Meet a How Do You Do It? author

Marissa

Marissa is mom to fraternal twin boys, born in January 2012. While one of them has special needs and the other does not, they are both pretty amazing. Marissa majored in linguistics, served in the Peace Corps, worked with autistic children, and was half-way through nursing school before being put on bed-rest during her pregnancy. While she hopes to someday finish nursing school, it seems like she couldn’t have asked for a better background when fate handed her two awesome boys.

(We Will Never Be) Full-Term

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Categories Infants, Medical, NICU, Parenting, PrematurityTags , , 3 Comments

My boys are almost two, and I’m 32 weeks pregnant with our third son. Over the weekend, I spent some time in L&D. Everything is fine, but to say I had flashbacks to NICU is an understatement. In order to lighten the mood in my own mind, I re-wrote the lyrics to “Royals” (originally by Lourde). So without further ado, here is:

(We Will Never Be) Full-Term

I’ve got fine hair upon my flesh
I cut my teeth on breathing tubes and a blue Soothie
And I’m not proud of my address
In the NICU wing, no nursery envy

And every nurse is like:
De-sat
Jaundice
That was a bad brady
Art line
PICC line
Puttin’ in an NG

Kangaroo care, we’re being snuggled in our dreams

But everybody’s like:
PDA
Caffeine
Bathing in pink basins
Surgeons
Breast pump
Unplanned extubation

We don’t care, medical terms are your affair

And we’ll never be full-term (full-term)
It don’t run in our blood
Mom’s uterus just ain’t for us, now the machines all beep and buzz
Let me be your ruler (ruler)
You can call me preemie
And someday I’ll breathe, I’ll breathe, I’ll breathe, I’ll breathe
Let me live that reality

My twin and I aren’t gonna code
You watch our hearts on the machine when we’re sleeping
And everyone who knows us knows
That we’ll be home soon, give the hospital your money

But every nurse is like:
De-sat
Jaundice
That was a bad brady
Art line
PICC line
Puttin’ in an NG

Kangaroo care, we’re being snuggled in our dreams
But everybody’s like:
PDA
Caffeine
Bathing in pink basins
Surgeons
Breast pump
Unplanned extubation

We don’t care, medical terms are your affair

And we’ll never be full-term (full-term)
It don’t run in our blood
Mom’s uterus just ain’t for us, now the machines all beep and buzz
Let me be your ruler (ruler)
You can call me preemie
And someday I’ll breathe, I’ll breathe, I’ll breathe, I’ll breathe
Let me live that reality

ooh ooh oh ooh
We’re smaller than you ever dreamed
And I’m in love with clothes sized “P”

ooh ooh oh ooh
Life is great in Intensive Care
We’re your full-time love affair

And we’ll never be full-term (full-term)
It don’t run in our blood
Mom’s uterus just ain’t for us, now the machines all beep and buzz
Let me be your ruler (ruler)
You can call me preemie
And someday I’ll breathe, I’ll breathe, I’ll breathe, I’ll breathe
Let me live that reality.

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Foodie Friday: Suck-Swallow-Breathe

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Categories Breastfeeding, Fear, Feeding, Foodie Fridays, Guilt, Medical, NICU, Parenting, Special Needs, Theme WeekTags , , , , , Leave a comment

Prematurity Awareness Week 2013: How Do You Do It?

World Prematurity Day November 17In the United States, 1 in 9 babies is born prematurely, 1 in 10 in Canada. Worldwide, over 15 million babies are born too soon each year. While not all multiples are born prematurely, a multiple birth increases the probability of an early delivery. Babies born prematurely, before 37 weeks gestation, are at a higher risk for health complications in infancy, some of which can have long-term effects. Full-term infants are not all free from their own health complications, of course.

In honor of November’s Prematurity Awareness Month, led by the March of Dimes, How Do You Do It? is focusing this week’s posts on The Moms’ experiences with premature deliveries, NICU stays, health complications, special needs, and how we’ve dealt with these complex issues.


Almost all preemies have difficulty with feeding, and my boys were certainly no exception. In order to eat, a baby has to be able to suck (at the breast or bottle), swallow, and breathe. But not at the same time, of course, and trying to coordinate that is very difficult.

Mr. D was born with the ability to do all three. He never required oxygen support, could generally swallow what was in his mouth (although he did need “reminding” from time to time), and could hold onto a pacifier, bottle, or my nipple like a pro. What he couldn’t do was figure out how to do all three in such a manner to ingest enough milk to live…especially when he’d rather be sleeping.

D’s challenges were fairly typical for preemies. Eating is hard work. So hard, in fact, that a twenty-minute rule is placed on both breast- and bottle-feeding in most (all?) NICUs: the baby gets 20 minutes to eat all he can, and then is weighed (if breastfeeding) or the amount remaining in the bottle is examined, and the rest of the required meal is poured down the feeding tube. I wanted to breastfeed, but was told we could only attempt it twice a day, as it’s even more work to extract milk from a breast than it is from a bottle.

The first time I breastfed Mr. D, he took me by surprise. He did really great! The lactation consultant warned me that many babies take one or two good feeds from the breast, and then begin to struggle. That was the case for him: he could extract a few drops of colostrum, especially when I pretty much hand-expressed it into his mouth, but once my milk came in, it was beyond him. He would latch on, and then fall asleep.

Suck-swallow-breatheHe didn’t fare much better with the bottle. I was taught how to hold him, how to stroke his cheek or under his chin to “remind” him to swallow, how to burp him, how to tickle his feet when he was nodding off…and he would still only swallow a few milliliters. He would sometimes become fearful of the liquid in his mouth, and hold his breath until I sat him up and helped him to dribble it all out. But mainly he would just look up at me, with an expression of what felt like disdain on his face, and then close his eyes. He held onto the nipple (mine or the bottle’s), but that was it. That was all he wanted to do.

The nurses told me it often happens like a switch—nothing, nothing, nothing, BOOM: eating! That wasn’t the case for Mr. D. Instead, he’d take a few more milliliters each day, most days. What was exceedingly frustrating to me was that, as his weight (from his oral plus tube-feedings) increased and his IV-nutrition was tapered off (to end abruptly when he yanked out his second scalp IV and they couldn’t find better access), his required intake went up, too. He was supposed to eat 23 mls, and would manage 19, and I’d go home to pump in triumph, only to return to discover they’d raised his goal to 26.

But he did improve. He kept getting so close. I felt like we were nearly there. Feeding was the only thing keeping him in the NICU, and I wanted him home.

He developed reflux. My pediatrician tells me “100% of babies have reflux”, and I don’t doubt her. Mr. D’s was worse than some, which again is common with preemies. That muscle at the top of their stomach (cardiac or esophageal sphincter) is as weak as their other muscles, and is forced into doing its job way too soon. One of his day nurses asked me if there was a history of milk intolerance in my family. Yes, there is: I was allergic to milk protein for my first few years of life. She suggested eliminating dairy from my diet, in case Mr. D had the same problem. I did. We also began fortifying his breast milk with soy formula rather than the special preemie formula. (Breast milk has about 20 calories, and it is very common to add formula to it to boost that to 22, 24, or even 27 calories for premature babies, as their tiny stomachs can’t hold enough volume to give them their necessary caloric intake.) I don’t know that it made much difference, but I was willing to try anything.

On his tenth day of life, he pulled out his NG-tube for his tenth (estimated) and final time. He wasn’t meeting his goals, but they decided not to replace it. He did well, getting closer and closer. On his thirteenth day, we were told we could take him home the following day: Valentine’s Day.

At 6 am on V-Day, I got a call from the neonatologist. She was just coming on shift having been gone a few days, and she didn’t think we should take Mr. D home. “He simply won’t grow on this,” she said, referring to his intake and reflux. I asked her if she was planning on re-inserting his feeding tube. No, she was not. Then why? What could they do for him that we couldn’t do at home? “He simply won’t grow,” she insisted. We reached an agreement: if Mr. D could eat all 55mls of each of his day feedings that day, and I agreed to take him to his pediatrician in two days instead of three, I could take him home. She strongly implied that she disagreed with this, but not enough to rule it out.

Challenge accepted, I thought. For each meal, I stripped an irate baby down to just his diaper. There was no way I was letting him get warm and comfy. I did not alert the nurses to his small spit-ups during burping. I twice emptied the remaining 2-3 mls of milk into the burp cloth at the end of his 20 minutes. And he got to come home with us that evening.


