Tag Archives: prematurity

A preterm MoM intro

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With the new year upon us I thought I’d take on a new blogging opportunity. Let me introduce myself. My name is Carolyn and I am a mom to fraternal b/b twins, living, parenting and working in Ontario, Canada.

My twins are 2.5 years old and are spunky little men, with great personalities of their own. My guys are little for their age due to arriving at 27 weeks and challenging their parents from day one! They are amazing fighters and have come so far!

Canada offers mothers maternity and parental leave if they’ve been working enough hours leading up to the arrival of their child (ren.) I was lucky to be one of those people. I actually took 16 months off to be with my babies. The times were tough, but we made it through. There was definitely a lot of frustration and tears for everyone involved, but these little men taught us much about perseverance and developed our ability to kick adversity in the b-u-t-t time and time again.

I have been writing a personal blog coming up on 2 years about the ups and downs of my family. You can find my blog at http://twintrospectives.blogspot.ca. We also have an older boy, born at 31 weeks, who the twins love and learn so much from. These 3 boys have been our family’s inspiration.

I usually blog on the topic of prematurity and what might come afterward for others and what has evolved for my family in particular. The experience of preterm birth has given me a positive outlook on life, which might sound weird, given the fact preterm birth is the scariest thing most who go through it will ever experience. I figure if I can get through such an uncertain time, along with my family members, then there isn’t really anything else we can’t figure out. This is what I hope to be able to teach my children as I mother them and watch them grow during their childhood.

Aside from helping my own children along the way, my greatest passion is assisting new families going through the preterm birth experience, one step at a time. I have found my way into my local Multiple Births Canada (MBC) chapter, now working as a peer health worker (outreach worker,) as well as I’ve  just taken on a co-chair role in the development of MBC’s Preterm Birth Support Network.

In 4 short years my amazing little preemie men have taught me so much about life and I hope to be able to share some of what they have been teaching me with the How Do You Do It community.

Reunited

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

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

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

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

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

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

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

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

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

It takes a lot of blankets to secure a baby of less than 5 lbs in a carseat.

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

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

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

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

Prematurity and School

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When my babies and I returned to Chengdu from Hong Kong after their birth at 31 weeks of gestation, they were almost 6 months old. Many of our friends came over to visit; to meet the tiny babies.

One of those friends was a school principal. Since we’ve been considering schools, and when to start them – I’ve heard from friends that children start anywhere from 2 to 6 years old depending on where they come from and what their parents can manage and prefer to do – I remembered something she said to me.

For every week of prematurity, hold back the child from starting school by a month.

When we visited a school a few months ago, that principal also suggested that we hold them back rather than push them into school early.

This all worked well with my thoughts on not sending my children in too early, on not pushing them.

Then more recently, yet another principal talked to us about some of her experiences in the past, with premature children having difficulties in music classes, for example.

I’ve felt that my children are in the average of their age group. I can’t say that on any scientific basis, but I’m not too bothered with what they can or can’t do, of course that is keeping in mind that they are highly energetic children with no major, obvious issues. They talk. A lot. They play and laugh.

Last month I sent my 2 year 3 month olds to school. They were the youngest in their class, by a few months. At this stage of extremely quick growth and change, I’d say they were the youngest by far. So after a week of battling with myself, after having done the exact opposite of what I believed in, and what I was advised – I pulled them out of school.

In terms of separation from me, interaction and focus in class, they did very well, but I wasn’t convinced that it was the best thing for them at that time. My son was crying in his sleep, and unusually quiet and forlorn. My daughter became even more clingy than usual. I saw obvious changes. Of course there will be an adaptation phase whenever they start school, but we didn’t have to have it at that time. I have the luxury of being a SAHM, and all the plans that I made of what I would with my free-time, can wait a few more months!

But mainly I am hoping that the extra six months at home with us, will give them more confidence and security, other than more words, the ability to better express their emotions, they’ll be potty trained. After speaking to a number of close mum friends, I realized that almost all had waited until their children were 2.5 or 3 before sending them to school, and even then, they only went 3 half days every week.

Now, we are doing many activities that include music, dance, and just simple play – and we are all happy with our decision. I’m sure that the 6 months I hold them back will give them time for growth, and confidence.

My question to parents, both of premature children and not, to teachers, educators, paediatricians, and anyone who has an opinion on this: When did your children start school? Is there much change in a child between the ages of 2 and 3?

Have you read or heard of studies about prematurity and education, prematurity and its relation to holding back children from starting school?

