More Miracles - Part 2

Given Little Faith's relatively subtle features of down syndrome, and my young age, the Down Syndrome specialists was open to performing a genetic test to verify the diagnosis. 

It turned out to be positive, correlating with previous tests. 

Some people may say that I'm really unlucky - Still relatively young and shouldn't have been at high risk of having a child with Down Syndrome. 

Yet it happened.

Maybe, we were specially chosen for this - to be parents of Little Faith. 

But, being able to come to this level of acceptance is a miracle in itself.

To be honest, up to the time when genetic tests confirmed her diagnosis, I was still hoping for a miracle - that the antenatal tests were wrong. When she was born, her physical and developmental features were so subtle - she was so bright and interactive - that I had a hope that perhaps there must have been some mistake. 

If you know me, I'm a perfectionist at work, sports and life and always aim for excellence by secular standards. To know that my child whom I have great aspirations for has down syndrome - a condition of low IQ and many physical challenges is very hard for me to accept. 

 

I would have thought that I'd breakdown when confirmatory results were out. On the contrary, it gave me closure and peace. 

Latest events reminded that none of these happened by coincidence. The fact that I'm relatively young and still got hit anyway - it was a special arrangement. 

God wanted me to have a down syndrome baby. 

The road ahead will not be easy. But that knowledge has given me the determination to walk on by Faith - not by fear or worries.

And so, I suppose it is time I begin to wholeheartedly embrace this special condition of Little Faith - watching how she grows and holding my breath at every milestone, witnessing God's daily grace upon her - Not by worldly terms but by God's terms alone. 

This is gonna be one heck of a ride, a spiritual-led journey of parenthood - one that relies wholeheartedly on God's providence, every step of the way. 

More Miracles - Part 1

We started the year with two major appointments since Little Faith's birth - her first heart appointment and rescan, and Down syndrome specialist follow up where genetic tests results were revealed. 

I am both shocked and elated to share that her heart valve defect has miraculously gone from severe to trivial grade! Even the other associating problems like right heart enlargement, pulmonary hypertension are gone. Heart size and function are now normal. No need for surgery! 

Even the radiologists were puzzled and double-checked with records and fellow colleagues to be sure. 

The only problem left is a bridging between two of her heart vessels that was found to be large at birth (Patent ductus arteriosus). Now it is moderate in size. This condition can be found in even some normal newborns but should eventually close with time. Hers is taking a while to close. So, still requires monitoring. Even if surgical intervention is required, it should not be as major as one for her initial main heart problem. 

Alot to be thankful for! 

To be continued at part 2...

Doe Eyes

Whenever she looks at me with these doe eyes as I lay beside her, I can't help but notice how contented and happy she is. 

I sometimes do wonder what I had done to make her so happy. Babies are easily satisfied. All I do is lay beside her or pat her to sleep and she'd be all smiles and joy. 

Then I can almost hear her say through those eyes... 

Thank you for keeping me, 

Thank you for not ending my life. 

Thank you for listening to the voice of God over the humanly voice of reason. 

Thank you for having Faith.

And I thank God. 

I thank God for His powerful voice as I was seeking for answers. 

I thank God for persisting against my wants, for an ultimate glory. 

There is so much that I cannot see or fully understand yet. 

She's so little, but her story has shaken some narratives and she has defied many odds from birth. 

This whole experience has told me one thing. That she is, indeed, fearfully and wonderfully made - that her life is God's gift and a blessing. 

We have named her 恩雨。

It translates to Showers of Grace. 

Because she's had abundance of God's grace from conception, from the time she was in my womb, and through birth. 

And I hope that her life, although very different from many, will likewise be a blessing to others. 

Home with Little Faith

Little Faith has been home since 11/10/23. 

Happy to share that she has been doing really well!  

It feels like we've crossed many milestones with Little Faith when it's just been three weeks. 

Melting hearts since 2023.

First time out of home, welcome to the world!

Burrito Baby

Freedom!

Tummy Time

From mentally preparing ourselves for a funeral - to successfully taking our baby home, I can't believe we'd have the chance to experience typical new-parent problems like sleep deprivation, cluster feeding,  baby jaundice, and the like.

We started out not knowing if Little Faith would survive so we didn't prep as much as we'd like to before delivery. In fact we didn't realize she would be discharged home this early. But we are grateful to have the amazing support of many friends and family members, who gave advice and helped to procure needful supplies like baby cot, feeding bottles, milk warmer etc.

