You little pooper, you pooped in your diapers during service, and mommy knew you were feeling uncomfy so out we went, to change your diapers!! Or else… the whole sanctuary would smell like your poo…:p You were still teeny weeny, fitting into preemie clothing. You could not fit into a regular new born’s clothes!

Korkor Mark and Myra jiejie love you lots! They are way older than you, they’re coming 18 and 7 respectively. Thats… many many days older than you!

Do you know why so many adults (Adults are big people) are around you? These are elders (Hehe, funny term I know. It’s like stating the obvious, DUH they’re old) in church praying for you. In this picture we have Uncle Supri, Aunty Mei, Uncle Ong, Pastor Ben, Aunty Margaret, Aunty Wilma, and Uncle he-whose-face-was-blocked. I think it could have been Uncle David. They were dedicating you to God. You were already so loved by everyone then!

We always knew you had jaundice, but we thought it was neonatal jaundice that would eventually go away.

Mommy and Bibik (Your loving caregiver) would bring you out to walk around the pool to get some sun!

After a few weeks, at about 2 months old, we realised that your jaundice level wasn’t going down. Your skin was tinged yellow, and your sclera was slightly yellow as well. You were truly a Chinese baby! Hahaha:) We called you a yellow banana/ dirty fellow, because of the saying “Yellow, yellow, Dirty Fellow!”

It got worrying, and mommy brought you to the doctor’s two days later, on a monday morning.

You were putting on some weight and growing some cheeks!! Chub chub:)

 Remember you went to see the doctor for your Jaundice? Well, that visit did not turn out so good, because the doctors said there was a possibility that you had an absent common bile duct connecting your small intestine and Mr Liver. Mr Liver faced a bit of a problem. You see, every day, Mr Liver works hard to produce a liquid called bile, which stays in Mr Gall Bladder’s house. When you drink milk, your little digestive system, Mr Small Intestine, has to drink bile for it to have the power to work hard for you to absorb nutrients from your milk. Unfortunately, doctors could not detect the road connecting Mr Gall bladder and Mr Small intestine even after several tests including iodine tests…:(

14 October 2014

You were at the Seit’s (My house!) for the second time, and we were having a simple gathering. You were sleeping soundly on the couch till you woke up and gazed at mommy, who walked off to talk to your Korkor Mark. Jiejie Myra and Micaela were trying to comfort you when you started crying. That was daddy patting you at the end!:)

A few days later, the doctors suspected that you had a condition called Biliary Atresia, and mommy and daddy were very, very sad and afraid. It meant that you had to go for an operation to create the road for Mr Gall Bladder and Small intestine to meet…

Everyone around you prayed hard, and we left you in the hands of Daddy God, while the surgeons (doctors with fluffy cloud caps) worked on your tiny body.

Thankfully, doctors found a tiny winding road, and it was not missing! It was just very, very narrow. I guess Mr Bile must be pretty fat because he couldn’t flow through it very well…

We thank God for that anyway:)

After your first surgery, you stayed in the Paediatric ward at the National University Hospital for 3-4 days. You stayed diagonally opposite a little friend called Si Xuan who had BA…She was a strong fighter like you.

You were all stitched up and happy, even though you felt pain.

Mommy, Uncle Arthur, Aunty Jess and I were talking about you while you baby-talked away:) We were saying that you resemble Jiejie Myra so much!

You were such a sweet boy:) This was me stroking your tiny hands!

You loved it when people talked to you or sang to you. Singing would nearly always calm you down, and I remember singing You are my sunshine to you, and you were laughing and smiling at me. You truly brighten up our lives!:) In this video, unfortunately, I was irritating your little cheek and singing to you, but it did not work:( You cried when I sang to you, it must have been really bad! Hahaha. Your korkor Matthew promptly walked over to kiss you:)

Beautiful November came around, and one Sabbath after lunch in church, mommy zipped you up in your hoodie to make you look like a rapper!! WHAZZUP DAWG!

 

You were lying on jiejie Micaela’s lap after crying, and we were trying to calm you down. I was singing Edelweiss to you, and this time, you were being so kind by tolerating my horrid singing. Aw love you baby, you’re the best kind of audience!!

