The Goal of Reaching the NICU Reunion

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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.


Our girls were born at 34 weeks and spent 10 days in the NICU. I knew at the time – on some level – that we were very lucky, and certainly I realize it today.  Still, those 10 days were filled with many emotions, and a whole lot of haze.

I know a lot of the details I’ve blocked, but some things stand out very clearly in my memory. One of the things I remember with great clarity is a hallway exchange I had with another family, whose twin girls were born a week or so before ours. The mom seemed so well-adjusted and optimistic. We exchanged pleasantries, and she said, “I’m already looking forward to the NICU reunion this fall!

I appreciated her outlook, and that little tidbit of information stuck in my mind. A reunion…eight months out…it was something to look forward to. Although it was very tough to appreciate at the time, I logically knew my girls would be long past their NICU days by then. I, too, began to anticipate the weekend after Labor Day.

Throughout the next few months, as I practiced what I’d learned in the NICU…how to feed my babies, how to burp them, how to bathe them…I was looking forward. I couldn’t wait to show off my babies – who by that time would be plump and smiling – to the NICU nurses. I couldn’t wait to show them and to celebrate, “We did it!

I’ve had numerous conversations with my mommy friends who didn’t spend time in the NICU. Several have recounted how they cried and cried when they brought their babies home, feeling like they didn’t know what to do.

While I did my share of crying after my girls got home, it wasn’t because I felt like I didn’t know what to do. I know I have the NICU nurses to thank for that.

Those nurses were there for us, not just punching the clock and doing their job, but wrapping their arms around us figuratively, and at times, literally, during those first critical days as the size of our family abruptly doubled.

They cheered as I changed my first two diapers…they showed me all sorts of tricks for coaxing a premature baby to take a bottle…they affirmed my every “was that a burp?” question…they stood by my side as I gave the girls a bath for the first time.

The environment may have been cold and sterile, but that’s not how I remember our time in the NICU. The nurses were always so reassuring, letting us know the babies would be fine, and so would we. For that, and for so many more things, I will be eternally grateful.

We attend the NICU reunion each year. It is an awesome opportunity to reconnect with the doctors and nurses who were our family those first couple of weeks. They are truly amazing people, and they will always hold such a special place in our hearts.

The first reunion, it was Mommy who was so looking forward to the visit. The next year, when the girls were about 20 months old, I’d worked with them for days to say, “Hi, Miss Michelle,” in greeting our very favorite nurse. It brought tears to her eyes, and mine.

Since then, the girls look forward to the reunion, too. “When are we going to MY hospital, Mommy?” They like to ride the elevator, they like to eat a piece of cake, and they like to see their pictures hanging on the wall outside the nursery, one of a handful of cases who were highlighted as part of a March of Dimes “graduates” wall.

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Headed to our first NICU reunion. We take a picture now every year beforehand…one proud Mommy and her two healthy babies.

If I could rewrite history, would I want to spend those days in the NICU? No. But do I love to take the girls for a visit once a year…to reflect on how far we’ve all come…to try to convey our eternal gratitude in some small way? Absolutely.

Have you revisited the NICU since your babies graduated?

MandyE is mom to fraternal twin girls, now almost five.  She blogs about their adventures, and her journey through motherhood, at Twin Trials and Triumphs.

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SMSs From the NICU

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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.


Our twins Rahul and Leila were born at 31 weeks gestation, in Hong Kong, where I temporarily moved from Chengdu for their birth and initial care. Only my husband Maher, and I were allowed to visit the babies in the NICU.

2 weeks after they were born Maher returned to work in Chengdu. He would fly into HK every Friday evening though, for the weekend.

These are some of the messages I sent to him, Houda (my mother-in-law), and my parents from the hospital over the next month. I was only allowed to send messages from outside the NICU unit. Some days I couldn’t get myself to go out and leave the babies alone any longer than I already did, so I’d sneak into one of the breastfeeding cubicles that were set apart from the rooms where the babies were, and I’d secretly turn on my phone for a couple of minutes, scramble to send a quick update to Maher in Chengdu, and to the grandparents who were at the apartment with me in HK.

They were recovered from Houda’s phone well after we had returned to Chengdu. Unfortunately, the dates were not saved.

Rahul came home after 3 weeks in the NICU, Leila after 6.