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Natasha lives in Chengdu, China with her husband Maher. She is mum of twins Leila and Rahul, and was an Ashtanga Yoga teacher until her little yogis became the teachers. You can find more of her thoughts and stories at Our Little Yogis. http://natashadevalia.com

RSV

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To parents in the know, there are few acronyms that make one’s heart sink faster than “RSV.”

Respiratory syncytial virus is an everyday virus that gives adults and most children no more than the sniffles. When it comes to young infants, especially preemies, the disease can ravage their lungs, and even prove fatal. I’ve heard that many parents of triplets and more put their infants on complete lock-down to protect them during their first flu season. In order to keep their home RSV-free, they keep family and friends alike away until the weather warms up.

We were fortunate to have health insurance that covered Synagis, the RSV shot, our daughters’ first year. Decision-makers in the military health care system deemed that RSV was a high enough risk for our daughters, 7 weeks premature, to cover the monthly thousand-dollar shot. Every month for 7 months, I took our tiny daughters to the one clinic in Central Texas that carried the antibody shot. They learned to start screaming at the sight of Candy, the lovely nurse who innoculated what seemed to be all the multiples in town.

J and M contracted RSV their second winter. They were relatively sturdy at 18 months of age, and didn’t require hospitalization. Still, I was out of work caring for them for nearly a month. I have documented the rest of the girls’ lives in excruciating detail, but I have no photos or blog posts from that time. Even my memories are minimal, just hazy impressions of fear even deeper than I usually felt during the months my husband was at war. The one clear memory I had was of calling my neighbour Heidi over. She was our only neighbour who was neither elderly nor a parent. I asked her to monitor the girls’ breathing so I could take my first shower in a week; J had thrown up on me. I will never be able to repay her for not only giving me peace of mind during those moments alone under the hot water, but also cleaning J’s vomit off the floor. Her husband was also in Iraq at the time.

M and J continued to suffer aftereffects of RSV for another 3 years. Only recently were we able to permanently (we hope) retire their nebulizer and put breathing treatments behind us.

This week, I learned that a coworker’s 3-month-old was on a ventilator because of complications from RSV. The last update I received was that she had been extubated and is tolerating a nasal cannula. She has been weaned off the meds that were keeping her sedated and is now moving and crying. If all goes well, she should be home from the hospital in a couple of weeks.

What can one say to a parent whose child is in the pediatric intensive care unit? The only words of comfort I had were of sympathy. It seemed out of place to tell her that M and J, after 3 long years, had finally overcome the setback of RSV.

Update, 9:36 am CST

My friend emailed to say, “Good news today!  She’s off of both oxygen and pain meds.  They want to watch her today to ensure that she continues to do all right without them.  If so, we get to go home tomorrow!”

Have you dealt with RSV? Do you have words of comfort for my coworker and her husband?

Prematurity Is Never Easy

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M and J were born 7 weeks premature. When we found out we were having twins, my ob/gyn told us, right off the bat, that we could expect them to arrive early. She offered to help us find a new doctor who had privileges at a hospital with a neonatal intensive care unit. My husband and I agreed that we wanted her to care for us during the pregnancy, even if she wouldn’t be the one to perform the delivery if it was early.

We didn’t know the first thing about prematurity. When the doctor said, “privileges at a hospital with a NICU,” we were so naïve that we just looked at her blankly. She had to spell out that a NICU was a neonatal intensive care unit and we should prepare ourselves for an extended hospital stay. This pregnancy was high risk, all the more so because I was 5’0 and weighed 112 lbs. There wasn’t exactly a lot of room for expansion, at least up and down. The prospect of gaining the ideal 60 lbs over 9 months seemed challenging, and turned out not to be a goal I could accomplish.

Still, the pregnancy was so relatively easy on me – not so my husband; my temper was terrible! – that I was sure I could carry the girls to at least 35 weeks. I had no morning sickness, and I was floating on air during the second trimester. Thirty-five weeks was our goal, because twins tend to gestate about two weeks faster than singletons, and therefore 35 weeks for them was as good as 37 weeks for a singleton.

We went through the motions to prepare for preemies. An aunt got the girls preemie-sized outfits at the baby shower the family threw for us, even though I couldn’t attend. (My doctor highly recommended that I not fly to Oregon.) We took our Lamaze class with a group of couples 2 to 3 months farther along in their pregnancies than I was. Despite these steps, we hadn’t prepared emotionally, and I was still deeply attached to the idea of a natural birth. I had made a list for my hospital bag, but hadn’t actually packed, when my water broke at 33 weeks, 1 day.