Anthea Jiejie could not stand your cuteness. She HAD to kiss you. Jiejie Micaela was shaking you because you were way. TOO. CUTE:)

We slept over at your house on 6 November 2014, and on the morning of 7th November, we woke up to find you lying on your green bean quietly…so we decided to disturb you by making you work out!!:p

WELL DONE BABY!! you did a grand total of 3 sit-ups. Time for some baby pecs!! You were with me, Jiejie Anthea and Mark Korkor! *Gasp* did you hear that? Mark korkor called you a BLOB. OF. FATS.

LETS BEAT HIM UP!!! (hehe but it’s kind of true…) you were the cutest lump of fats:)

It was 7 November, 2014. We were sticking our tongues out at you and you mimicked us! Such a smart little baby! Uncle Abraham used to call Myra Jiejie “Little Professor” when she was younger. You shall be TINY professor!:) Look at you smile when Bob the Belly was tickled!!!

Exercising your little hands…:D

Whenever you slept with your hands next to your head, and your little feet tucked in like in this picture, you would remind me of an odd-shaped diamond 🙂 Slightly pointy top and bottom! That checkered pillow of yours is always there with you:) Mommy always puts it on you to let you sleep securely, and soundly.

We were extremely reluctant to let your family leave for Adelaide, and this was our final meeting at my house, before everyone got busy with packing everything that was left!:) You, baby max, were packing….packing…more milk in your tum tum!!!!! hehehe. you were a milk monster, drinking every hour/ every two hours!

Then 14 December 2014 arrived, and that was the day your family would migrate to Adelaide. It was a really, really sad day, but you did not quite know what was going on! A horde of people (that means, a big big group of people, like way bigger than daddy and mommy’s bed) came to send all of you off. You were going back to where you were born, Aussie boy!

Hmmm, oh yes, a selfie means…you use a camera (a box-like thing that takes pictures) to take a photo of yourself! A wefie means you take it with another person:)

Your Daddy God sent His only son Jesus to Earth to die for all of our bad deeds! Instead of putting us all in naughty corners, we are free to run around because Jesus died for you, me, daddy, mommy, korkor, jiejie and everybuddy else!!!

30 December 2014 – Your Bilirubin level was at 401.

Your Bilirubin level went up to 426:(

It was 7th January, 2015. You were so chatty on this night before bed, smiling at mommy and asking her how her day was! “Grgugrlll!!” Your smile melts the hearts of many, baby Max!

Your bilirubin level increased progressively and it went up to 449 today.

Apparently, you look a lot like korkor Mark when he was little, and we always tell him that you were gonna be more handsome than him! He gladly loses to you:)

14 January 2015 – New milestone achieved!! You could roll over now:) Rolly Polly Max!!! Well done baby!

 

14 January 2015 – You were playing with your little ear and shrieking at mommy:)

YES! she puts you in a tote bag and carries you like a hanging weight :’) HAHAHA. You would be the cutest doll anyone could ever buy at a Coles or Woolworths!!

Here’s Popo playing with you! You looked so excited:)

OOO, let me explain, Skype is when you call someone in another country and you can see their faces on a rectangle, called a laptop screen!!!

All this while, you had to take multi-vitamins and yucky medicine via a syringe, every 3 hours! Mommy would feed you religiously and make sure you had your vitamins.

On behalf of you, mommy, Jiejie Myra and Korkor Matthew responded to my comment via this video! Are you a farmer maxy? Naaawwww, you’re an Aussie boy!!

19 January 2015 – You took a genetic test and your blood sample was sent to the USA to determine what your condition was. Your Bilirubin level was at 477. Mommy said that despite this, you were a “happy chubby baby”!!!

30 January 2015 – Your Bilirubin level skyrocketed to 620. Not too good:(

The doctor said that you might need a liver transplant.

1 February 2015 – Korkor Marcel was feeling bored at home, so he carried you around the house and made you do funny little tricks!! He made a blanket cave and brought you into the cave:) It was darrrrrk, and  scaaaryyyyy, so Korkor Marcel carried you out! Who likes living in darkness anyway?

