Twinfant Tuesday: Multiple Infants with Multiple Needs

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Getting ready for a day of appointments.

The topic of Twinfant Tuesday came up and I wondered to myself and to Sadia, did I have a good experience during the infancy stage and do I have something to contribute? At first thought, I had serious doubts. My memories recall close to four months in a NICU, living away from home, the discharge and then the madness of appointments that awaited us, all the while working hard to balance the needs of my older child. My husband was at work Monday to Friday, working very long days due to unfortunate timing and he and I together were trying to figure out how to navigate as parents of 3, two and under, with particularly special needs.

We made it to some special events.

During the infant stage I was busy running my twin boys to appointments in town and out of town, navigating the hospital parking lots, calculating the best and quickest routes to my destinations, and breastfeeding in empty seminar rooms and in the back row of my minivan. I did whatever it took to keep these little infants well. It felt exhausting and unrelenting. These memories are my initial thoughts when I think about their infancy.

But when I think about these things and the other things that are too many to mention which made up the early week s and months of my twins’ first year, I realize that we had somewhat of a unique experience. An amazing experience actually. The healthcare they required and the follow ups that came with it enabled me to get to know these babies cues, health needs and personalities in a way I can’t explain. It’s as though I developed a sixth sense of proactivity when it came to their unspoken needs. That’s what I’m going to call it. I learned that really and truly, I was their expert. They couldn’t articulate their needs, but I knew how to sense them and articulate for them. I knew them best. Doctors knew about healthcare and the typical needs of babies like them, but I came to realize I know them best and if I had a gut feeling about something it was going to be accurate. Don’t get me wrong; I do appreciate every single thing our doctors and specialists have done for us along the way, but I recognize that we worked as a team and I really was my babies’ voice.

Putting some occupational therapy concepts to work.

So when I look back on my twins’ infant stage, I realize that it really was enjoyable. I did many things with them every day, maybe in atypical ways, but I breastfed them like I wanted to and made some fun and unique memories with them along the way. I look forward to sharing their stories with them one day.

On the road again.
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(We Will Never Be) Full-Term

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

(We Will Never Be) Full-Term

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

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

Kangaroo care, we’re being snuggled in our dreams

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

We don’t care, medical terms are your affair

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

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

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

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

We don’t care, medical terms are your affair

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

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

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

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

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Twinfant Tuesday: You Are Not Alone

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This is based on the first blog post I ever wrote, Me…Start a Blog? when my fraternal twins were 1-year-5-months old. Reading blogs like HDYDI and other MoT, MoM blogs gave me a sense of connectedness, of support and of resources that helped get me through the first-year-and-a-half of parenting our prematurely born twins, who did NICU time in Hong Kong, for 3 and 6 weeks, and then “house-arrest” time for another 5 months.

Once I started the blog, I updated it consistently while in Chengdu, China and even wrote as an author for HDYDI for a while.

For the last year we have been living on a Thai island, a dream come true. Rahul and Leila are 4 now, swimming and running around barefoot with their friends. They go to pre-school and I am doing my yoga practices and teaching again.

I don’t update my blog as frequently anymore, still enjoy it, but there isn’t that same need to get past the difficult, painful experiences of the the NICU time, to express every moment or milestone, to compare with others, or to validate my parenting choices. There continue to be many stories, but for the moment they feature less frequently on the blog.

I have great blogger friends whose ideas and thoughts inspire me, and I found solidarity with many of them at a time when I needed it most, and now I hope some of these posts can do the same for others.

A mother of twins talks about how MoM blogs made her feel less alone in the first year of twin motherhood. from hdydi.com


Me…Start a Blog
Written end of March 2011

Over the last two years my world has revolved around taking care of Leila and Rahul, my almost year-and-a-half twins. So to start a blog now, seems a bit strange. What could I possibly have to say? And when?! I don’t know which regimes are being toppled over, I haven’t seen photos of the effects of the recent earthquake in Japan, I don’t know what yoga workshops are on in the region, don’t know if Federer is still kicking ass, or who presented at the Chengdu Bookworm literary festival; or anything for that matter. Outrageous, I know.