The actual birth was a haze. J weighed 3 lbs 6 oz, M 3 lbs 9 oz. J had a patent ductus arteriosus (PDA), or a hole in her heart. It’s a common condition in infants, and resolved itself within a couple of months. Neither M nor J needed any help breathing. They didn’t need oxygen treatments. Unlike some of the other preemies in the NICU, they didn’t have any issues with apnea of prematurity, which is essentially what happens when a preemie forgets to breathe.

They were really small, though. They couldn’t regulate their own body temperatures because their baby fat hadn’t come in yet. They had to stay in their warmed isolettes, although they were strong enough that we were allowed to hold them for several hours each day, and keep them warm with our own body heat. When they finally downed 31 mLs (1 oz) of formula and breastmilk in one shot, I cried for joy, because that was one of the criteria the NICU had set up for release from the hospital. Days earlier, my husband had fought for my right to breastfeed, fighting formula and the feeding tube while I was being moved out of the operating room, until a doctor kindly, but firmly, told him that our babies were really, really sick, and all our plans were going to have to wait.

We had the healthiest preemies in the NICU, but still, they were tiny.

In the picture above, J and M (in the matching white onesies) are a day shy of a month old. D, a dear friend’s son, is two weeks old. That’s half their age. He was born on his due date at 40 weeks gestation, compared to M and J’s 33 weeks. His legs are twice the size of theirs. His arms are twice the size of theirs. Each of his hands could almost contain one of theirs. M or J would disappear inside the newborn-sized onesie D is wearing. What you can’t see is how baggy their preemie-sized onesies are on them.

Remember, M and J are twice as old as he is, if you count from their birth age.

I actually learned not to measure their age from their birthday. When I did use their birth age during their first year, I felt like I had to keep explaining why the girls were so small, or why they weren’t holding up their heads better at their age. Not only that, but my poor friend kept having to defend little D when we were together in public. “He’s not fat! He’s not huge! The twins are just really really tiny!”

Once we reached their due date, the day they would have been born full-term, I began to use their corrected age, that is, how old they would have been if they hadn’t spent the last two months of the gestational period outside the womb. It was so much simpler to tell strangers at the grocery store that the girls were a month old, rather than, “They’re three months old, but they were born two months early, and please don’t look at me like that because I’ve never done a drug in my life and maybe if I’d been on bed rest the pregnancy would have lasted longer, but I did the best I could, and I’m really trying to be a good mother.”

Yes, I was extremely touchy about the fact that the girls were born early. I felt like my first act of motherhood had been to betray them by evicting them from my body half-cooked.

Our pediatrician was fantastic. The entire practice has a lot of experience with preemies. In fact, all the twins I knew in our old town went to one of two pediatricians. (Not all twins are premature. My husband’s now 16-year-old triplet cousins were born full term. However, the rate of prematurity is high for twins, over 50 percent.) The doctor focused always on how M and J were doing compared to where they started, rather than looking at averages. When he tracked their growth on the growth chart, he used their corrected age. When it came to timing immunizations and the introduction of solid foods, we followed the guidelines of the American Academy of Pediatrics, again using their corrected age.

M and J are healthy. They only long-term effect of prematurity appears to be the state of their teeth, although we faced some challenges in the early years with their lung development. We’re the lucky ones, though. Others aren’t as fortunate.

Here’s what I would tell my pregnant self if I could:

Don’t be irritated with he doctor when she tells you that you need to quit working. Listen to her when she says that you’re having too many Braxton Hicks contractions, too early. Working part time and telecommuting was a great alternative to working full-time, but you could have afforded to stare at the ceiling for a few weeks to give those precious girls a better start. It might have made a difference. It might not have. You’ll never know.

I will never know what I could have done differently to give J and M another day or two in utero, but I will always wonder.

Sadia’s daughters, J and M, are now thriving in first grade. They’re a head and half shorter than their classmates, thanks to inheriting Sadia’s (lack of) height. A previous version of this post was published on Sadia’ personal blog, Double the Fun, on honour of the Bloggers Unite Prematurity Awareness event 2009 .

NICU rules

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My friend’s wife, Maria, was on bed-rest for the last few months of her twin pregnancy. They live in Cyprus. I’ve been checking in with them on Skype, every other Thursday. It gets down to numbers – be it weeks, days, weight, length, or contractions.

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“30 weeks. Woooo hooooo!”

“So far so good! Maria is doing well. Bored, but fine.” he replied.

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“32 weeks – great news! What’s the latest?”

“Doctor says all is good. We’re aiming for the 22nd of December; 36 weeks.”