Mr. A could neither suck nor swallow nor breathe at the start. He did take early breaths on his own, but with much effort. The NICU staff quickly determined that he could not maintain his breathing, and gave him surfactant and intubated him. Once extubated, no one was surprised that he could not suck. He actually had the reflex, and would happily gnaw on a Soothie if it was held in his mouth. His cleft soft palate, however, left him with the inability to form negative pressure in his mouth. As such, he could not draw liquid from a nipple, nor could he hold his own pacifier in his mouth by sucking merrily to sleep. In order to assess his ability to swallow, the neonatologists had the nurses perform what I have since learned is a very outdated “test”—they poured sterile water into his mouth. They assured me that, if inhaled, it would not cause any problems, as it was sterile and a very small amount. The first time they “tested” him, the liquid slowly dribbled out of his mouth. He could not swallow. They repeated the “test” two days later, and he “passed”—the water went down somewhere, and they assumed it went down his esophagus. He was cleared to begin oral feeds.

I was introduced to a variety of bottles and nipples, all specially designed for babies with clefts. I was a bit dismayed to realize most of the nurses had no more familiarity with these “feeding systems” than I did. Essentially, they all worked the same way: a nipple was placed into A’s mouth and he chewed on it and the nipple released milk due to compression. Some of the bottles were squeeze bottles, so that I could force extra fluid into his mouth.

It was a disaster. I was too naïve to realize how large of a disaster it truly was. Only once did Mr. A take in over 10 mls (two teaspoons). Feeding him generally went like this: hold him in a specific way (hands angling his jaw upwards, entire body elevated to at least 45 degrees, while trying to support his head and body but not of course cradled in my arms), introduce nipple, watch him struggle, watch him desaturate (often followed by heart rate decelerations), fearfully yank the nipple out of his grey-blue lips, let him recover, repeat. At the end, measure remaining milk and discover only a handful of milliliters to be missing, and then pour the remainder down his feeding tube while snuggling him to sleep.

After a few days, I told the nurses I no longer wished to feed him by mouth. I was terrified. I could feel, somehow, that his desaturation and bradycardia events were different than Mr. D’s episodes of breath-holding. I hated feeding him, he hated eating, I feared I would kill him. The nurses told me I didn’t have to do anything I wasn’t comfortable doing, meaning they would continue to do his feedings for me. That wasn’t entirely what I meant, but I was too insecure to argue. And so he struggled along for a few more days, with me or my husband holding him while the nurses fed him. I came to accept his “behavior”—after all, he was gaining weight and showed no ill signs. So I resumed the feedings.

When he was transferred to the children’s hospital, he was evaluated by their feeding and development expert. I wasn’t there (we were not forewarned of it, or I would have been!), and came to his crib an hour later to be informed by the nurse that he was no longer to eat by mouth. Ever. He would need a surgically placed tube going directly into his stomach. I was irate. He had been, I thought, showing signs of improvement. And here some lady looked at him once, did not even give him a chance to truly try, and ruled out eating for the rest of his life? I made the staff aware of my displeasure, and they promised me she would speak to me. She didn’t, not for some time.

Mr. A was eventually given a swallow study: he sat in a car-seat-like chair, being fed radioactive barium mixed with breast milk to various consistencies: pudding, nectar, thin. X-ray-like machines videotaped the entire event. And there it was in black and white: Atticus was drowning. The milk went up his cleft palate and into his nasal cavity, and from there it entered his trachea and lungs. What remained into his mouth also largely ended up in his lungs. He was unable to cough to protect himself. My baby boy had silent aspiration.

I felt awful. Guilty, guilty, guilty. If I’d held my ground at the first hospital, if I’d truly listened to my instincts, we would have stopped feeding him by mouth weeks ago. He must hate me. He must fear me. My job was to keep him safe, and here I was, endangering him every three hours on the dot. And my pride, my pride at what I thought was improvement and my wrath at the feeding therapist, who had told me what I had been unable to believe, as if my wishing could make those drops of milk enter his stomach safely. “He was took 13 ccs!!” I had argued, over and over, his record amount so strong in my memory. Almost half an ounce, I was forced to admit, almost half an ounce of my milk flooding into his lungs.

It did not occur to me until almost a year later that who I should have been mad at, instead of myself, were the doctors and nurses at his birth hospital. I was in over my head, but so ignorant I had no idea. They should have known. They should have recognized what I felt in my heart and what led me to ask to stop: this was not normal preemie behavior. None of this was typical. And they didn’t. True, the most challenging preemies are probably passed off to the children’s hospital sooner than my Mr. A was, but watching for signs of aspiration is not a difficult art, and it’s one that should be taught to and remembered by everyone working with sick babies.

Mr. A got his G-tube placed when he was negative-one-week, adjusted. His feeding plan was changed to reflect that, while he was not to eat by mouth, certain exercises could be done to help stimulate his oral-motor skills. Feeding has continued to be one of his biggest challenges, but I am happy to end this by saying that we are now very close to replacing one of his 5 daily tube-feedings with an entire meal eaten by mouth. And as for Mr. D, he is an avid eater, and above the 90th percentile in both height and weight. The suck-swallow-breathe struggles are behind us all.

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Special Needs in the NICU

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Categories Anger, Congenital Anomaly, Emotion, Fear, Feeling Overwhelmed, Grief, Health, Love, Medical, Mommy Issues, NICU, Parenting, Special Needs, Theme Week, Unique needsTags , , , , , 2 Comments

Prematurity Awareness Week 2013: How Do You Do It?

World Prematurity Day November 17In the United States, 1 in 9 babies is born prematurely, 1 in 10 in Canada. Worldwide, over 15 million babies are born too soon each year. While not all multiples are born prematurely, a multiple birth increases the probability of an early delivery. Babies born prematurely, before 37 weeks gestation, are at a higher risk for health complications in infancy, some of which can have long-term effects. Full-term infants are not all free from their own health complications, of course.

In honor of November’s Prematurity Awareness Month, led by the March of Dimes, How Do You Do It? is focusing this week’s posts on The Moms’ experiences with premature deliveries, NICU stays, health complications, special needs, and how we’ve dealt with these complex issues.


Throughout my pregnancy, I knew premature delivery was possible, perhaps even likely. I read up on prematurity and the NICU. I was on bed rest for 12 weeks, and had access to the internet, after all. I thought I knew, more or less, what to expect from a NICU stay, especially as my pregnancy stretched into that “they’ll probably be just fine” stage after the magical 28th week.

I did not know, did not even suspect, what was in store for us. It took me a very long time to grasp it. In fact, I still may not fully comprehend things.

There is a whole other side to the NICU. Not just premature babies go there. Other babies, who may have been full term, end up there for various reasons. Whether by coincidence or by design (I never quite asked), our children’s hospital had an entire room (at least one) full of these babies, and that was where my Mr. A was transferred on his 15th day of life.

On his first day, and all the days leading up to it, I had no clue. He was measuring small, but doing fine. His anatomy scan was perfect. Our first trimester screenings—while not fully reliable for twins—were perfect. What they did not detect was undetectable: a cleft soft palate, dysgenesis of the corpus callosum, malrotated intestines, tracheomalacia, and other issues that, for his privacy, will remain undiscussed. At the root, a so-tiny and yet so-significant missing chunk of DNA. We did not find all this out on the first day, first week, or even first month. And we are not alone in this.

With a typical premature baby, of course there is no set path, and no guarantee. But with a special needs baby, especially one with a rare diagnoses, there’s even less. Every exam might have another pitfall. And when your baby is early and/or very small, as our Mr. A was, that’s all there is. The bad news just keeps coming, and they can’t do anything to fix it until he is bigger, if at all.

It is frightening. It is lonely. It is so very lonely. When you converse with parents of typical preemies, they cannot understand why your baby is doing so poorly. Conversations with parents of other medically complex babies are equally challenging: you are all new to this. “Oh, your baby’s heart is a mess? My son’s is just fine, but they want to give him a tracheostomy. What do you think I should do?”

specialneedsnicu

Conversations with doctors and nurses can be equally frustrating. Most of them, I have found, do not want to hurt your feelings. They might find refuge in medical terminology, they might be evasive, they might conceal information about your child’s health because they don’t want to overwhelm you. Worst of all, they may write you off completely, believing that your child is not worthy of their time and energy. All of these happened to us during our NICU stay.

When A was born, he did not have a gag reflex. I asked the neonatologist what that might mean for him, aside from the obvious. Her reply? “Oh, some sort of midline nervous issue,” and she walked away.

The doctor who gave us A’s diagnoses refused to answer any questions, saying, “But really, who can predict. My own son has learning disabilities. You never know.” We were not asking what his grades would be in 3rd grade, we were asking “But what does all this missing DNA mean?” The information pamphlet he handed to us (upside down, slid across the counter, like some sort of dirty secret) was printed entirely out of order and contained information on every known issue with deletions on the long arm of Chromosome 2, meaning not all of it applied to our son and much of it was conflicting. There were no page numbers and the printing cut off photos and such, so we were unable to piece it together and finally found it on the internet after we’d gone home. I don’t think the printing was intentional, but I do think he did not even glance at it and did not want to tell us anything it said.