2 February 2015 – Your nose started bleeding and your stool colour changed. You were hospitalised and you needed a blood transfusion. At this point, your bilirubin level was at 650, and your hemoglobin level dropped from 90 to 77. The doctors said that you have problems absorbing Mr Vitamin K, so your blood could not clot.

Mommy was scared and worried for you, but you came out of it happier!

4 February 2015 – Doctors said that you had to drink formula milk with medium chain triglycerides, instead of mommy’s milk!! You did not like it very much as you cried:( MOMMY’S DA BEST!

Oh, yes. A transplant is like… an exchange! Its like when you give mommy back your empty milk bottle because it is no longer useful to you…and you want a new, full one that is useful!! You would have to exchange old Mr Liver away for new Mr Liver!

Mommy said you were growing well anyway:) We thank God for that!

12 February 2015 – You woke up with an eye infection, blocked nose and cough, but throughout the day, you got better and was cheerful!! Good baby!

Your Bilirubin level increased progressively, and everyone got really worried as it climbed from to 720 on 13 February. The doctors suspected that you had either PFIC, or Alagille Syndrome, which you were eventually diagnosed with. Your little body could not absorb vitamins such as vitamin K, A, D and E, and that made it difficult for your blood to clot.

It was confirmed that you needed a liver transplant, and Korkor Mark said he would definitely give you part of his, without hesitation, even if he has to retain in J2! He loves you so so much baby Max!

Mommy said you were very alert and cheerful today!

17 February 2015 – Mommy made a trip to Melbourne with you to see the gastro team to plan for your liver transplant.

You looked upset because the nurses poked your hands three times to find your vein. Mommy called you her “poor fat boy”.

It was a very depressing and difficult period of time for mommy and you. It was your first Chinese New Year, and you had to spend it in hospital:(

You came back from Melbourne and started on solids!!

It was your first time being fed with oats and you obviously did not like it. Mmmm mommy’s da best.

Korkor Matthew cheering you on and telling you that oats are yummy! Everyone was watching you eat:)

Daddy was playing with you and you were smiling at him so happily!

The cardio anesthetist said that your left heart artery had some tightness  which might affect your liver transplant… A heart is sized like your little fist, except it goes LUBDUB- LUBDUB! and helps you to stay alive!:D

27 February 2015 – You were admitted to the hospital in Adelaide and put in ICU as you could not pee. You had to fast 😦 That meant no milk…Awww man… 😥

The doctors decided to put a PICC line into you, to make it easier for blood to be drawn from your little body.

1 March 2015 – Your PICC line started bleeding the very next day, requiring yet another blood transfusion. You had to fly to Melbourne with mommy and daddy within the next 24 hours on a med jet. It was really scary for everyone.

On your way to Melbourne on the Med Jet, you vomited blood, and was rushed back to the pediatric ICU in Adelaide. The doctors found that you were bleeding from your stomach and lungs.

They tried their best to save you, and the whole church continued to pray fervently for you.

Thankfully, after a very tough fight, your condition stabilised!!! PHEW. We’d nearly lost you:( You were heavily sedated. That means that you could not wake up whenever you wanted. You were asleep the whoooole time. Mr Lungs was weak and he could not work, so Mr Ventilator took over and you were on 100% Oxygen support.

2 March 2015 – The ICU team tried to drain out the blood from Mr Lung’s body and they had to give Mr Kidneys dialysis!! That means that Mr Kidneys took a break and Dorothy the Dialysis machine helped you to chase away excess pee and water out of your body.

You fought really hard baby max! We were praying for your condition to be stabilised, for you to be well enough for a liver transplant in Melbourne. Mommy and daddy never left your side, and you were a good boy by fighting, fighting, and fighting!

After Mr Lungs got bandaged up and stopped bleeding, your oxygen support level was reduced to 85%.

3 March 2015 – Unfortunately, Mr Lungs started bleeding again, and doctors had to try to clot your blood. We needed God’s intervention very urgently!

Our prayers were answered when it stopped a few hours later, and mommy touched you and you opened your eyes 🙂 Your oxygen level was lowered again to 80%!