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And last Thursday: “34 weeks, how’s it going?”

“We’re scheduled for a C-section in about 3 hours.” They were at the doctor’s clinic, waiting. “The smaller one has plateau’d at 1.7 kilo; the bigger one is 2.4 kilo. The smaller isn’t growing anymore.”

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Friday on the phone with my friend: The little one is doing well. It’s the bigger one though, he cried when he was born, and then suddenly stopped breathing. I was asked to leave the delivery room at that point. They held him upside down. He was blue…I panicked.

I remember the worry that gripped me every time I was asked to leave the NICU. Either Rahul had gone into yet another sleep apnea; for what seemed like a little too long, or they had to set, and then re-set an IV into an already rebellious Leila’s miniscule, 1.2kilo body-weight, hand or foot. The screaming, the suffering you hear from a creature as tiny as she was, through the thickest hospital walls, is heart-wrenching.

My friend and his wife seem to have their emotions under control. I clearly remember that it wasn’t easy to stay level. But I had to, no matter what. I seemed unemotional, distant, “strong”, because otherwise I would break down. That meant I barely spoke to anyone, other than minor, somewhat polite interaction with the medical staff and with my parents and mother-in-law, who had moved to Hong Kong to help me during those 6 weeks, and after. I managed it the best way that I could. That’s it.

I hated my phone more than ever before. I couldn’t stand to see Maher on his. It had to be off in the NICU. And if I wasn’t at the hospital, and it rang – it was one of 3 options: Maher, someone I didn’t really want to go into any detail with, or the NICU. Luckily for us, it was never the last option.

Regardless of the calm my friend has portrayed, I’m contacting him daily, but apprehensively. You never know with this: one day the milk feeds are up, the next day they’ve been stopped because it seems there is a fatal infection brewing in the intestines. One day Twin 1 is moved out of the NICU into the slightly bigger babies room, the next day the baby in the bed next to Twin 2 dies.

One of my initial, harder moments was on a Wednesday afternoon, the third day after the birth. It was the day I left the hospital. I walked out, free after months of bed-rest; but I was leaving my babies behind.

Maria will only see her babies on Sunday, after she is discharged. On Thursday, she gave birth at the clinic, and the babies were rushed off in an ambulance, to an NICU. I realized that what my doctors did, what seemed obvious then, makes much more sense – they put me in an ambulance at the private hospital where I’d spent the last two weeks of my pregnancy, waiting out contractions, so that I could give birth at 31 weeks, at a major, public hospital, that had a state of the art NICU on its 6th floor.  I didn’t see my babies until they were 17 hours old, but they were in boxes, safe, somewhere in the same building.

In the hour after I saw them for the first time, when I saw and heard Rahul cry out – in pain – and I couldn’t do anything, not even just pick him, I realized that I would have to find the deepest of my strengths, love, and compassion to get through this.

She was 2 weeks old when we saw Leila’s face for the first time; Maher and I happened to be next to her incubator when a nurse changed her sunglasses. Both babies had jaundice when they were born, which is quite normal. Leila’s dragged on for a while though. It is treated by phototherapy – a light that shines on the babies – front and back. The babies wear a white mask to protect their eyes. On most babies in this ward, the patches are as big as their faces.

I tried to spend every moment possible with my babies, visiting hours for parents only, were from 9am to 12:30pm, and then from 2pm to 8pm. I spoke to L and R, sang to them – out of tune, and during the week, when Maher was back in Chengdu I played an Mp3 of him singing for them. I caressed them, and when they were stable enough, I clumsily changed their diapers, and even attempted to breastfeed them.

The medical team of this hospital, The Queen Mary, HK, knows what it’s doing. From the moment we arrived – me contracting and making guided decisions in labour, Maher figuring out the administrative details, we knew we were in good hands.

But the NICU staff didn’t always explain a lot to us, nor were they particularly nice. Of course the team is very busy giving life to babies; giving them a second chance. They don’t have time for frantic, lurking parents; at least that’s how we felt at our NICU. They deal with immense fragility scientifically; they attach ventilator’s to tiny babies, insert IV’s, measure and inject milk feeds into a tube that goes straight into the baby’s stomach, and then suck out and measure the undigested material through the same tube, they monitor and record every minute change on a tight, 24-hour schedule. Not easy for any parent to handle. And oh yeah, they let the babies cry.

There was one nurse though, who made the difference. She always smiled. She not only encouraged me to breast-feed, but she also advised me and gave me pamphlets about it. She’s the nurse who organized a parent support group one Sunday afternoon. That meeting opened us up. Her kindness and compassion made my visits a little easier.