Everyone has been so, so kind to us and we cannot thank all enough. 

Little Faith's heart defect is still very present on scans although clinically, she doesn't show any signs of heart problem. We will be repeating some scans on her in a few months time before the heart doctors will decide on need for surgery. We pray and hope that she will not need surgery as the complications and mortality is very high for such a complex procedure on a newborn. 

There are days I imagine losing her and my heart breaks into a million pieces. I've come to love this little baby so much. 

 

But I am reminded that God loves this precious little girl so much more than I do. 

Come what may, I am comforted that He will take care of Little Faith, whether on earth or in heaven.

He has already done a mighty good job at it and He will not stop here. 

So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.

- 2 Corinthians 4:18

 

Our Little Miracle Baby's Progress

Day 0: Little Faith is born.

Little Faith was born and was whisked immediately to ICU as planned. Sadly we didn't get to hold her because of this. 

While I was recovering in the delivery suite, David was in ICU with the neonatal team. He sent me a video of her crying after they had inserted the various tubes/central lines, as per routine ICU care.

She had an apparent look of distress and was closing her eyes. David then called her by name endearingly, the way he usually does when she was in my tummy - She then opened her eyes, and cried very bitterly - as though feeling sorry for herself and relieved that her loving Daddy is here.

That really broke my heart.

Thankfully, Little Faith didn't need a breathing tube to maintain oxygenation and it was soon removed.  The Cardio doctors were really amazed that she didn't need any cardiopulmonary support or related drugs.

Day 1:

Little Faith looks less battled today. She looked absolutely at peace and comfortable - her oxygenation got even better and the team soon transferred her from ICU to recovery unit. (We were previously told she would need ICU for at least 2-3 weeks to months). Look at her grabbing my lil finger. 😋

Day 2:

Little Faith was wide awake for the first time when we saw her. I almost couldn't recognize her! 

The amazing thing is that she didn't have apparent features of down syndrome, and looks just like a normal, healthy baby. 

She smiled when she heard our voices. She's started bottle feeding and had such good suckle that they removed the feeding tube immediately after this pic. We could start breastfeeding immediately.. something that we had previously thought was impossible given her heart condition/down syndrome.

This was also the first time I got to hold my Little Faith.

Day 3:

Today, she surprised us with a perfect SpO2 (oxygen saturation level) of 100%, something quite unthinkable for anyone with Ebstein's anomaly. She seems to be in the pink of health despite having a 'blue baby' condition. 

One of the kind antenatal doctors who followed us through our journey was so surprised to see how things turned out she remarked that our faith (in God) really worked. 

Little Faith is stronger than we can ever imagine! 

Praise be to God! 🙌

Thank you to all for all your prayers, love and providence! Such amazing grace we've had over the past few days!

The Delivery

I have given birth earlier than expected on 5/10. I had to unfortunately check in earlier for delivery because my amniotic fluid was low during the before-delivery routine check up. 

God's mighty hand was throughout the delivery process.
I had the smoothest delivery I never thought was remotely possible for such a high risk pregnancy.

The KKH team was extremely kind and caring to us, conscientious and on the ball throughout the delivery process. It was extraordinary team effort between several multidisciplinary medical teams working with myself, and David. Even the perinatal palliative doctor contacted me personally to encourage and assist even though she was overseas and on leave. 

The entire process went flawlessly, so much so I was shocked at how smooth a first delivery can really be. It is absolutely unreal. 

I was sleeping /reading / laughing through contractions after the induction - thanks to advice from friends to get the epidural analgesia early. (I also managed to finish handing over my work through contractions). 

Even the epidural anesthesia was delivered at such a sweet spot that I could keep my epidural on while pushing towards the end because I was able to feel contractions but not the pain. This is much to my relief because i was worried about feeling the pain from episiotomy cutting and stitching. 

-----------------

The Delivery Process:

At 10plus am on 5/10/23, the nurses/doctor woke me up to inform me that it was time to push. 

So here we are, waiting for the entourage of doctors to be at the ready to receive Little Faith. 

The midwives then gave me a 5-min crash course on how to push.

For a lack of a better term, it felt exactly like pooping a baby out. Yes, friends, just imagine you are going to poop - those are the exact muscles to engage to push during delivery.

Once I got that idea, it only took 2 pushes before baby eventually popped out.

At first, everyone watched and waited intently as Little Faith came into this world - this was a tense and critical moment - we weren't sure if she would survive or even have the lung capacity to cry for her first breath.