A doctor, two weeks following A’s major abdominal surgery, told me he didn’t think A would ever be on full feeds, “because of his syndrome.” When I said he had been on full feeds (by tube) prior to the operation, the doctor at first refused to believe me, and then said, “Well, sometimes kids with syndromes just get worse.” My rage following that conversation ensured that that doctor never treated my son again.

Our underlying question, that I was only ever able to voice once, was: “Is all this worth it? Am I torturing my son for no reason? Should we just let him go? What will his quality of life be? Will he ever be happy?” The doctor I asked this to simply said, “Well, will your other son ever be happy?” To have asked the question that tormented my soul and to receive such a side-step of a response silenced me. I decided right then that, unless anyone flat-out told me that A was going to die, he would not die. He would be happy and just fine, thank you. (While it turns out that this is more or less the case, I was extremely angry to discover, by reading his medical records and asking more pointed questions of some of his doctors and therapists, now that I am in a more stable place myself, that very few people expected A to live to see his first birthday. The fact that no one, not a single person, prepared me for this is something I cannot forgive, even though it did not come to pass.)

This post is rambling. I have attempted to fix it numerous times. I simply can’t. The reality of having a child with complex medical needs in the NICU is overwhelming and, frankly, incomprehensible to live, and it appears that writing about it is the same.

The second piece of this all is the second baby. I was dealing with this and another newborn. At first, I could not distinguish things in my mind. That doctors seemed so fearful and pessimistic about A led me to feel that both my boys were at risk. No one ever called D a “feeder/grower”, no one ever said, “This little man will be just fine.” I was not well-versed enough in preemie-land to understand. Neither could eat, neither could maintain their temperatures, neither was awake for more than a few minutes at a time. I was as nervous making my post-pump midnight, 3, and 5 am calls to the NICU when asking about D as I was about A. Eventually it became clear to me that D was doing well and would be coming home soon. I did not realize how long of a road A had ahead of him (as their birth hospital, despite having a Level III NICU, could not do the imaging tests we needed, much less the surgeries). I’m glad of that. It allowed me to feel joy at D’s gains as well as A’s much smaller ones. I did feel a fundamental sense of wrongness when we took D home, leaving A there by himself…but I’d felt the same way upon my own discharge, leaving both my boys behind.

A was transferred the day after D came home. They’d kept him there as a kindness to us, but also because, really, nothing was so urgent that anyone would risk doing anything to such a small and fragile baby. He would have been doing the same things—trying to get bigger and stronger in order to face the upcoming challenges—at the children’s hospital, so there was no need to move him. But with one baby at home and one baby in a further (though still relatively close) NICU, life became even more complicated. D could not visit A. No baby can ever go back to the NICU (at least at our hospital) once they’ve left, because the risk of their “outside germs” infecting the delicate babies in the NICU is simply too great. I understand that. But it meant that, not only were my heart, body, and milk-containing breasts torn into two locations, I had to find babysitters. My husband needed to save his FML time for surgeries, scary times, and A’s homecoming. (We did not save nearly enough, but we did not know.) I had to leave D with my mother or grandmother, and A with his nurses. It was awful. It was exhausting. Pumping every 3 hours for A, who could not eat, and trying to establish breastfeeding with D (which I could not fully do until A came home), etc.

D came home when they were 14 days old. A came home on April Fool’s Day, after several false starts that made us unable to believe he was coming home until we were in the car. That was their 62nd day of life. 48 days apart. 48 days of driving from one place to another, always missing one baby, always feeling like I was failing both. I was so glad to close the door on that.

Of course, the other thing about a child like A is, that door never closes (until it is slammed shut for good, which is too horrifying to think about). I did not know it at the time, but ten days later, A would be back in intensive care. But it would be the PICU, then and again and again and again. Our NICU journey, at least, was behind us.

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All This and Babies, Too?: Leaving the NICU with Medical Equipment

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Categories Medical, NICU, Prematurity, Special Needs, Theme WeekTags , , , 5 Comments

Prematurity Awareness Week 2013: How Do You Do It?

World Prematurity Day November 17In the United States, 1 in 9 babies is born prematurely, 1 in 10 in Canada. Worldwide, over 15 million babies are born too soon each year. While not all multiples are born prematurely, a multiple birth increases the probability of an early delivery. Babies born prematurely, before 37 weeks gestation, are at a higher risk for health complications in infancy, some of which can have long-term effects. Full-term infants are not all free from their own health complications, of course.

In honor of November’s Prematurity Awareness Month, led by the March of Dimes, How Do You Do It? is focusing this week’s posts on The Moms’ experiences with premature deliveries, NICU stays, health complications, special needs, and how we’ve dealt with these complex issues.


When you are discharged from the NICU, you might be bringing home more than your baby/babies. It is not uncommon to leave with at least one piece of medical equipment. Our Mr. A, who was clearly into accessories, came home with a pulse oximeter, oxygen, suction, and a feeding tube, and shortly thereafter acquired a PICC line. All this equipment comes with extra supplies (tubing, dressing, probes, cords, chargers, pumps, etc.) It can be very overwhelming. Here is some been there/done(doing) that advice:

You will be set up with at least one “home health” company, who will own the equipment you rent (or rent-to-buy) and deliver the supplies and equipment you keep. They may also provide nurses to set things up initially, do blood draws, and, if you’re lucky/unlucky enough, perhaps even a “full-time” (8 hours a day is NOT full time!) nurse to help manage your child’s care.

Before you leave the NICU, you will be trained with the equipment. Almost all of it will vary in some ways from what you used in the hospital, so make sure to familiarize yourself with it. The home health company sends a rep to the NICU when they deliver the equipment—that is the person to drill with, as your nurse may be unfamiliar with your specific items. Ask for and keep the instruction manuals, or get them off the internet. It’s amazing how suddenly paralyzed you can become when attempting to, say, hook up the humidifier to the oxygen tank. Learn it before you need it.

equipment

Try to look on the bright side. Yes, it sucks that your baby won’t be unencumbered by tubes or wires…but hey, it’s getting you home that much earlier! All those items on the “you can go home when…” checklist can be circumnavigated. Failed the car seat challenge? Have a car bed! Can’t maintain O2 sats? No biggie! Take all meals by mouth? No thanks. No need to worry about what is growing inside the bulb syringe when you have a suction machine. No risk of dehydration with an IV! It won’t change the fact that your baby needs the equipment, and you do have the right to mope about that, but eventually either you get past it, or you send the equipment back.

Don’t send the equipment back, at least not right away. It can be so exciting when you realize your child hasn’t needed deep suctioning for a month, and so tempting to return the machines as a sign of progress. Hold onto them for as long as you can, as illness may strike. Home, like the NICU, can be one-step-forwards, two-steps-back. And insurance companies can be jerks about re-authorizing equipment.

It will be hard to get around. You’ve got a baby, infant seat, diaper bag, and all the Extras. Even if, like us, you are told to keep your baby/babies away from all germs (and therefore all people and places and things), you will still have to see your pediatrician and all specialists your child(ren) need, within days or weeks of coming home. I had to have someone come with me in order to manage everything, and so I could ride in the back with Mr. A in order to suction if needed. My mother at one point remarked that I should get a temporary handicap parking tag. I wish I had. Look into it. Depending on what your baby is attached to and how often, it may even be difficult to get around your house. Be adaptable. Set up a place for the baby to sleep in the living room. Abandon the IV pole, or at least keep it permanently in the nursery/your room/where your baby/babies sleep at night. It is very hard to navigate and takes up a lot of space. Most of the equipment comes with carrying cases—combine, discard, adapt as necessary. The goal is not to turn your home into a hospital, but to make the equipment work as best as it can for your lifestyle.

Leaving hospital with medical equipment? GREAT tips to make it work as best as it can for your lifestyle. Click To Tweet

And lastly, take everything anyone gives you. Meals from friends, an hour’s visit from a relative so you can pump breast milk or sneak in a nap. All the pink bins and every open box of gauze the hospital offers. The maximum number of tubes/probes/dots/whatever your insurance will cover that month. (If eventually you have too many supplies, cut back. But insurance doesn’t look at the long-term: if you get three a month and one month you only order two, you cannot get four the next time, even if one didn’t last as long as expected. If you truly, truly have more than you need, there are Facebook groups for exchanging or donating supplies.) All 6 nurse visits. Medicaid and SSI and WIC, if you qualify. Whatever. It can be hard to receive help, but no one gets extra points at the end for having “done it alone”, and it is easy to not notice how truly overworked and exhausted you have become until you suddenly feel you can go no further. If it takes a village to raise a child, it takes all that and then some to deal with preemies with complex medical needs.

