I had something that explained it all & maybe had some evidence in my corner when I went to her new pediatrician in NJ about my concerns with her milestones & a growing concern about her lack of muscle.

The babies saw the pediatrician in New Jersey, for the first time at their 12-month Well-Visit. She seemed nice. Mya liked her, which in itself made her seem even better. I waited for the routine checks that our pediatrician from MD did at every well-visit but they never happened. I thought maybe it was a change because they were older and so they didn’t have to be so thorough. Red flags went up when she started to leave the office before asking us if we had any concerns. I politely stopped her and glancing at the list I always brought, I mentioned I had a few things to talk to her about. I asked about vaccines (the babies were a little delayed because Mya didn’t hit the weight for their initial vaccines until 2 months, which pushed back all of their vaccines), I asked about Mya’s chronic constipation & what we should do since it seemed to be dairy related, and then I asked about the growing gap between Ian & Mya’s milestones.

I sat astonished as I was laughed off, as a twin mother “comparing” her kids because they were the same age. I felt belittled. I explained that our original pediatrician had been monitoring Mya all along, and wanted to discuss it at a year. She just shook her head “no” and assured me this was some concocted reasoning I had “made up,” when it was clear my kids were perfectly fine. By this time, Ian was walking solidly for two months and Mya was just transitioning from crawling to sitting, and beginning to lift her head up while crawling. I mentioned Mya being IUGR and was told she wasn’t. I was written off. I left that day doubting my sanity, but was also kind of relieved. The doctor thought there was nothing to worry about, so why should I worry. I’d stick my heads in the clouds and enjoy their perfection.

This was the three month period where I decided to ignore my gut & ignore what I was seeing on a daily basis and just go with the advice of a medical professional.

In that time frame we battled the “EPIC-VIRUS-FROM-HELL,” and dealt with not only both babies having been hospitalized, but each of us coming down with the virus, and spreading it to our extended family. We were just barely hanging on and between visits to the doctor’s office, throwing up and bleaching everything from floor to ceiling; I started to realize that our new pediatrician was a quack. Each phone call and visit was a steady prescription of different ways to combat the virus and try to get healthy, all contradicting each other. One day they told us no food, the next they told us we were starving the kids. One day it was not to drink milk and the next it was that pedialyte was not nutritious enough to get them through and that we were insane for not offering milk! I felt like I was living in the twilight zone.

Luckily, we all got healthy, though the battle was far longer for some of our extended family members who were also hospitalized. Things were getting back to normal. Before I knew it the 15m well-visit was upon us. I hadn’t had the time to find a new doctor so we went to this one. I didn’t let her start talking before I mentioned Mya’s low muscle tone. I told her I had noticed it all along and that in the three months since we had seen her last it seemed to not improve at all. She wasn’t doing things naturally. She was finding little crutches to help her move in a way that I felt she should have been moving. She also hadn’t gained weight and her suggestions about the constipation didn’t solve the problem. She told me that I was being overly cautious about Mya’s muscle tone and that it wasn’t an issue because it was clear Mya wasn’t one of “those” babies that had “real problems,” and that low muscle tone only affected those types of babies. She told me I needed to stop comparing them. I was seeing red. I knew I was fighting a losing battle with her, and had recently heard of a State Program that might be of some help, so I gave up. I pushed her for the referral to the GI and I helped hold the babies down for their vaccines and blood draws. When we were leaving the Nurse asked if we’d like to schedule our next appointment and I told her no, fully knowing that this would be our last visit to that pediatrician.

I put off calling the program that the state runs, called Early Intervention. Some days I looked at Mya and seen how far she had come. Nothing was “easy,” for her. Her body was so tiny, her limbs so weak, that I rationalized that of course it would take longer for her to grow and physically be able to lift herself. She had a much longer journey to “normal,” than most babies do. Why wouldn’t she be behind? She hit the “average” weight of a newborn around 12 weeks old!

 I was elated when she started to show more interest in walking, right around 15 months, by holding just one of our fingers and twisting her body to keep balanced. Here she was, wrapping her hand around my fingers and walking; the same hand that barely covered the tip of my finger when she was born. She was strong, why was I having doubts? Why was I worrying?

 Eventually, she let go. She started to walk! I’ll admit tears filled my eyes as I watched her step between my mom & myself. And then it was between pieces of furniture. My pride clouded my worry once again and I reasoned with myself that if she was walking – albeit, stepping at 15-months, then I had no reason to be worried.

But at night I laid awake wondering if she was strong enough. I’d replay the conversations I’d have, on any given day, with well-meaning strangers who questioned my claim that Ian & Mya were twins because surely she was at least 9 months younger than he was, he was so much bigger (nearly 10 pounds at this point) and WILD! [He climbed everything, while she sat with her legs bent awkwardly to the side, with her bottom on the ground, in her own world, choosing to pay attention when she wanted to, or sometimes ignoring him altogether.] I’d hear the voices of my family questioning me upon each of my returns from doctor visits, wondering if I had asked the doctor about her size, or her not walking, or a gamut of other concerns that we discussed pretty regularly. I’d hear the GI’s concern about her weight and her loose muscles and images would flash of times we’d go to lift her and her body would go limp, or her limbs would spin contortionist-style. Or, I’d thinking about the clothes that she had been wearing for 6 months because she didn’t grow enough to warrant new sizes. I’d stay up worrying like crazy. And then, the next night, I’d stay up worrying that I was just “being crazy.”

So here I was, a little over a week ago. I sat listening to my cousin tell me about her daughter struggling with similar issues. Asking questions and worrying about the similarities. Reality started to set in, followed by regret for allowing myself to rationalize some of Mya’s struggles and write them off. And I felt like a failure. I let my daughter down because I made the choice to ignore my gut and chose to believe the doctor’s opinion that this was nothing but a case of me comparing my kids, when I knew my heart felt differently.

To be honest, while I don’t readily admit it, I DO compare my kids. I compare them to themselves, each other, medical data and all of the other kids I have known in my life. In the past it has helped me to identify things like ear infections (they had the same symptoms my nephew had when he’d get ear infections). Seeing that they were growing according to their growth charts (I keep VERY good/detailed records). And compare their development to the CDC guidelines, which helped me realize when I should bring up an issue and when I should just give it a bit more time. I compared them to each other, in my notes and discovered that until 6 months old they were EXACTLY a month apart developmentally, down to the day they rolled over. I prepared myself for Mya teething because I watched Ian teethe. Comparison is a tool in my arsenal. And it isn’t always a bad thing. Comparing them helped me to see that there is a huge difference in the way their bodies developed, and that there may be a problem.