And then, I heard a lil squeak before the loudest high-pitched wail. Everyone breathed a huge sigh of relief and were all smiles. Little Faith was immediately passed to the neonatal team and whisked to NICU, as pre-planned, before I could even hold her or had a good look at her. 

Of course that was quite sad, but at least I was assured that Little Faith was in good hands. 

(to be continued) 

 Wait ah... Will update with details soon. 

The defining moment for me in this pregnancy - is praising God

Through worship, through praising God - in the midst of hopelessness and despair,

I found courage, strength, spiritual power, and faith in the impossible like no other. 

In times when bad thoughts disrupt, I fight back by worshiping and praising God.

And I find hope again, I find strength, I find peace.

I am filled with a power that allows me to live by Faith and not by sight. 

Blessings

Our EDD has been brought forward to 8/10. 

The team plans to induce the delivery earlier given the high risk situation, so that facilities are well prepared for Little Faith's arrival. 

This pregnancy journey is coming to an end. It truly has been a tumultuous one but I cannot thank angels around me enough for the many blessings and love poured out on our little family. 

I do want to take sometime to reminisce upon the many blessings in the past months even though there were times I fell into darkness and loneliness from the fear and anxiety I was facing as Little Faith's delivery looms near.

I was in a very bad place as you can see from my entries.

One day, I took out a book to read. It was a book gifted to me from my pastor - about God's tender and fierce love amidst suffering. He thought of me and came to this book as he was browsing through the bookshop.

It was a very powerful book from the very first chapter. And it greatly encouraged me - That we are not forsaken, we do have a God who fiercely loves us through suffering.

I started healing, and accepting her condition, and a lifetime of caring for a special needs child. 

Friends surprised me with a baby shower. They prayed for me, and each one brought gifts of blessing. Some were really expensive but very practical and thoughtful gifts. 

Friends also bought me a maternity photoshoot so that I could have a memento of the beautiful memories of this pregnancy journey while Little Faith is warm and snuggly in me. 

There were many generous donations of baby care items as well. Many things I needed or wanted to buy was quickly gifted, even if I hadn't told anyone of my plans. It's like God knew what I needed and had many angels to see to our needs.

I am also grateful to friends and strangers alike who have made fervent prayers for Little Faith, who reached out to us and visited us in our home to physically pray over Little Faith, who prayed for us at churches, and in their pilgrimage in Israel. Many friends, even distant ones, shared that God reminds them to pray for Little Faith in their daily quiet time. 

A few have also written poems about Little Faith. 

A very respectable Professor and surgeon, who read about my situation, wrote this beautiful poem:

My Precious Little Faith

Oh! Little Faith, my love for you so dear!

Small and delicate, for you my heart endears!

Your hearts beats to the rhythm of mine,

And you are special beyond words can define!

You are the centre of my prayers and supplication, 

My focus of strength and peace beyond comprehension!

- Prof Tan Kok Yang.

In this season, there are many reasons to be angry to God for, but there are also many reasons to be thankful for. 

Delivery is looming closer, planned induce date: early October 2023.

As you know, we have been pondering hard about whether to proceed with Active vs Conservative management for Little Faith when she is born. It is no doubt one of the most difficult decisions I ever have to make in my life. 

I think we have finally both come to a decision. We did it prayerfully. individually in our quiet times - and we both came to the same conclusion - which is to not give up on Little Faith just yet, to give her a fighting chance, and to proceed with Active Management when she is born. 

I suppose coming to this decision didn't happen by coincidence - God spoke to us individually in our quiet times and led us to the same conclusion. 

I'll be honest, this decision was against our initial logic and reasoning. We had always felt that little Faith would not have good Quality Of Life because of her down syndrome and heart condition, and initially wanted to be as conservative in management as we possibly could. 

I thought I would blame God for making me choose a decision that would cause me and my baby prolonged suffering. Instead, I was grateful and at peace that He finally led me to an answer.

David and I had always looked forward to having athletic, bright and intelligent kids of our own. Now we know, that God's plans are far different from ours. 

We don't know what the road ahead is like. We don't know what the end will be like.

But we know that He will walk with us, He will be our guide, and He will provide - one tiny step at a time. 

When you pass through the waters, I will be with you, and the rivers will not overwhelm you. 

When you walk through the fire, you will not be scorched, and the flame will not burn you. 

- Isaiah 43:2.