If you ask

When you first meet my daughter, Johanna, I might tell you something about her. I might tell you she was born with a complex heart defect, I might tell you that her insides are flipped around like a mirror image. Or I might tell you that she's 10 months old now and she can crawl, pull herself up and shuffle along the sofa or the TV console; that she's not big on cereal, but she loves her biscuits and little baby fruit puffs.

I might tell you her favorite cartoons: Hi 5, which shows on TV once at 8am and once at 6.30pm on weekdays (she loves the dancing segments), and Chu Chu TV Indian-flavoured nursery rhymes on YouTube, which we might use to distract her when we're really desperate. If you're male, I might tell you not to come too close, because she seems to take to women better; and if you had a beard, not to approach at all, if you didn't fancy a major meltdown. And take off that cap too, because she's terrified of headwear. Is hat-o-phobia even a thing?

I might tell you that she loves bath time; she has three little rubber duckies and she'll complain when you lift her out of the water and wrap her up in a towel when it's over. I might tell you she has four teeth on the top and two on the bottom, and that it really hurts when they meet with your flesh caught in between. And I might tell you that those gappy teeth make her look just like Spongebob when she grins and her eyes become black tadpoles, but you'll probably see for yourself if you play a game of peek-a-boo with her.

If you ask how she is, I'll probably tell you she's doing well and meeting all her milestones; if you press a little, I might tell you her oxygen saturations are hovering at the mid 70s, "okay, but not great", as her doctors say. If you ask me how I am, I'll probably tell you I'm doing great, really enjoying motherhood and that I often wonder what this bright sun would say if she could talk; if you press harder, I might tell you that some days I'm gripped by fear that I might not have a whole lifetime to get to know her, that the Rastelli procedure she's due to have has an 80% survival rate for 10 years which drops to 50% for 20. I might be able to teach her her ABCs or long division in primary school, but I'm deathly afraid I won't get to see her graduate or find true love or become a mom.

I might tell you to go home and hug your children a little tighter, to love your family a little harder. I might tell you to be in the present a bit more, to put away your phones and laptops and be present when you're in the company of your loved ones and savor the seemingly mundane moments because nobody has forever.  

  

Pre-CNY reno update

We finally got the keys to our new home last month, and started renovation. We have an interesting layout for our five-room flat overlooking the river at Fernvale; it's squarish and boxy without any hallways. I'm super excited about it's potential! I wanted something light-filled and open and airy and this about checks all the boxes. 

It's very scary, but we decided not to go with an ID because I already had a pretty clear picture of what I wanted and it's not a major reno with ceiling works and feature walls and all that. So in the same breath that we got our keys, we signed with a contractor and down came the walls of the kitchen and master bedroom. 

I really love the look of dark hardwood floors, but they are really impractical in terms of cost and maintenance, what with a dog and a baby. And though vinyl seemed like a good choice at first, I did a little bit of reading up and it seems that there might be toxicity and waterproofing issues in the long run.. not such a good idea with a crawler and the fact that the kitchen is going to have the same flooring. So we went with homogenous wood-look tiles. These, from Lian Seng Hup in Balestier came up to $4 psf, even cheaper than vinyl.

 

The contractors have taken a break for Chinese New Year, and so far the floor's all done and covered with protective cardboard, the air con trunking is up, and so's the cement base for the kitchen cabinetry. So much left to do and buy! It's all slowly coming together, and I'm crossing my fingers that reality is not going to be too far from what I envisioned in my mind. I literally go to sleep with light fixtures, tiling and laminate choices flashing behind my eyes.

A tuxedo kitchen & island with black bottom cabinets and white uppers to keep the space airy, yet grounded. 

I relocated the MBR door to make way for a larger wardrobe space inside, and plan to add French doors.  

Lion heart

Wanted to share a beautiful poem written by my friend Kerrie, dedicated to Johanna. It speaks of inner strength and fortitude and I absolutely love it.

Day Five: New Life

Every mommy blogger worth her salt has her birth story. So for Day Five: New Life, I thought it might be appropriate to share Johanna's.

I always imagined that I would have a pregnancy and birth very much like the rest of my life has been--uneventful. Unfortunately, life doesn't always go the way you plan or imagine. Less than two months into the pregnancy, I started spotting heavily and the ob-gyn that I was seeing at KKH diagnosed it as a threatened miscarriage. "About 20 per cent of pregnancies end in miscarriages," he said, matter-of-factly. "Sometimes, it's the body's way of telling you there's something wrong with the quality of the embryo. We'll just have to wait and see."

