Dear all, I sincerely thank you for keeping track of Lizzie's progress and tuning in to this website every now and then to see how little Miss-chievous is doing.

We brought Lizzie to see her cardiologist and geneticist yesterday. There are some good news that Lizzie is developing well and slowly catching with her peers in her physical development. However, it seems that her O2 level has dipped significantly to 62%. The cardiologist did a scan on Lizzie yesterday and thinks that her shunt may be getting too small for her. There is a likelihood that she may need to have another shunt on the left side. Her cardiologist will be discussing her case with the team, including Lizzie's surgeon and make a decision whether to proceed with the surgery and when.

We were very disheartened at the prospect of this cheerful, innocent little girl going for another surgery. We hate to think that the surgery will dampen her cheerful spirit. We were brought back to the days when we watched her day and night in NICU and agonizing over her condition. If only we can take her place for this suffering.

We desperately ask for your prayers for Lizzie. We want God to heal her completely so that there is no necessity for this coming surgery or any future surgeries. By faith, we know this is possible with God. By faith, we also know that God hears our prayers. By faith, we know God will heal her. We ask for your prayers alongside so that our prayers will hasten God's healing for Lizzie.

We have also claimed on God's promises for Lizzie's healing:

Psalm 34:10 - those who seek the Lord lack no good thing.
2 Kings 20:5 - I have heard your prayers and seen your tears; I will heal you.
2 Chronicles 7:14 - If My people, who are called My Name, will humble themselves and pray and seek My face and turn from their wicked ways, then will I hear from Heaven and will forgive their sin and heal their land.
Jeremiah 17:14 - Heal me, O Lord, and I will be healed; Save me and I will be saved, for You are the One I praise.
Jeremiah 30:17 - But I will restore you to health and heal your wounds, declares the Lord.
Psalm 145:18 - The Lord is near to all who call on Him, to all who call on Him in truth.
Hebrew 13:5 - Never will I leave, never will I forsake you.

Thank you for your prayers. We are deeply touched.

God bless!

At home with Lizzie

Dear friends,

This update comes just shortly after Lizzie turned 13months old!We reached a couple more milestones this month.

Favourite games she likes to play are 'row,row, row your boat', peekaboo, and bouncing on mummy and daddy's tummies playing riding horsey - always gives her the giggles

In the morning, when my Mum-in-law takes over 'Lizzie duty', she actually guides my MIL over to the DVD player and starts gesturing and mumbling for her favourite music VCD to be played -Sesame Street Beginnings- Lizzie loves this disc, some really nice songs in there. Another good one is the Praise Baby volume 1 worship music VCD.

Lizzie sticking her tongue out

(shes been doing it a lot lately...)

Lizzie enjoying a car-ride

"Cool" Lizzie

Lizzie can brush her own hair, brush mummy's hair, and brush Elmo's fur. She has been able to put her blocks into its container, and bring them out again when we ask her to.

The other day I asked Lizzie, who was holding a block - to "give it to Mummy". She then handed me the block right into my open hand.
When she picked up a second block, again I said to her "give it to Mummy" - this time Lizzie chucked the block as hard as she could to the other side of the room, looked at me and gave a mischevious grin and then giggled hysterically. Hmmmm.

Cheeky-monkey

Lizzie is pretty good at imitating what us adults do everyday, and babbles non stop to herself, her toys and anyone else willing to listen to what she has to say.

As for her first word (no, it wasn't Elmo) - Im not really sure what counts as a first word.
A whole real grownup word? or baby's abbreviation of a word?
So far I think she started to say "Dada" a couple of weeks ago, but has since stopped.
When I picked her up last week, she breathed "Mama" into my face. But alas that was also a one-off. I guess impatient Mummy and hopeful Daddy will have to wait a little longer.

Last month Lizzie learnt how to do some hand signs, but now even "fishy-fishy" hardly makes an appearance. I read in a parenting book that this is not a sign that the infant has forgotten it, but rather, is moving on to bigger and better things.
Apparently this is true, or maybe I think she may have gotten sick of us asking her to do the cute hand signs repeatedly just to entertain us adults. Our girl is no performing monkey!

