How to talk to kids about the Orlando shooting: 5 musts

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Categories Anger, Community, Fear, Grief, How Do The Moms Do It, Mental Health, Older Children, Parenting, Talking to Kids1 Comment

I felt like I was falling. My immediate reaction to learning of Sunday morning’s Orlando tragedy was visceral. I felt my stomach and heart drop before my brain could catch up to put words to my feelings. Grief. Anger. Fear. Above all, confusion. How could someone be so evil? Why would anyone bring a gun to a place of joy?

I quickly confirmed that everyone I knew who had even the most remote possibility of being at the scene of the massacre was safe. They were. My entire focus then turned to my daughters. How was I going to talk to my kids about the Orlando shooting?

Like so many parents, I’ve wrestled over whether to talk to my children about the horrific murders committed by a single deranged man. My daughters are 10. They interact with other children during the day. If they were going to learn about the shooting, I wanted them to learn about it from me, in a way that was honest, age appropriate, and non-sensationalist. I thought long and hard about how I would talk to my kids about the Orlando shooting specifically and mass shooting in general.

The way our morning went Monday, I only got around to talking to one kid. When I picked the kids up from camp, she was the one to encourage me to talk to her sister about the Orlando tragedy.

“Something really bad happened yesterday,” I started.

“49 dead? 53 injured?” she interrupted.

It turns out that she had read about the tragedy in Orlando on the news ticker. There was sports programming playing on TVs at the day’s field trip destination.

I wished I had spoken to her before she’d read those details, but she didn’t seem too traumatized. I got the impression that my willingness to discuss the matter did a lot to counter the children’s fear of this act of terrorism. Their confusion mirrored mine.

My willingness to discuss #Orlando with my kids did a lot to calm their fear. Click To Tweet

My daughters are as goofy and energetic as 10-year-olds come, but they are unusually mature. They, like me, feel empowered by information. You know your children better than anyone. If they are at a stage where they still think that everything that happens is because of or about them, they may be too immature to handle the news. Protect them from the television, radio, newspapers, and unthinking adults. You need to decide for your family, for each individual child, how to talk to them about the Orlando tragedy.

I knew that my daughters needed to talk this horrific event through. I explained that a very wrong man went to a place that is specifically intended to be a safe place for gay people to meet and hang out.

“That’s a great idea,” my daughter interjected. “It’s nice that there’s a place where gay people can know that all the not gay people will be nice to them.”

Obviously, my kids were already familiar with the concept of homosexuality. I told them that boys could marry boys and girls girls when they were toddlers. They’ve since noticed a number of lesbian and gay couples among my friends and met kids with two moms.

“But,” my little girl continued, “that makes the bad man even worse. Because he picked a place that’s nice to be mean.”

She was right, I told her. There were five massive ideas at play in the Orlando shooting, as I saw it. She had already identified two: terrorism and homophobia. She brought up 9/11 and we talked about the parallels between the two events for a bit.

It was then easy to segue into the religion part of the discussion. I told my daughter that a lot of people associate terrorism with Islam. A lot of our Muslim friends and family feared hatred from people who painted all Muslims with a single terrorist brush. I confessed that a small part of my choice to keep my married name after divorce was to avoid a recognizably Muslim name.

“But mostly to match us?” she asked. Yes, I mostly kept my married name to match my kids.

“But Mom,” my daughter realized out loud, “Christian people do bad things sometimes, but I’m not a bad person and I’m Christian.”

She was spot on. “What does it mean to be Christian?” I prompted. “If someone hurts a bunch of people, is that following Jesus’ example?”

“No,” she realized, “and he wasn’t very good at being Muslim either.”

Whenever I can, I let my children draw their own conclusions. I learn far more from them than they do from me.

“That’s three things, mom. You said there were five.”

The other two things were mental health and gun ownership. We have depression in the family, so we’ve talked in the past about chemical imbalances in the brain. I told my daughter that there was probably something very very wrong with the shooter’s brain for hmm to even imagine what he had done, much less follow through.

