Pre-op

Just hours before we admitted A into the hospital seemed almost unreal. Our little girl was actually going for an operation. But we were kept busy, having to give A a snack after she woke from her nap, then rushed Sam to the paternal gramps to stay overnight and then headed to the hospital.

baby doll Emma was a real comfort

A was excited to get acquainted with the huge cot once again. While we were feeding her dinner, the doctors came round to ask questions and do some checks on her. (And she repeated the word 'stethoscope' after me as they were checking her! Even the doctor was amused.) It was rather disrupting so she only ate about 3/4 but thankfully after the questioning, the hospital food came so she could eat more. Though she was tired and was due to sleep, she was unused to the new environment and couldn't get to sleep. Besides she was supposed to have her drip inserted and her arterial lactate (blood sample) taken so the numbing cream Emla was applied to reduce the pain and we waited but the doctor didn't come back even after 2 hours (and the cream had lost its effect within an hour). A was very tired by then and thankfully I managed to put her to bed by 840pm. Daddy was back at the gramps putting Sam to bed which he thankfully managed to as well around that time as S also took some time to adjust to the unfamiliar surroundings. Unfortunately A stirred after 45 min or so and because someone had switched on a light nearby, I couldn't put her back to sleep.

Then a short while later, the doctor came and took A to the procedure room where she applied the cream again. We had to stay outside while she did the procedure and could hear all the commotion going on in the room with A being terribly upset and the doctor "scolding" her not to cry and that mummy was outside. After about 20 minutes, she emerged from the room all sweaty and teary-eyed and the doctor said she was unable to do the arterial lactate and could only insert the drip.

It took quite some time before I finally managed to put A back to sleep again. We were disturbed once in a while with the doctors and nurses coming round so although she was almost falling asleep, they'd come and speak to us, then she'd wake up. Sigh.... she was obviously tired but I could only keep nursing her and carrying her around the ward (as she kept crying that she wanted to go outside and I didn't want her to make too much noise and disturb everyone else who needed rest). Even gave her bread at 11 pm as I figured it was better to fill up her tummy before she had to start fasting since she was still awake anyhow. Then I nursed her again and she finally slept about 12 plus (and so did I, together with her in her cot, but unfortunately they stopped providing nice big pillows - because she was a baby and they don't provide for the parents).

just as Tigger was

I was awoken at 3 am by a nurse who brought milk (I had wished they would have given it to us earlier but I guess I should have made it clearer to them though I don't usually like troubling people too much) and reminded me to start the fasting. Annette was still sound asleep so I decided not to wake her to give her milk. She stirred at 6 plus (possibly because she was awoken by some sounds) and kept asking for milk so Carlsen and I just had to keep carrying her and walking around to distract her from making too much noise, and telling her that she could only have water. But she just took a few sips. Then we just waited till 8 am before the nurses started prepping us for the op.

Operation brought forward

Annette's operation has been brought forward to Mon 18 Jul. And she'll be admitted on Sun. Surprisingly the surgical side called me twice to inform me that it'd just be a day procedure, without need for an overnight stay. But the paed side called me twice as well to inform me about the overnight stay because she's very young.

Judging from the timing that she can't take solids or milk after midnight, and can only take plain water up to 4 am, and her operation is only about 830 am. So she might have difficulties sleeping well because she usually takes sips whenever she wakes up. If we just do a day procedure, then we'd have to report by 7 am. Think it'd be probably best to do all the necessary procedures like inserting the drip etc the day before rather than at 7 am when she would be super unhappy and tired.

Updates this week

Annette won't need to be admitted on 19 Jul after all because nurse said there was a "problem" with the admissions on that day so it'll just be a day-procedure. Which works out better for us anyhow as we can get a better night's rest at home and we don't have to pay extra for the hospital stay.

As for our renovation plans, I enjoy thinking of decorating ideas etc but it can be such a headache as there are so many furniture options and yet I'm not really able to go out often to view the various products (but I guess having the Internet is a blessing). Having to consider all these various factors: cost/ space constraints/ needs/ aesthetics/ functionality/durability, I really wonder how to make a good decision. Do I think too much? And it gets worse when there are sales going on! Even more tied for time! Really wonder how best to sort this out...