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At the NICU in Cyprus, my friends are only allowed to see their babies between 1 and 2 pm, and then again between 5 and 6pm.

A friend of mine had to send her 2 month old baby to an NICU in Chengdu, for pneumonia. No one was allowed in. Full stop.

On the other hand, a friend of mine in the UK would go in to see her baby in the middle of the night be it because she was gripped by anxiety or because she had a strong urge to stay close to her baby.

The NICU rules everywhere seem to differ. What was your NICU experience like? What were the visiting hours? Was the staff pleasant, and helpful towards the parents? Did they encourage breastfeeding? Who was allowed in?

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Natasha lives in Chengdu, China with her husband Maher. She is mum of  twins Leila and Rahul, and was an Ashtanga Yoga teacher until her little yogis became the teachers. You can find more of her thoughts and stories at Our Little Yogis.

 

Medium and Happy

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(Leila and Rahul are turning 2 in a few days. They are doing very well, happy and healthy, other than a cold they have been fighting for the last week.  I would like to share something I wrote when they turned one-and-a-half.)

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Rahul and Leila have come a long way since their birth at 31 weeks gestation. At 18 months they have caught up with other children their age physically, emotionally and developmentally.

Leila recently jumped from the 5th to the 10th percentile in weight, and Rahul is steady at the 10th.  In height they are both at the 50th percentile. All in all, according to the charts (which might be slightly different that the US standard ones?), they are light weight children of average height. Not that it means much anymore. Last month I met a five month old baby who weighed as much as Leila. At their NICU there was a baby born at 24 weeks, much tinier than them. Now however, when I see them play amongst toddlers their own age, they merge right in, size-wise as well as ability-wise.

Since they were born a couple of months early it was normal, even necessary to closely monitor their weight gain. Thankfully we have had no serious problems since they left the NICU. They are both running, playing, and talking a lot. They are full of energy.

It’s time for me to let go of the obsessive monitoring. They need a break from being scrutinized and compared. They inevitably get a lot of it just for being twins. They don’t need any more, and especially not from me. In the big picture a little delay here or there is not a big deal. I have noticed that they are eating a little more than before, sleeping a little bit better, and enjoying each other.

I have found that comparing healthy babies growth and development is useless, and even silly. We all do it though. It’s natural. Parents often compare how soon their babies sit up, crawl, start sprouting teeth, walk, and talk in relation to others. Discussing these things with other mums and dads is important, especially for first time parents. It is necessary to follow-up on certain milestone achievements. If a real problem is caught soon enough it could be addressed more effectively.

There is a wide range of normal. I can see that just by having two babies. Leila crawled by 7 months, Rahul started after 9. They both had issues with digestion in the NICU. They digest differently. R has a strong reflux, Leila a poor appetite. Now L eats all the time and R eats only when he can feed himself! They both got their first teeth around the same time. According to Dr. Sear’s “The Baby Book”, when teeth come out is a genetic trait. Speech seems to be a big “issue”, and especially when there is more than one language spoken. We have 3 languages around us, and so far they are both saying words in all.

My brother didn’t speak until he was 2. My grandmother forced my parents to see doctors about this. Neither did he eat. What a catastrophe. My parents were easy-going enough to let him be. When he was ready he spoke and when he was hungry he ate. Now he talks a lot, and eats a lot. He is a professional sportsman, and a big guy. My brother-in-law spoke “late”, but apparently when he did it was in full grammatically correct sentences!

When asked, I usually responded to questions about my children’s age, weight, birth order etc. And then I asked similar questions back. Sometimes I even initiated such dialogues. I knew it was silly, but I needed to hear that Leila and Rahul are smaller than others to validate their experience of early birth, as well as mine being their primary care-giver. It has not been easy with their tiny milk feeds. After birth they wouldn’t drink more than 1 to 3 ml of milk at a time. By 1 year R could take 120ml. But because of his reflux he had to stop and burp every 30 ml. Each feed was drink, burp, drink, burp…  Leila woke up every 2 to 3 hours to drink at night, and still does. Most babies around us sleep through the night and eat comfortably. I couldn’t help comparing.

I was listening to a studio talk by Richard Freeman, an inspiring senior Ashtanga teacher the other day. I am paraphrasing what I understood from it. He said as soon as we realise that our Asana posture is medium, that it could look better, and it could also look worse, there is a release. The pressure dissolves and the breathing starts. It is no longer about having the perfect posture. It is more intrinsic and personal. That’s when the suffering stops and the practice can deepen.