So for the next three weeks we held our breaths as the bleeding did not abate. I remember praying very hard in my helplessness, bargaining with God to let me keep the baby. The spotting stopped when I commenced my second trimester, along with all my morning sickness. The next three months were a breeze and the incident was relegated to the back of my mind.

So 15 weeks later, when we were deciding on whether to terminate the pregnancy after getting Johanna's diagnosis of a complex heart defect, Ivan reminded me of how God had answered our prayers then to let us keep the baby, and we knew that termination was not an option. The heart is the first organ to form. On hindsight, it seems that the KKH OB was right. But we had to trust that if God had answered our prayers then,  He could do another miracle for Johanna.

Because the baby could be born blue, I was advised to have an elective C-section so that the cardio and NICU team could be on standby to receive Johanna and give her immediate treatment if it were necessary. The caesarean was scheduled for 21 April 2014, on my 38th week of pregnancy. It was just 5 days after my own birthday and I was super excited to finally meet Johanna, a belated birthday present to myself. I woke up that morning, full of anticipation, my hospital bags packed and ready to go. Then the unimaginable happened. Yes, even more unimaginable than anything that had happened so far.

As I put down my toothbrush and filled my mouth with water to rinse, the water came sloshing back uncontrollably out of my lips. I looked into the mirror, and to my horror, I realized the whole right side of my face was completely lax and drooping. I made a squinty face, and only the left side of my face creased up, the right remained smooth and expressionless. WHAT IS THIS SORCERY. DID I GET A STROKE OVERNIGHT?!

When I got over the initial panic, my brain finally connected what was happening to the swooshing tinnitus in my right ear that had been bothering me in my last trimester. The pulsing, swooshing sound had gotten incrementally worse in the last three weeks, to the extent that I could hear it over Transformers 3 in the cinema, that I would be kept up half the night because it would sound like a clanging funeral procession in my head in the still of the night.

When we checked into the hospital, the doctors decided that they couldn't proceed with the scheduled C-section without sorting out this facial paralysis first. Instead of meeting Johanna like I'd planned, I spent the day being examined and having my brain scanned to make sure that I did not indeed, have a stroke. They diagnosed it as Bell's Palsy, an unexplained infection that had damaged a facial nerve and paralyzed half my face. It was so bad that I couldn't speak properly, and I had to tape my right eye shut at night because it would stay open involuntarily.

I did have the C-section on the morning of 22 April after all though. We had planned to have an epidural C-sect with Ivan by my side in the OT; I wanted to experience it all and at least have a chance to see the baby before she was whisked off to the NICU. But like everything else we planned in this whole pregnancy, it fell through because the anesthesiologist felt that he did not want to risk the epidural affecting my damaged nerves and at the last minute, it was decided that I was to have GA.

Johanna was born at 9.34am weighing in at a hefty 3.2kg, and despite all the fears that she would be blue and un-oxygenated once out of my womb, she emerged pink and yelling at the top of her lungs, with an APGAR score of 9.

So as it turns out, my birth story is no birth story at all because it's like I wasn't even there for it. I woke up, in pain, still looking like I was at least 6 months pregnant. Baby was in NICU and I was in an 8-bedder ward two levels up. I finally got to see Johanna later that evening, I was wheeled downstairs and I could only look at her from afar, outside the glass of the NICU because they weren't sure if my Bell's Palsy was still infectious. I don't know if I was expecting to be hit by an immediate maternal bonding, but it all felt kinda anti-climatic and detached. 

I don't think I felt like she was really mine until she was off her tubes and I finally got to hold her for the first time four days later when the lactation consultant wanted us to try breastfeeding. And boom, it was like she knew me and I knew her. She latched like a champ. 

This little baby has since turned my life (and living space) upside down, and put a whole lot of things into perspective. I love her something fierce and it takes up so much room in my heart that I wonder what was in that space before she came along. Some might say it's the mother who brings new life into this world, but really, I think she's the one who gave me new life. 

Day Four: Realization(s)

I know this is supposed to be a photo-a-day challenge, but to be honest, I have no photos from the period of time I want to talk about today. I looked in Instagram, Facebook and in my phone's camera roll and in a time where something of every day is recorded for all posterity, it's as if I lost a chunk of my life. There's a blank for a few days from the day we got Johanna's diagnosis and my life got derailed.

We saw two doctors that day and both of them basically reiterated the same things: the baby has a complex heart defect, she may not live beyond childhood, any surgery is high risk and would continue for life, do you want to terminate the pregnancy? If you do, you have to decide soon, or it would be past the legal term of 24 weeks.