Leila is better. They will start feeding her again soon. She weighs 1480 (kg). Not aspirating undigested milk anymore. No stool yet though. Rahul is fine. Quite sleepy this morning.

They started feeding Leila again at 10 am. [There was a fear that Leila had caught a dangerous infection in her gut so they briefly stopped feeding her.]

Rahul is 1910 (kg) now, and he is difficult with me on the breast! Doesn’t eat and then when he does it takes ages to burp him:) Leila is tolerating the milk rather well. She ate from the bottle again very well. Still no stool though. 36 hours now. Can you see if you can buy baby monitors to keep near the baby with a system so I can hear them in my room if they cry. [Rahul was going home soon.]

Leila is doing good. Big bowel opening this morning Eating 13-14ml now.

Leila is good. Eating 16-18ml. She had medium size stool last night at 3 am. She seems calm. Belly slightly distended but soft so it is ok. They are aspirating some undigested milk as usual. How is Rahul? [He went home already and was taken care of by his grandmothers teta Houda and nani Varsha.]

Leila is eating 20ml. Digesting well. She is calm right now. Sleeping.

Did Rahul eat and shit? What consistency? [He was at home.]

Leila is ok. Still eating upto 20. I haven’t had the chance to get more info. Rahul had a bath. He was very calm. He weighs 2010. [He went back to the hospital for an ROP Retinopathy of Prematurity test.]

Leila is eating 20 ml every 2 hours like before. She looks bigger. They will weigh her tomorrow. Will ask again if I can hold her. Nothing else.

Maher prefers cousa (zucchini) to chicken. But he likes basela (peas). [Houda trying to decide what to cook one Friday for Maher when he came to HK.]

Leila is good:) Did Rahul eat? Is he calm?

Maher said feed him (Rahul) if he is hungry. Maher has all night to feed him. [A Friday afternoon. Maher came to the hospital to see Leila and would later go home to see Rahul.]

Is he eating now?!

She is good. Eating 20ml. Still a little distended. Weighs 1645.

Leila is much better. Eating 23 ml. After a glycerine tube insert she shat many times in the last day.

She weighs 1665 and is eating 26. Looks good.

She is good. Eating 28 and they want to give her the bottle [as opposed to the feeding tube] a little more often.

Everything is good. He weighs 2705 and should eat between 90 and 120.

She is very good. No tube in her mouth. Everything else same.

She is good. Eating 30 to 35.

Is he eating now? The next time he gets hungry give him some formula pls. Thanks. [I was still at the hospital so couldn’t get him breastmilk in time.]

She is in a crib with no wires. She weighs 1855 and she breast fed really well. She didn’t swallow a lot but sucked well. Prepare a crib for her at home soon

She is good. Same same.

She is ok. Eating 45! Weighing 1935. Temperature is still a little low. [She was in a crib now and had to regulate her own body temperature.]

Rahul and I, day 4 or 5 in the NICU
With Rahul, day 4 or 5 in the NICU
Leila in the NICU, 2 weeks old
Leila in the NICU, 2 weeks old

Natasha is mum of 4-year-old fraternal twins Leila and Rahul. She moved to Koh Samui, Thailand, with her children after spending 7 years in China. Her husband Maher, travels back and forth because work is in China. She has started practicing her yoga more regularly again, and even teaches a few classes a week, after a three year break. She blogs at her personal site Our Little Yogis and at Multicultural Mothering.

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Triplets?! Angela’s Story of Love and Loss

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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.


I’ve told my story so many times, you’d think I’d be able to write it down too. I’ve given talks to women’s groups and loss groups about it, done blog posts about it, etc., but something about this one is different. Maybe it’s because I know the audience reading this will be different… you’ll be in the thick of preemie-hood or the NICU or bed rest and you’ll want comfort and hope…

And I won’t be able to give you those things… Well, not in the way you’d expect at least. You see, my birth story ended with the loss of one of my triplets. I don’t want to scare you – having a preemie doesn’t mean you’ll experience loss too – but I do want to be real with you. One of the most real things I can do or say is this… my hope comes from knowing he made a difference in his 49 days of life. It comes from seeing his surviving brother and sister meet milestones and overcome obstacles. It comes from knowing that my story gets to be told and that it matters. And I hope you’ll feel that hope in what you read today, and not the sadness of loss.