The same goes for size. As soon as we can acknowledge that we are medium, that we could be taller or shorter, fatter or thinner, there is a release. We can move on and think about other things. I once told a close friend that her son was tall. “No” she responded, “he is average height.” Her honesty struck me.

Rahul and Leila are changing all the time, as I am. When I am around them I want to be actually present. I want to encourage them to have fun, and to laugh. They have enough time to follow curriculae and perform in the future. We can all stack 4 blocks and order rings according to size. It makes no difference to me if they can do it now, or in a few months. They are full of love and energy and that is what really matters. I want them to be Medium and Happy.

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Natasha lives in Chengdu, China with her husband Maher. She is mum of  twins Leila and Rahul, and was an Ashtanga Yoga teacher until her little yogis became the teachers. You can find more of her thoughts and stories at Our Little Yogis.

 

Preemie Medical Issues: Lung Function, and also Bad Teeth

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Our daughters, J and M, were born prematurely at 33 weeks gestation. Preemies make up 54% of twin births, compared to 9.6% of singleton births, according to statistics gathered in the 1980s. In my experience, conversations with parents or grandparents of multiples eventually turn towards the issue of prematurity, either its reality and the shared bond of the NICU experience, or how lucky some families are to bypass that rite of passage.

Our family’s experience with prematurity was a lot less scary than it could have been, although it felt devastating at the time. Neither of our girls needed help breathing, but they weighed under 7lb (3.2 kg) put together. Their Apgar scores were excellent, but they didn’t have the body fat they needed to maintain their own body temperatures ex-utero. They were released from the hospital over a month before their due date.

Looking at our vibrant, sassy, smart and downright hilarious five-year-olds, no one who isn’t in the know about twin birth statistics would guess that their birth held any unusual struggle. They’re short for their age, but so am I. My 5 ft 0 in (1.5 m) genes appear to have beaten out those of the girls’ 6 ft 7 in (2.0 m) great uncle. M and J have had only two lasting effects from being born before they were quite ready: a susceptibility to lung infections, and teeth missing enamel.

The lung infection issue came as no surprise. Our pediatrician and the NICU staff had warned us that lung complications were common in babies who began to breath when their lungs were still forming. Our insurance covered Synagis, the vaccine against RSV, a virus that gives you and me the sniffles, but can be fatal to a premature infant. I made the monthly trek to the one local clinic that dispensed the vaccines for the entire seven months of our girls’ first cold season. Their second winter, our insurance company deemed them out of danger. Sure enough, first J and then M came down with RSV. It was another three years before we were able to celebrate the retirement of the nebulizer that J used to ease the laboured breathing that kicked up without warning year-round.

The tooth issue, on the other hand, came as a huge surprise.

I thought we were doing everything right in the dental care department. We started using infant finger toothbrushes to massage the babies’ gums well before they had teeth. We added toothpaste when their first teeth broke through, and brushed morning and night, without fail. We brushed their teeth for them until they turned five, and gave them toothbrushes that they could practice with. Before M and J turned two, we introduced flossing, the the form of one-time-use kids’ flossers. To this day they consider going to bed without flossing unthinkable. Our pediatrician praised the girls for their dental hygiene. Even though I knew full-well that dentists recommended a first visit be scheduled at the sight of the first tooth, I put it off until the girls were three.

At their first visit, the dentist discovered cavities in both girls’ mouths. It turned out that both J and M suffered from enamel hypoplasia, or a lack of enamel on a number of their teeth. As luck, or more likely genes, would have it, our monozygotic daughters had hyplasia on the same teeth. Their cavities were were also coordinated. Identical twins, with identical tooth issues, I suppose.

We left the dentists’ office with fillings, prescription fluoride toothpaste, and another reminder that however far away their premature birth feels, it keeps popping back up. At our next visit to the pediatrician, I told him the sad tale of the girls’ teeth, and he promised to pass along to the next preemie parents he saw the recommendation to get to a dentist soon. And now, I pass that recommendation to you.

Full Circle – with my Heart and Hands Full

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I’ve come full circle, back in Koh Samui, at Samahita Yoga Thailand (SYT) two and a half years after my last serious training here. This time I’m here with my husband M, and my 21 month old boy/girl twins Rahul and Leila.

Right after my advanced teacher training course at SYT in 2009, I spent three months in my grandfather’s home city in India. It was there, in the peak of the summer, that after a round of IVF I got pregnant. There was the usual pregnancy stuff – fatigue, dizziness, and some vomiting. Overall, ok though. I had a long nap on my yoga mat every afternoon! Before the end of the first trimester, I insisted on returning to Chengdu, my current home city.