At first, it seemed like Ivan and I were at complete odds about what to do. I couldn't comprehend the thought of terminating the pregnancy, and while he agreed, his priority was the quality of her life and not subjecting the baby to a lifetime of surgeries and medications. That only left us with one solution: to have the baby and bring her home on comfort measures. But how many parents can sit back and watch their child die, knowing that something could be done, even if it would prolong her suffering?

I remember going to bed that night blanketed in grief. There were no more words to be said between Ivan and I and he held me and we cried and we prayed. I fancy myself a writer and a wordsmith, but that night I could barely find the vocabulary to say anything to God. I pleaded, and promised and committed my faith, but in my heart the only words I truly had were "God, why?" Long after Ivan fell asleep, I lay with my face pressed into a damp pillow, crying for the child we had not yet lost.

The next morning I woke up when the baby kicked, and for a few blessed seconds, with the sun shining into our room, I forgot about the nightmare that was the day before. Then reality set in and it was like a slap in the face. I remember that feeling--the roiling taste of fear and grief mixing into one overwhelming flavor of panic that blooms from the very center of your being and turns to ashes on your lips, leaving a tingly and numb sensation--clear as day, because I still taste it in my mouth whenever I imagine losing Johanna.

I went for an amniocentesis that day, a test that would show if the baby's heart defect was accompanied by any chromosomal abnormalities, like Downs Syndrome or worse, Trisonomy 13 or 18, death sentences. I had to be warded for the day after a sample of my amniotic fluid was taken (I have never seen a larger needle), and I was given a bed in the 6-bed maternity ward at Parkway East.

My mother had drawn the curtains around me, but not before I noticed the nurses wheeling in a newborn to the woman in the adjacent bed who had just given birth that morning. Anyway, even if I couldn't see her, I could hear the celebration going on, the endless stream of relatives cooing over the boy's full head of hair, his sparkling eyes that looked just like daddy's. And I thought, how could one flimsy curtain so decisively draw the line between joyous new life and the stink of fear and death? As much as I wanted to protect the daughter in my womb from the world, my mother was trying to protect me from the pain of watching others celebrate what I might not be able to. My mother was the first to break. She hugged me and cried and told me it was alright to cry.

I only had one visitor that day, one of my oldest friends, Germaine, who responded the way I really needed at that time. She didn't try to comfort me with Bible verses or trite consolations, nor offer me solutions to a problem that had none. She cried with me and told me honestly that she didn't know what to say. She showed up at the hospital and distracted me from wallowing in self pity.

In the days after that, we went for the mandatory abortion counseling. We met our church pastors. I was brought up in a strong Christian household and I knew in my mind that abortion was wrong. But when push came to shove, I wavered. I went so far as to imagine the whole process, and I asked if I would be allowed to see her and hold her once it was done.

I'd like to say there was one precise moment when I made a decision and pulled myself together and lived happily ever, but the truth is that realization, like grief, comes in stages. By that time, I had already begun feeling the butterfly movements of the baby, and I realized she was a fully formed being that I had no right to choose whether she should live or die. When the amnio results came back clean, I realized I would have kept her and loved her even if it didn't.

In my fear and uncertainty, I stopped planning for after the baby was born. No planning the nursery design, no shopping for clothes and things. But I came home one day and found a whole stack of the littlest baby clothes and mittens and booties, all freshly laundered by my mother, and I realized that it was okay to cheerfully anticipate the arrival of my baby.

The first Sunday after the diagnosis, I dreaded going to church. I was afraid of what people might ask, and I was also afraid of having to pretend like my world wasn't shattered. Most of all, I was afraid that I would be too angry with God and He would know. I always thought those people who still praised God in adversity and personal crises were so heroic, like the guy who wrote Amazing Grace after his whole family died, or the Hillsong worship leader who sang Desert Song after her miscarriage. But when it finally came my turn, I realized that it's not hard or heroic to turn to God when He is all the hope you have left. It's desperation and it leaves you broken and humble.

I still grapple with the whys and the unfairness of the whole situation, but as each realization before helped me grow and move past a certain stage of grief to acceptance, I know that there are many more realizations to come that will answer all the lingering questions I still have and maybe, just maybe, see God's greater purpose for it all.