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A&D’s Birth Story: 35 weeks 2 days

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Categories Birth Stories, Infants, Medical, NICU, Parenting, Pregnancy, Prematurity, Special Needs, Theme WeekTags , , , , , Leave a comment

Prematurity Awareness Week 2013: How Do You Do It?

World Prematurity Day November 17In the United States, 1 in 9 babies is born prematurely, 1 in 10 in Canada. Worldwide, over 15 million babies are born too soon each year. While not all multiples are born prematurely, a multiple birth increases the probability of an early delivery. Babies born prematurely, before 37 weeks gestation, are at a higher risk for health complications in infancy, some of which can have long-term effects. Full-term infants are not all free from their own health complications, of course.

In honor of November’s Prematurity Awareness Month, led by the March of Dimes, How Do You Do It? is focusing this week’s posts on The Moms’ experiences with premature deliveries, NICU stays, health complications, special needs, and how we’ve dealt with these complex issues.


My pregnancy had been difficult, to say the least. From 6 weeks on, I was beset with a very severe case of “morning” sickness, known as hyperemesis gravidarum. Despite medication, I vomited multiple times every day of my pregnancy (and, in fact, for about a week afterwards). Mr. A did not have a measureable heartbeat at our 7-week ultrasound, and measured very small. He developed a nice, strong heartbeat, but continued to measure behind. When I was 21 weeks, a follow-up anatomy scan revealed a complication, not with the boys, but with me: I had cervical funneling. I was put on bed-rest.

At 23 weeks, a high-risk OB doctor informed me that our Mr. A had fallen completely off his own growth curve, and had a very dim prognosis. The doctor said it was probably a virus, infection, or placental failure. He suggested either delivering between 24 and 26 weeks, or giving up on Mr. A. The panic and helplessness I felt still clutches at my heart. I felt so incredibly torn: why should I punish Mr. D by dooming him to a very premature birth, simply because he was a twin? But how could I give up on Mr. A? Whenever people say, “I always wanted twins!” or wish twins upon someone undergoing fertility treatments, I flash back to this moment, and think no, no, you don’t want twins, please hope instead for a healthy, singleton pregnancy.

It turned out, much to my joy (with a side-dish of pure rage), that Mr. A had no virus, no infection, no failing placenta, but instead an incompetent doctor. The ultrasound machines had switched to different software or something, and hadn’t properly calculated estimated gestational age, and the doctor didn’t bother to look at raw numbers before telling me this dismal news. I had multiple follow-ups at different offices, plus a ton of blood work, and everything was fine. Mr. A was small, but doing just fine.

The weeks crept by, and I remained pregnant. I was even briefly off bed-rest, for 3-week span that included Christmas. I was, however, having very regular contractions. I had non-stress-tests twice a week, and after each one, they wanted to send me to L&D. But my funneled cervix was holding fast, so I remained on bed-rest and carried my boys all the way to my 35th week, much to the amazement of myself and my OB. I was having ultrasounds every 3 weeks to monitor Mr. A’s growth, and he was holding steady on his own curve, with Mr. D riding along at about the 50%ile.

On Tuesday, January 31st, I went in for another NST. My husband happened to have that Tuesday off, and so he came with me. My boys, especially Mr. A, gave the nurses fits at each NST, refusing to stay still for the required 20-minutes of continuous monitoring, stretching these tests into hours-long events. On this day, Mr. A was so wiggly that they decided to simply to a biophysical profile on him instead, and throw in some growth measurements for kicks.

They never got that far. The ultrasound showed Mr. A hadn’t grown in 10 days. He had, according to their measurements, actually shrunk. (I do know that babies do not grow shorter, but they can lose weight. We suspect this is what happened to Mr. A.) More alarmingly, the his umbilical cord was showing reverse blood flow. Mr. D was doing great, but my husband and I were pretty sure we knew what was coming.

But first we had to wait. The tech could not say, “These babies are coming out.” Even the high-risk OB would not say, “Today is the day.” I was sent to my regular OB’s office, where we waited. In the mean time, I called my younger sister, who is an OB in a different state, and left her a voicemail explaining what was going on. And my mother called me, and so I told her as well. About 4 hours after my NST should have been, my OB sat down with me and my husband, and said that she would schedule a c-section for 5 pm, so not to eat or drink. I had very much wanted a vaginal delivery, and she was even willing to perform a breech extraction, but with both my boys being transverse and with my lower baby being significantly smaller than my upper baby, that was off the table. I had kind of seen this coming, and really, the bottom line of my birth plan was “everyone out, alive”, so c-section it was.

The following 2.5 hours were very strange. We went home, I packed a bag and took a picture of my pregnant belly. My husband went to his office to finalize his FMLA. I watched an old episode of “The Daily Show”, thinking, “This will be the last time I sit on this couch without a baby in my house.”

I was wrong about that. While plenty of 35-weekers do indeed come home from the hospital with their moms, with little to no NICU stay, such was not to be the case for my boys. I had gotten beta-methasone shots to mature their lungs about a week prior, so I did have reason to hope. However. Mr. D had what is known as “wimpy white male syndrome”—he just did not do as well as girls or babies of other races would do. Mr. A turned out to have a very rare chromosomal abnormality, and would have needed extensive NICU time even if he had been full-term. I believe with all of my heart that the only reason Mr. A survived at all was because he was a twin. If he had been a singleton (as my current pregnancy is proving), I would not have had cervical funneling, extensive contractions, multiple ultrasounds because they simply couldn’t see Mr. D’s diaphragm or Mr. A’s kidneys due to positioning, etc. My OB-sister thinks that perhaps they would have noticed that my belly was measuring small, but frankly I am not convinced. Of course, if Mr. D had been a singleton, he would very likely have been full-term. Thus I think both my boys were in the NICU solely due to being multiples, but that Mr. A would not have made it that far if he were not.

But dreams about my future eventually gave way to reality, and we left for the hospital. My mother met us there. My husband and I had agreed that his job was to stay with the babies, and my mother felt that it was her job to stay with me.

They monitored the boys for a bit, then wheeled me into the freezing OR room. The room was teeming with people: a full NICU team for each baby, my OB and her partner, the anesthesiologist, a few nurses, and a medical student who got the fun job of holding the little tray while I vomited into it. I have always reacted poorly to medications of any sort, and the spinal and morphine and whatever else they used was no different. My husband came in, dressed to impress in sterile gear, and held my hand while they made the incision. There was a lot of tugging, which felt very odd. Mr. A was really wedged into my pelvis, and extracting him was difficult. But I heard them say, “Here he is!”

Someone—probably a NICU doctor—showed me my firstborn for less than a heartbeat. I was not allowed to snuggle him as I so longed to do, but I could clearly see why: he was a very scary shade of grey, and not crying. “He looks so blue!” I exclaimed, but no one answered. “Will he be ok?” Then I heard a weak cry, and began to sob myself. He would, he would be just fine.

And then, “5:31 pm, Baby B”…and I saw my Mr. D. They let me kiss him. I heard them call out Mr. A’s weight—3 lb 12 oz. That was 6 ounces less than the estimate, but I couldn’t dwell on that. He was 17.25 inches long. They took Mr. D and weighed and measured him: 6 lb 2 oz (exactly as estimated) and 19.5 inches. A’s APGARS were 6 and 7, D’s were 7 and 8. I think they would have let me spend more time with Mr. D, but my Mr. A needed to go to the NICU, as he was having a very hard time breathing and clearly needed surfactant and intubation (not that I could see this, as my OB was still mucking around in my uterus, extracting placentas and massaging blood out and whatever else goes on). My husband left with them, as did my heart.

I was sewn up and taken back to recovery, where things did not go well. I continued to vomit, and began shaking uncontrollably. The nurse seemed unphased, but my mother was very worried, I was I. My husband returned briefly to show me pictures of the boys, then left again. A neonatologist stopped in to give me news I couldn’t yet process: Mr. A had a cleft palate and was doing much worse than he should be. I just wanted to be with them, to see my boys, to hold them, to kiss them. I was eventually taken to a room on the floor, shaking less but still vomiting. I was told I couldn’t see them until I could walk from my bed to the wheel-chair unassisted. They would not even let me attempt this until 5 hours after their birth. When they did, I feared I wouldn’t make it. I believe I walked those 3 steps on will-power alone.

I was wheeled into the NICU, and saw my beautiful sons laying in adjacent open warmers. Mr. D had an IV in his scalp and an NG-tube down his nose, and all the monitoring devices, but no oxygen. I was allowed to hold him for a few minutes. I cried the whole time, at the love I felt for my beautiful son. Mr. A was on an oscillating ventilator, had an umbilical IV and an arterial line in his right arm, an I was not allowed to hold him until his fifth day of life. But I cried to look at him, out of love.