At 16 weeks things became more complicated. I had a major bleed, and spent the next four months in bed. The first month was spent in two Chengdu hospitals. I needed help. My mum flew in and without warning was roped into spending the next 9 months with me. Yoga helped too. The breath work calmed me through many sleepless nights.

At 26 weeks, upon the advice of doctors we flew to HK. The medical facilities there are outstanding.

From the 29th week on, I was in hospital again, being pumped with medication to keep the contractions down.

Then on a Sunday, at 31 weeks exactly, L and R seriously wanted out. I was transferred to another hospital, one with an NICU. They were born in an emergency natural delivery at The Queen Mary Hospital. R spent 3 weeks in the NICU, L spent 6.

As expected, life during the NICU phase was rather stressful, filled with fear, anxiety, and isolation. Thankfully M was there for the delivery and spent the first 2 weeks after the birth. He then managed to return to HK every weekend for the next five months.

Only after both the babies were safely home, and upon M’s ceaseless insistence, did I get a yoga practice in once in a while. Mostly it meant a few minutes of feeling out my body, and then a half an hour nap on the mat. It has gradually changed as the weight dropped, and the flexibility, strength, and focus have come back. This me-time was only possible thanks to my mum and MIL who were with me.

We returned to Chengdu when L and R were 5 months old. The four of us were together for the first time. We were happy, but of course there was some anxiety as for most new mums, and a feeling of isolation.

It’s around this period of time that I began surfing the net while feeding in the middle of the night. I found this site, HDYDI and other personal blogs where MoT’s told their funny stories, their touching stories, their “How to deal with…” stories, I could finally relate. I wasn’t the only one exhausted, stressed about premature babies, their weight-gain and illnesses.

There were undertones of stress in my system for a long time. It was only when L and R were 14 months old that I consciously made the effort to ease up. I couldn’t do it all, couldn’t be perfect and shouldn’t need to be. One insight from a MoT stuck with me. With two, she quickly let go of the expectation for perfection.

I also had to let go of expectations: that I would be able to give equal amounts of attention to each child at all times, that I would always be calm and level-headed, that I would have breast – fed directly and not pumped all the milk into bottles, that I would have lost more weight by now, that I would be practicing and teaching yoga by now, that I would be going out with friends more…and on and on.

A good friend of mine often brought up the fact that I wasn’t doing anything for myself. After some reflection, I realised that I wouldn’t pressure myself, but certainly needed some outlets. Another friend of mine, mother of 4, and ex Chengdu International Women’s Club playgroup coordinator once told me, “if it’s not sleep issues, it’s going to be something else. You just got to make time for yourself somehow.”

Her words rang true. So to start with, I filled her position as playgroup coordinator when she left Chengdu, a small task, but a big step for me. It was my first connection with adults in a long time. Soon after, I started a blog. I have always been a private person, so it’s a big deal. Some nights I write in the middle of the night. But it’s my thing and I enjoy it. It’s my way of organising and expressing my thoughts; and then letting go of them.

I am signed up for an On-line Features writing course. I have always romanticised writing, and until now, didn’t have the confidence to do any of my own. I’m not planning to become a writer, but I am thoroughly enjoying the class.

In the mean time, yoga has gradually seeped back into my life. Being back in Koh Samui at SYT practicing daily, trusting my body’s abilities again, makes teaching in the near future seem realistic. M takes care of L and R while I breathe and move at my own pace from 8-10am every morning.
I have let go of many expectations of myself, but feel more motivated than ever to do the little things that make me happy and feel fulfilled. Being here with M, R and L is certainly one of them.

So as MoM’s with never enough time in a day, what do you do for YOU?  Did you have to “let go” of expectations you put on yourself?

These are some related posts and a challenge, that stuck in my mind:

Taking Control (www.goddessinprogress.blog.com)

It’s the simple things (www.seanasmith.com)

52 weeks of ME! Challenge (www.dolli-mama.blogspot.com)

Intraventricular hemorrhage (IVH)

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For today, I copied a recent post from my blog.  I apologize in advance since I know that for some of you it will be a repeat, but it is a story that I wanted to share with all of our readers.

