Reunited

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Categories Birth Stories, Breastfeeding, Development, Formula, Infants, NICU, PrematurityTags , , , , , , 11 Comments

I got the best news in a long time today. A college friend’s twin boys were reunited at 2 months old. Her second NICU baby got to come home from the hospital, 7 weeks after his brother.

In the middle of the joy I felt for my friend, though, I felt an upwelling of the sadness, anger and helplessness that tainted the joy of my own babies’ release from the hospital, over 5 years ago. Homecoming is one of the ways that the NICU experience can differ for parents of premature multiples in comparison to preemie singletons. Many twins and triplets are released from the hospital simultaneously, but many are not.

Our daughters were born 7 weeks early, but had few problems apart from their small size. J had a hole in her heart, which eventually resolved itself, and M had a facial cleft that turned out not even to require surgery. Neither of these conditions required hospitalization, so they were textbook “feeder growers,” newborns who were hospitalized until they had fattened up enough to maintain their own body temperature and had the strength to suck enough nutrition to keep them healthy.

Our girls didn’t need any assistance breathing; they’ve been verbal and long-winded since the start. They were keep in warm isolettes, and fed a mixture of high calorie formula and my breast milk through feeding tubes inserted through their noses and threaded into their stomachs. Every three hours came a diaper change, weighing, blood sugar measurement, temperature measurement and feeding. We watched every number as they rose and fell, and I promised myself I would take notes when they got home so as not to double feed one baby and starve the other. J and M were cared for by the same nurse, so their schedules were offset by 15 minutes. One benefit to having NICU babies was that they were on a clockwork schedule by the time they came home.

There were 3 criteria to be met, we were told, before the girls could come home. They had to weigh 5 lbs (2.25 kg), be able to maintain their own body temperature, and take 8 meals in a row by mouth, drinking at least 31 mls of formula/breast milk each time. Every now and then, when J asks for her “warmed up milk, please,” at breakfast or dinner, I wonder at the way she guzzles 8 oz of milk down and think back to the days I tried to get her drink 1 oz by force of will alone.

We wanted all the girls’ energy to go to growing at first. Somewhere in the first week, I think, they were introduced to doll-sized bottles. It took a few tries to get them to suck, first 1 ml, then 3, more and more each meal. They finally made it up to 31 mls at a time, but couldn’t keep it up two meals in a row. It was just too much work.

M couldn’t finish her bottle at every feeding, but she made an effort. Once, I was even allowed to let her suckle at my breast, although the nurses took her away before she exhausted herself. J was less predictable. She’d suck like a champ and then suddenly get distracted, seemingly more interested in playing with the bottle than drinking from it. Two weeks in, she broke our hearts by refusing two meals in a row and being put back on her feeding tube. It was the only time I saw my husband so upset that he couldn’t stay in the NICU to monitor every last detail of our babies’ care. A friend took him out for a beer.

When our girls were 2 weeks old, the hospital staff pronounced them to be the healthiest babies in the NICU. They could afford to be downgraded to a less fancy-schmancy NICU within the same hospital network. We talked it through and agreed to free up their beds. However, when the paperwork arrived, we were asked to sign a waiver releasing both the hospitals and the ambulance service of responsibility for the babies during their transport. There was no way we were signing that, so the girls stayed put.

Two days later, M was ready to come home. She hadn’t quite made the weight cutoff, but they couldn’t see any reason she wouldn’t be just fine at home. She passed the carseat test, and home we went.

mcominghomealone

J was still on her feeding tube. I felt more torn as a mother of twins in that moment than I ever did before or since. I was celebrating the health of one of my daughters, but leaving the other alone at the hospital, without even her sister with her. My husband was away for an army training exercise, and I was still recovering from my C-section. Fortunately, my father-in-law was able to stay for 3 weeks, and drove us the 30 miles to the hospital every day so that I could deliver breast milk and steal a few moments with J. I couldn’t stay too long, though, since M was in her carseat in the hospital parking garage with Grampy.

After 5 long, agonizing days, J was ready to come home. It finally felt like my life as a parent could start. My friend just ended 48 days of that waiting, and I hope that her heart can finally begin to heal.

Did you get to bring your babies home at the same time?

Sadia’s daughters, M and J, are still short for their nearly 6 years, but Sadia is short for her nearly 33, so it works out nicely. They guzzle milk, grow, and keep each other busy in El Paso, TX.

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RSV

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Categories Infants, Medical, PrematurityTags , , , , , , , 4 Comments

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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Powerful instincts

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Categories Mommy Issues, PregnancyTags , , 9 Comments

They say that smell is one of the biggest memory triggers we have, and I know I’ve long found that to be true.  Yesterday I found it in a funny place.  At 9:30 last night, I found myself in my local emergency room (a whole lot of nothing, just making sure I hadn’t managed to lodge a piece of corn in my lungs, all is well).  The same hospital where my kids were born nearly a year ago, the same one where I spent so much time with twice-weekly ultrasounds and two different attempts at the 3-hour glucose test.

The parking lot and entrance were oh-so familiar, I could practically walk them in my sleep.  I remembered where the bumps in the ramps were, where to find the automatic door button.  Of course, instead of going down the hall to the lab or the elevators to the L&D floor, I made the right turn into the ER (quietly busy on a Sunday night).  What brought me back more that anything, more than signing my name three times on the form, more than the blood pressure cuff, was the smell of the soap in the bathroom.  They use the same soap in the entire hospital, of course.  How many times did I wash my hands during the four days post-delivery, and the three more of visiting the kids in the Special Care Nursery?  How many times, between the more than a dozen ultrasounds of my twin pregnancy, my seemingly endless blood draw attempts, and my one visit for false labor?  I’m glad that I associate that smell with my kids and what has become, in hindsight, the exciting anticipation of my pregnancy (I rather hated being pregnant at the time, but now I can look back on it with some degree of nostalgia and fondness).  I’m glad that smell memory replaced the memory of a weekend ultrasound in October when I found out an earlier pregnancy had ended, or the D&C that followed.

No, walking those familiar hallways and smelling those familiar smells (and knowing that I was clearly not having a major emergency) reminded me of last summer.  I was constantly at that hospital, walking the same steps to the mid-point of the first-floor hallway, turning right to the elevator to get to the 2nd floor. Out of the elevator, cut through the lounge to the small, inconspicuous office of my maternal-fetal medicine doctor (whom I adored), for another look at my yet-unknown babies. Little girl still small but growing, little boy pushing her out of the way to become the presenting twin.

Possibly even crazier than that smell-memory trigger was the unexpected thoughts of doing it all over again. Those creep into my head from time to time, and it’s all I can do not to smack myself.  I did not enjoy being pregnant in the least.  I have no desire to re-live the newborn days.  My kids aren’t even a year old, for pete’s sake!  But yet, there it is, biology / evolution / hormones kicking in and whispering, “are you sure?  Maybe just one more time?”  Heh.  Yeah.  Ask me again when they’re two or three… at least.

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