Photos from my bump shoot with Zap! Photography

 



 

Day Two: Surgery

When Johanna was four months old, her oxygen saturation levels dipped to the low 60s. Her surgeon took one look at those numbers and declared that she would have to undergo her first surgery soon. I thought with the whole snail's pace of the public hospital appointment system, it would mean perhaps another month. Dr Shankar looked at me strangely: "With these saturation numbers, I think tomorrow we can do the surgery." 

Tomorrow?! But I was still supposed to be at work! But her father was in Hong Kong! 

Needless to say, Ivan's business trip ended a day early and on a Monday morning, we found ourselves back at the hospital, overnight bags and a swaddled up baby in tow. The surgery was scheduled for the next morning and Nana was subjected to a whole bunch of tests and scans. She cried and screamed for most of the day and by the time evening rolled around, she was hoarse and utterly exhausted. That night, I sat/slept upright in a hard chair by her bed. I didn't want to leave her because I knew it was probably the last time I was going to be able to nurse her for a long time. At 4am, she woke up crying and I pulled her close to feed her, trying to get into a comfortable position amidst a tangle of sensors and wires attached to her. She lay awake for a while after that, blinking quietly at me, and I told her how sorry mummy was to have to put her through all this. 

When the sun came up, the nurses came in to prep her for surgery, giving her an antiseptic bath that did not go down well. By this time, she had already cried herself hoarse and would not let up unless I was carrying her. When the orderlies came to wheel her down to the OR, she wouldn't lie still on the bed, and they wouldn't let me carry her down to the OR. So I had to sit on the bed, cradling her back to me as they wheeled us both down many long hallways and elevators. 

She'd stopped crying and was looking around curiously at all the people we were passing by, but I felt like my heart was breaking. The lump in my throat was getting bigger and sharper as my vision blurred and narrowed till it was just me and the warm baby I was holding on to. Her soft little baby head was up against my chin and as the tears rolled off my face, they rained onto her head. Through the haze of tears I saw my mother-in-law falling back and wiping at her eyes as she tried to hide her own tears from me. 

Only Ivan and I went into the waiting area of the OR as the theatre was being prepped. I wanted to be brave for Johanna and be with her all the way till we got inside and they put her to sleep, but at the last moment, I chickened out. I was afraid I wouldn't be able to control my emotions to hand her over to the surgeons without bursting into tears. Ivan was the one who scrubbed in and carried her into the operating theatre. 

A few hours later, she was wheeled out from recovery and we followed her back to the NICU. She had so many tubes and wires connected to her, and she was so still, and swollen looking, but so blessedly pink. 

The road to recovery was harder than I thought it would be. The second night after the surgery, we took the nurses' advice and decided to go home to rest since she was still sedated and not conscious. We stood by her bed to say goodnight. She was so small she seemed swallowed up by the big bed and all the beeping and whirring machines. They'd taken her off the respirator earlier that day to see if she could breathe on her own, and she was, but so laboriously I could see her chest struggle to rise with every wheezing, hacking breath she took.

She looked so uncomfortable and so bloated and sick that my heart was in shards. Ivan had to take me by the shoulders and steer me out of the ward and to the car. I later confessed through tears that for a brief moment, I entertained the thought that I rather she be dead and safe in God's arms than suffer here. 

It was so hard to see her so unhappy. She would fight against the restraints tying her arms to the bed rails, and cry soundlessly at the discomfort of the CPAP mask. We couldn't carry her and rock her like we did at home, we barely touched her for fear of passing on bacteria or germs from the outside. She'd cry so hard when she was not sedated, the machines beeping in warning that her oxygen levels were falling. You couldn't let her cry, but you couldn't comfort her either. For the brief times when she was conscious and not crying, her eyes would be unfocused, glazing over you. Where had my lively, feisty baby gone?

Slowly but surely though, the little warrior fought through complications after complications, adjusting to the new shunt they put into her heart, allowing more blood to pass through her lungs. Two weeks later, she had enough tubes removed so I could carry her. More than twenty days later, she was finally allowed to come home with us. Every morning now she takes a dose of aspirin, which works as a blood thinner to help her blood circulate better. While she hated it at first, she's getting so much better at just sucking it down these days without much fuss. 

If you want to know a bit more about this surgery, Johanna had a Blalock-Thomas-Taussig Shunt put into her heart that directs more blood flow to the lungs to relieve her cyanosis (blueness) while she is waiting for her main corrective surgery.

I came across this great 2004 movie starring Alan Rickman about this surgery. I didn't know till I saw this movie, how historic this surgery was! It was the very first heart surgery back in an era where operating on the heart was considered in the medical community to be taboo. What's more, it was a black man Vivien Thomas who, despite not having a medical degree, flew in the face of racial prejudice and came up with this surgical solution for blue babies--infants who'd otherwise have no other hope of living. 