Next, we briefly touched on gun rights. Her father is a soldier, so she’s familiar with responsible gun ownership. I told her that my personal belief is that guns should be treated like cars, with training, licensing, and insurance required.

It was a great conversation, although one I wish we didn’t have occasion for.

“I understand the five things,” my thoughtful child told me, “but I still didn’t understand.”

I told her the truth. I didn’t understand either. No one would ever understand. There was nothing sensible, logical, or comprehensible about what this man had done. The families who are smaller today will never understand why their loved ones will never come home. The big question – WHY? – would always be out there confusing us all.

My daughter accepted my answer. She was old enough to get that this story wasn’t going to wrap up neatly. She asked me to spend the night in her room, because she was sad. We snuggled up in shared sadness, confusion, and complete love and trust.

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Twins and another, and another

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Categories Fear, Pregnancy, Singletons, Twinfant Tuesday1 Comment

I realize a post about adding to your family when you already have multiples is probably better suited for the toddler section, and not ‘Twinfant Tuesday.’ I happen to agree that, if you’re smarter than I, you would probably not even dream of adding another baby to the mix anytime after surviving the first year with twin babies. Enough’s enough, amIright?

Ah, but what good comes with predictability? As twin moms, we all learned at one point or another to just give in, surrender, let the chips fall where they may and just try our best. So, when I stood in my bathroom looking at a positive pregnancy test over lunchtime, having left my husband downstairs feeding our twin 7-month-old identical girls and older 3-year-old, I was somewhat…gobsmacked. I felt a little like an irresponsible teenager: how did this HAPPEN? I was still pumping breastmilk five, six times a day! For two babies! Who just started sleeping through the night?

The numbers continued to perplex me: Three under three, four carseats, four little bodies growing and eating from my body at once (two nurselings, a fetus and my own). I was 26 years old, scared, overwhelmed and experiencing a new level of humble pie, faced with the prospect of another baby already.

That baby is two and a half now, and from the other side of that craziness (it was, no doubt about it, a chaotic time), I have some thoughts for moms of twins who are expecting another or thinking about it.

  1. Savour it. Chances are, your twin pregnancy was coloured in themes of panic, concern, fear, amazement and a sooner-than-expected delivery. This time, if it’s just one bean in there, slow down and take it all in.
  2. The guilt is real. Twins require so much of us from the very beginning. More than we felt they ever got, and not nearly as much as they deserve. Bringing another baby into the picture can spur guilt from the onset (it did for me!). Que cera cera. Your babies will know love from you, whether there are two of them, six of them, spaced apart or all born close together.
  3. You have veteran status. You have successfully brought two babies from birth to wherever they are now, and that was no easy feat. This is just one! You can do this! What’s one baby waking up hungry? Pssht, child’s play.

I promise, you’ve got this, mama. Now, if you’re the planner type, my advice is: Don’t rush to have a baby 16 months after twins! I mean, it’s doable, but oh, I still feel that time period aged me five years.woods2

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Kid-Free Isn’t Worry-Free

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Categories Divorce, Fear, Making Time for Me, Parenting, Single Parenting2 Comments

As a single mom who shares physical custody with my girls’ father, there is one comment that I hear quite often that makes me cringe: “Well at least you get some time for yourself!”. This comment comes after someone hears some of the basics of my story and finds out that dad is back in the picture and has visitation on a regular basis. My general sense is that people feel sorry for my situation, and feel relieved to know that my life is not quite as bad/crazy as they initially imagined. And while I sincerely believe that these people mean well (I have gotten this comment from several people that I consider close friends and even family), the reality is that I do not feel that way about my time away from my children at all.

Let me start by saying again that I know that the people who make this comment mean well. My hope is that by sharing my story, I can help some people to better understand what it is like to be in a joint custody situation when the relationship between co-parents is far from friendly.

