Day One: Diagnosis

I remember the day before as being an exceptionally good one. It was New Year's Day 2014 and we'd spent the day with our family on both sides. Me, about 22 weeks along, stuffed into a new red dress that hugged the baby belly and left the front just a little too short. I was very happy and very proud to be bearing the first grandchild on both sides. We took a photo that day, Ivan, Blue & I with the sea monkey swimming under that red dress. Full of joy and anticipation for the year ahead, I captioned it "My Family".

Little did I know that, in the next few days of grief and uncertainty after the diagnosis, that photo would be a painful reminder of all the hopes and dreams that were dashed in a darkened ultrasound room.

We'd just been back from a family vacation in Tokyo, and my 20th week detailed scan had been postponed because of it. I'd gone for the routine ultrasound on my own at Parkway East Hospital the friday before the new year weekend.

"There we go, you can see the arms and hands.. That's the head, and the torso. Did you already know the sex?" The technician asked. I smiled and answered that I already knew I was having a little girl. "Yeah! So many girls today, you're the fourth one since this morning," she said, squeezing more warm gel on my belly. "Now we'll go look at her organs and heart."

I should have known then that something was not right when the young, chatty technician fell silent some time later as she continued the scan. But I was tired and the blurry shadows on the screen meant nothing to me. Finally, she pronounced that the scan was done and said I could go. "The doctor has to see the images, but she is on leave today. We might have to call you back again next week for another scan." "Why?" I asked. "Oh, the pictures weren't very clear today, and we might need to scan again, don't worry." There was something nervous about her smile when she said that, and I should have known.

Deep down I think I did, but I pushed aside those thoughts and reassured Ivan and my family that all was well and they just needed more pictures on Tuesday because Pipi was not cooperating.

Tuesday rolled around and I went back to the hospital where the same technician started the scan again, this time with an older female doctor studying the screen behind her. "There, you can see the four chamber heart," said the technician. "But it looks very strange." The next 20 minutes, I heard words and acronyms I'd never heard before being bandied around that dark room. I don't remember what I was thinking then, I just remember feeling very numb and my brain wasn't processing anything. Finally the doctor turned to me and said "There's something wrong with baby's heart."

My mind was an awful awful blank, and I didn't feel any emotion, but some part of my soul must have heard the doctor because I could feel hot tears slipping down my cheeks.

"It looks to be a very complex heart defect," the doctor barreled on. "We can't see properly here, we're going to have to send you to do a more detailed echo." I left the room in a daze and must have looked a wreck because as I stepped out the door into the waiting room, I could feel the stares of the other patients. The technician pointed me to the restroom. "I'm so sorry I couldn't tell you the other day, I had to wait for a doctor to confirm,"she said, looking so apologetic.

I called Ivan from the toilet. He was at work, and when he picked up, I told him between hacking sobs that they said there was something wrong with the baby's heart. I have never, ever, heard him sound more serious than in that phone call. "Stay there. I'm coming right now."

We were given an immediate appointment that afternoon at Mount Elizabeth to see a renowned pediatric cardiologist. The echocardiogram took over an hour, the doctor intermittently frowning as he peered at the screen and made notes, while Ivan stood over me, still as a statue, staring at the outlines the baby made as she wriggled. I don't know what he could see, and it took so long, I fell asleep, emotionally drained.

Later, Dr Wong, an older, wizened looking man, sketched a rudimentary heart on a piece of paper as he explained that there were four things wrong with the baby's heart.

One, she had a Ventricular Septal Defect, a very large hole between the lower two chambers of her heart.

Two, Pulmonary Stenosis meant that the artery bringing blood to her lungs was smaller than it was supposed to be.

Three, the two main arteries bringing blood in and out of the heart to the lungs and the body were switched around. Transposition of the Great Arteries meant that deoxygenated blood wouldn't go into the lungs to receive oxygen, and instead, would be shunted back to the body again, carrying blue blood. "She might be born a blue baby," he said.

"Might?"

"Yes, you see, even though with the VSD and stenosis, her TGA is considered complex, but in some ways, she is lucky because that hole in her heart is going to allow the blue and red blood to mix in the chambers and go back out to her body."

"Okay.. and what's the fourth defect?"

"Alone, this defect wouldn't have affected her at all. She has what's known as dextrocardia situs inversus. Her heart, as well as the rest of her organs, are flipped around, like a mirror image."

The novelty of having a Grey's Anatomy baby was lost on me then as Dr Wong went on to tell us that children born with such heart defects don't usually live very long, and in her case, the corrective action would likely be a series of very risky, very expensive open heart surgeries, spread out over a lifetime. "You'll have to consider your options carefully," he said. "You can also choose if you want to terminate the pregnancy now."