I got married in 2007 and always knew I’d be a mom. We got pregnant right off the pill a year later, but sadly, we miscarried. We. Were. Devastated. I never thought I’d be dealing with miscarriage. Or what came next. Three years of infertility, another miscarriage, 2 rounds of IUI, and finally – finally – we were pregnant.

Angela-2

With triplets.

Angela-5

I was scared all over again. I was placed in the high-risk category. We nervously counted down the weeks and each week were surprised that all was going well. I had a shortened cervix, so I had a cerclage placed. At 22 1/2 weeks, I was placed on home bed rest to slow things down a bit. But that only lasted 2 weeks, and I was off to the hospital for a month of bed rest there. It was an experience that stuck with me so much, I even wrote a book about it.

Now the goal was to keep the babies cooking as long as possible. After 11 days, Baby A’s water broke, but he stuck in there for 19 more days.

From before birth, Carter fought to live. He fought to help his brother and sister live. While I was in the hospital on bed rest, his sac ruptured 19 days before his birth, leaving him unprotected. Because he was able to stay in, his brother and sister were able to continue to grow.

It would be food poisoning that would finally do me in. 2:30 a.m. and I was in full blown contractions. They couldn’t stop them, and I delivered my trio at 27 weeks and 5 days at barely 2lbs5oz each. My mom was in Hawaii. I’ll never forget how crushed she was to not be there. They were immediately taken to the level 3 NICU and I was taken to recovery. I don’t remember much about that first 12 hours. I do remember that at one point, my husband had to tell me some bad news, and I was so drugged up that I just kept encouraging him like it was happening to another baby and not ours.

birth of triplets

At birth, Carter was the weakest. On the first day, the doctors didn’t think Carter would survive. His lungs weren’t working. After a tense few hours, it was evident Carter was a fighter as he survived his first brush with death.

Those first few days they were in the NICU weren’t too hard, probably because we were still in shock and adjusting to the reality of things. It was the day of discharge for me that things got real. We got bad news on all three of them. It was the first time I cried. I wouldn’t cry again for 44 days…

During his first few days of life, he struggled with high glucose, needing high oxygen support, and needing morphine and blood transfusions. Little did we know this was just the beginning. The doctors also discovered that he and his siblings all had E Coli sepsis, which wreaked havoc on their lungs and caused them to have brain bleeds. They were diagnosed with level 3 and 4 brain bleeds and hydrocephalus, a condition which can lead to cerebral palsy or other issues.

At home, I focused on pumping – getting over 70 ounces a day of the liquid gold. It kept me sane, giving me something to do for the babies. I went to the NICU every single day. I think I might have missed one day in total. I had to be there. I had to.

After only a week of life, Carter started to experience edema, and we began to lose the baby we knew and see a more swollen boy. He would live the rest of his life with this challenge, getting up to 6 ½ pounds at one point when he should only have been around 4 pounds at the time of his death. Throughout the weeks, Carter’s journey would be one of constant ups and downs. He would have a good day, only to have a bad day the next. After about two weeks of life, we began to discuss the possibility he might not survive this journey. We kept our faith and refused to give up on our little boy.

Each baby had their ups and downs. Braden had ruptured bowel at 7 days old, Tenley and Braden both had to be transferred to a higher-level hospital and had surgery for their brain bleeds that first night there. She’d have 2 surgeries by the time she left 86 days later, and he’d have 4 surgeries and leave after 111 days.

Even when Braden & Tenley continued to make progress and moved to a different hospital, we did not give up hope that Carter would recover and be well enough to make the move with them. But, the night of their transfer, we were told he only had a 10% chance of making it. We still remained hopeful, and our boy still fought. For the next few weeks, we had many ups and downs, many times we didn’t think he’d make it. At one point, we said our goodbyes and made peace with everything that might happen to him. We knew he’d be going to a better place, and we knew we’d be okay too.

So many emotions coursed through my body during these days. It was unbelievably hard. It tested my faith, my marriage, my friendships, my everything. I was in a whole new world. I could spout off terminology like I was one of the doctors in the NICU. I kept a detailed journal of everything – the updates, the records, the stats – everything. It was another way I stayed sane.

Then, things took a turn for the worse as his kidneys shut down and he was on full support. But, they also took enough of a turn for the better that a small window of opportunity was found to transfer him to the same hospital his siblings were. One last chance. After he was moved, he made great strides. He fought hard, and he won several battles. He was coming out of the woods…

Tenley would eventually get contaminant meningitis at the site of her brain surgery opening, which sent her back to level 3 and almost took her life. It might not have been that bad to deal with, except for the fact that it happened at the same time as we were losing Carter.