A really cute thing happened the other week when we were out, a little girl has having her top changed by her mum, and Lizzie took one look at her and started doing the sign for "shame-shame" - you know the one we all learnt as kids, where you stroke your cheek with a finger?
So Lizzie saw this topless kid, and spontaneously did the sign.
Apparently my mum-in-law had taught her this one as well.

Smiling for the camera

We are STILL waiting for teeth to come out - lil bub didn't get to gum her 1st birthday cake either (I'm still putting a ban on refined sugar and empty carbs).

Lizzie is continuing to grow and feed well - she's having her regular three solid meals a day, and still drinking loads of milk. Those chubby cheeks seem to be reaching their maximum potential! Lizzie also seems to have favoured crawling over cruising, probably because she's more stable on her fours, and can get around faster.

Next month we'll be seeing her cardiothoracic surgeon, her physiotherapist, her cardiologist and her paediatrician, so we'll keep you updated then.

Till next month. God Bless you!

Elaine

Happy 1st birthday Lizzie!

Dear friends,

I've not been able to blog for a while - we've had our hands full with Lizzie ever since her illness in July, but thank God, she recovered quickly and she's been growing in leaps and bounds.

After her recovery, our girl has mastered crawling and standing up at her cot - she is pretty steady, though still loses her balance at times.

We've not given up on the babysigns yet - Lizzie can now do "fishy-fishy", "milk-milk", clapping, waving, kissing, "hello mummy"(She has been observing us using the phone, and started copying us one day, holding her hand up to her ear as if answering the phone. She even tried answering a remote control once! Har har!)

"No this is not a potty - I'm sitting on cousin Shana's BUMBO chair!"

Lizzie's been giving us loads of joy and laughter at home, and we're watching her slowly transform from a helpless baby into a strong, active, opinionated, loud and playful toddler.

'My pal Daddy'

'Me & Mummy'

On August 9 we celebrated Lizzie's 1st birthday with close family, friends, and Lizzie's pals - Anisha, cousin Shana, and newborn baby Charis.
Lizzie was so excited and happy to receive so much attention, she didn't want to sleep at all that night! Farewell to Anisha, (Mum)Thushanti and (Dad)Chandana - hope you guys are enjoying Melbourne!
Thankyou everyone for all the wonderful birthday gifts.

'One, two, three - blow!!"

(L to R)Babies Anisha, Lizzie & Shana

Mummies Thushanthi, Elaine & Sheryl

(L to R) Babies Charis, Anisha & Lizzie

Mummies Belinda, Thushanti & Elaine

Lizzie sitting ON her presents!

Shortly before her birthday, my mum in law and Simon brought Lizzie down to see the physiotherapist (aka 'naughty-uncle'). We were thrilled to be told that Lizzie is doing extremely well - so much so, that she no longer requires monthly physiotherapy! Her back and chest muscles are strengthening well, and she is making good progress with her cruising and crawling. The doctors want to see her again in October, and possibly start planning for cardiac catheterization. We are asking for your prayers for a creative miracle for Lizzie, as we continue to believe and trust in the Lord God Jesus Christ. God bless you all,

Elaine

Lizzie in hospital

Dear friends,

We just want to update you on the last 48 hours - our little girl, was down with a very high fever on Thursday night, she threw up for more than an hour straight. Phelgm was threatening to block her airway - and she was pale and breathless. We were alarmed to see that her hands and feet were turning blue, and her pulse-oximeter showed that she was dipping to below 50% oxygen levels. We rushed her down to the A+E at NUH late on Thursday night, and was admitted to ward 48.

Lizzie with high fever on Thursday night

The diagnosis was Viral Bronchiolitis. Thank God, the chest x-ray showed no sign of pneumonia.

That night was extremely tiring and stressful - Simon and I stayed over with her, but didn't have much rest, as parents have to look after their own kids in the ward.
Lizzie had two sessions of suctioning down her throat and nose, and was put on oxygen and monitored overnight.

Her oxygen picked up, and stabilized by Friday morning, though her feeds were down, and it was a struggle to feed her medication (she is currently on 6 different meds) as Lizzie would refuse to take any of her fever medication due to the strong taste. It took as long as 2 1/2 hours just to feed one dose. Because of her refusal to drink, the risk of dehydration would have the potential to cause blockage of her heart shunt. The nurses almost had to insert a nasogastric tube to feed her - but just at the very last minute, Lizzie drank down her medicines.