Terminate. Three syllables that punctuated what would rank up there as one of the worst days of my life. I say 'one of the worst' because the next few days that followed the diagnosis were nightmares as well, as I grappled with decisions right out of a Jodi Picoult novel. Should we terminate the pregnancy (nobody said 'abort the baby' because I guess one sounded more heinous than the other), or should we subject her to a lifetime of traumatic surgeries?

Or could we have her, and bring her home on 'comfort measures' and then let God decide when he wanted my precious baby back?

Challenge accepted

There are a lot of festivals in February. Here, we celebrate Chinese New Year, four glorious days of public holidays dedicated to feasting, celebrating family and when I was younger, ang bao collecting. Then there's Valentine's Day, an occasion I never cared much for, what with its overpriced roses and cheesy hearts. But this year, I realized that in the 'heart world' (or so I've heard it called, since I was unceremoniously incepted into it), February is the month about, well, all things heart-related. February is CHD Awareness Month, with Feb 14 being often touted as CHD Awareness Day.

One of the things I wanted to do when I restarted blogging again was to tell Johanna's story, but it's a long, complicated one, and I didn't know how. I came across this photo-a-day challenge from The Corbin Story on my Instagram feed the other day and there it was, a way for me to gather my thoughts and put them down in a way that made sense.. and perhaps, do a little good as well. 

The challenge starts the day after tomorrow and I'll be following each Instagram photo with a blog post here. I hope I have the determination--and time during Johanna's naps!--to finish each post. Here goes nothing! 

you and me, baby

How is it even possible that I feel even busier now than I did with a full time job?

It's been three weeks since starting part time work in church but in all that time I've maybe only spent three full days home with Nana. Discounting the week that I was away in HCMC, I feel like I've been running around from one appointment to the next, what with the medical appointments at NUH and KKH, key collection at HDB and meetings with the contractor, church meetings and events.

A lot of things have been unknowingly chipping away at me recently. A careless comment fringed in good intentions here, a trivial incident there--light as snowflakes coming to rest on a roof, harmless. Things I brushed off as easily as they fell on my shoulders, but over time, I realize that I haven't felt whole in while. It's all building up, the weight of unspoken expectations, well meaning advice and the feeling that I don't quite measure up..  not being around enough as a mom, not doing enough for my husband as a wife, not chipping in enough as a daughter/daughter-in-law, not serving enough in church, not doing enough work to justify my job. And I think, which will be the snowflake that will finally break me?

Yesterday I spent the rare day home with Johanna when the MIL went out to run errands, and I found out something new about my daughter. I mean, it's not like I didn't know she loves her grandma who's her primary caregiver, but I didn't realize just how clingy she was to her! We got out of bed and sent daddy off to work, and the baby was all bubbly and happy. As nai nai waved goodbye and closed the door behind her though, it was like a storm broke. Immediately, her face crumpled and she held her breath (and I held mine in knowing anticipation), and let out an ear piercing shriek. She then proceeded to continue said ear piercing shriek for the next half an hour, with nothing I could do to calm her down, short of running after her grandmother and begging her to take the baby back.

Desperate, I strapped on the baby hipseat and whisked Nana downstairs for a walk, hoping the waking neighborhood and passing cars might be distraction enough to break her out of her tantrum. It worked. And there we were walking aimlessly under the void deck, she in her pink PJs, red-rimmed eyes and sweaty head; me in my sleeping shorts and FBT singlet and bed head (pixies do not do well just out of bed), feeling all auntie-like. We settled on a dirty, cigarette-stained chair and watched as our neighbors passed by, going on with their daily lives, and I pointed out the way the sun shone through the trees, the cars and buses trundling by, the black cat with the scruffy ears that roamed the void deck. The morning chill still lingered in the air and the breeze ruffled Johanna's baby hair, tickling my nose, and for the first time in a long time I felt at peace and filled with a renewed sense of yes, I can do this.

Begin Again

I wanted to start writing again in 2012, but I was afraid to start something I wouldn’t be able to finish. Then I kept editing my thoughts so what was left on the screen at the end of the day were words that sounded hollow beneath the glossy veneer of pretty photos. (I was convinced that I could be the next A Beautiful Mess, or Young House Love.) 

Then things started happening: I organised a wedding and got married, we went on an amazing honeymoon to Paris and London, I settled in to my new job writing at BBC GoodFood. And sometime in mid 2013 I got pregnant. Even at that point I toyed with the idea of writing again; putting down words so I could remember all the milestones, when baby is the size of a cherry, a pear, a squash, a watermelon. But on 3^rd January 2014, we got the news of the baby’s diagnosis, and in my vulnerability I wasn’t ready to put my life, or hers, so uncertain, out there again.