I did not feel a “completion”—a sense of “now I have my babies”, an ending to a birth story. I never really did. I suppose it truly ended 62 days later, when both of my sons were finally home from the NICU, and I was able to hold them both in my arms. It was a very long journey, but worth every minute.

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NICU Names: Guilt, Anger, Sorrow

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Prematurity Awareness Week 2013: How Do You Do It?

World Prematurity Day November 17In the United States, 1 in 9 babies is born prematurely, 1 in 10 in Canada. Worldwide, over 15 million babies are born too soon each year. While not all multiples are born prematurely, a multiple birth increases the probability of an early delivery. Babies born prematurely, before 37 weeks gestation, are at a higher risk for health complications in infancy, some of which can have long-term effects. Full-term infants are not all free from their own health complications, of course.

In honor of November’s Prematurity Awareness Month, led by the March of Dimes, How Do You Do It? is focusing this week’s posts on The Moms’ experiences with premature deliveries, NICU stays, health complications, special needs, and how we’ve dealt with these complex issues.


Aside from the times I truly feared for the health, happiness, and life of my babies, one particular thing stand out when I think back on how very emotional the NICU can be: my children’s names.

My husband and I had given so much thought to their names. We’d discovered they were both boys when I was 18 weeks along, and had full names picked out for them by before I was 20 weeks. We always referred to them by name from then on, never as Baby A or Baby B. We chose names that were very different but harmonized well. It was important for us that their names not reflect their status as twins: we very much wanted them to feel like they had individual worth from before they were born. (This is a personal thing, I know, and I am not disparaging how others name their multiples; I am simply stating how things were for us.) Even before they were born, we felt that they (particularly our Mr. A) fit perfectly with their names.

One other thing of note: I kept my maiden name. We discussed what to do with the boys’ surname—mine, his, hyphenate, combine, make up an entirely new one—and eventually decided to give them my husband’s last name. We both like the name, and as my husband is both adopted and an only son, we thought it might matter to their paternal grandparents.

When they were born, the boys were on record as MyLastName,MyFirstNameBBA (for Baby Boy A) and MyLastName,MyFirstName,BBB. And they kept those names. And kept and kept and kept those names. The nurses made nametags with their given names and placed them on their warmers, but everything else was MyLastName,MyFirstName,BBA/B.

namesThe names on their ankle bands. The names on my wrist bands. The names we had to give when calling to ask for updates. The names we had to state at the intercom to be admitted to the NICU. The names we had to sign in under to visit them. The names on the whiteboard. The names on the labels I stuck to each bottle of expressed breast milk. The names on the records—with a huge red NAME ALERT marked, to remind doctors and nurses that there was another patient with an extremely similar name, and so meds and procedures must be very carefully checked to ensure that they had the correct patient. The names printed out on the instructions and med dosages for Code Blues taped on their warmers. The names the doctors used at rounds.

I hated it. I cannot even begin to describe the feelings of anger, sorrow, and helplessness I felt about their NICU names. Not a single part of those names were actually my sons’ names. At heart, I felt like I was not their mother; that they had been stolen from me and renamed what the hospital thought was best. I knew my boys needed to be in the NICU, and I accepted that. But it was hard, so very hard, to not feel like their mommy. I didn’t change their first diapers or put on their first outfits (which came later). I wasn’t the one who decided what and when and how much to feed them. I couldn’t even hold them without permission (although that quickly ceased to be the case with Mr. D). And they didn’t get their real names, their true names, the names we had loved and loved them with, until they came home. Even when Mr. A was transferred from his birth hospital to the children’s hospital, he was admitted as MyLastName,MyFirstName,BBA. I raged and pleaded, but “nothing could be done”. A simple matter of hospital protocol meant that my sons had been robbed of their identity.

I realize this is not rational. I even realized it at the time, despite being overwhelmed with postpartum hormone shifts and scary diagnoses and not being able to watch my sons breathe as I fell asleep. I think I channeled most of my grief at the whole situation onto the issue of their names. But recognizing this intellectually is not at all the same as feeling it emotionally. And emotionally, I felt like their names had been stolen from me, along with all those precious newborn moments I missed, shared with strangers, or experienced in a setting that made the whole thing feel incongruous. My babies were simply not my own: they were shared with a very large staff of doctors, techs, and nurses (some of whom I never met or only briefly met) and all the love in the world could not change that. And their names reflected that. It hurt, and even now, a year and a half later, I am not “over” it. I don’t think I ever will be. I don’t see how one ever could be.

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NICU Terminology

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Prematurity Awareness Week 2013: How Do You Do It?

World Prematurity Day November 17In the United States, 1 in 9 babies is born prematurely, 1 in 10 in Canada. Worldwide, over 15 million babies are born too soon each year. While not all multiples are born prematurely, a multiple birth increases the probability of an early delivery. Babies born prematurely, before 37 weeks gestation, are at a higher risk for health complications in infancy, some of which can have long-term effects. Full-term infants are not all free from their own health complications, of course.

In honor of November’s Prematurity Awareness Month, led by the March of Dimes, How Do You Do It? is focusing this week’s posts on The Moms’ experiences with premature deliveries, NICU stays, health complications, special needs, and how we’ve dealt with these complex issues.


One truly overwhelming aspect of having a child or children in NICU (neonatal intensive care unit) care is the quantity of new terminology thrown around by the medical staff. The Moms put our heads together and came up with a list of NICU terms that many of us had to learn.

Adjusted age: The age that your premature child would have been if he were born full-term. You and your doctor may choose to schedule your preemie‘s vaccinations based on her adjusted age rather than her birth age. It’s often easier to answer strangers’ questions about how old your babies are with their adjusted age rather than going into the details about why they are so small for their birth age. Many preemie parents abandon the adjusted age around age 2, but it depends on how early their children were born and the extent of any delays or disabilities.

Apgar score: A number between 0 to 10 that describes the condition of a newborn (full-term or premature) immediately after birth. The Apgar test is usually given twice, 1 and 5 minutes after birth. Medical professionals score each of 5 criteria from 0 to 2:

  1. breathing
  2. heart rate
  3. skin appearance/color
  4. reflexes
  5. muscle tone

Apnea: Breathing stoppage. Apnea of prematurity is not uncommon, and usually involves a baby not breathing for 15-20 seconds. A gentle touch, often a massaging of the chest, is usually enough to end an apneic episode. Since full-term infants the same gestational age as a preemie don’t need to breathe in utero, premature infants can sometimes “forget” to breathe. It’s scary, but not unusual. The vast majority of preemies outgrow apnea of prematurity by their due date.

NICU terminology from hdydi.com

Aspiration: Sucking of fluid or solids into air passages.

Bililight: Fluorescent light used in phototherapy to treat jaundice.

Brady/bradycardia: Pathologically slow heart rate.

Cares: The three-hourly basic routine of feeding, diaper change, temperature measurement, weighing, and blood sugar analysis. Many NICUs will allow parents to perform all aspects of their babies’ cares once they are stable.

Car seat test: Monitoring your baby’s vital signs for a 60 to 120 minute period in the car seat in hospital to confirm that he or she can manage the drive home.

Catheter: Tube used to deliver medications or fluids or to drain bodily fluids.

Co-bedding: Placing multiples together in a bed, crib, isolette or open warmer.

Corrected age: See “adjusted age.”

Desat/desaturation: Decrease in the oxygen saturation level of the blood, specifically hemoglobin.

Developmental delay: Ongoing delays in reaching milestones.

ECG/EKG/electrocardiogram: Test that checks for problems with the electrical activity in the heart.

Extubate: Removing a breathing tube from the airway.

Failure to thrive/FTT: Inadequate weight gain and physical growth in children. Being small for his/her age does not equate to failure to thrive as long as a child is growing. If a child’s growth follows the growth chart (e.g. stays at 2nd percentile over time), being underweight does not equate to FTT.

Feeder-grower: A baby that is only in the NICU to learn to feed and get her weight up and has no other medical concerns.

Fontanel: One of six soft spots at the juncture of an infant’s skull bones. The skull does not fuse into a single bone until a baby is around age 2.

Gavage: Feeding directly into the stomach by tube.

Gestational age: The age of a baby calculated from a woman’s last normal menstrual period. For full-term infants, gestational age is usually used to describe age in the womb. For preemies, we often use gestational age as a measurement of how close they are to being developmentally equivalent to a 40-week full-term neonate.

Growth chart: Graph that illustrates the distribution of weight and height/length by age in a population of children. The distribution is usually described in terms of percentiles.

Heart murmur: Unusual sound heard during a heartbeat. Many heart murmurs are completely innocent.

Heelstick: Pricking an infant’s heel to retrieve a blood sample for blood sugar monitoring or other diagnostic procedures.