There are two main factors that make my children’s time with their dad different from, for example, a regular babysitter who watches the kids while the adult runs errands or has some “me time”: 1) I don’t trust or like the person they are with, and 2) I didn’t choose to get someone to watch my children- I was required to do so by court order. There are a lot of people, myself included, who end up sharing physical custody of their children with someone they do not trust for legitimate reasons. While I doubt there are many who would say they like their ex-spouse, many who share custody would still say they trust their ex as a parent. In my case, I know that the time my children spend with their dad is emotionally damaging, but I don’t have the kind of proof that a court would need to keep them from spending time with him. And so I send them, week after week, to a person that I do not believe is keeping them safe and healthy. Not to do so would mean risking the time that I do have with them, so I do my best to give them the emotional and psychological  tools they need to become healthy, strong young women, in spite of it all, while they are with me.

Because of these factors, I don’t consider the time my children spend with their dad to be “me time”- that time is not rejuvenating. While I have learned to accept the situation and feel confident that I am giving my girls the best situation I possibly can, I still feel better when I am with the girls than when they are with their dad. When they are with him, I try to spend as much time as I can working, running errands, or helping someone else so that I can keep my mind off of everything and be more available to the girls when they get back. I do make time for myself, but it is when the girls are safe and sound in their beds with me, not when they are visiting their other parent.

So the next time you find yourself talking to someone who shares custody of their children, take a moment to put yourself in their situation and consider if the time they have away from their children is actually helpful or not. In some cases the answer will be yes, but sometimes that may not be the case. I hope my story will help more people understand each other better, and make us better equipped to help and support each other as parents in all walks of life.


Making Time for Me - a series on mothers finding time for themselves in the middle of the insanity of parenting and lifeFrom August 31 to September 4, 2015, How Do You Do It? is running a series on “me time” for mothers: why we need it, how we make it, what we do with it. Find the full list of posts on the theme week page.

Have you blogged about mommy time on your own blog before? Are you inspired to do so now? Link your posts at our theme week link up! We’ll do our best to share them on Facebook, Pinterest, and Twitter with the hashtag #metime.

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Twinfant Tuesday: A year in photos (minus the photos)

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Categories Birthdays, Celebrations, Fear, Joy, Love, Parenting, Twinfant TuesdayLeave a comment

Next week, my little monkeys will be ONE!  That one saying is so true.  What is it again?  The days go slowly, but the weeks and months fly by, or something like that?  The other night my husband and I were watching photos float by on a slideshow from the past year.  While it’s impossible to adequately describe the first year with twins, a few of these moments help summarize the roller coaster.

Exhaustion

Photo: both 8-week-old babies are in just a diaper, passed out on my husband, who is also asleep.  My son’s arm is draped over the face of my daughter, whose mouth is wide open.  Everyone looks exhausted.  I recall this night in particular, because it was taken at the end of the first night we decided to “try” one of us going out for a few hours during the “witching hour.”  This witching hour was so very real in our house between about 5 weeks-13 weeks or so.  This particular night they started crying about 10 minutes after my husband left the house (of course), and they seemed to ratchet each other higher and higher on the scale of hysteria for the next 45 minutes until I called him, beckoning him home.  I still have no idea what got them so upset, but it was one of those nights where I needed to put them each in their crib and walk away for a good 3-5 minutes because I truly did not know how to calm them.  Eventually they stop crying for just as mysterious of reasons as why they started.  I still feel shell shocked by those first few months with two infants.  I can almost still feel the anxiety, counting the time until I’d need to go pump or breastfeed two babies again, or feel the burn in my sleep-deprived eyes.

Joy

Photo: taken after a bath, and the babies were laying side by side, and my son reached out and was touching my daughter on the arm.  She smiled back at him.  They were about 5 months old and it was taken on our first trip (see also: only) with the kids.  (We really took on the challenge of a first vacation with infant twins: Cold weather.  Over Christmas.  Staying at high altitude.  Attempting to take turns to go skiing.)  It wasn’t likely the first time they connected like that, but I do think it was the first one we caught on camera.  It captures the hope that I have for a close relationship between them and the warmth I feel in my heart when I see the connection between them.