Perhaps it's because I really love having a place of my own... for my own family... keeping it cosy and comfortable.... After all, while I was in primary school, I didn't even have a study desk - I just studied on my bed - even though I was staying in landed property! Can't even remember where my clothes were kept. I only had a makeshift study desk after Sec 2. Maybe that's why I'm overcompensating for my kids and my family.... 

Thanksgiving about chest ultrasound

We thank God that we managed to distract Annette long enough for her to keep still for the detailed scan to be done without her having to be sedated, and her heart's alright so we can proceed with the biopsy. Many thanks for family and friends for praying with us.

Biopsy operation scheduled

Annette's operation has been scheduled for 20 July. She'll be admitted on 19 July. It was tiring the last time she was admitted for her MRI scan so I'm trying to prep myself for another tiring 2 days. Praying for strength and energy as we probably can't get good sleep during the night, as well as for the whole procedure to go smoothly and safely.

She'll have to fast a few hours before the operation (a hungry kid can be a grouchy kid and it might affect her sleep too) and will be put on a drip (which can be quite cumbersome as she moves around). She'll be under general anesthesia/GA (pray that there'll be no complications and hopefully she won't feel too nauseous after the operation so that she can eat/drink). Praying too that we'll be able to work out suitable care arrangements so that daddy can also be there for Annette at the hospital and help relieve mummy when necessary (because the grandmas might not be able to help out)

She'll have a small permanent scar on her thigh and she'll take about a week to recover so during her recovery, she'll probably be very needy and unhappy with the discomfort in her leg. Praying for the ability to cope with her needs (and whines) as well as Sam's, daily household chores and packing/planning for our renovation works in August. Also praying for a speedy recovery.

Hope she'll be just as happy to sit on this little IKEA wagon during the recovery process :)

Mitochondrial disease disorders

Came across a website that I might be referring to more in future. http://www.mitoaction.org It's about the mitochondrial disease disorders and there's a whole spectrum of disorders. Annette might be suffering from mild symptoms. We're thankful that it's just mild symptoms at least. Just unsure what the future holds for her but we pray that she'll know the God who holds her future in His hands and for us to keep trusting in Him everyday.

Seeing a cardiologist this Tue

We're finally biting the bullet and have decided to go ahead with a muscle & skin biopsy for Annette after much discussion with the paeds and prayer. The paeds suspect that she has a mitochondrial disorder and because mitochondrial disease is not one disease, but rather is a group of diseases which are characterized by problems of decreased energy production, so it'd be good to get a diagnosis.

We thank God that He is Sovereign and He is a loving and gracious God who has been our strength and will continue to see us through this journey no matter what the outcome. Annette has gotten much more steady in her walking and standing but she's still unable to get up from a squatting position without looking for support. She was quite keen on walking short distances and started covering longer distances a few weeks back but recently she was more reluctant once again, possibly because she had some falls which might have put her off balancing on her own.

Happily carrying Jie Jie's flower girl basket of rose petals - a pity she couldn't walk with Jie Jie

We pray that the doctors will be able to diagnose her condition after the biopsy or else we'll still be clueless about what's happening to her. And that she won't need to undergo further testing because this biopsy is already invasive and rather expensive. We're worried about whether she'll be able to get insurance (a regret that we have for not settling her insurance before we started on this journey of tests since she was 6 months old) but we trust in the Lord for His provisions.

Before they can schedule the biopsy, Annette has to have a chest ultrasound (echo test) so she'll be seeing a cardiologist on Tues. Praying that she'll be cooperative so that they can do whatever necessary checks on her.

home matters

Apart from looking after the kids as usual, I was kept more busy the past month as we were thinking more about our home (as we don't like the mess and would like to be more organised). We love our 4-room flat but now with 4 people in our family, our space requirements have increased (especially for laundry and we don't have a utility room/store room) and it has been a bit more time-consuming for all of us to share just 1 bathroom (as ours is the old flat model/smallest 4-room model so there's only 1 bathroom and toilet and they're quite narrow so there's still not enough space to bathe both kids together especially since Annette still has to be held by 1 person while the other one bathes her and there's only space for a very small sink in the toilet).

