Number 3

No, it’s not a baby. Today, Elise will be undergoing her THIRD repair operation. In textbook model cases, only one operation is needed to remove the eye and insert a plastic round implant to replace the eyeball. Note that there is currently no procedure that can let her regain vision in her right eye, so everything is largely due to aesthetic reasons.

To recap, the first operation went pretty alright until discharge started leaking from the right eye and it was discovered that her implant got exposed.

The second operation to repair the exposed implant was a failure. She couldn’t open her eye even after the stitches were removed and it was all bloody.

The following week, a third operation was done. When her stitches got removed, the entire plastic ball popped out. The doctor advised us to leave it alone. Since then, she’s been functioning well without it.

Which brings us to today. The surgeon intends to do a fat graft to extract fat from her bum to place in her eye as the plastic implant obviously doesn’t work. Fat grafts in children have shown to work better as the fat somehow expands to fit the empty socket rather than shrink, which is what happens in adults.

Is this all necessary? The surgeon told us that we could wait to avoid her getting traumatised but it is a surgery that will have to be done anyway, so I prefer to get it over with. I’ve asked what will happen if we don’t do the surgery. As she is still very young, if there is a gap in her socket, the bones may not grow properly since there is nothing to support them. I decided to go ahead with the surgery.

Besides, it’s not the surgery but the post recovery wound care that affects her the most. She’s only just regained her appetite after recovering from cough, and everything is going to go down the drain again.

She’s at an age where she has started to elaborate and use full sentences to describe her surroundings and feelings. Even after so many operations and “staycations” at the hospital ward, the guilt never goes away. 🙁

We’ve been disappointed and disheartened and have questioned the surgeon on the multiple failed results. We don’t doubt the surgeon. He has decades of experience. I’ve asked him why he didn’t go ahead with the fat graft, but he was reserving it as a last option as it would leave a small scar at her back. Sigh. We all hope this will be the last op.

A Lesson on Looks

Elise has had her prosthetic eye in for slightly less than a year. After her follow-up in January, we were told that the tissue below her prosthetic eye had eroded due to abrasion and insufficient moisture. I was supposed to put in eyedrops for her as many times a day as possible. She would run away from me whenever I tried to touch her eye and I failed to fulfil this necessary criteria. 

It wasn’t a wound that would heal by itself, thus Dr Ganga suggested that an operation be done to cover up the gap. He warned that there might be a need to do a skin graft off her back if the donor tissue wasn’t enough to cover the gap. I agreed almost immediately because the hole would only continue getting larger with repeated contact from movement. The boring name for the procedure Elise underwent is “Scleral Patch Graft for Exposed Orbital Implant”. Don’t Google that if you’re squeamish. 

The operation went well and the donor tissue was enough to patch up the 5mm gap in her eye socket. We spent the next two nights in a 8-bedder ward. She vomited and ran a fever, yet she refused to take Paracetamol orally.  The Paracetamol was also to help her combat the pain from the operation. Eventually, the nurses gave her Paracetamol via intravenous drip. -_- 

The worst part was when the nurses tried to change her eye dressing. It was a necessary yet traumatic experience for her as the wound was fresh and her entire eyelid was stitched shut and swollen. To prevent her from struggling, we swaddled her with a bedsheet. My dad held her legs down. A nurse held her head down while another tried to wipe her eyelid and apply medicine.

“No, no, no, no! Go away! Go away! Help! 엄마! 公公!No, no, go away! 아빠!”, she tried all she could to get herself out of that situation by pleading with us to stop, calling for each of us to save her. She gripped my hand for support. The hand which failed to rescue her from fear. It was impossible to adhere the tape for the eye shield onto Elise’s face which was dripping with perspiration and tears. 🙁

For about 10 days after the operation, her eyelid remained stitched shut to aid wound healing. At its worst state, it looked like someone socked her in the eye. It was all red and puffy like a goldfish’s. For a breather, we brought her down to the playground opposite our house. She enjoyed herself but there were a group of children aged about 8 to 10 years who were extremely curious about her appearance and started gossiping. They even went straight up to scrutinise her eye. URGHHHH. Even after I told them she’d injured her eye.

She felt rather self-conscious and down about it. My dad decided that there was nothing to be ashamed or embarrassed about and that night, we brought her down for a walk. Another group of children. This time, they accepted the explanation, included her in their games and she healed a little inside, only to get it broken the next evening when she spotted a friend she frequently hangs out with. She called out for her friend, who saw that her eye wasn’t quite the same and hid behind her helper. Elise tried to engage her, showing a toy she had, but that failed too. I couldn’t take it and grabbed her away to play with something else. Secondhand heartbreak. 🙁 

Fun fact: Some adults can be idiots. At the mall, a stranger asked us, “Why is her eye like that?”, only to be shushed by his female counterpart who had about a hundred times more EQ than him. Some people think through their asses and talk without a filter. I snapped back, “关你屁事!(lit. None of your business!)“ but he was too far gone. At the bus interchange, a helpful uncle chimed in with his useless advice, “There’s a temple near Sheng Shiong, you should bring her there.” By that time, my social meter was reduced to negative and whatever I replied would have possibly sparked a physical fight. 

Two days ago, she had her stitches removed. It still looks like she has her eye closed because the swell has yet to subside and there’s discharge which constantly leaks from the wound and has to be cleaned. The wound needs about 6 weeks to heal so we can’t slot in her fake eye just yet. It’s a conformer like what she had last year. Post-op care has been a struggle (holding down her limbs, holding her head in place, cleaning in between her tightly clamped eyelid, prying open the eyelid to drip in medicine). Just this evening, her conformer popped out as I was cleaning it and we decided to leave it until tomorrow morning. 