Fear

My heart aches and is filled with gratitude simultaneously when I see the photo of my son smiling, holding a small box of cheerios in a hospital gown, the morning after our first night (and, hopefully, only for a very long time) in the hospital a few weeks ago after he took a bad fall and sustained a head injury.  We spent the night saying prayers that all would be okay, while we realized the vicarious pain one can feel for their child, as a parent.  Seeing this photo, even just a few weeks after, makes me so grateful that he is okay.  I’m almost equally as fearful of other accidents and illnesses that no doubt lie down the road for us as a family.  I was warned about how you experience pain when your children hurt, but it is truly something you cannot understand until going through it.

Fascination

Photo: my daughter standing, holding onto the collar of our 8-year-old pitbull-boxer mix makes me giggle.  I remember coming around the corner and catching her standing there with our dog, who patiently sat and let our daughter examine her “necklace.”  Mind you, she cannot walk yet, so this means she crawled over and pulled herself up on our dog’s collar.  Her fascination with jewelry has begun early, as has her love of feeding this doggy all her vegetables.  This photo captures the delight and fascination I feel as I watch these kids discover their world and learn new skills every day.  It’s incredible to watch them stand for the first time, or make a new sound and see their faces light up with pride.

And, that has been the emotional cycle of the past 12 months: Exhaustion, Joy, Fear, Fascination, or some derivative of these feelings.  I truly wish I could stop time for a day or at least an hour to really reflect on the ways life has changed and motherhood has changed me in the last year.  But, for now, a post like this will have to do.

Katie has b/g twins that will be one next week.  She lives in Chicago and balances full-time work, being a mom and training for a sprint triathlon for which she regrets signing up.

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A Compromise

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Categories Attitude, Balance, Difference, Emotion, Fear, Feeling Overwhelmed, Finances and Saving, Guilt, Joy, Lifestyle, Mommy Issues, Parenting, Perspective, SAHM, Working15 Comments

A few days ago marked the close of another school year, the first one I taught after my twins were born. Having only worked 6 weeks the year prior before taking my maternity leave, it was a difficult adjustment. The first several weeks seemed like just an exhausted blur, and the weeks following did not get much better. The month of March (the “long March”) was the worst. I was feeling depressed, rundown, burnt out, just plain tired and uninspired.

The crawling babies began to walk, then run, then climb, and by the end of the school year their naps were hit-and-miss because they were ready to transition to only one. So I had cranky babies and a preschooler to pick up from school, then feed and bathe all three after a full day of work. And I constantly worried about my aging mom, who I counted on every single day in order for me to go to work. I started to rethink this decision made a year ago

Clearly, I knew my husband’s position. We’ve had this discussion many times before; I’ve been wanting to be a SAHM ever since our first was born. But the decision we made came mostly from his arguments, all of which are valid: We have family nearby, they’re willing to help, these are our prime working years, I should be building my career and our family’s financial wealth. But he doesn’t understand the guilt that comes from having nothing left to give to the kids crying and tugging at you for your attention at the end of each day. He doesn’t understand that I blissfully enjoyed almost an entire year at home with my firstborn (starting 10 weeks before her siblings were born so she had me completely to herself), and the sadness I feel that the twins will NEVER get to experience that, just by the fact there are two of them plus an older sister.

One morning in early May, after a night of tormented sleep, I sought out my administrators to ask if there were any options for me to relieve some of this distress. Other than resign and lose my job security and all the years of service credit I’ve built with the district, the only other option was to work part-time. I never considered this an option because… well, because it is rarely done. I’ve only known two colleagues who have ever done it, and currently there is only one other teacher working part-time in the entire district. But, surprisingly, after almost collapsing into tears while telling my principal of the difficulties of trying to be the best mom I could while also being the best teacher I could, she was completely supportive. And, it turns out, so was my assistant principal working on the master schedule (the schedule of all courses during all class periods for every teacher at the school)– he was able to give me two morning classes a day.