High-calorie formula: Infant nutrition with concentrated caloric content, intended for infants who need to consume extra calories or smaller volumes than other infants.

Hospice care: Palliative care provided when death is imminent.

Incubator: Closed crib that provides a controlled environment (temperature, oxygen and/or light) for infant care and observation.

Intubate: Insert a tube into the (windpipe) to maintain an open airway to enable breathing.

Isolette: An incubator brand, often used to mean generic incubator.

IUGR/intrauterine growth retardation: Poor or slow growth of a baby in his/her mother’s womb during pregnancy.

Jaundice: Yellow skin and eyes caused by extra bilirubin in the blood. Bilirubin is a blood component left after normal breakdown of red blood cells, which are constantly replaced. Common in newborns.

Kangaroo care: Holding an infant skin-to-skin against an adult. The parent or medical provider’s body heat helps regulate the infant’s body temperature, needed since many preemies have inadequate body fat to regulate their own temperature.

Meconium: The product of a neonate‘s first bowel movements, a tarry green substance made up of things the infant has ingested inside the mother’s womb.

Micropreemie: A baby delivered especially early. NICU staff usually reserve the term for babies who weigh less that 1.75 lbs and birth or is born before 26 weeks gestation (14 weeks premature). Colloquially, people use the term to describe babies born at less than 3 lbs or before 29 weeks gestation.

Milestone: Set of functional skills or tasks, including language, cognitive, and motor skills/tasks that most children can do at a certain age.

MRI/magnetic resonance imaging: Procedure to create pictures of organs and structures inside the body.

Nasal cannula: Tube used to deliver oxygen through the nostrils.

Necrotizing enterocolitis/NEC: Infection that destroys all or part of the bowel. It affects 10% of neonates weighing less than 3.3 lbs within the first two weeks after birth.

Neonate: An infant within the first month after birth.

Neonatologist: Pediatrician specializing in treating newborns, especially following complex or high-risk births or early medical challenges.

Newborn: See neonate.

NG/nasogastric tube: Tube that carries food and medicine to the stomach through the nose as in gavage feeding.

NICU/neonatal intensive care unit: Hospital wing containing special equipment and staffed with medical experts to provide care for premature or seriously ill neonates.

Open warmer: An open crib with an overhead heater that adjusts automatically to maintain an infant’s body temperature.

Oscillating vent: A ventilator specifically designed for delicate preemie lungs to minimize  damage by keeping the lungs somewhat inflated.

Palliative care: Medical care focused on relieving of the pain and stress of the symptoms of serious illness rather than just the source of the illness.

PDA/patent ductus arterioles: Abnormal blood flow after birth between two of the major arteries connected to the heart. This blood flow is normal and necessary in utero, but usually stops shortly after birth.

Percentile: The percent of a population that an individual equals or exceeds. A child in the 50th percentile for weight is weighs as much or more than 50% of children the same age.

Phototherapy: Controlled exposure to fluorescent light absorbed by a baby’s skin to break down bilirubin and treat jaundice.

PICU/pediatric intensive care unit: Hospital wing containing special equipment and staffed with medical experts to provide care for children who are hospitalized a significant time after birth.

Preemie: A child born prematurely.

Prematurity: A child born before 37 weeks gestation.

Primary nurse: The nurse responsible for providing continuity in the care of a patient. The NICU parent’s best friend.

Prognosis: Expectations for the future.

Pulse ox/pulse oximeter/oximeter: Machine that measures the oxygen saturation of a person’s blood without requiring a blood sample.

Radiant warmer: See open warmer.

Reflux/Gastroesophageal Reflux/GER: A condition in which stomach contents flow back up into the esophagus. The liquid spit up is mostly made of saliva and stomach acids. Reflux is not uncommon in kids under 2 years old.

Respirator: Non-medical term for ventilator.

Respiratory therapist/RT: Medical professional who help patients who have trouble breathing.

Retinopathy of prematurity/ROP: Eye disease common to NICU babies, especially those who require extra oxygen, in which the blood vessels of the eye grow in a disorganized way. Mild cases usually resolve themselves, but severe cases can result in permanent blindness.

RSV/Respiratory syncytial virus: Highly contagious virus that causes cold-like symptoms in adults but can be extremely serious, even lethal, in premature and other lung-compromised young children.

Seizure: A change in the electrical activity in the brain. Symptoms can be severe or nonexistent.

Sats/oxygen saturation/SpO2: The percentage of potential oxygen-carrying molecules (hemoglobin) in the blood that are carrying oxygen. Normal saturation is 95-100%. This is a good measure of whether an infant is getting enough oxygen.

Suck swallow breathe: Coordination of actions required for a neonate to take nourishment from the breast or bottle. This reflex usually kicks in by 36 weeks gestational age.

Swaddle: Wrapping a baby tightly to give him the comforting feeling of being in the womb.

TTTS/TTS/twin-to-twin transfusion syndrome: A condition that occurs only in (some) identical multiples in the womb who share a placenta. An uneven distribution of blood vessels in the placenta can, in extreme cases, result in IUGR of one twin.

Ventilator: Machine that moves air in and out of the lungs to help infants who are having trouble breathing.

Vitals/vital signs: Measurements that indicate physical/medical wellbeing. These can include temperature, pulse, blood pressure, pulse ox, and breathing rate.

We hope that you never have to encounter NICU terminology and can be content with “swaddle,” “fontanel” and “milestone,” but if you do, please come by to tell us your story or seek our support. We’ve been there. Our littles ones are now doing well. You are not alone.

NICU terms from hdydi.comWhat other terms have you encountered?

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Twinfant Tuesday: Bathing

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D has always loved his bath. The very first time he laughed was in the bath, as I trickled water on his chest.

D, one month old
D, three weeks old

A, on the other hand, had a rough beginning. A was initially bathed in the pink hospital storage bins. He hated every minute of it, screaming from the moment he was placed on the scale (precursor to bathing in the NICU) until he was hooked back up to all his various devices, dressed, and tightly swaddled. When he had open abdominal surgery at 29 days old, plus was given his gastrostomy tube, we were told not to bathe him for 6 weeks. Thus, he only had sponge baths, which he tolerated but did not enjoy. Before the 6 weeks had elapsed, A was given a PICC line in his arm, and we were told to not bathe him until he no longer had it. (An older child or adult could, I’m sure, bathe with a central line IV, but trying to keep an entire arm out of the bath and a wet, squirmy baby in the bath, is beyond most people, myself definitely included.) Then he had another abdominal surgery which necessitated a new ostomy for his G-tube, and another 6 weeks of no baths.

And so it was that A, at 5 months old, was given his first bath in an infant tub. I happen to love (love, love, LOVE) our infant tub. We used the “Whale of a PlayTub”. It worked perfectly from negative-three weeks old (D’s discharge from NICU) until almost a year old (longer for A, who is small and has low muscle tone). I was dismayed to see that his early fear/hatred of baths was still present. I mentioned it to his PT/OT from Early Intervention, who used to work as a NICU developmental therapist and is a genius when it comes to sensory issues. She and I gave A his first “swaddle bath” right in my living room.

Giving a swaddle bath is easy. The idea behind it is to help the baby feel safe and warm. A, like many NICU babies (and probably babies, period) felt insecure in the bath and needed to learn to love it. First, fill the tub with a few inches of warm water. Make sure to have a cup or ladle near by, along with towels, soap (if you’re using it), etc. Next, tightly swaddle the naked baby in a fleece blanket. (It has to be fleece; other fabrics quickly become cold when wet.) Then place the swaddled baby in the tub. I was amazed when we reached this step, as A did not scream in the slightest. Pour water over the baby, getting the whole blanket wet. The fleece will retain the warmth.

That can be it. Or, if your baby seems ready, unswaddle one limb at a time, wash it, then re-swaddle it. Always wash the head last, as it is exposed to the air and can get cold, plus the face can be very sensitive.

A's therapist teaching me how to give him a swaddle bath
A’s therapist teaching me how to give him a swaddle bath

As time goes on, loosen the swaddle. Don’t re-swaddle the legs after washing. The idea is to gradual phase out the swaddle, depending on the baby’s needs. For A, he quickly progressed to only needing swaddling when transitioning in and out of the tub, then just in, then just loosely wrapped in a blanket which remained on the bottom of the tub after he was in, and then nothing. Now A, like D, is a water baby, loving baths, swimming, etc.

Because of my husband’s work schedule, I almost always did bath time alone during their first year. My twins couldn’t share a bath for quite some time (15 months is when we began), due to A’s difficulties with sitting upright and D’s propensity to yank on A’s G-tube. So I would put one in a bouncy seat (and later exersaucer) right outside the bathroom door, bathe the other, dress him, and then swap places. It worked very well. Bath time was one of my favorite times with the boys when they were infants, in part I think because it was largely one-on-one, and in part because they both loved their baths so much.