At the same time as Tenley was back in level 3, Carter wasn’t keeping his stats up and was weakening. They couldn’t figure out why. They did what they could, but it didn’t look good. He hung in there for awhile, but that Thursday night, his stats dropped very low – dangerously low – and they couldn’t get him stable again. We were called, and we came. They found that fluid had filled his lungs. He had an infection – the deal breaker, we knew. And, it was time to let him go.

It was my husband who finally came to the decision to let him go. And I had to let him make that decision. As cowardly as it may seem, I couldn’t do it. Sure, I said goodbye and I made my peace, but I couldn’t bring myself to say those words to the doctors.

We held him on Friday, the 27th for his last 2 hours of life and for the very first time in his entire life… we watched him slip away, and we comforted him during his last moments as we sent him off into Heaven, knowing we’d see him again one day. He fought right up until the end. He helped save his brother and sister, and we believe he touched many lives with his fight and his story…

It had been 44 days since I cried. I tend to only cry when I’m frustrated or angry. Sometimes when I’m overwhelmed, but rarely when I’m sad. But, I cried. I lost it. Hyperventilated when the doctors took him off the machines. Maybe I was mad at the world in that moment, I don’t know…

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I only cried a few times in the weeks after. Something in me knew I had to keep going for my survivors. I was still in the thick of it and needed to focus on them. I think I made a conscious decision to choose to be okay. I wanted to celebrate the 49 days I had with him, and not mourn what I wouldn’t have in the years to come. This perspective is what gave me hope and allowed me to move on. Granted, I did have emotional affects from the experience and had a bout with post-tramatic stress disorder, especially once both his siblings came home – and he didn’t.

Carter announcement

All this is hard to hear – and write – but it needs to be shared. It’s one of the unfortunate realities of having a preemie. It’s why the research and the support and all the community surrounding it is so important. It’s why my husband and I do a yearly fundraiser and are in the process of forming a non-profit. You can actually participate in this year’s fundraiser currently by going here.

I do want to end on a positive note… today, Braden and Tenley are about to turn two. They’re thriving, overcoming obstacles, hitting milestones, and making us feel blessed in every way. Yes, they’re preemies. But they’re more than that. They’re fighters. Survivors. Miracles. And, they’re my gift.

then now

SMALLtwobirds9604

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Foodie Friday: Suck-Swallow-Breathe

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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.


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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Foodie Friday: The Continuation of the NICU Journal

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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.


Our fraternal twin girls were born at 34 weeks and spent 10 days in the NICU.

During my first visit to the NICU, I quickly learned how measured everything was…oxygen levels and heart rates ongoing… every three hours, temperature and diaper output and feeding efficiency…every night, weights to the gram. Everything is recorded to the exact degree.

For babies who are stable enough, most parents are allowed to take part in some of these “cares”, the temperature readings, the diapers, and the feedings. Despite my nervousness in navigating the wires and monitors and moving around such delicate baby parts, I got as comfortable with this role as I could, performing these tasks for my sweet duo as often as possible.

When our girls were released to go home, I left with a stack of charts to continue to track their vital stats. That was all I knew…it felt very normal to start every eating cycle as such…and I took my job very seriously.

When I ran out of printed charts, I invested in a thick notebook, and I continued my records.  And there, with so much “open” space, I began to record more and more data…

…what time they woke up, how much they ate, their wet and dirty diapers, any significant spit-ups…

And then I expanded it to note when we bathed the girls. And then we bought an infant scale, and I was able to record their weights, to the half-ounce (much to the chagrin of our pediatrician, I might add).

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Having this record was actually really handy, particularly when the girls were infants. In my sleep-deprived state, it kept me straight on what we’d done and when…and, if I’m honest, it helped me put one foot in front of the other during some pretty trying times.

It was very useful in keeping track of dirty diapers. Since early on, our girls have pretty different habits, and I was always afraid I’d miss someone being constipated since I’d changed so many dirty diapers from the other baby in the course of a day.

Once the girls started eating baby food, I made notes at each meal. At first it was to help me identify any potential allergic reactions, but then it was more to make sure they were getting a variety of fruits and veggies.