Only a few years earlier I didn’t even know what a blog was until friends in Chengdu complained that they couldn’t access blogspot. Facebook, YouTube, and a number of blogging sites are blocked in China.

After some complications in my pregnancy while in China, I ended up spending 4 months in bed including 7 weeks in hospital, split into 4 different hospital stays.

A number of foreign doctors here, in Shanghai, and Beijing recommended that we leave for the birth, due to the high risk of going into preterm labour and possible lack of high level care for premature babies.

So we went to Hong Kong at 26 weeks gestation. L and R came at 31 weeks, and were cared for at the Queen Mary NICU.

The bed-rest, high-speed internet and open access to all sites meant lots of time on the internet, and my initiation to blogs. But it was only when L and R were five-months-old, after my mum who had spent 9 months with me left, and both of those things coincided with our return to Chengdu that I really got into it.

I came upon some blogs that MoT’s wrote. For the first time in a long time I felt like I could relate. They wrote how exhausted they were, how they only bathed their babies a couple of times a week, rarely dressed them in anything other than pyjamas. I didn’t feel as guilty anymore that L and R didn’t go out everyday. They weren’t the only ones. To have them both ready to go out meant nappies changed, both well fed, not too tired, and a big diaper bag full of provisions.

I remember a post by a father of twins about how his two-year-old girls were finally sleeping through the night, most of the time, anyways. So my two waking up a few times each and every night means I can still be considered in the norm.

One mum wrote about her birth story; similar to mine – it included flights, hospital stays for both mum and babies, pumping pumping pumping, stress, fear, pain, relief.

Then there was one couple that blogged about their micro-preemie twins birth, NICU stay including all the medical details, the obsession with weight gain, the monitors, breathing, digestion, good days, bad days. It wasn’t the most fun blog I ever read. They were born much earlier than L and R, but I could relate to much of it and realised that I would have to deal with this part of R and L, and in fact all 4 of our lives one day, and to be at peace with it somehow.

Reading these stories was like holding a mirror out in front of me, a way to see what we had been through, a way to realize we were not alone – and importantly to let go of it.

There were honest, touching posts as well like the one HDYDI MoT, rebecca, who wrote One Baby Envy. Others complained about the silly questions they got when they took their twins out. If I get started on the questions and comments I got in Chengdu it would never end.

Sometimes the comments on the blogs were funny – MoM’s bitching about how J Lo (on the cover of People Magazine, March 2008) could possibly look as perfect so soon after she had her twins.

I related to these parents and it helped with the isolation I sometimes felt being in China without my family and with no experience with babies whatsoever. Neither of my brothers or brothers-in-law have children. One of my childhood friends has a son in Zambia who I haven’t yet met. I had held one of my friend’s tiny new born baby in Lebanon a couple of times last year feeling clumsy and incapable all the time. So yes, I had that experience.

I had a few parenting books. They only briefly covered twins if at all.

But, we were together again after my 6 month stint in Hong Kong, the 4 of us in Chengdu. That was our main source of strength. I had help from people here. L and R’s nanny or “ayi” meaning aunty as she is called endearingly is a superwoman, a great source of real support and help.

A friend as close as I imagine a sister to be was strong and present when I needed her most.

Another friend lent me lifesaving books at every stage along the way. And there were many others who made up my “village”, both in real life and in my blog life. The crazy thing now is that sometimes my kids both sleep for a few hours at the same time, but silly mama stays up to blog.

In addition to relating to other mums and dads on blogs, I found tips, such as this post that gives advice about choosing a double stroller that works for you depending on it’s use, tips like store big quantities of diapers, wet -wipes, food etc. so you don’t need to go out to the stores until really necessary. Obvious, but hey at least I don’t feel crazy when I walk into my pantry and see the hoarding.

There were videos of calm mums simultaneously feeding their babies. R and L were rarely on the same schedule, so it didn’t apply, but still nice to see how others do it.

So even though I live in this tiny world of eating, playing, bathing, trying to schedule, exploring and sleepless nights, I feel like I am above water now, some of time at least.