I was very moved watching this film. Scenes of the Saxon family, whose blue baby Eileen was the first to undergo this operation, hit particularly close to home--their anxiety, their pain, their hope hanging on a thread and also, their unspeakable joy. And I felt this inexplicable sense of connection to Dr. Alfred Blalock and Vivien Thomas, I wish I could go back in time and hug them both and thank them for the work that would one day save my own daughter's life. I did the next best thing though, I thanked God for giving these doctors their intellect and their talents, for engineering the circumstances that led these two men from such disparate backgrounds together, for giving them the faith to do what everybody said could not be done so that so many children can live because of what they accomplished in their lifetime.

You can watch Something the Lord Made in its entirety here.

Or if you're a reader like me, the film is based on the award-winning Washingtonian article "Like Something The Lord Made" by Katie McCabe. 

I'll leave you with an excerpt:

As he was working out the final details in the dog lab, a frail, cyanotic baby named Eileen Saxon lay in an oxygen tent in the infant ward at Johns Hopkins Hospital. Even at rest, the nine-pound girl’s skin was deeply blue, her lips and nail beds purple. Blalock surprised Eileen’s parents and his chief resident, Dr. William Longmire, with his bedside announcement: He was going to perform an operation to bring more blood to Eileen’s lungs.

Overnight, the tetralogy operation moved from the lab to the operating room. Because there were no needles small enough to join the infant’s arteries, Thomas chopped off needles from the lab, held them steady with a clothespin at the eye end, and honed new points with an emery block. Suture silk for human arteries didn’t exist, so they made do with the silk Thomas had used in the lab—as well as the lab’s clamps, forceps, and right-angle nerve hook.

So complete was the transfer from lab to operating room on the morning of November 29, 1944, that only Thomas was missing when Eileen Saxon was wheeled into surgery. “I don’t think I’ll go,” he had said to chemistry technician Clara Belle Puryear the previous afternoon. “I might make Dr. Blalock nervous—or even worse, he might make me nervous!”

But Blalock wanted Thomas there—not watching from the gallery or standing next to the chief resident, Dr. William Longmire, or the intern, Dr. Denton Cooley, or next to Dr. Taussig at the foot of the operating table. Blalock insisted Thomas stand at his elbow, on a step stool where he could see what Blalock was doing. After all, Thomas had done the procedure dozens of times; Blalock only once, as Vivien’s assistant.

Nothing in the laboratory had prepared either one for what they saw when Blalock opened Eileen’s chest. Her blood vessels weren’t even half the size of those in the experimental animals used to develop the procedure, and they were full of the thick, dark, “blue” blood characteristic of cyanotic children. When Blalock exposed the pulmonary artery, then the subclavian—the two “pipes” he planned to reconnect—he turned to Thomas. “Will the subclavian reach the pulmonary once it’s cut off and divided?” he asked. Thomas said it would.

Blalock’s scalpel moved swiftly to the point of no return. He cut into the pulmonary artery, creating the opening into which he would sew the divided subclavian artery. “Is the incision long enough?” he asked Thomas. “Yes, if not too long,” the reply came.

In and out of the arteries flashed the straight half-inch needle that Thomas had cut and sharpened. “Is this all right, Vivien?” Blalock asked as he began joining the smooth inner linings of the two arteries. Then, a moment later, with one or two sutures in place: “Are those bites close enough together?”

Thomas watched. In such small arteries, a fraction of a millimeter was critical, and the direction of the sutures determined whether the inside of the vessels would knit properly. If Blalock began a suture in the wrong direction, Thomas’s voice would come quietly over his shoulder: “The other direction, Dr. Blalock.”

Finally, off came the bulldog clamps that had stopped the flow of blood during the operation. The anastomosis began to function, shunting the pure blue blood through the pulmonary artery into the lungs to be oxygenated. Underneath the sterile drapes, Eileen turned pink.

“You’ve never seen anything so dramatic,” Thomas says on the tape. “It was almost a miracle.”

Almost overnight, Operating Room 706 became “the heart room,” as dozens of Blue Babies and their parents came to Hopkins from all over the United States, then from abroad, spilling over into rooms on six floors of the hospital. For the next year, Blalock and Longmire rebuilt hearts virtually around the clock. One after another, cyanotic children who had never been able to sit upright began standing at their crib rails, pink and healthy.

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!