Once the girls got a little older, I knew I didn’t have to keep up my journal…but I couldn’t stop! I loved seeing our days in black and white…and – the little voice in the back of my head said – what if there were an issue? At least I’d be armed with information!

I finally made a deal with myself: I’d continue my journal through the girls’ first birthday, and then I’d retire my pen. I actually recorded notes through the girls’ one-year checkup, a few days after their birthday…just in case.

I still use my trusty notebook, though.  Thank goodness it’s nice and thick!  I jot down any questions I have for our pediatrician and what his answers are. I make a note of the girls’ illnesses and medications. And I have a running tally of their weights and heights from every doctor visit.

Certainly I didn’t have to keep up this “care” to the extent I did, but it is actually one of the pieces of advice I give new moms of multiples, whether they have time in the NICU or not. My journal kept me sane…it helped me remember who was eating what and when…and who pooped when and how.

And these days it’s fun to take a little trip down memory lane from time to time. Hmmm…how many dirty diapers did I change on May 17, 2009? Why, I’ve just been waiting for someone to ask!

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Micropreemie Twins: Ashley’s Birth Story

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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.


A guest post from Ashley, whose identical twin boys — now almost seven years old — were born at the end of her second trimester.

After two years of trying to conceive, I finally saw those two beautiful pink lines on a home pregnancy test. It just so happened to be Father’s Day, 2006. With tears streaming down my face, I was so excited to tell my husband, “Happy Father’s Day!

When I went in for my ultrasound appointment at 19 weeks, we got a huge surprise. “Are you ready for twins?” the ultrasound tech asked me. “No, and that’s not a funny joke, either!” I told him.  He laughed and told me it was no joke and turned the monitor towards me. I saw two perfect little beings mirrored one above the other. I was having identical twin boys who had kept their presence unknown from me or the doctors for this long.

That day I was also told that I was now very high risk because the boys shared the same placenta and they thought that they also shared the same amniotic sack.

At 20 weeks gestation, I met with my new group of high risk doctors, 140 miles away. After my first ultrasound, I was told by my main doctor’s colleague that my boys suffered from Twin-to-Twin Transfusion Syndrome and that I would never carry them to a viable term. He said I should make peace with the fact that I would be burying my children and not taking them home.

Fortunately, I was quickly told by the doctor I was sent to see that they did not know for sure that it was TTTS, but from the small size of Baby B they suspected this to be true. He then proceeded to tell me that my cervix was extremely too short, ½ cm when it was supposed to be 3 cm, and that I would have to have a cerclage before any other doctors would or could take care of me and my babies.

After that procedure was completed, he then sent me to Cincinnati Children’s Hospital. This was one of only two hospitals that were equipped to handle TTTS patients. I arrived there at 5:00 in the morning for an MRI, genetics testing and two very detailed ultrasounds. On my second day there my parents and I met with the team of doctors working on my case.  They told me that I did not have TTTS but I had an incompetent placenta that was not providing my baby B the nutrition he needed to grow. I was to continue care with my high risk OB and take it day by day.

Fast forward to 25 weeks gestation. I had been on very strict bed rest for the past 5 weeks at this point; I was only allowed to get up on my feet to shower and use the restroom. I went in for my weekly appointment on the Tuesday before Thanksgiving. I asked my doctor if I would be able to go home for the holiday, as by that time I was living 3 hours away from my family due to my husband’s new job. He said he didn’t see what that would hurt, everything looked good, but I was due to be back for my appointment the next Tuesday.

I enjoyed a wonderful holiday with my family and looked forward to seeing my growing babies the next week. When I got to my appointment, my second favorite doctor was seeing me that day. She prepped me for my ultrasound and I lay there and enjoyed seeing my boys on the big screen. After it was done she looked at me and told me I was not going home until the boys arrived.

Baby B was suffering from diastolic blood flow disorder and if he became distressed it could go bad fast and we could lose him as well as brother.  She needed me where they could monitor him. I was at 26 weeks and 5 days at this point. I made camp in the room I thought would be mine for another 14 weeks; little did I know that the doctors and NICU team had other plans.

I had doctors coming in and checking the boys and talking to me about what was going on that day and the next day. My wonderful father saw how overwhelmed I was becoming and asked the Neonatologist, “If this were your wife or daughter, what would you do?” The doctor looked at us and told us they were better out than in; my boys had an 80% chance of survival at this gestation, and if I were his wife or daughter he would deliver and not risk losing one or both of the boys.