By Friday late afternoon, we made the decision to discharge her, as we all were not getting enough rest, with all the noise from other crying children, and the constant disruptions by students trying to examine her (Lizzie was something of a star attraction with groups of med students and trainee specialists on rounds because of her complicated medical history, they all wanted to hear what a BT shunt with persistant PDA sounded like).

Lizzie on Friday morning (oxygen levels stable)

For those of you who have never stayed in a normal paediatric ward - basically Simon and I were expected to care for Lizzie ourselves - change her, feed her, give medication, monitor oxygen, give oxygen facemask, spongebathe her etc. The nurses are only there to measure out the meds, mix the milk formula, take her temperature and change her bedsheet!!!

The critical issue keeping Lizzie warded was her oxygen level, and her ability to drink milk/meds. By the second day, her oxygen was stablized, and we were successful in keeping her hydrated - Prof Quek (Lizzie's cardiologist) was agreeable to let us bring her home to care for her ther (his reason was that he knew we have all the oxygen and equiptment at home, and we have the ability and enough experience to care for her safely at home). We were very grateful to be able to discharge by 5pm yesterday, but promised to bring her back if there were any complications.

It was so good to be home, in our own bed. Lizzie could sense this and immediately relaxed and slept in her cot peacefully. She would wake occasionally to cough out phlegm or indicate to us her throat/nose is blocked and we have been suctioning her airways quite successfully on our own. I am glad we made the decision to come home, as we were basically doing the exact same thing in hospital, only paying ward charges, and sleeping on creaky hammocks and plastic chairs.
Now I'm not saying that it is pointless to go to the hospital, as it was necessary for her to be warded when she took a turn for the worst on Thursday night. However, once she stabilized, it makes more sense to care for her at home.

Thank you to all our friends, family and spiritual family (ELIM family&Ebenezer, Gospelighters, Maria & your church) who supported us in prayer and gave us verses to meditate on. For reminding us that we ought to rejoice and delight in our trials and suffering, and continue to give thanks to the one who made us, is sustaining us, and who heals us.

Just want to share some of the verses I received (Thanks Liz and Tracy!)
"I will praise God's name in song and glorify him with thanksgiving" Ps 69:30
"Though I walk in the midst of trouble you preserve my life..." Ps 138:7
"For I am the Lord your God who takes hold of your right hand and says to you, Do not fear; I will help you" Isa 41:13

We want to give thanks to God for all the docs and nurses who helped us and even gave us a word of reassurance when they saw our distress.

We want to ask that you continue to uphold our little girl in prayer, as she is still sick and needs to be closely monitored and cared for. Please pray for wisdom and guidance for us at this time.

I have to say, that Lizzie was an extremely good girl through this whole ordeal. She didn't cry or fuss (only when she was vomiting or couldn't breathe). She slept well, and tried to drink her milk when she could breathe). We continue to give thanks to the Lord for her, and for her temperament, as the situation could have been a lot more stressful with an uncooperative child.

Just as my mother in-law always says "when a child is sick, after they recover - they will become smarter and learn new things" *(easily dismissed as an old-wives' tale, I am happy to report that this is true - Lizzie mastered waving bye-bye at the doctors, and learnt to clap her hands by Friday morning!!!).

God bless,
Elaine

Lizzie is 11 months old!

Dearest friends,

Lizzie is now 11 months old, and she's been growing and developing very quickly into an active and mischieveous toddler.
The doctors have informed us that they want to do a cardiac catheterization procedure shortly after her 1st birthday. The purpose is to determine whether she needs to have her shunt replaced so soon, or even for total correction. However, the original target, was for her to be at least 20kg before the open heart surgery. Simon and I are still praying for God's intervention, that Lizzie will grow stronger day by day, and that she will not have to go through anymore operations. We will keep you all updated as the time draws near. Thank you to all our friends and family for the prayers and support - we appreciate every single one!

Lizzie attempting to crawl

Though she's been gaining weight steadily, and her hair developing lovely curls around the nape of her neck - she's still sans teeth! Developmentally she's on track, and she's started to cruise, holding on to the coffeetable, and edge of the playpen. Lizzie often tries to crawl, but after getting up on her fours, she'd change her mind and end up rolling over onto her back.