My husband and I then had this discussion once again, but this time I was offering an alternative. What if I could keep my job security, keep my vested years and retirement, but also spend more quality time with the kids? I had the numbers to present to him, and my mom had already signed off on the idea. We could take the financial hit temporarily; my mom would only have to watch them for less than 3 hours a day instead of 8. I could feel fulfilled, as I am keeping my career, but also not be completely worn out before I even pick up my kids. Surprising me yet again, my husband agreed.

Life changes after having kids. This is the way we’ve decided to compromise. My new contract was signed last Friday. I’m not absolutely sure yet that this is the best way to go for our family, but I am trying something that I think might work. We will see.

lunchldyd is currently on summer vacation from her job as a high school teacher. Her husband has deferred his hopes of moving into a bigger house soon because of her part-time working decision. 

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Fear of Mascot Costumes

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Categories Emotion, Fear, ParentingTags , Leave a comment

My daughter M is a pretty well-adjusted 7-year-old. She has faced and coped with her birth defect with more maturity than I think I could have mustered in her place. She has one fear, though, that we’ve struggled to overcome for years now. She has a fear of mascot costumes. Specifially, she is terrified, paralyzed almost, by people in costumes that hide their faces.

We have talked about her fear ad nauseam. M is very aware of it being irrational and is able to describe the parameters of her fear very clearly. She is afraid of mascots if the costume obscures the face and she doesn’t know who is inside. She was fine this Halloween because everyone she saw in a face-obscuring mask was with a family in which she could place their role. She was okay with the local production of The Little Shop of Horrors because we were able to meet the actors before the show and see how the costume fit. She’s okay with her school mascot because she knows which members of the school staff wear the costume.

My favourite grocery store, HEB, recently opened a new store wonderfully convenient to our house. We were out shopping for last minute Christmas dinner fixings on December 14 when I caught sight of the store mascot, H-E-Buddy® walking the aisles, giving kids high fives.

I didn’t stop to get a video myself. Instead, I positioned myself to ensure that M’s back would be to the costumed employee and quietly said to M, “Sweetie, there’s a mascot here. What do you want to do?”

I could see her try to steel herself, but her words still came out in a scream. “Get away, Mommy. Don’t let him see me.”

We ducked down the nearest aisle, M begging me to check out immediately. I reminded her that we still needed to pick up our Christmas ham and chicken. This would be our last chance to shop.

Grocery shopping took far far longer than usual, as we chose where to walk based on whether H-E-Buddy would see us. J and I took turns scouting out whether it was safe to go around the next corner. At one point, M squeezed into the space between an ATM and the adjacent wall while I stood in front of her, hiding her existence while her sister got a cheery high five.

“M,” I asked her, picking her up, “Don’t you know I won’t let anything bad happen to you?”

“You always protect me,” she said through her tears, burying her face in my shoulder.

That’s why I let our ice cream melt in our long convoluted journey through our grocery trip. I can only help my daughter overcome her fears as long as she trusts me. In the short term, it means treating our Christmas grocery quest like a game of Pac-Man.

We’ve already worked through many of M’s fears. We no longer have to drive by new performance venues days before we go to see a play or musical performance. We no longer need to cross the street to avoid small dogs; she asks owners permission to pet puppies now! She now willingly goes trick-or-treating with her sister instead of begging to stay home to avoid people in Halloween costumes. She even rode on a bicycle without stability wheels and was proud of how long she stayed on instead of screaming about falling off.

Eventually, I believe that M will meet enough of the people inside mascot costumes that she can push her fear aside. Until then, I’ll continue to seek out ways for her to meet costume-wearers in their everyday clothes and help her avoid her demons.

I’ll always protect her.

Sadia (rhymes with Nadia) has been coordinating How Do You Do It? since late 2012. She is the divorced mother of 7-year-old monozygotic twins, M and J. She lives with them and their 3 cats in the Austin, TX suburbs and works full time as a business analyst. She retired her personal blog, Double the Fun, when the girls entered elementary school and also blogs at Adoption.com and Multicultural Mothering.