My tiny little boys were delivered that Friday, December 1, 2006, at 27 weeks and 2 days gestation, 13 weeks before they were scheduled to arrive. Baby A weighed 2 pounds 3 ounces and was 13 inches long; Baby B weighed 1 pound 14 ounces and was 12 inches long.  We started our NICU ride and were prepared for the rollercoaster.

imageOur Baby A did great; he was a feeder and a grower. He came off the ventilator 8 days after he was born and went home 52 days after his NICU journey began, weighing in at 5 pounds.

Our Baby B had problems, though; he was on a ventilator for 32 days, had several infections and required several blood transfusions. There were times we worried about the fate of our littlest one. We never lost our faith that he would come home, but as any mom would, you worry about your child when the doctors look at you and tell you all they know to do is pray. He had to have a hernia repair on February 13, 2007, and that helped him a lot with his breathing. We finally brought him home on my due date of February 28, after 89 days in the NICU. He was still on oxygen and 9 different medications, but he was finally home where he belonged and weighed in at a whopping 6 pounds 6 ounces at 3 months old!  He came off his oxygen 3 months after he came home.

While in the NICU baby B failed his newborn hearing screen twice. We found out that he had severe to profound hearing loss in the left ear and mild to moderate hearing loss in the right ear when he was 6 months old. He was fitted with his first set of hearing aids on July 22, 2007, and we started speech therapy that same month.

Fast forward to today…my boys will soon be 7 years old! They are in the 1st grade and are doing amazing! To look at them you would never know they had such an early start. They both are accelerating in school and their teachers are just amazed at the knowledge these boys already have. Baby B is going to get his third set of hearing aids in the next week and is doing great in that regards.

image(1)My boys are my little miracles, I am so very grateful for them every day. Sadly the strain of having two sick children and other personal issues that never fully became resolved took a toll on my marriage. Their father and I divorced in 2011. I am thankful to report that we have remained very good friends and co-parent the boys very well.

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Special Needs in the NICU

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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.


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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The Stories of My Babies Born at 31 Weeks and 27.5 Weeks

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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.


I’m Carolyn, the mother of three prematurely born children.

I had a quick introduction to parenting when my 31-weeker arrived very suddenly and with what I thought was little to no warning!

The day my little 4-pounder arrived, I woke up feeling pretty good and headed off to two BBQ celebrations; one at the lunch hour, the other by about 4:00 that afternoon. After BBQ #1 I began to feel a bit of indigestion, sore stomach, a bit of backache. I had eaten a veggie burger, but had a cola pop (a “soft drink” to my American friends), which I had been avoiding during my entire pregnancy. I chalked up the indigestion to having a caffeinated cola, when I probably should have skipped it entirely.

At BBQ #2 I talked about expecting my first baby and we learned of a new mom who had just given birth in a taxi cab a day or two before. We giggled; how could a mother NOT know she was in labour until it was really too late?? The afternoon progressed and so did my “indigestion”.

After several washroom visits that afternoon there were no “results,” if you know what I mean. Around 6:30 PM my husband and I headed back to our city, about a 50 minute drive away, made a quick stop on the way to return several party folding chairs, which I proceeded to carry on my own. I wasn’t in labour, so of course I was still carrying out small tasks and some light lifting. As we drove the rest of the way home I could feel my baby moving quite a bit, but figured, “that makes sense.”

About four hours later I found myself almost delivering my firstborn into a hospital toilet, as we had made our way fairly quickly to the hospital when things were obviously going very wrong.

Do you think by the time I got to the hospital, after having a little bit of spotting, and intense backaches that I thought I was going into preterm labour? Why, no. I had no idea!

Up to that point there had really been no conversation about preterm birth and the symptoms to be aware of. I had heard of it, but I was told I’d likely go to term, maybe even late because I was a healthy woman, with no issues. So when my husband rushed me sprawled across the backseat to the hospital, I thought I was having a bowel obstruction or something completely crazy. Not once did the idea, “I am going to have my baby,” enter my mind. Thankfully our firstborn little boy was very healthy and after not quite 4 weeks in a NICU he was home with us to celebrate our first wedding anniversary.