At her teacher’s encouragement, we sent her back to school today! Her classmates are still too young to care about appearance. It’ll be a while before she looks like this again, but soon! The sad lesson is that how you look determines how you are treated in the world. 

Babying the Toddler

Not having a helper means that there is always laundry to be hung, folded or kept, dishes to be washed, floors to be mopped, babies to be fed and changed… the list never ends before it repeats itself. Some friends say they choose to work as a form of escape from their children. By staying home all day, I’m slowly propelling down the dark abyss of auntie-hood. I already use a giant claw clip for my hair and use a large reusable bag for shopping nearby. I haven’t ventured into wet markets yet – my mother used to bring me along to her marketing trips at the wet market and I hated how the place looked and smelled. I still patronise trusty NTUC for basic groceries and reduced-to-clear (half-price!) packaged red meat and vine tomatoes from Cold Storage when I feel slightly richer. It gives me a kick when I can prepare steak for less than $10 at home! 

#DayInALife of a work-from-home mom. 

I did something risky a few Saturdays ago when I was the only adult left at home with the two kids – I brought them out! Alone! My dad warned against it, but did I listen? I bundled both kids up and headed straight to the nearest mall… where the peak dinner crowd meant I had to wait for a table even at the least crowded restaurant. We got our table, I managed to finish my entire meal AND this cute photo of the babies! As a bonus, we even took a ZooMoov ride! I actually wanted to go sing after ZooMoov but that’s another adventure for another day.

This is how exciting my life has become. Success is not measured by sales figures or hitting KPIs but by how early both kids go to bed and stay asleep, whether the laundry is done and whether people buy stuff off my Carousell account. -_- 

A year has gone by since Elise had her eye removed due to retinoblastoma. Elise has been undergoing regular eye examinations once every few months, most times under IV sedation.
We were strongly advised by the geneticist to undergo genetic testing to determine the retinoblastoma risk for Elise and Emmett which stressed me out quite a bit since it cost close to $6,000  and was not eligible for subsidy nor was it claimable by insurance. If we didn’t do the test, both kids would be placed under high risk and Emmett would have to get his eyes checked as frequently as Elise does. 

I was undecided but when he went for his eye examination at about a month old and the nurses swaddled him to clamp his eyes open for the doctor, he screamed his lungs out in fear for the entire procedure. It was as if he was a little piglet getting slaughtered. After that day, I told the geneticist to proceed with the test for a chance that didi could be spared. The results came out and he is not at risk for retinoblastoma at all. Elise developed the tumour sporadically when she was still a fetus in the womb. 🙁 

A while after the recent eye examination to detect for new tumours, I received this email from the doctor that said “I took a picture of Elise’s socket after removing her prosthesis on Monday and sent it to Dr Ganga. He would like to see her in clinic. Would next week be ok for you?”. Alarm bells went off in my head because we don’t see the surgeon on a regular basis unless stuff goes wrong.  Anyhow, we went to the hospital last week not being able to do anything and spent the entire afternoon today trying to sedate her unsuccessfully for the procedure because she refused to swallow even a bit of the medicine. She fell asleep and I tried to remove her prosthetic eye – it took 3 people to do so. A nurse held onto her body, I held open her eyelids and another doctor suctioned the eye out. After that, it was as if she got energised and refused to fall back to sleep. Dr Ganga had wanted to sedate her so she wouldn’t “be traumatised” during the procedure, but it didn’t seem like she was going down. Eventually, I decided that I didn’t want to make another trip down and I was confident that it wouldn’t be that bad so I decided to go ahead with it. It took 3 grown adults to pin her down for the surgeon to do a check that lasted all of 5 seconds -_-||| 

Trying to latch her back to sleep. She’s without her prosthetic eye in this photo.

Dr Ganga says she has to do another operation because she has orbital implant exposure. She has to do a scleral patch graft to mend it as this is not something that will close up on its own without surgical intervention. I’m quite bummed about it because tissue is needed to cover the implant and it has to come from either a cadaver or from Elise‘s back or thigh. Dr Ganga cannot say for sure whether he needs to graft skin from Elise’s back until he removes the implant to check in the OT. 🙁

He also says that such a case happened years ago to blind parents whose daughter had BILATERAL retinoblastoma and they weren’t able to remove the prosthetic eye for frequent cleaning. How can I feel mopey when there’re so many other people in worse situations than us? In our case, we rarely remove her fake eye because it takes 3 grown adults to hold her down and also because I’m still not used to seeing her without her eye. I’ll get used to it soon…

Her father tried to tell her which colours to use but I don’t. At such a tender age, building up her confidence is more important than ensuring she colours within the lines or whether Pororo is blue or green. She takes colouring very seriously and in turn, I take pride in her doodling. 

I dislike the term “Terrible Twos”. It’s only terrible when parents don’t put in the effort to research and read up on child psychology and understand the underlying causes for “misbehaviour”. More often than not, they resort to time-outs, shouting and smacking their kids to shut them up. By doing so, they’ve missed an opportunity to connect with their child and transform such scenarios into happy encounters. Life is fleeting and I want to create more happy memories with my children WHILE ensuring that they don’t grow up to become spoilt brats. Is it possible? Absolutely. The next time you get angry at your toddler, please think of the mothers whose toddlers are in critical condition and may not make it back home and THINK if there is another way to discipline your toddler WITHOUT resorting to aggression.