I now have the privilege to share my own stories and maybe get some interaction going. Perhaps a new mum, even a MoT will come across it and feel she can relate, find some useful information, or just have a laugh. I would be glad to contribute to that somehow.

These are stories for R and L to read one day if they want to. And if nothing else a way for friends and family to keep up with our lives in China, or wherever.

The other day I read a blog about the therapeutic effects of blogging. That did it for me, a few minutes later I signed up! Not really, I’m exaggerating, but it made me realise that every time I put down my thoughts they rarely came out negative or depressive, but rather I manage to find the “funny” in things, now that I am not sinking all the time, of course. It reminded me of a phrase from a song my dad often used to say to his not so smiley teenage daughter,

When you smile the whole world smiles with you. When you cry, you cry alone.

L and R out in Chengdu. 13 months old
L and R out in Chengdu.
13 months 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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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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Help the Preemie Community – Shop the Celebrate Carter Fundraiser

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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.


Want to help the preemie community and get some holiday shopping done? The Celebrate Carter fundraiser is here! This year, it’s a shopping catalog of various vendors who are donating a percentage of their sales to the fundraiser, which benefits two deserving preemie/loss related charities.

ABOUT: Carter Bickford is the first-born son of Craig and Angela Bickford of Cypress, Texas. He was born on December 9, 2011, along with his triplet brother and sister, Braden and Tenley. They were born very sick at 28 weeks. Sadly, Carter passed away at 49 days old from complications of prematurity. The Bickford’s first time holding him was also their last, but they are grateful for every day they had with him. He was a true fighter and his story has reached thousands. His parents hope that by doing these fundraisers annually, they can raise money in his honor to help other organizations reach even more people.

Home page banner

BENEFITING: This year, the beneficiaries were chosen for their involvement in both the preemie community and the loss community. Celebrate Carter is proud to be partnering with Graham’s Foundation and the Zoe Rose Memorial Foundation.

GsF New Logo   ZR logo 2012

WHEN: Shop between 11/15 and 12/1 at www.celebratecarter.com – over 70 vendors!

You can find more info about the fundraiser on the website, the Facebook page, or in the flyer below. You can also share this flyer with friends and family so they can participate too!

Final Celebrate Carter Flyer

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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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Premature in Hong Kong: My Twins Born at 31 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.


Leila and Rahul were born 2 months early, at 31 weeks in Hong Kong, where I temporarily moved a month before the birth, to access better NICU facilities.

At 29 weeks my contractions became more frequent, every 5 minutes. I was immediately hospitalized, for the 4th time during the pregnancy, given another round of steroid shots to speed up the babies lung development and put on a magnesium drip. The contractions were controlled at this fancy private hospital that didn’t have an NICU. So at 8am on Sunday morning, exactly 31 weeks gestation the doctor announced that I was in labour and had to be taken to the Queen Mary, a public hospital with an excellent NICU facility.

Rahul was low in the womb so a Cesarean section was risky. Leila was under my rib- cage and in a transverse position. A natural vaginal birth carried the risk that she might not turn head-down and an emergency C-section would then be needed.

Until then, my doctors had all been men who said I would need a C-section. That morning though, my husband Maher and I had to decide what to do on the spur of the moment, while I was contracting and in an emergency delivery setting.

The doctor on call was refreshingly a young woman who was insinuating that I opt for the natural birth. We didn’t have my blood-type on paper, so they couldn’t operate until they got the results. They drew blood soon after I arrived, late morning. They could not administer an epidural for the same reason. I secretly wanted to give birth naturally, and for the first time in the entire pregnancy I realized that it was possible, with risk of course, but we were accustomed to that by then. I felt I was in good hands. The efficient and natural way in which my case was being handled made me realise they did this often.

A sweet nurse called Angel held my hand through many of the growing contractions and Maher was by my side. I breathed in a gas mask, which would ease pain from the contractions. I remember frantically asking for Maher as I was being transferred from the ambulance stretcher that brought me in from the ambulance. I was wheeled through blue hallways, metallic elevators and ended up in the little delivery room. He wasn’t with me and I had no idea if he’d found his way.