There really are just a plethora of frightening things that you discover when you are pregnant with multiples, especially higher order multiples such as triplets.  Premature delivery is inevitable with triplets since very few women are able to carry past 32 weeks (the average), so you know from the very beginning that you can expect NICU time for your babies.  There are a lucky few who are able to carry their babies long enough to bring them home when they are discharged, but the overwhelming majority of women have to leave their babies behind in the NICU for at least a week or two.  When I was pregnant with my triplets and reaching out to find people who had been through what I was going through, I found a lot of stories that terrified me.  So I searched for the ones that defied the odds and had unexpected outcomes.  And I held onto those stories because they gave me hope.

Here is our story…

August 13, 2008

cameron had her weekly physical therapy appointment this morning and jane (her p/t) was absolutely thrilled to see her walking. she kept watching her with a mix of awe and wonder and was so pleased with her rapid progress over the past few weeks. she was just here on friday, we missed our regular monday appointment so she came specifically to see cameron standing for the 1st time; and now, less than a week later, jane was able to see cameron take her 1st steps. i am beyond happy to tell you that jane was also thrilled (and a bit surprised) to see absolutely no asymmetry. none whatsoever. no tightness, no spasms, nothing. cameron was using both sides of her body equally and there didn’t seem to be any of the issues present that her p/t (secretly) feared might appear as she began walking and utilizing more of her body and gaining strength. but, she was walking with perfect symmetry.

why, you ask, is that such a big deal?

allow me to explain…

i don’t talk about this often because we prefer to focus on the positives of our story and relish the amazing miracles our little preemies are. but, it isn’t a secret that the peaches had a pretty rough start to their lives; being born almost 11 weeks early they were so tiny, so frail and so sick. what you may not know, is that cameron, in particular, had it incredibly rough for the first couple of weeks. i wasn’t even able to hold her until she was almost 2 weeks old. we were not sure if she was going to live long enough to come home with us, much less grow to celebrate her 1st birthday. or learn to do the eensy weensy spider. or eat. or breastfeed. or be able to sign all done. or giggle. or play. or walk.

she had a pretty severe brain bleed that was detected shortly after birth. her dr’s are almost positive it occurred while she was in utero and is a result of the stress the twin-to-twin transfusion was placing on her little body. the decelerations and lack of veritability in her heart-rate are the reasons the dr’s decided to deliver the peaches. based on the severity of her brain bleed i know that cameron would not have survived much longer in my womb and it is all part of why i am actually thankful that the peaches were delivered so early. brain bleeds are graded on a scale from I to IV, with IV being the worst. she had a bi-lateral grade II, with several areas of a grade IV. the bleed was so severe, that when the dr. read the scan, he looked up at john and told him that her brain bleed was probably not compatible with life. and if by some chance it did happen to be compatible with life, it would probably not be compatible with any kind of quality life.

cameron proved the dr’s wrong and continued to live. and as she was healing and growing, we were told often that she would have issues with all sorts of things. we were told that it was highly likely that she would develop cerebral palsy. we were told to expect moderate to severe developmental delays; in all areas. we were told it would be a long while before she was ready to come home. but, of course, cameron kept thriving and she was able to come home with us only 3 days after james and 4 days before ella. since her follow up brain scans showed that her bleed was resolving on its own, when she was released there was no need to see a neurologist. everything was left to just “wait and see.”

we had no idea what to expect from cameron, but we knew she was determined and we knew she was strong, so we decided to focus on the positives. it was an unspoken agreement, but neither john nor i have ever given cameron any reason to think she is different. we expect the same things from her that we expect from james and ella. and honestly, the only special treatment cameron gets is from her physical therapist. (and believe me, i tried to enroll the other 2 peaches in p/t along with her.) however, i know that despite the brave face, secretly both john and i have been holding our breath. scared to see what the residual effects of cameron’s brain bleed are. just waiting to see what would happen.

we are not naive. we know that we still have a long road ahead of us before she is completely out of the woods in terms of risk. and we know that there is still the chance that she could have delays and issues that come up as she gets older.

but we are okay with that.

we were told that cameron may not live. and if she were to live, her life would not have any kind of quality.

and yet, here she is today…absolutely perfect. eating almost anything and loving it all. giving tons and tons of kisses. waving hello and goodbye. signing and smiling. laughing and playing. jumping and dancing. talking and singing. quacking and oinking. standing and walking.

and now? even though i have been grateful and thankful and in awe of her all along, i am not scared anymore. and i am not holding my breath. instead, i am ready to celebrate.

i am ready to celebrate for cameron. i am ready to celebrate with cameron. i am just ready to celebrate such a miraculous little life.

cameron grace, you are one in a million baby girl. one in a million. and we couldn’t be prouder.

(and as your aunt jordie just texted me upon hearing the news…go roomba on kicking a@% in life.)