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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?”

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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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Let’s Talk About SIDS, Baby

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Categories Fear, Infants, Loss, Medical, Theme WeekTags , 1 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.


SafeSleepInfographicVertical_325
Image courtesy of the Safe to Sleep® campaign, for educational purposes only; Eunice Kennedy Shriver National Institute of Child Health and Human Development, http://safetosleep.nichd.nih.gov; Safe to Sleep® is a registered trademark of the U.S. Department of Health and Human Services.

SIDS (sudden infant death syndrome) is the monster under the bed, the ax murderer hiding in the shadows, all of my nightmares made real. SIDS is the diagnosis used when an infant dies without warning. The child is alive and healthy and then she’s gone.

SIDS is something of a controversial diagnosis, since it’s a catch-all for cases where no other explanation can be found. As with many conditions, our medical understanding is constantly evolving. NPR ran a story a few years ago arguing that SIDS deaths are almost all avoidable suffocation deaths in which the diagnosis is an act of compassion to the caregivers.

Premature and low birthweight babies are at higher risk for SIDS than full-term normal weight babies. The irrational fear during my pregnancy that my children were conjoined twins was replaced by the slightly more rational fear that I would lose one or both to SIDS. It certainly didn’t help when a coworker of my mother-in-law did, in fact, lose a grandchild (a twin, even) to SIDS when my girls were a few months old.

I did my research and did what I could to reduce my daughters risk of dying from SIDS.

  • During my pregnancy, I avoided smokers. I’ve never so much as touched a cigarette, but I wouldn’t allow them anywhere near me while I was pregnant. It helps that Austin doesn’t allow indoor smoking and my employer was on its way to becoming the smoke-free campus it is now.
  • I laid the babies on their backs to sleep. Stomach and side sleeping in infants too young to roll over has been shown to increase the risk of SIDS deaths.
  • I used firm crib mattresses with tightly fitting mattress pads and sheets. My arm muscles did some major work wrestling those sheets on.
  • I didn’t co-sleep. Don’t get me wrong; I occasionally fell asleep while nursing in a side-lying position, but I returned the babies to their cribs when they were full. Keeping their crib in my room worked out really well until after they weaned. They slept in a crib together, though.
  • There were no pillows, blankets, bumpers or toys in their cribs. They kept warm in footie pajamas and sleep sacks that couldn’t bunch up around their faces and present a suffocation risk.
  • The cats were not allowed in the nursery or my bedroom until the girls outweighed them, by which time J and M were cruising and talking.

I also did my share of irrational worrying. I kept the baby monitor on high enough that I could hear both babies breathing. I could tell their breaths apart, and any time I imagined a missed breath or two, I ran to their room to check on them. During the time from first rolling over until both babies were expert rollers over, I slept on the floor next to their cribs. Any time one of them flipped onto her stomach, I rolled her back over to her back. J wasn’t  much a fan of this arrangement, but she had to put up with it until I was confident she could consistently and confidently move her head to the side to catch her breath during tummy time.

A mom of premature twins talks about sudden infant death syndromeWas I an overprotective new mother? Absolutely. And I don’t apologize for it. SIDS happens. I just won’t let it happen to my babies… or yours.

Want to know more? Check out this brochure ☮  from the Eunice Kennedy Shriver National Institute of Child Health and Human Development and its Safe to Sleep Campaign.

Sadia (rhymes with Nadia) has been coordinating How Do You Do It? since late 2012. She is the divorced mother of 7-year-old monozygotic twins, M and J. She lives with them and their 3 cats in the Austin, TX suburbs and works full time as a business analyst. She retired her personal blog, Double the Fun, when the girls entered elementary school and also blogs at Adoption.com and Multicultural Mothering.

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NICU Names: Guilt, Anger, Sorrow

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Categories Anger, Emotion, Fear, Frustration, Grief, Guilt, Mommy Issues, NICU, Parenting, Prematurity, Theme WeekTags , , , , 4 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.


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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