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Grocery Shopping with Twins and More

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You Can Do This!

Twins in a shopping cart: Grocery Shopping with Multiples from hdydi.com
Yetunde‘s pair are ready to roll!

You can run errands with twins or more, including multiple infants or toddlers. You can do this. Yes, alone. If you must do so alone, or just want to, you should give it a try. We’re going to tell you how The Moms go grocery shopping with kids in tow, from twins to quadruplets, with some singletons thrown in for good measure.

This post assumes that you have access to a car, are walking, or are riding a bike. Taking public transportation with multiples is a topic for another day.

Leaving the House

Plan and Pack

As with most things related to caring for babies, grocery shopping with twins or more starts with good planning. Pick a time that works for you and your kids. Do your babies fall asleep in the car and nap well out and about? Consider going shopping during nap time so that they can sleep through the whole thing. Are they happy and social in the morning? Go shopping then. Make a complete shopping list so that you can minimize followup trips required to pick up things that you forgot during your main shopping haul.

diaper bag and contents from hdydi.com
Photo Credit: dhgatsby

Pack your diaper bag with the things you’ll need. The basics usually include things for diaper changes, something to wipe up spills and messes, changes of clothes in case of mess, something for the babies to eat, and something for them to play with. You’ll also need to have a transportation solution at the ready, whether it’s a stroller-carseat system, baby wrap, wagon, or all of the above.

Twinfant Tuesdays: Errands with Lots of Little Ones from hdydi.com
If your child is old enough to sit in a cart but not big enough to stay propped up, a rolled up blanket can help, as demonstrated by Sadia‘s daughter J at Ikea. M is wearing, or rather worn in, an Evenflo Snuggli. Please see our baby carrier post for our thoughts on wearing twins.

Older kids don’t need all the diaper paraphernalia, but they might need something to keep their hands and minds occupied, like books or toys. A small container of fruit or cereal is a good thing to have on hand for when blood sugar dips and tempers rise. Depending on the ages of your children, you may have traded in your diaper wipes for antibacterial hand gel… although you may find yourself wishing you had wipes, even with school-age kids!

Before you head out the door, make sure that your kids are clean and fed. If they’re just fussy, and you have a constitution that allows you to drive with a fussy child in the car, just move on to loading up. Sometimes you’ll need to drive through the crying to get to your goal.

Don’t forget your shopping bags, cooler or insulated bag, and transportation solution.

If you do make a habit of shopping with your multiples, you’ll need to be prepared to be a minor celebrity. Especially during the first couple of years, when it is obvious that your children are the same age, people will want to stop and talk to you about multiples. Budget extra time for discussion with curious strangers. Arm yourself with standard answers for common questions.

Load Up

3 infants buckled up at home: Grocery Shopping with Multiples from hdydi.com
3 infants in a car: Grocery Shopping with Multiples from hdydi.com Sadia’s daughters and a friend’s son went shopping together regularly. M wasn’t too happy about it.

Put your kids in the car last. That way you’re not distracted by their demands while you pack up. Make sure that they’re somewhere safe, like a crib, swing or playpen, while you pack your car with your stroller (or wagon or baby wraps) and diaper bag and other equipment. Janna kept bouncy chairs in the front room and strapped her boys in on the way in and out of the house.

If you’re using bucket-style infant car seats, it may be easiest to load and strap your babies in in the comfort of your home, then install the seats in your car, complete with babies.

If you’re walking or bicycling, the same general approach holds true. Load the kids last.

Out and About

You’ve loaded up and arrived at your grocery shopping destination with your twins. Now what?

Parking

If you’ve driven to the store, check to see whether they have designated Customer with Child parking spots. If you can score one, it will likely be near the cart return closest to the main entrance to the store. You can maximize your chances of reasonable parking by shopping at off-peak hours such as weekday mornings, but this isn’t feasible for everyone.

Walking and Biking

Janna and RebeccaD walk almost everywhere. RebeccaD purchases only what she can fit in the undercarriage of the stroller. She hits the store with her boys every couple of days. She uses her double stroller for most errands. Janna walks to the pharmacy, grocery store, post office, thrift store. The workout is a bonus!

Once her boys turned a year old, Janna switched to a trailer behind her bike. This isn’t always possible, of course, if your errand is too far away or the weather is too hot or cold, but it works great for her family most of the time.

Implement Your In-Store Strategy

The Moms have a plethora of ideas for containing and transporting kids at the grocery store. Yetunde has actually written about this in the past on her personal blog. If you’re planning to use a store cart, parking near the cart return can make it easier to snap up a cart without having to stray far from your car.

  • A common solution for infants is a double car seat/stroller system, such as the Double Snap-N-Go or Graco DuoGlider. MandyE was once able to run three quick errands within an hour thanks to the ease of baby transfer! Where do the groceries go, we hear you clamor. One option is to use the basket under your stroller as your cart. This severely limits how much you can purchase at a time. Another option is to push your stroller with one hand while pulling a store cart behind you with the other. It looks a little crazy, but it works well.
  • 3-seater cart: Grocery Shopping with Multiples from hdydi.com
    Target has carts that seat 3 kids with ease, demoed here by MandyE’s precious duo.

    More and more stores are offering shopping carts that seat two or more children. In our experience, such stores include Costco, Sam’s Club, Target and many branches of the Texas grocery store HEB. Sadia found it to be worth driving a few extra miles to go to a store that had two-seater carts standard.

    Twin boys crying in a two-seater shopping cart: Grocery Shopping with Multiples from hdydi.blog
    Jen Wood‘s boys don’t seem to appreciate two-seater shopping carts as much as The Moms do.

    Don’t have any stores nearby with carts that accommodate two seated kids? Let your store manager know; the company may simply be unaware of the demand.

    This brings us to another point: “Shop” around and choose stores that work for you. Find places where you can maximize your effort and where you can shop effectively. One-stop shopping is your friend. SarahP typically goes to Costco first, then to Walmart because she can price match there and get all the other odds and ends. Use the grocery store pharmacy. Look for wide aisles. You may find it worthwhile to invest in a cover to keep little fingers off germy cart parts and/or disinfecting wipes to wipe down the cart before transferring your kids.

  • MandyE (in the photo) and Sadia both used the wear one/drive one approach to shopping with twins.
    MandyE used the wear one/drive one approach to shopping with twins. Note that most car seat manufacturers recommend placing car seats inside the car rather than in the seat area. Check your manual!

    You can wear one baby and put the other(s) in the shopping cart. Wiley typically wore her twinfant girls, had her toddler son seated in the cart, and had her school-age son walk. The trick to reaching things on low shelves without spilling a baby is to squat. You’ll have thighs of steel, so that’s a benefit of this approach. Note that many car seat manufacturers advise against placing car seats in cart seats the way MandyE demonstrates and many of The Moms do regularly. Try using the cart strap to secure the seat the way you would with the seatbelt in your car.

  • Twins hiding in the paper towels: Grocery Shopping with Multiples: hdydi.com
    Jen Wood’s guys remind us that our kids are also pretty creative, so be careful when letting them walk in the store.

    Get creative. SaraBeth has seen parents bungee two carts together. Sadia has shopped with her kids in a Radioflyer wagon. SarahP keeps one baby in the car seat in the main area of the cart, puts her 2-year-old in the sitting area of the cart and straps the other baby to herself in a Baby Bjorn. The groceries go under the cart and around the seat. It may look like a circus, but it works! Carolyn – Twintrospectives used her stroller as her cart. When she had too much bagged stuff after paying to fit elegantly back under the stroller, she used a couple of mommy hooks to hang bags off other parts of the stroller. Janna used to hang reusable grocery bags from the double stroller handles.

  • 7-year-olds helping mom push a shopping cart: Grocery Shopping with Multiples from hdydi.com
    Sadia’s daughters can help her steer the cart, although they’re just at the height where they can’t see where they’re going. They now prefer to walk alongside the cart and help calculate the best values and keep mommy within budget.

    Kids don’t have to be contained. If your kids are old enough to walk and trustworthy enough to be free, invite them to help you push the cart or give them carts of their own. Sadia’s kids still, at age 7, walk between her and the shopping cart, embraced within her arms and “helping” her push. If they wish to walk alongside the cart, they are each assigned a spot on the side of the cart to keep a hand on. They are not permitted to let go without explicit permission. SaraBeth determines which twin goes “free range” based on who has been better at listening that day.

  • Twin boys push miniature shopping carts in the store: Grocery Shopping with Multiples from hdydi.com
    Jen Wood’s sons are on a mission. Having his own cart keeps each boy close to mom and focused on shopping.

    Avoid the store altogether. Shop online. Subscribe to a CSA that delivers to your home. Use a drive-through.