4 March 2015 – God kept you safe and protected throughout the night, and your condition improved slowly, with no internal bleeding and you responded well to treatment and dialysis.

For you to go to Melbourne for transplant, your oxygen level had to be lowered to 40%.

5 March 2015 – In the afternoon, your breathing went down a little, and a chest x-ray showed that you had water in it. NAUGHTY Mr Lungs!

6 March 2015 – You were blessed with angelic nurses, because you are a little angel yourself! They started a little journal for you!

You were still fighting, and fighting, and daddy God was watching over you.

6 March 2015 – Your condition was stable and you were able to hold your oxygen level well without the Ventilator! Your oxygen dependency dropped to 60%, and we expected you to keep getting better. We thanked God for every little improvement. Did you know that many many people prayed for you, baby Max? Many jiejies and korkors too!!! in Australia, Singapore, UK. etc. Everyone wants to pray for you!

7 March 2015 – Your lungs started bleeding again, to our dismay:( You were sent for a chest X-ray, and your blood pressure dropped drastically. You were too weak by now, and everyone was afraid that you would go home to Daddy God now…

It was a Sabbath morning, and all your Jiejies and Korkors, including Michelle Jiejie, Melissa Jiejie, Uncle Kenny and Aunty Gwen, rushed down to the ICU to see you. Marcel Korkor skyped Mark korkor and the Seits in Singapore, and we saw you fighting hard during your final hours. Daddy, mommy, jiejie Myra, korkor Marcel, korkor Matthew, and jiejie Micaela were holding your hand and calling your name.

They were kissing you, and holding you tight. They didn’t want to let go, and it was hard for us to watch you writhing in pain over Skype. Everyone sobbed as you slipped away, not because you gave up, but because daddy God didn’t want you to go through the pain any longer.

He loves you so much, and he knew you had enough. He knew you were a tough, hardy little cookie.

 As we sat in church waiting for updates from daddy, we were hoping for the best, but deep inside, we knew that you would live with too much physical pain if you had pulled through.

At 11.40am on 7 March, 2015, you left us peacefully, with everyone who loved you by your side, and those who could not, grieved from afar. It is the most painful event for many of us to date, and Daddy, mommy, korkors and jiejies love you more than you can ever imagine. Your soul is now taken care of by Daddy God. Everything reminds us of you, you’re the little angel who will live in our hearts forever.

You’ll always be the strongest baby I know, and the most persevering fighter. We know that God’s will for you is sovereign, and He had a great purpose for your 7 month existence.

I love you so much Baby Max!

This isn’t goodbye.

We will see you again in heaven, with a brand new body, without a single defect. We will play with you on fresh meadows and at rainbow ends. We will carry you and dance with you all day long, because we would have all of eternity with each other. We will hop from planet to planet, and twirl on little stars. We will slide down the milky way and make new friends on the moon. Daddy and mommy cannot wait to see you again, baby Max. Korkor and Jiejie are waiting eagerly for that day to come, and when that day comes, you will also see every single person who prayed for you, and you would think you’re a superstar.

Don’t get too cocky!:p

Daddy’s was in purple, Mommy’s in yellow, Mark Korkor’s in red, Marcel korkor’s in green, Micaela jiejie’s in grey, Myra jiejie’s in maroon, Matthew korkor’s in red and yours in orange!!

The lovely nurses and medical team at the Women’s and Children’s Hospital also created clay models of your chubby little hands and feet for daddy and mommy as keepsake:) You were still a round, chubby little boy, despite your sickness!

Right now, as you are resting peacefully, Da jiujiu, Xiao Jiujiu, Jiejie Bel, and Aunty Jess are there in Adelaide to be with daddy, mommy, and all your siblings.

The loving members of Prospect church in Adelaide held a memorial service for you, and your xiao Jiujiu compiled videos of the service below:)

“I have fought the good fight, I have finished the race, I have kept the faith.” – 2 Timothy 4:7

We’re proud of you.

Goodnight baby Max, sleep tight, love.

Signing off,

Clara Jiejie