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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Stories in Drawings

image Leila’s interpretation: Mama is carrying Rahul and I am jealous. Papa is next to me and there is a heart in the middle. (Did you see I drew a heart!?) Roman is a baby, and Mina is also a baby.

Flat Thai Tyre

After a few hours playing, grocery shopping, and eating at the Tesco Lotus on a holiday morning,we walked out into the afternoon heat – Rahul in the trolley, Leila upset because she had to walk; both, more than ready to get into their air conditioned car-seats and nap.

I can’t remember if it’s a flat tire or a flat tyre.

“A flat tyre (American English: flat tire) is a deflated pneumatic tire, which can cause the rim of the wheel to ride on the tire tread or the ground potentially resulting in loss of control of the vehicle or irreparable damage to the tire. The most common cause of a flat tire is puncturing of the tire by a sharp object, such as a nail, letting air escape. Depending on the size of the puncture, the tire may deflate slowly or rapidly.”

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Luckily, there was a “tyre fixing” place 20m away, just across the ring road. A man standing close to the workshop immediately crossed the road with us, back into the Tesco parking lot, assessed the situation. He returned a few minutes later, filled up the flat tyre with enough air to get us across.

And indeed, he showed us the hole.

Dreams

Leila just waking up: Mama. In my dream I had up slippers (high heels). And they were lighting up every time I walk.

How time till I can have real up slippers?

Waaaa Waaaaa, I want up slippers.

Me: Well, don’t you complain about your neck hurting, and your legs hurting?

She nods.

Me: High heels would only make it worse. (We go through the high heels discussion many times a week.)

Rahul wakes up.

Leila: In Rahul’s dream he had a ball.

Rahul: No I didn’t have a ball.

Leila: Yes he had a ball.

Me: You mean in your dream Leila, Rahul had a ball?

Leila: In my dream I had up slippers and Rahul had a ball.

This morning –

Leila waking up: In my dream
I was eating a cake. And then I see’d teta (grandma in Arabic) maked a chocolate cake. With insects on it.

Me: Oh really, was it yummy?

Rahul: I like chocolate.

Leila: Nooo, it wasn’t yummy.

Related: Cinderella Shoe Trend: DSW, Louboutin Take on Princess Heels

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“Can I have a up slippers and a dress like this little girl?”

For Just Being There

In July last year, Maher bought me an iPhone for our anniversary. My frist ever Smartphone. Of course, I didn’t even open it for a few months. Now I’m hooked.

And then my brother introduced me to WhatsApp while complaining about how people don’t just pick up the phone and call for a few minutes. Instead they chat on this thing for hours on end.

Then last month one of my friends suggested I get it. So here I am now, chatting with my friends around the world, anytime of day or night – and yes, sometimes it’s more of a monologue than dialogue. But they understand, they know I’ve lived on the moon for the last ten years.

I was chatting with some of my friends while my kids were in hospital last week. Sending emails too.

A couple of weeks into the NICU experience in Nov and Dec of 2009, one of the nurses organised a Parent Support Group. After some hesitation, it being our first “support group” and all, Maher and I went. We were only two couples in the English speaking section, and the woman leading the group showed us a day-by-day photo album of her twin boys born there, at 26 weeks gestation. Actually, one of her 6-year-old sons was taking us through the pics himself. His mum openly discussed the challenges her family faced at the NICU and over the following years. Of course, she encouraged us to talk. What struck me was that the other couple had shared their baby’s photos on Facebook. Their naked baby with a ventilator, feeding tubes, bandages, IV’s, the works.

They found love, support, and strength through their network of family and friends.

I, however, was unable to call my own brothers. I almost dialed my closest childhood friend’s number a few times. Even did once, a few days after Rahul was already home. Chatted for a few minutes.

A couple of friends of mine dropped everything that was going on for them in Chengdu and came to see me in HK. I barely even spoke to the one who stayed two weeks. She got to know my mum amd mother-in-law a bit better though.

That’s the way I used to deal with things, and during the NICU time and later, this reflex kicked in more strongly than ever before. I felt that no one could help anyway, and isolating myself was the most efficient way to deal with what was in front of me. It made sense at the time because only parents were allowed into the NICU, and I wanted to savor every moment I had alone with my babies. I was too fragile to handle criticism and questions, stress from others, and least of all pity. And there was no way I would break down. Not then.

But then a few months later, both babies out of the NICU, and home in Chengdu, I relaxed. I started to comment on blogs. (Big step!) Then I started my own. I got a VPN in China, to access Facebook again, right after Zambia won the Africa cup. I couldn’t join the celebrations, not even over FB. That was too much for me to handle!