There will be days when your kids will be in rare form, screaming bloody murder, and you’ll wonder how essential food really is. We’ve been there. On balance, though, shopping is doable, often even fun. If you treat it like a fun outing, your kids will have fun too. MandyE and Sadia will talk about making grocery shopping fun and educational in a later post.

Ask for and Accept Help

Twins in a double shopping cart seat: Grocery Shopping with Twins from hdydi.com
The Moms love these double seat shopping carts, modeled here by Carolyn – Twintrospectives’ boys. If your store doesn’t have them, see if a manager can order a few. Once they see how popular they are, they’ll get the message!

Don’t be afraid to ask for help. Janna often asked strangers to hold doors for her. Sadia asks store staff to help her lift things down from tall shelves. Carryout services offered by some grocery stores is golden. If you let the staff member load groceries into your car, it frees you up to load up your kids.

Unique Circumstances

Special Needs Children

Marissa‘s son A was very sick as a newborn and was essentially quarantined until he was 6 months old, by order of his doctor. This meant keeping D in too until he had his 3rd DTaP. Marissa’s husband, mother, and grandmother ran almost all of the errands, since A required extensive care when not hospitalized. We know, we said you could do it, but sometimes it’s best that you don’t run errands with your kids, for their sakes.

Grocery cart with infant seat attached: Grocery Shopping with Twins from hdydi.com
Some grocery stores provide shopping carts with infant seat already (and securely!) installed. If you wear one baby, these are great for parents of twins.

Now A is doing much better, but he couldn’t sit in a shopping cart until he was about 14 months old. Marissa wore him most of the time and had D sit in the cart. In addition, A is tube-fed and she does not let that stop them from participating in any activity, even though people are far more likely to stare than when witnessing public breastfeeding. One of Wiley’s daughters needs to drink thickened liquids to prevent aspiration, so they keep individual servings of thickener in their diaper bags now. Due to the aspiration issue, she had to drink pumped milk, so Wiley and her family had to travel with a cooler even though her twin sister could just breastfeed on demand.

Sadia’s daughter’s frontonasal dysplasia does sometimes force her family to contend with awkward comments and questions, but she has a stockpile of canned responses at the ready. She also talked to both her daughters about others’ perceptions and comments, since keeping them out of earshot is not a realistic option.

Higher Order Multiples

Mrslubby‘s husband loves to take her quadruplets and their 4-year-old big sister shopping, if nothing else to prove he can! He loads up two babies in one cart and two babies in another. With their older singleton standing on the end of a cart, he pushes one cart and pulls the other. While Mrslubby cringes at all the looks she gets from strangers with her brood, her husband basks in the acknowledgment of his juggling skills.

Pregnant MoMs

At the moment, Marissa is too pregnant with her third baby to wear her son A facing out in a front-carry. Unfortunately, he doesn’t like back-carry much, so she usually only take one kiddo on errands. Once again, her husband does most of the errands, because that’s what works for her family. As we said earlier, asking for help is an important MoM skill, as is accepting help when it’s offered.

Single (or Functionally Single) Parents

Janna and Sadia were both functionally single parents when their twins were very young, thanks to Janna’s husband’s extended work hours and Sadia’s (now ex-)husband’s repeated deployments. They had no alternative but to run errands with their kids, so it never occurred to them that it should be difficult. On the other hand, RachelG and her husband share equally in family tasks such as grocery shopping, so there is no need for either of them to master solo groceries. Do what works for your family’s needs.

If you’re a working single mother like Sadia, chances are that you have very little flexibility in your schedule and no one to watch your kids without prior planning. Work a weekly shopping trip into your routine so that your little ones know to expect it. Consider having a backup supply of canned and frozen goods to carry you through if you hit a week during which you just can’t make it to the store. Moms do occasionally get sick. Cars break down. Roads flood. Don’t be caught without food and toilet paper.

Unloading at Home

Unloading your groceries with young kids around can also take some planning. Your multiples and other kids may be especially demanding on returning to the safe environment of home. As on the way out of the door, make sure that you have a safe place to keep them while you bring your shopping inside.

Grocery Shopping with Twins and More from hdydi.com
Photo Credit: malloreigh

Consider using a cooler or insulated grocery bag for frozen or refrigerated items. This allows you a bigger window to tend to your kids before you return your attention to the groceries waiting to be put away. If your store has an especially competent bagger, do what you can to get in their checkout line and avoid careless baggers. Alternately, you can oversee the bagging yourself or simply communicate to the checkout staff that you need your things bagged in a particular order. It helps them out if you load groceries in logical groupings while you’re checking out.

Sadia keeps a tote in the trunk of her car to help keep things sorted. Refrigerator items go in the tote, everything else straight into the trunk. When she gets home, she can pick up everything that needs to be put away quickly at once. The rest can wait.

Not Just for Moms

The post has been written about moms going shopping with kids because we’re moms who go shopping with kids. This advice is for everyone else too, though: for the DoMs who do just as much in the way of home and family maintenance as MoMs, for nannies and au pairs who are out and about with the kids, for grandmas and grandpas, whether the grandkids are visiting or are in your permanent care.

Katelyn‘s husband carries one kid on his shoulders. Marissa’s husband wears a Moby like nobody’s business. Just yesterday, Sadia had a lovely conversation with a dad of 9-month-old twins while he wore one baby and had the other lying in the built-in infant seat in the store cart. When she got fussy, dad just scooped her onto his hip. He still had a free hand for the cart. Wiley’s nanny tends to wear one girl, put one in the cart seat, and put her middle boy in the body of the cart while the oldest is at school.

We all find ways to get things done, even if it takes some creativity.

Do you have specific types of errands, family situations, or location-related limitations on which you’d like The Moms’ advice? What grocery store trip tips did we miss?

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They’re Still Twins

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Categories Balance, Community, Difference, Friendships with Other Multiples, Parenting, Relationships, Special NeedsTags , , , 6 Comments

During pregnancy, my husband and I had many conversations about all the things we would do for our twins to let them know they were loved and valued as separate individuals, not just half of a set. That they cohabited in utero was only a very small part of who they would become, and we wanted them to always know that.

I dealt with all the comments during pregnancy—the “better you than me”, the “double trouble”, the “my cousin’s neighbor has twins”, the “I always wanted twins” (or, bizarrely to me once: “I almost had twins”…a story which did not result in the loss of a twin, but rather a woman who, prior to ultrasound technology, knew all along she was having twins, but never heard two distinct heartbeats and only delivered one baby). I joined twin groups, mentally prepared myself for the barrage of twin-comments we’d receive everywhere we went.

I never imagined how much it would sting to lose that.

I am luckier than many in the twin world: both my twins are alive and thriving.

But.

They do not reach developmental milestones within days of each other. Not even within months. They do not wear the same size of clothing, and haven’t since D outgrew the preemie size (while A was still a 3-pounder, outfits hanging on him like Doby’s pillowcase). They will probably not be in the same class at school (except perhaps preschool). Strangers do not ask me if they’re identical or fraternal, or even “Are they twins?” They ask me, “How far apart are they?”

The first time I got that question, the boys were 9 months. Now, D quickly outgrew the “adjusted” charts and was over 50% in height quite early, and has been slower but always on-the-charts in weight. Even so, he looked at most 11 months old. With A, who yes, (yes, believe it or not, I know), is small. But at 9 months, he looked perhaps 4 months, but probably closer to 5. Just what gestational length did these questioners have in mind, anyway??

But now, at 16 months, D could easily pass for 2. And A could be a tall-but-skinny (95th and below-zero) 9-month-old. Which is probably about where he is developmentally as well. The question is no longer absurd.

And it hurts. Selfishly, it hurts, as it is not what I imagined. It is not what “twins” entails in popular culture, mythology, anyone’s mind. But it also hurts for them. They are and always will be brothers, but I feel like they each are missing that twin-thing: the sharing of clothes, sharing of friends, sharing school books, mastering new skills together.

I rarely comment in my twin group. I feel like so much of it just does not apply.

A lot of it does, though. A lot of it applies, and then some. Feeding twins is so hard! Feeding twins when one of them has a feeding tube? Even harder. Getting any sleep with twins is hard! Getting any sleep with twins when one of them has several alarms hooked up to him, which give both real and (thankfully) not-real alerts? Harder. Dealing with extended family who plays favorites? Whoooo, boy, let me tell you. Finding time to {x}? You get the picture.

A and D will never know a different life. As brilliant as they are, I highly doubt either of them pondered the concepts of twinhood while womb-mates, probably not even recognizing that other kicky-squirmy creature with a heartbeat from my own intestines. They are twins, and this is what twinhood will mean to them, even when they understand that it may not hold true for the greater world. In some ways, they are wiser than I am.

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