Thus we've been contemplating whether it makes more sense to renovate (to better utilise the space we have) or move to a bigger flat - with considerations about the renovation cost, rental prospects, loan amounts and investment issues, as well as moving matters. Quite mind-boggling. But after a long while of thinking it through and praying, we've decided to renovate our existing flat. We just need to move out for a few weeks but the prospect of packing and moving is quite daunting. Already the normal day-to-day care for the kids and housework is enough to keep us busy the whole day (and night). So praying that we'll be able to pack efficiently and organise things (including the renovation schedule) well.

the past few months

Haven't written updates for a while as we've been busy trying to find alternatives to avoid a muscle biopsy for Annette and also trying to clear up our place/think of renovation ideas/consider moving to a bigger place.

So we took her to see an osteopath who had helped a relative for her eczema allergies. He said Annette was sensitive to casein found in dairy products (which according to statistics is very common for Asians anyhow). So she's now on soya milk/goat's milk and it has helped reduced her bloatedness and her bowel movements are more regular. She's also gaining weight though still below the 3rd percentile. And she's able to walk short distances on her own now, praise be to God! (though she still lacks the confidence to do it all the time so she still often looks for support). We think that the muscle biopsy might put her off walking because of the pain as she already lacks the confidence so we'd probably wait till she's walking well before we make the decision (because the neurologist says it's the last and only step we'd need to take in order for them to be able to find out her condition).

Time has flown - It has been a year of watching over Annette to avoid any nasty falls. Thank God for Por Por who has been around all this while during play time for 1-2 hours to take her to her place or take her for a walk downstairs while I finish up on housework/prepare for meals - if not, Annette would keep on calling for my attention. Sam has also been a big help whenever no other adult is around. And there's also Nai Nai who comes over on 3 afternoons. I really should be thankful for all this help... however, it is still very difficult for me to spend time alone with Sam whereas I'm always spending time with Annette (especially when Sam's in school while Annette's having her nap) so it can get tough on Sam and I often get more impatient with Sam cos I expect her to be more independent... praying that I may be more patient and keep teaching Sam godly values.

Next stage of testing

Annette had an appointment with her doctor today to review her latest blood test results. We're thankful that she's put on weight (she's 8 kg now) and has been growing steadier so we didn't think we'd need to move on to further testing. Unfortunately her lactate levels still remain high, though thankfully not substantially high, but the doctor thinks it's time to do the more invasive testing - muscular and skin biopsy.

It's a day procedure but since she's still very young and has to undergo GA for the operation, she'll be admitted overnight for observation. From that sample, they'll do a few tests - one of which includes an enzyme test that will be sent to the US (and the cost of that test is about 800 USD and the courier charge is about 1500 SGD). She will have a small scar on her thigh in which the muscle will be taken from and will take a couple of days to recover fully from the operation.

The doctor has been suspecting that she has a mitochondria disorder (problems producing energy) though Annette's MRI scan isn't the typical type she has seen. And because she's still unable to stand on her own from a sitting position, it's indicative of some muscle problem. So hopefully these tests will be able to show a clearer picture of her condition.

However it seems that the eventual treatment will either be diet (high protein/fats) or vitamin supplements - which we had been trying since we suspected her failure to thrive more than 10 months ago - but it seemed that adding oil etc didn't seem to encourage Annette to eat more and her weight gain wasn't as good then compared to the recent past months. So we're wondering whether it's worthwhile to go through all this and end up back at square one because she might not be open to the treatment. Praying for wisdom...

Praying too that Annette will be fine in the long run because with high lactate levels, it might impede her growth and she might need to go for regular check-ups for her liver, hearing etc. Praying for God's strength to continue seeing us through this. That we'll also be able to look after Sammie with love and patience despite our energies being used up by Annette.