And so I sit here now, 9 months after Johanna was born and turned my life all topsy turvy, thinking: “Where do I begin?” So many things have happened that I wish I had already written about. Some memories have already faded at the edges, like our honeymoon, images of walking along the Seine and trying to stay awake at a Man U home game, all taking on the beautiful sepia patina of age. While other memories, like lying in the darkened ultrasound room and feeling hot tears slip down my cheeks at the words: “There’s something wrong with her heart”, are still razor sharp and cut deep like they happened yesterday.

Ivan and I were talking in the car about new year's resolutions the other day, and I said that I had none, all my hopes and milestones for the year ahead are Johanna's--when she'll walk, talk, go for open heart surgery. But as he probed further I shared about my three-year itch to blog again, and how I always had an arsenal of excuses to never actually start: too busy, too tired, too uninspired. The biggest excuse I gave though, was that with all that's happened, I simply didn't know where to start. He was mostly quiet through my self-pitying spiel, and when I was done, he looked over his shoulder where I was sitting beside our sleeping child and said: "Why don't you just start where you are now?" 

I guess what’s important isn’t where to start, but that I begin at all. So this is me, beginning.

*Hits "Publish"*

In the magical woodlands

I don't know where to begin except with the goodness of the Lord! After today I'm more convinced than ever of His love for me and His plans that are always higher than mine.

Planning this photoshoot was tedious to say the least. Getting everyone available on the same day was something of a miracle in itself. Having two photographers (Sheena & Rox from Zap!) who shared my vision of the wedding was and is a godsend. We initially wanted to do a vintage bicycles and picnic in the woods theme, but we could't find a pretty bicycle so we just ended up with a celebratory picnic theme, which turned out really well (though, let me come back to the bicycle thing later).

I really thank God for all these wonderful bridesmaids I have too. Spending so much effort going dress and shoe hunting and rallying around me when I need them; also a most sporting bunch of groomsmen.  And my ever-supportive parents (one of whom took this photo) who, must've thought I was quite mad when I insisted on not doing the traditional shoot, but lent me so much of their help anyway.

The Friday night before the shoot, there was a thunderstorm over much of the east side of Singapore. I got a text from Sheena who said she was worried about the grass being too wet and muddy in the morning. But I had this feeling it was all going to be okay, still I offered up another prayer to God to keep the weather in our favour. The funniest thing was that, ten minutes later, Sheena returned my text saying, "Guess what! I'm in a cab passing ECP and this whole stretch is dry!" While we're on the subject of weather, God took it a step further and gave us this perfect weather in morning that was at turns cloudy and cool and let in beautiful dappled sunlight for the shoot. And then, when we were done and packed, it started drizzling.

I'd fallen sick on Thursday with a cough and throat infection, and I thought to myself: "I really can't afford to get sick this weekend!" I remember praying two nights in a row at 3am when my sore throat woke me up, praying in tongues in my head cos my throat hurt too badly to sound my words. But somehow God even turned falling ill for good when my editor gave me half a day off on Friday to recover! It gave me the much needed time to gather the last things for the shoot. Moreover, God held off the worst of my sickness until the shoot was all over and I came home and collapsed into bed.

But He wasn't done yet. As if to show how much of a wry sense of humor He had, he sent us the bicycles we'd wanted.

Yep. Here they are.

Can you believe that two strangers, a couple, actually stopped and asked us if they could take a picture with us? I was all like, "Sure thing!" And then I took a double take at their bicycles. The perfect ones we were looking for but couldn't find, in pink and blue. And they were so happy to loan the bikes to us for a couple of shots. And all the while, Sheena and I kept repeating in wonder, "Oh my God, He actually sent us the bicycles."

Thank you God for coming through for me again and again and again. :))

peas in a pod

These two sweet little ladies are going to be my flower girls for the wedding. I bought their dresses for a song and they look pretty good I do think!

Return to the Old Quarters

This was my first trip back to Hanoi since 2010 when I visited for the fourth time and finally fell in love with the colors and bustle and noise. I remember the first time I ever went, it must have been 2008 or 2009. I hated it! The weather was too muggy and hot, the streets so dirty, and the cacophony of cars and oh my god, scooters everywhere. It took four trips and a deeper understanding of the city's history and culture to get me to truly appreciate everything about it. Now I love crossing the road into a herd of motorcycles without looking left or right (the locals advise to walk slowly and steadily so the vehicles will swarm around you instead); I love eating at run-down eateries hawking pho or bun cha, spilling out onto the streets with make shift tables and chairs; I love wandering the labyrinth that is the Old Quarters with only the only landmark in my mind being Hoan Kiem Lake (lost? just point me to the lake please); I love the quaint cafes and French-style bistros, I even love counting wads of dong since I'm a millionaire there. Most of all, I really love the amazing people I've met there, who continue to serve God fervently and passionately, who are changing lives and winning new souls for the kingdom of God every single day.