Since we took out the tube, we have been experiencing breakthrough upon breakthrough. The past 7 days hadn’t been easy because we were desperately trying to get baby to drink up but there was only just this much that he could manage or desire. His diapers were wet but just not wet enough. Of course I was worried when I saw how little pee pee he had. Barely one very very soiled diaper for the day! With KR’s difficulty in swallowing liquid as the main issue, drinking big quantities was a very far fetched and daunting vision. 

Everyday, all I could think of was how to get him to drink up more. Honestly, I questioned many times if I had really heard God right? With the crazy weather, hydration is just so important. I remembered on Day 2 KR did not pee from 12pm to 5:50pm. I was desperate. I told God, I am going to reinsert at the 6th hour mark cos I was crazily anxious.  At at 6pm, he peed. BIG *phiew*

I hung on to the 3rd day and the 4th …. on the 6th day, a mummy friend who is a medical doctor saw KR when we brought him to pick KX up from school. She candidly remarked that he was looking good but her daughter at his age was still drinking 800mls of EBM a day. It was not an unfamiliar piece of information but when I was reminded of it, the Mother me can’t help but to think why am I depriving my son of nutrition and water? Am I doing it all right? Did GOd really spoke to me? I started to doubt. Again. I walked into KR’s room and watched him napped that afternoon. As I prayed for him, I asked him, in my heart, “would u rather be well fed and nourished and live with a tube or would u rather be malnourished and live freely without one?” I can’t help but to tear a little to nap that day. 

Trust in the Lord … lean not on your own understanding… (Prov 3:5-6)

That anchoring scripture that made pull out the tube came back to my mind again and again. During snack time, I poured out 50ml of EBM and tried feeding him with a tub of purée. He was receptive! As he got a little suspicious of me trying to sneak milk into his mouth with the purée, this boy started shaking his head vigorously. It was at this moment that I decided to take out a piece of Plum teether (wafers) and see if he was keen to eat it with the milk. KR took the first bite and then kept opening his mouth for more. I dipped the wafer into the milk to soften and let him bite on it. And then in between give him spoonfuls of milk. It was a success!!! So I gathered that day that KR will only take in the liquid when he has some solids to chew on.  NO wonder we could ONLY achieve 20ml per day previously cos we gave liquid on its own. 

And I can definitely understand why cos he has never really drunk before. It’s such a foreign skill to him. His first actual oral experience was cereal eating. Prior to that, it’s pure tube feeding and very minimal milk dipping while feeding to help him make the associations between tube feeding and actual eating using the taste of milk, anyway. 

Looking back the past 1.5 week, KR has made phenomenal improvements. Just on day 1, KR has made a 6x improvement compared to when he had his tube on. He drank up 120ml of milk in his total liquid consumption for the day! 120ml may seemed very little but it’s an unexpected volume because We have never reached it before. The next few days, KR slowly increased in his oral liquid feeding and today he had achieved 240ml in a day. 

What helped? 

1. We fed frequently and small amounts 

2. We fed it with solids 

KR’s water consumption for the day has gradually increased over the 2 days even since we discovered the best way to feed him liquid is with the help of solids. His wet diapers have also increased and he is beginning to put on some weight. So so thankful 🙂 we are still working very hard to make sure baby takes about 400ml fluid orally. Since the Lord has told me to take out the tube, I believed he is going to continue to work the miracle; the impossibles which men has said, and to show He is God. 


And I have decided to… 

…pull out the tube.

For the past 2-3 months, KR has become even more aware of the NGTUbe been pulling out his NGTUbe. From once a week insertion to sometimes twice, thrice and there was once when we had to even insert thrice that day.

For the past week, KR will wake up without the tube. Which means, the moment he was conscious, he would attempt to remove it. And of course his daily practising has produced remarkable accuracy! One pull and the entire tube is out.

On 5th Oct 17, KR pulled out his tube when he woke up in the morning. That day the Lord spoke to me about the following:

1. Step out in faith

2. No boldness, no breakthrough

3. Prov 3:5-6

Honestly, I obeyed with trepidation. And I doubted if I had heard God right because, KR was only consuming 20ml of oral fluid a day for the past weeks and the benchmark the Therapists had set for him was 400ml of oral liquid consumption per day before the tube can be removed. In fact, that’s already a huge discount from the supposed 800ml a day consumption for babies his age. 20ml and to take the tube out? It’s beyond walking on waters, it’s walking on waters in the midst of a tsunami!!! What am I to do?

In obedience, I took out the tube.

Day 1.

