November is Prematurity Awareness Month

World Prematurity Day November 17

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

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

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Last week at How Do You Do It? a brave bunch of Mum’s of Multiples (MoM’s) shared their stories of premature babies. There are birth stories, NICU stories, stories dealing with pain, and loss.

Please drop by and join the campaign to spread the awareness for prematurity. I have two posts up, the first is my emergency delivery story at 31 weeks gestation in Hong Kong, and the second post is a compilation of SMS’s I sent to Maher, Houda (my mother in law), and my parents from the NICU, updating them on the babies progress.

This is one that Maher wrote as part of a series: Parenting and Practicing Yoga. Against All Odds focussed on the period when our babies were in the NICU.

Thanks for dropping by.

 

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Rahul, Day 3

Rahul, Day 4

Rahul, Day 4

Rahul, 2 weeks

Rahul, 2 weeks

Leila, One month

Leila, 4 weeks

Leila, 5 weeks

Leila, 5 weeks

 

 

 

 

 

 

 

 

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Parenting and Practicing Yoga: Against all Odds by Maher Kassar

Maher lives in Chengdu with his wife Natasha, and children Leila and Rahul. An amateur runner and yoga practitioner; he openly admits the difficulty of balancing his activities with work and raising children.

Against all Odds

Hong Kong 2009. These were stressful yet exciting times. Times where everything was possible, yet everything was impossible. Times where we hoped for life, but feared death. Times where the most skeptical became believers. And I, among them, turned to my own invented superstitions.

It was during my 40 minute runs at the Happy Valley Race Course that I started singing my reggae hymn to Rahul and Leila. I would repeat it in my head over and over like a mantra. It was my own prayer to whomever.

First, I prayed for them to hang on as long as possible with their mother, inside her belly. Then, when they were in the Neonatal ICU, I prayed for them to start breathing on their own, to start eating, and digesting on their own. To put on weight and be strong enough to get out. I prayed for Leila’s test result to show no sign of intestinal necrotizing, and for Rahul’s apnea to stop.

I always carried 2 dollar coins with me. I would stop by the Frangipani trees inside the racecourse, kiss the coins and throw them at the feet of the two trees I thought were the frailest and neediest looking. And I would repeat my prayers.

Often, I would look up, and between the glowing skyscrapers try to spot the majestic kite eagles that fly the skies of Hong Kong. If I spotted two at a time, our day would go well.

It was then, in apartment 20F of the V-Residencies, Causeway Bay that against all odds, it happened. I didn’t expect it, and didn’t even expect to try it. It was awkward and ugly. But it was there undoubtedly: my first padmasana. In my eyes it was like a rare sporting moment when the ultimate underdog becomes the champion. Me, the stiff runner, from a notoriously stiff family; I suddenly found myself in the lotus pose.

Everything else happened as well. Rahul came out, and then Leila came out. The New Year came and all our relatives flew to Hong Kong. We celebrated with the twins at home. When they grew stronger, we returned to Chengdu. Slowly, normal life returned and the feel and memory of these strange times vanished.

I sometimes miss that edginess; the feeling of improbable yet realized hopes.

I remember the coffee in a jam jar and the triple layer peanut butter sandwich I prepared every Friday evening and kept in the fridge. Early the next morning, I would drink the ice-cold coffee in the car to the airport. I would board the 7:10 China Airways flight from Chengdu to Hong Kong. Up in the air, I would savor my sandwich. From Hong Kong airport it was straight to the NICU. Wash hands, facemask on, and I could finally see Rahul and Leila.


Prematurity and School

Also posted at How Do You Do It? at this link.

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 and not 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 when they start school, but we didn’t have to have it at that time. I have the luxury of being a SAHM (Stay At Home Mum), 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 opinions 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?

NICU (Neonatal Intensive Care Unit)

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?