"Hee"

"I'm a big girl now"

We give thanks to God daily, for her cheerful nature - this girl loves a good giggle, and seems to really enjoy listening to music. When she hears a rockin' beat - she loves to jump up and down, and wiggle her body around, flapping her arms and shouting out loud!

Munching on the cot

"I can pull myself up now!"

Lizzie also loves to interact with other children and toddlers - she would stare in facination at other crying babies in church. The other week at Lighthouse, one toddler came over and started playing with Lizzie's pram toy - to which Lizzie gave a long stare, and batted the intruding hands away, much to our amusement. Hopefully she will learn to share her toys!

"What r u lookin' at?"

A visit to the physiotherapist last Monday was reassuring, as Lizzie's physiotherapist informed us that he was very pleased with her progress. Her upper arm muscles are a little more developed, and her back and chest muscles have improved as well. Thank God! all those exercises have paid off - though Lizzie might not think so!
For those of you who wonder what kind of physiotherapy Lizzie has to go through - mainly a series of exercises and postures to help strengthen core and limb muscles, and to improve her overall stamina and cardiovascular health. Regular physiotherapy also help's Lizzie to catch up in terms of her physical growth and development. We managed to capture a few pics during the recent session as you can see below...

At the start of physio session- all smiles

"Hey, playing with cars on my knees is fun"

"Who's that cute baby? "

"I hate this part!!"

"No, I mean I hate THIS part"

" I want my DADDY!!"

Lizzie being cuddled on Daddy's shoulder post physio :)

In the past few months Lizzie has been on oral lactulose (Lactus) twice a day, and this has really helped to regulate her bowel movements. We're still slowly weaning her off it, hopefully with enough fruits and veges we can stop the Lactus eventually.

Next month we'll be celebrating the nation's and Lizzie's first birthday - so until then...
God Bless!

Elaine

Lizzie goes swimming!

Dear friends,
As you can see, Lizzie's been doing so well that we decided to bring her out for a swim! Yesterday we brought her to an indoor pool - the water was warm, and Lizzie was so curious and excited - she couldn't wait to get in.

Her first time in a swimming pool was enjoyable for all of us - we brought her rubber duckies that can squirt water, and some pails to play - Lizzie was so excitedly splashing that she didn't even mind when she splashed herself in the face! (Recommended reading for infant swimming- "Learn to swim" by Rob & Kathy McKay) We tried some simple water-confidence exercises, including passing between mummy and daddy. Lizzie discovered that she could float and kept trying to float on her belly.

Lizzie prefers 'belly time' in water

Check out those baby-abs!

Lizzie & Daddy

Also, we are pleased to announce, that Lizzie is no longer suffering the effects of constipation. She's been on regular 'Lactus' for the past 2 weeks, and she's been having normal bowel movements every day now. We'll be tapering her dosage 0.5ml each day at a time and hopefully will be able to withdraw it gradually. Thank you for all your advice and prayers.

Its only 3 days away from Lizzie's 10th month birthday, and already she's pretty good at self-feeding baby biscuits. Sometimes big chunks break off, and she chokes easily on them, but usually, mummy, daddy or grandma are around to swiftly remove them before it happens.

Lizzie sneaking a biscuit

Oh no! I'm caught!

Can I have some more?

We've introduced a bedtime routine, in the hopes that Lizzie will not only get to sleep early, but sleep through. The good news is, Lizzie is getting to bed by 8pm every night, but unfortunately still wakes up at regular intervals throughout the night.

We discovered a great invention - the nighttime nappy!!

Wow this thing can really absorb. We use the Fitti nighttime nappy on Lizzie, and it really does help her sleep undisturbed by a wet nappy. Brilliant.

Lizzie's next appointment with her cardiologist is coming up this Monday. We don't know if any scan is scheduled, but please continue to pray for Lizzie, that we will have our prayers answered.

We ask for healing for our baby girl - for complete restoration of her chromosomes and heart defects. As we continue to pray in faith, we want to thank God for sustaining and strengthening her, and for making her such a joyful child.

God Bless,

Elaine

Home-movies

Dear friends,

Since the beginning of May, Lizzie has been able to pull herself up to stand next to her cot. She's also been spoon feeding for the last 4 months- and she loves it! Hope you enjoy these videos as much as we did :)

God Bless,

Elaine

Lizzie stands!