He doesn’t speak a word of Mandarin, forget about Cantonese. The contractions were getting stronger, and longer and I didn’t realise that it wouldn’t be until 5pm that the babies would arrive. He made it. I relaxed a bit when as I saw him.

It was lunch time. The nurses insisted that he grab something to eat. There would be a wait before the delivery. My parents were waiting outside by then too. He took them down to the Starbucks that I would get to know very well over the next 6 weeks.

Between contractions Maher drew my attention to the view from a window next to my bed. It was beautiful. The afternoon sun was shining, the blue sea was glistening, and there was an island. The gas relieved some pain, but as the contractions became stronger I started to do bhramari (humming bee sound), and sheetali (sucking air in through a rolled tongue) breath work. It all came back to yoga, during the pregnancy and now. It was spontaneous. It kept me calm, grounded, and connected to a familiar practice. I used ujjayi breath all the time, contractions or not.

Just before 5 pm, I had fully dilated. The room suddenly filled up with nurses, doctors and two teams of paediatric specialists, one for each baby. Maher caught a glance of Rahul when he came out, right before he was rushed to the NICU. In the meantime a doctor was pushing on my belly to help baby 2 turn around. Another doctor had already given me an episiotomy and was ready to enter and manually turn Leila if needed. She turned on her own and was born 7 minutes after Rahul. She didn’t cry. There was some quick movement and maneuvering around her incubator for a few moments. They resuscitated and rushed her to the NICU.

A few minutes after all the delivery procedures ended Maher went up to the NICU to see our babies and to get some information about them. Only parents were allowed in during the visiting hours, 9am to 8pm. In the span of a few minutes, the room I was in went from being full of shouting nurses and doctors, to empty. I found myself alone, eating a bowl of rice and Cantonese beef or pork. I don’t remember which. There were two attendants who came in to ask which I didn’t eat – beef or pork. To them my brown skin automatically meant that I was either Hindu or Muslim. I asked for chicken.

The women then wheeled me to a room with thirty little cubicles separated by green plastic curtains. Each space fit a single, tiny bed and a little cupboard. I was to spend the next 3 days and nights there.

It was almost 8- o’clock, the end of visiting hours. My parents and brother-in-law who had just flown from Chengdu, made it in for a few minutes. They put my clothes, mobile phone, and whatever food they had on them in my little cupboard. I could reach for it from my bed. Maher came by for a minute with no news of L and R yet. The doctors were still preparing and assessing them and he hadn’t been allowed in. He rushed back to catch the 8pm deadline.

The attendant on duty who was changing sheets, cleaning the cubicles, handing over babies to their mums for feeds, and bed pans to others was not in a good mood, obviously bored and exhausted from her day in and out of dealing with new mums and their crying babies, and especially lacking patience for one who doesn’t speak Cantonese. I was exhausted but the adrenaline was pumping through my veins. My husband had seen the babies and sent me photos by SMS but they didn’t open on my phone. I spoke to family and friends. They were all upbeat and congratulating me. Maher was worried and I was reassuring him.

The room I was in was always awake, day and night, with the 30 mums trying to feed their babies, sleep, use the toilets and showers, and contain their excitement and pain.

A nurse came by to check my blood pressure. It was high as it had been for the last few weeks. I was not to leave the bed until early the next day. She also handed me a syringe and showed me how to express milk by massaging down on my breast, and then pushing in and down, but not squeezing. I slept for a few hours before I had to pump again, and then again. In the future I was to wash my hands thoroughly before expressing, clean the nipple and make sure the syringe was always in its wrapper. This I did every 3 hours that night, and for many months after. The nurse was surprised by how much colostrum I managed to express. Each syringe had to be labeled clearly and precisely with the date, time, and babies names, and then kept frozen until I could take them to the NICU in the morning.

The NICU story is a post on its own. After the stressful entrance into the world L and R are now healthy 4-year-olds. For almost a year now we’ve been living on Koh Samui, a magical island in Thailand. Living a dream.

photo(2)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 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 3 year break. She blogs at her personal site Our Little Yogis and at Multicultural Mothering.

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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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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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A&D’s Birth Story: 35 weeks 2 days

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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.


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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