The joy was bitter sweet when I bathed him cos I could wipe down his entire face without worrying to accidentally wipe the securing tapes off the tube.  And I could put my face close to his and kiss him anywhere without having a tube to think about. Today is so precious. Even it’s for one day, the stress and trepidation I have from worrying about getting him sufficiently hydrated and yet not cause any aspiration is worth it.

The 3 Tablespoons 

It’s been 7months since embarking on our journey to wean off the NGtube. It hasn’t been easy but I am proud to say that KR has established the 3 main meals in a day.

I was looking back at some videos and I can’t help but to thank God for seeing KR through the arduous journey of eating orally. Learning to feed by spoon is likened to someone who runs before learning to crawl. KR has never had any oral feeding experience til we started cereal feeding at month 6. He has never suckle and was trained with the spoon. The spoon is the mama’s bosom to this little buddy; the ONLY tool that we could use then, just to help him feed orally. It was tough.

We used to …

  • Dipped milk while tube feeding him to help him make associations
  • Massage his face before every feed to get him alert for food
  • Sing, dance and clown just to get him to eat… this is not the best way to feed actually. Cos it’s as though we are distracting him with an ipad during meal times. I should remain calm and quiet in order to give him time to process that food is in his mouth and hence he needs to chew and swallow
  • The countless “KR look at the spoon … ” “the spoon is coming.. ah, open your mouth.” “Ok, there is food in your mouth now, chew!” … rendition

After some months, the Therapists suggested inserting a G-tube (wrote more about it in my previous post) so that we could proceed with the palate operation however, the thought of putting him under the knife again stopped me. They think he will take another year before having his tube removed.

The Lord did his wonders as we continued to be diligent in all the facial and oral massages as well as enduring through all the slow and frustrating feeding sessions, trying our best to hit the 3 tablespoons of food. KR took 7 months to achieve 3 meals of solids a day and also 15-20mls of liquid feeds at one go.  We would then tube feed the rest of the milk.

Once again, we are one day day closer to a day without tubes.  Thank you, Jesus.

In the video above, KR finally enjoy putting a teether in his mouth. We made multiple attempts and this was a successful one! So thankful.

Persistence in Prayers

Heard a audio sermon this morning by P.Edmund Chan on ‘Persistent Prayers’. 

My takeaways: 

‘Persistence in Prayers’ is not about what I want, it’s about who God is and what He wants. 

Persistent prayers is a by product of faith. And that Faith is not believing in what God can give you, it’s believing in God, regardless. 

Luke 18.

Meeting Pastor J.

I want to quickly pen this down before the busyness of life writes over the limited RAM in my memory space. The Lord refreshed both LY and my spirit as we met Pastor J. Today.

Earlier this afternoon I called up a church to ask where I could get a book written by their pastor cos SKS ran out of them. The kind gentleman who spoke with me over the phone offered to bring the book home for me after learning that I actually lived quite near him. He only made himself known to me as J.

We had a few Watsapp exchanges and one of which was if I was keen to buy a book written by him. Instantaneously I agreed. I got curious about this author and I googled him. I found out that he is a pastor and has a prophetic ministry. Sincerely, I asked him to sign my book and half jokingly, I asked him to write a prophetic word for me.

When we met, he apologised politely for not being able to write a word of prophesy for me but kindly offered to say a short prayer for us. Of course, I was more than glad to have someone pray for me.

The prayers for us were short, each of us had a couple of lines of blessings. However, the prophetic words came in prose. He spoke of our pasts, who we are and what God was going to do in the future. Spot ON!

I was not expecting this and halfway through his prophesy, I thought I should really tape it down cos it’s way too long for me to remember. The 20 over minute session blessed both Sweetheart and I tremendously. They were words for the season and we cherished everyone of them.

What did I learn from this? This man, a stranger spoke so much about us in such details because we all served a God who knows us intimately. He was with us in our pasts, our current and will be with us in our future. God is Immanuel.

Shortly home, I received an audio file via Whatsapp … Pastor J. recorded what he said to us and sent the file over. It’s just an awesome feeling to be known by God.

Nothing is Impossible

Just when faith shook a little, a song came into mind this morning. In the evening, I blast my Phone with this same song on the YOUTUBE and sang my heart out when on my way to pick sweetheart up. With shouts of praise and intercession. The drive was liberating!