Fast forward not quite two years later and I was pregnant with twins. I was so excited to be having twins and I tried to remain positive that these little babies would be carried to term. I found that sometimes you can think positive till the cows come home, but you cannot control your body.

Almost two years to the day preemie # 1 arrived, along came preemie #2 and #3; arriving at 27 weeks and 5 days. We were not in a hospital with the type of level of Neonatal Intensive Care Unit anyone would want a preemie born in, let alone two, but that was the hand we were dealt. The hospital we were in didn’t have a NICU at all, just a small area with a couple unwell term babies.

My twins were born in about an hour, after I presented at the hospital and said “I think I may be in labour,” as I wheeled my suitcase into the ward. Within that hour, I went from standing and holding my own, to saying, I am pretty sure I am about to have these babies, to delivering in a high-risk delivery room with no medication or GA. Our twins were born quickly and were stabilized over several hours, while we waited to hear where our tiny 2-pound babies would be transported. Would they go together to the same hospital or would they be separated? We didn’t know. The uncertainty of having preemie babies is one thing, but to have no idea where they will go for the emergency and lifesaving care they need because it depends on bed availability in the province (or state) is traumatizing!

Transport to NICU

Eventually, within 4-6 hours the twins were moved one-by-one to the same hospital. The first one to go was considered the more unwell baby and he took priority. The first twin was followed by my husband and mother to the hospital about an hour away. I stayed to be monitored, was discharged in a little over 3 hours and was able to go behind the second transport ambulance. I was chauffeured of course!

I am very grateful to report that all three of my children — my older son, 5, and my twin boys, 3 — are growing up happy and healthy.  Their premature births have had a profound effect on our family, of course, and I now chair the Multiple Births Canada’s Preterm Birth Support Network and work in my local multiples group as a peer support worker.  I am passionate about sharing my experiences, in the hope that I might educate other families about the signs of premature labour.

Carolyn blogs  at Twintrospectives, reaching both the preemie community and the multiples community.

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

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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.


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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How I Learned that My Child Had Frontonasal Dysplasia

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Categories Congenital Anomaly, Difference, Medical, NICU, Prematurity, Special Needs, Theme WeekTags , , 7 Comments

The first indication I had that there was a problem beyond how premature my daughters were was a delivery nurse’s comment as the obstetrician removed Baby B from my womb: “There’s something wrong with her face!” Both my girls were whisked away to the NICU, although they did unstrap one wrist to I could stroke M’s hair for an instant while I was sewn back together.

I didn’t get to see my daughters until they were 36 hours old. They were in the NICU, which I wasn’t allowed to enter, thanks to a fever. At first, I was convinced that M hadn’t made it, despite my husband’s assertions to the contrary. I could see the fear in his eyes. It wasn’t until later that the fear was as much for my mental health as for our twins’ physical health.

In those first 36 hours, I was brought conflicting news. The babies were doing fine. They would be given my colostrum as soon as I produced some. No, they’d be on high-calorie formula only. They were on feeding tubes. Only J was on a feeding tube. M was at risk of starvation because they couldn’t insert the feeding tube nasally. She wouldn’t be allowed to starve; they could insert it orally. She had no nasal passages. She might have nasal passages. Of course they’d give the babies colostrum, mixed into their formula. The best news of the day came from my friend Kaylan. As my husband tried to explain to me what had gone on with M’s nose and droned on about blockages, Kaylan cut him off. “She had a really big booger,” she said. Her feeding tube was in place now that her nose had been cleared.

Twin B in the NICU, How I Learned that My Child Had Frontonasal Dysplasia, from hdydi.com
This was how I first saw my little girl.

I didn’t really know what to expect of the NICU, and I was more struck by how tiny both my little girls were, by how many wires and tubes draped their miniscule bodies, than by the difference in shape between M’s nose and J’s or how different my identical daughters looked. The girls wiggled and squirmed much as they had in my womb, but they cried too, almost silent kittenish meows. They were alive and I could hold them. I forgot all about the delivery nurse’s comment and concerns about M’s nose and just held my babies, one at a time. They were feeder growers. There was a little boy on hospice care in the next isolette to remind me how fortunate we were to have relatively healthy children.