I tried to create a network of my mum friends via Multicultural Mothering.

When one of my friend’s twins were in the NICU a year ago, I felt the need to be present. He had no problem communicating with me, explaining, and even listening to me. I was impressed. And now while my kids were in the hospital last week that same friend along with others all listened, and shared their own experiences. It made everything more bearable. Others read my endless WhatsApp monologues.

Thanks for the support over the last couple of weeks, for the brainstorming sessions, the connection. For just being there.

When I saw this talk for the first time a couple of years ago, it was perfectly timed then. I immediately forwarded it to an exhaustive list of friends. A few days ago my cousin shared it with me again. It was just what I needed to hear. Again. For my friends – old and new.

Brene Brown on Vulnerability

Playing at the Bangkok Samui Hospital

There is much stress and trauma with having a needle injected into a little arm. The nurse in the emergency room here did it well though, there weren’t the usual repeat tries either because of their squirming, fighting, little veins, or just mistakes.

Soon after L and R were born they had IV lines stuck in them, in their hands, and then over the weeks, they sometimes had them in their feet. They were tiny babies, 1.25 Kg and 1.65 Kg. I have no idea how the doctors managed such a feat.

Since she was at the NICU tiny Leila fought the nurses. She kicked, and flailed her arms around. She tried to pull out the feeding tube that was in her mouth, and went though to her stomach.

And this was her here: I don’t want to be locked mum. It’s not fair. I want to be free.

The sense of helplessness in such places and situations is a weight on me.

And then it’s the clogged lines that hurt like hell, that has Rahul screaming. When the flow isn’t smooth, injecting medication into the line leaves him sweating, shaking, and shrieking.

All day long, the moment the door creaks, they both shudder, and the questions start, through the tears.

“What is she going to do now?”
“What does she want?”
“I don’t want any medicine…”
“Why is she here?”
“Mama, papa, mama, papa….”

No pauses between words or sentences.

Then I asked for as many oral options as possible. We all relaxed a bit. Day two the nurses stayed away and out of the room unless necessary. Again the stress eased a lot. The IV’s came out.

We started talking to the nurses and doctors out of the kids ear shot, when possible. They never hear the second half of phrases like “blood test results,” or “injection into the IV line,” they relive their experiences and protest wholeheartedly.

“Only do that to Leila, mama? Not for me? I don’t have to do that?” And next time it’s “Mama, I don’t need to do that? Only Rahul?”

So they are both screaming and crying living and reliving each others experiences.

Today is day three, the fever has finally eased up. Leila held Rahul’s hand through his ultrasound, kissed him when he was scared.

Swor

We played in the hospital garden, the knight and the princess liberated the bridge with their swords.

Home tonight!

Today at the Bangkok Samui

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Today at the Bangkok Samui

The emergency room doctor last night wanted to rule out appendicitis – seriously there are some crazy twin stories out there, this one would have been too much for me.

Not sure if we can get out today, the paediatrician can’t pinpoint the issue, and it was quite the painful bacterial, gastro issue.

Leila and Rahul made sure that we’d be staying with them all night. At least twenty times. In the same room. And right before falling asleep L asked me why we left them
In the hospital every night when they were babies. Why didn’t I stay with them? She was sad that we left. And why did the doctors and nurses in HK not allow us to stay with them. It’s not fair.

I sang them the Brassens song that Maher and I used to sing them every day when we were in HK. They finally drifted off after an exhausting day.

I remembered a woman I met in HK the two other times that Leila was admitted into hospital, L was around one then. She was an older British woman who took care of Chinese orphan girls, brought them to a state of adoptability. She would care for them and take them through surgeries. Strangely enough I met her twice at two different hospitals. The first time her little girl, Grace was having major surgery of her bowels. The second time I thought she was there still with Grace, but it was another girl, another story. The one thing she said to me that I remember is how quickly children snap out of such situations. They don’t mope and feel sorry for themselves.

There is a lot of compassion.

This morning, Rahul wondered why Maher went to get us some breakfast alone. “But he’ll miss you mama.”

And then later he said to Leila, “Let’s do bicycle with our feet. I am
Just touching you because I love you.”

Leila’s Paw and Rahul’s Boxing Glove

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Leila's Paw and Rahul's Boxing Glove

After a blood test that showed very high WBC’s at the Bangkok Samui Hospital, an IV line was in ready, for a night of antibiotics. Rahul spent hours in pain and then hours trying to find an escape when he heard the dreaded “blood test”. This morning he has been convincing Maher to just walk out of the hospital.