Nothing Is Impossible by Planetshaker

Chorus: Through You,

I can do anything,

I can do all things,

For it’s You who give me strength,

Nothing is impossible

Through You,

Blind eyes are opened,

Strongholds are broken,

I am living by faith,

Nothing is impossible!
Verse: I’m not gonna live by what I see,

I’m not gonna live by what I feel
Pre-chorus: Deep down I,

Know that You’re here with me

I know that, You can do anything
Bridge: I believe, I believe,

I believe, I believe in You

The Bak Choy (my humble crop) regrew without roots. Hear me shout, “NOTHING IS IMPOSSIBLE!”

Familiar Visitation

Ever since KR’s birth, I had gone out for altar call twice. First, was before he went for the PSARP operation and the altar call then, was for people who needed healing. The second, was just the Sunday that  past when a lady from Pastor Derek’s ministry gave a few word of knowledge. I responded to the word ‘Hope’. 

In this journey of  praying for healing for KR, there are 2 particular portions of scriptures that stood out at me when I read. 

1. The woman with the issue of blood (Luke 8:43-48) 

2. The man who was let down the roof (Luke 5:17-39)

How did these people receive healing? Two things struck me: 

1. Faith 

They were 100% sure Jesus could heal.

2. Desperation 

I believe it was faith that drove their desperation. They had no reservation in approaching God. They gave all they could. I could imagine the woman pressing in through the crowds, maybe even crawling and ignoring all the stares that could possibly be set on her, just to touch Jesus’ cloak. Similarly, the men who shamelessly broke through someone’s roof to lower their paralysed Friend. What drove such radical actions? It is the absolute belief that Jesus can heal! 

Now, as long as the altar call speaks to me, I would respond. For the past two altar calls, I obeyed and just went forward. Both, the sweet presence of God ministered to me. In tears, I just raised my numbing hands at the altar and invited the sweet Spirit of God to continue to touch me and move in my circumstances. Before making my petition, it was a pure sanctification moment. I stood there, in awe of God’s powerful presence while waiting for someone to pray for me. It was a very familiar visitation. These two visits made me recall the last time I responded to the altar. It brought me back to the days of my youth when the Lord will often (sometimes weekly) touched me as I worshipped Him. These years, I have been lukewarm in my walk with God. Too complacent at where I am in my spiritual walk. KR’s situation awoken my spirit man who was in slumber, he made me want to know and love God more. 

布娃娃 (The Ragdoll)

Today, KX brought home the last term’s work from school. When I was going through one of the Chinese booklets, I noticed her colouring had improved tremendously compared to the previous term.

However, as I flipped through the pages I can’t help but to notice the page which did not have a double star being awarded. It was the 布娃娃. KX did not colour her face unlike the rest of the pages. She coloured all the images well and was awarded double stars for them. When I asked KX why she did not colour the Ragdoll’s face, she replied, “If I do so, I can’t see her face!”

Honestly, I thought she was just being plain lazy before she explained herself. Boy! Was I ashamed for being so quick to judge.

The teacher probably thought the same as me or could be thinking that she had carelessly missed out the ‘face’, hence did not give her a double star  She would not have expected her to intentionally miss out colouring the face so that she could see the face clearer. And like me, she would probably be expecting the whole doll to be coloured.
Today, I rediscovered the importance of assessment for learning and not just assessment of learning.

I awarded a double star for her 布娃娃 and affirmed her that her rationale is acceptable. 🙂

Channel of Blessing

How does it feel to fight coughs, cold, conjunctivities and  congestions for 3 months? The word is CRAZY!

Beginning to lose steam and all positivity when it really seemed endless 😦 the bug just got nastier and it passed from one to another in the family. 3 months is really the longest I have ever fought! And I seriously hope it stays the longest. As a family, we have seen the Doctors multiple times for all our illnesses. The children have taken 2 doses of antibiotics and still, they are not 100% well! Sadly, KR’s surgery that was due this month had to be postponed too. 😦

While trying to meet the children’s countless needs and at the same time trying to recuperate to get better, what made me a happier person today was helping baby J.

This morning, I saw a FB post on the cleft support group. One Mother was asking for a Pigeon bottle with special teats for cleft newborns. Baby J was born with some birth complications and the Paed asked specifically for that bottle so that they could try weaning baby off the NGTUbe. Having a tube-fed baby made me extremely empathetic and I know exactly how anxious Baby J’s mama was feeling.  I recalled having a brand new bottle and managed to pass it to the Baby J’s papa that late morning.

That afternoon Baby J’s mama sent me a photo of her drinking milk from the bottle and the NGTUbe was taken off successfully. It has totally blessed my heart! 🙂

The generous will prosper; those who refresh others will themselves be refreshed.