Closeup in the NICU, How I Learned that My Child Had Frontonasal Dysplasia, from hdydi.com

It wasn’t long, though, before M’s face was at the forefront of our medical concerns. M’s nose was asymmetrical, large out of proportion with her face, flat and dimpled. It felt more like the cartilage of my upper ear than the hard bone of my own nose. It might be a glioma, they told us, a brain tumour, around which M’s face had formed. I knew better than to rush to the word “cancer” on hearing “tumour”, but that was where my mind went. We were scheduled for an MRI. Since a newborn couldn’t be expected to be still of her own accord, she would have to be sedated. At the same time, we were scheduled for an appointment with a geneticist to talk to us about what genetic tests would show. Facial anomalies frequently accompany chromosomal abnormalities of all sorts, from the relatively common Down Syndrome to a plethora of rare conditions.

I asked whether J should also undergo genetic testing, given that she was M’s identical twin. If there was a DNA-based issue, chances were huge that J had it too. My concerns were tabled until we had a diagnosis for M.

The geneticist saw us before we even left the NICU. It was strange to attend an appointment with a doctor for a person who couldn’t be present. Our NICU was part of what was then Austin’s Children’s Hospital, and the geneticist we saw was housed in the same building, but M still couldn’t leave the NICU to attend her own appointment.

The geneticist was incredibly kind. She could see how terrified we were. She was able to give us the good news that there was nothing obviously wrong with M from a genetic perspective, but we were no nearer a diagnosis. The only thing that was still on the table was glioma. We decided early not to include my family in the conversation; I knew we needed positive energy and we weren’t going to get that from them. Even a conversation with my ever-positive mother-in-law brought me to tears, tears I had so far withheld, as she told me all she had learned about St. Jude Children’s Research Hospital and its amazing work on pediatric cancer.

We had to wait for M’s MRI to know anything more about what was going on. Her breathing seemed unaffected, her pulse-ox consistently healthy.

M and J were out of the hospital and I had returned to work before our MRI appointment day came. In fact, M had done better in the NICU than J and was released to come home at 16 days old, not bad for a 33 week preemie. J joined us less than a week later.

On the day of the MRI, we had to withhold food from M. It broke my heart to pump her meal into a bottle instead of feeding my poor hungry crying baby. She was so tiny on the hospital bed they wheeled away from us through swinging doors. The waiting was awful, but eventually a nurse came out to get us. Only one parent would be allowed in the recovery room as she awoke. My husband and I looked at each other in horror, but he made the call. “You go,” he told me, “’cause she’ll want to nurse.”

She was asleep in the enormous bed when I went to her, an IV in her hand. She wiggled a little before opening her eyes groggily. The nurse gave me permission to hold her, and she hungrily rooted for my breast before giddily guzzling her next meal.

We were told to expect answers in a couple of weeks. On day 14, I had heard nothing. On day 15, I called the craniofacial specialist who had ordered the MRI. I’d met him at M’s bedside in the NICU, but I couldn’t remember which white-coated man he was. The receptionist who answered the phone didn’t know why I hadn’t received a call. I told her that I just wanted to know whether my baby had cancer or not. It had been months since we found out there was something wrong. She heard the urgency in my voice and put me on hold, returning to tell me that it wasn’t a tumour. Why they never called me with the results, I will never know. I guess it wasn’t urgent to them because she didn’t need immediate treatment. Well, it was urgent to us.

I made an appointment to talk to the craniofacial specialist. The wait was excruciating. There was an answer out there, but we didn’t have it yet.

Frontonasal dysplasia in one identical twin, from hdydi.comFinally, our appointment came, and with it the answer. M had frontonasal dysplasia. It was a condition in its own right and not indicative of any additional problems. In short, she had a facial cleft, not unlike a cleft palate, but higher in the face. We were told that corrective surgery was an option, but that M might not need it. We should watch her activity level and let them know if she seemed short of breath, which might necessitate surgery. Around age 7, kids might begin to tease her, so we might want to consider surgery for social and confidence reasons. They showed us photos of other kids with far more advanced frontonasal dysplasia. M’s was a minor case.

We had our diagnosis by the time the girls were 5 months old. M was perfect. So was J.

M is pretty and her special nose fits her face, frontonasal dysplasia and all.
Tell me she’s anything less than gorgeous. I dare you!
Photo Credit: Lifetouch

Today, at age 7, M has come to learn that her special nose is something that some people notice. Most people just look at her and see a vibrant, energetic, smart, beautiful chatterbox. Her frontonasal dysplasia is part of her story, but not a defining part.


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.

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