RSV

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To parents in the know, there are few acronyms that make one’s heart sink faster than “RSV.”

Respiratory syncytial virus is an everyday virus that gives adults and most children no more than the sniffles. When it comes to young infants, especially preemies, the disease can ravage their lungs, and even prove fatal. I’ve heard that many parents of triplets and more put their infants on complete lock-down to protect them during their first flu season. In order to keep their home RSV-free, they keep family and friends alike away until the weather warms up.

We were fortunate to have health insurance that covered Synagis, the RSV shot, our daughters’ first year. Decision-makers in the military health care system deemed that RSV was a high enough risk for our daughters, 7 weeks premature, to cover the monthly thousand-dollar shot. Every month for 7 months, I took our tiny daughters to the one clinic in Central Texas that carried the antibody shot. They learned to start screaming at the sight of Candy, the lovely nurse who innoculated what seemed to be all the multiples in town.

J and M contracted RSV their second winter. They were relatively sturdy at 18 months of age, and didn’t require hospitalization. Still, I was out of work caring for them for nearly a month. I have documented the rest of the girls’ lives in excruciating detail, but I have no photos or blog posts from that time. Even my memories are minimal, just hazy impressions of fear even deeper than I usually felt during the months my husband was at war. The one clear memory I had was of calling my neighbour Heidi over. She was our only neighbour who was neither elderly nor a parent. I asked her to monitor the girls’ breathing so I could take my first shower in a week; J had thrown up on me. I will never be able to repay her for not only giving me peace of mind during those moments alone under the hot water, but also cleaning J’s vomit off the floor. Her husband was also in Iraq at the time.

M and J continued to suffer aftereffects of RSV for another 3 years. Only recently were we able to permanently (we hope) retire their nebulizer and put breathing treatments behind us.

This week, I learned that a coworker’s 3-month-old was on a ventilator because of complications from RSV. The last update I received was that she had been extubated and is tolerating a nasal cannula. She has been weaned off the meds that were keeping her sedated and is now moving and crying. If all goes well, she should be home from the hospital in a couple of weeks.

What can one say to a parent whose child is in the pediatric intensive care unit? The only words of comfort I had were of sympathy. It seemed out of place to tell her that M and J, after 3 long years, had finally overcome the setback of RSV.

Update, 9:36 am CST

My friend emailed to say, “Good news today!  She’s off of both oxygen and pain meds.  They want to watch her today to ensure that she continues to do all right without them.  If so, we get to go home tomorrow!”

Have you dealt with RSV? Do you have words of comfort for my coworker and her husband?

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Preemie Medical Issues: Lung Function, and also Bad Teeth

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Our daughters, J and M, were born prematurely at 33 weeks gestation. Preemies make up 54% of twin births, compared to 9.6% of singleton births, according to statistics gathered in the 1980s. In my experience, conversations with parents or grandparents of multiples eventually turn towards the issue of prematurity, either its reality and the shared bond of the NICU experience, or how lucky some families are to bypass that rite of passage.

Our family’s experience with prematurity was a lot less scary than it could have been, although it felt devastating at the time. Neither of our girls needed help breathing, but they weighed under 7lb (3.2 kg) put together. Their Apgar scores were excellent, but they didn’t have the body fat they needed to maintain their own body temperatures ex-utero. They were released from the hospital over a month before their due date.

Looking at our vibrant, sassy, smart and downright hilarious five-year-olds, no one who isn’t in the know about twin birth statistics would guess that their birth held any unusual struggle. They’re short for their age, but so am I. My 5 ft 0 in (1.5 m) genes appear to have beaten out those of the girls’ 6 ft 7 in (2.0 m) great uncle. M and J have had only two lasting effects from being born before they were quite ready: a susceptibility to lung infections, and teeth missing enamel.

The lung infection issue came as no surprise. Our pediatrician and the NICU staff had warned us that lung complications were common in babies who began to breath when their lungs were still forming. Our insurance covered Synagis, the vaccine against RSV, a virus that gives you and me the sniffles, but can be fatal to a premature infant. I made the monthly trek to the one local clinic that dispensed the vaccines for the entire seven months of our girls’ first cold season. Their second winter, our insurance company deemed them out of danger. Sure enough, first J and then M came down with RSV. It was another three years before we were able to celebrate the retirement of the nebulizer that J used to ease the laboured breathing that kicked up without warning year-round.

The tooth issue, on the other hand, came as a huge surprise.

I thought we were doing everything right in the dental care department. We started using infant finger toothbrushes to massage the babies’ gums well before they had teeth. We added toothpaste when their first teeth broke through, and brushed morning and night, without fail. We brushed their teeth for them until they turned five, and gave them toothbrushes that they could practice with. Before M and J turned two, we introduced flossing, the the form of one-time-use kids’ flossers. To this day they consider going to bed without flossing unthinkable. Our pediatrician praised the girls for their dental hygiene. Even though I knew full-well that dentists recommended a first visit be scheduled at the sight of the first tooth, I put it off until the girls were three.

At their first visit, the dentist discovered cavities in both girls’ mouths. It turned out that both J and M suffered from enamel hypoplasia, or a lack of enamel on a number of their teeth. As luck, or more likely genes, would have it, our monozygotic daughters had hypoplasia on the same teeth. Their cavities were were also coordinated. Identical twins, with identical tooth issues, I suppose.

We left the dentists’ office with fillings, prescription fluoride toothpaste, and another reminder that however far away their premature birth feels, it keeps popping back up. At our next visit to the pediatrician, I told him the sad tale of the girls’ teeth, and he promised to pass along to the next preemie parents he saw the recommendation to get to a dentist soon. And now, I pass that recommendation to you.

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