Proverbs 11:25

Indeed, I was refreshed! I see this as an interesting way of God refreshing and strengthening me; not when my current situation is broken through but when another person’s is.

KR turns 1

Has it been a year? As with all babies, the days are long but the years are short. More so with KR cos we just have so much to do in a day with him. KR starts his day at 6am in the morning and that’s when my day begins too. Tube feedings, draining the colostomy bag, oral feedings (both milk and semi solids),  physiotherapies, reading books and flash cards take up most of KR’s time  in the day. In between, we do sneak in 15minute walk around the park or playground downstairs. On days when we need to go to the Hospitals then the luxury of having a nice morning stroll is scraped. 

Hence for KR, unlike the ordinary babies, his first month of birth was in KKH cos he just did his colostomy and he had difficulty weaning of the oxygen supply. The next 6months was a lot of visiting to the hospital for the various health problems he was born with. 

1. Cleft Lips and Palate surgeon, so far we had a very successful lip surgery and have one more palate surgery to go.

2. Orthodontist for cleft 

3. Urologist for his anorectal malformation. We did have completed 2 parts of 3 parts surgery. Would have gone for the closure of the colostomy this week if not for KR’s cough. 

4. Geneticist for Down Syndrome 

5. ENT cos of cleft and Down syndrome complications. We were thankful that KR was born to be able to hear when they did the SESS hearing assessment on him. However, cos KR had fluid built up due to his cleft and also lots of wax in the other ear, we had to insert a grommet for him to help with a better drainage. 

6. Cardiologist cos he was born with with an ASD and also a PDA. Thankfully, his PDA was closed in his second month! 

7. Respiratory specialist sees KR for his lungs condition since birth because of the haziness in his left lungs. 

8. We were introduced to the Gastro Doctors after his aspiration pneumonia episode when he was 3 month old. Thankfully, he no longer has reflux and has weaned off the Domperidone and Omeprazole. 

9. Aunty T, our speech therapist help KR with his swallowing and chewing while, 

10. Aunty S, our physiotherapist help KR work out his core so that he could eat better and also meet his milestones like any other babies. 

We decided not to see a neurologist regarding the small cysts in his brain because the Urologist thinks it small enough to be negligible. 

Yes! When KR was first borned, we were overwhelmed. The learning curve for me was very steep. I had to learn to insert there NGTUbe for him and also change his colostomy bag. Looking back, now I know why I am so tired when it hits 9pm at night. Cos there was really a lot to do in a day. 

Much as we were overwhelmed by care that KR requires, we were also overwhelmed by the faithfulness and goodness of the Lord for the past year.

Today, we celebrated Kai Rui’s first birthday and I remembered telling LY when we first found out about all his health complications and Syndrome, ‘let’s celebrate his life; his life has just began.’ 

Indeed, we celebrated his first smile, roll-over, sitting up, first mouthful of milk, congee … in fact, with greater joy than with our first. Not because he is more precious rather cos he has to work much, much harder to achieve milestones. 

We are thankful to the Lord for blessing us with KR, a life that’s so special and we know God is going to use him so mightily in the days to come. A few people whom I have spoken with reminded me “how far he has come.” And while doing up a video for him, I can’t help but be amazed at how hard he has fought and how well he has overcome! 

In the coming year, we claim greatness for him and continue to ask the Lord to restore him to health! Amen. 

Son, before you were born, one of the scriptures that the Lord has spoken to me is from Genesis 50:20. It’s mama’s prayer that through your life, it will lead to the saving of many! I pray for God to pour into your life and bless you with abundance! YOu were given sufficiency at birth, born 37 weeks + 1 day and 2.012kg. For that I am thankful because you were well formed and was not a premie. 

In the coming year, I pray for greatness for you. That your ASD will be closed in Jesus’ name, your colostomy closure surgery will be yet another success and the palate surgery can proceed smoothly with a quick wean off  for the NGTUbe! May the Lord grant you a big appetite for all food and you will grow healthier and stronger! May the Lord multiply your effort put in for every Physio session that you have so that  you will have a stronger core to hold yourself up and meet the milestones. Importantly, may you continue to be a 睿! Live up to your name, Son. To be sharp and alert in the last days and claim all the victories (凯) in the days to come. We love you and we love you very very much. Blessed Birthday. 

The strawberry shortcake from Chef Yamashita was a hit with everyone at the party. Thankful for Aunty Jeanie who came specially to drop off the No.1 candle and also a prezzie. 

I just gotta pull your hair, Jie jie

Blessed Birthday, Kai Rui