Spoon feeding

Lizzie-tiger pounces on crunchy bag

Giggling baby

Growin' Up

Dear friends,

Lizzie is now nine months old! We can hardly believe how time has flown. Last week's visit to the docs, Lizzie weighed in at 7.22kg - no wonder we've been feeling the strain on our arm when we carry her. She's been having quite a bit of phlegm and gets choked on it easily. It's pretty nerve wracking when we're out in public and your baby starts choking, and vomits, but thank God, every time it happens, she is able to recover quickly, and is back to her cheerful self again in no time.

Thankyou Aunty Yvonne for my lovely backpack!

Recently we had a scary episode in when we were out, and her airway actually got blocked, and she started turning blue. We prayed and managed to clear it. But on the way home, on the express-way, she started gagging again - we couldn't stop the car, as traffic was heavy, and we were on the middle lane - so all we could do was call out to Jesus.

Once again the Lord restored her, and within seconds she began breathing on her own.
Thank God!

On the 6th of April, Lizzie managed to turn over fully onto her belly, and pull her arms out from under her body to support herself (previously she wasn't able to do this, and typically she would roll over, trap her arms under herself, and start calling for help!).

Lizzie has started to pull herself to standing position - her favourite place is at the side of the cot. With a little support on the sides, she's able to stand!

Can't wait to have teeth!

Our girl is becoming real playful (or a terror - when mum and dad are sleep-deprived), just last night the thing that amused her the most was her toy 'turtle-friend' with another toy placed on his head. Everytime the smaller toy dropped off her turtle's head, she would giggle like it was the funniest thing in the world. She also insists on having her own way - wanting to be carried on demand, refusing to spend a single second on her belly (hence the need for 'belly time' everyday), choosing only certain toys to play with, and refusing to take her medicines.

But all in all, it is extremely fun to watch her interact with her toys and people around her.
Even in church, she has taken to watching the older kids running around, gets very excited and 'calls out' to them.

Pouty-pout-pout

We even discovered other people teaching ASL to their toddlers - one little girl signed 'please' and pointed to Lizzie's caterpillar. After letting her play with it, she signed 'thank you'.
Lizzie can sign 'milk-milk' and 'no more', so we're still working on 'mummy' and 'daddy'.

She still keeps saying "Mam-mam" or "Mum-mum" and has the uncanny knack for shaking her head "no" at the right times (like, when we ask her "is Lizzie a naughty girl?")

Playing with her favourite balloon

Now we are full-swing into feeding solids, and she just loves her apple/pear/peach/name a fruit with cereal. Grandma Molly's been making home cooked baby food for Lizzie too, and she seems to love sweet potato and mixed veg.

Serious spoon action

Distracted again!

All done! BURP!

We discovered that rice cereal causes more constipation, because of lower fibre content, so we switched to oat/wheat cereal and it seems to have contributed to the overall improved condition.

Until.... she got constipated again!!!

Now Lizzie is on daily 'Lactus' and we're praying that this will be for the short term, as we want her to 'go' naturally, and well... she's just not liking the taste of it, and putting up fight everytime we try to medicate her.

We finally went to see Dr Marion Aw, a paediatric gastroenterologist, to find out what was going on. She found that a tear was causing Lizzie pain, and made her scared of straining. She suggested we increase the 'Lactus' dose, and continue using it until Lizzie was comfortable with normal bowel movements again. After changing her formula more than four times - we tried out Mamil, Similac, Enfalac A+, Promil - and finally settled on NAN (no palm oil). Still no conclusion!! We're running out of formula to try :(

Other mums and dads out there - if you've got advice with regards to formula we welcome your comments!

In the meantime, please continue to pray for our little girl, that her heart, pulmonary artery and calcium levels will be restored, and that she will have no more constipation, or blockage of her airway.

As we dedicate this blog to our loving Father in heaven, we want to acknowlege His presence in Lizzie's life, in keeping her safe, and in limiting the defects of Di Georges Syndrome to her calcium deficiency and congenital heart defects.

As you can see, she's a happy, healthy, thriving little girl, and she's bringing us joy every single day.

Thank you for your prayers and God Bless,

Elaine