It's a privilege

It's been a while since we have updated you. We have been going through some ups and downs in our emotions with Bubbles' condition.

Over the past several weeks, we have done an echocardigram on Bubbles and finally saw a high risk obstetrician who specializes in fetal medicine and maternal conditions. Good news is that Bubbles' heart is normal. Bad news is that Bubbles' skull cannot develop fully and a small part of her brain protrudes through the back of the head (it is called "encephalocele"). Her cystic hygroma continues to grow, she is grossly edematous, her little lung is not developing much, there is poor bone  mineralization in the spinal and sacral regions.

Our OB did not want to give us "false hope" and confirmed what radiologist and geneticist told us. He said that Bubbles is likely to die in my womb, and if she survives pregnancy, her life may only last seconds, minutes, hours at most. He will support us if we wish to continue carrying Bubbles to full term but the only thing we could do is to monitor her condition closely, every 2 weeks for now. If Bubbles survives to 32 weeks, we will consult neonatologists and pediatric surgeons to determine our birth plan (e.g. full resuscitation? Ventilator? Skin or skin? C section vs natural vaginal birth? Etc)

We were told we were going to lose Bubbles 4 weeks ago, but she is still fighting for her life.

Recently I heard a comment made about a baby on Facebook,  I was saddened to think of what others will say about Bubble's,  how they judge her for her appearance... she is expected to have a bump on the back of the head, puffy fluid cyst running down her neck and back, her chest bell shaped, her arms and legs extremely short... nobody would call her beautiful, cute... maybe they can't bear to look at her. DY comforted me and reminded me, maybe we need to learn and remind ourselves to determine beauty, not through the eyes of the world, but through the eyes of our God.

We watched a sermon and testimony that my sister received at her church in Hong Kong. The parents shared how they endured their baby's diagnosis of needing a tracheotomy, being tube fed the rest of his life and not being able to control his movements. Although their baby's condition is survivable and very different from ours, what they faced was nothing short of what we are facing. Their faith in God gave us a lot of encouragement.

They called it a "privilege" that God has allowed them to learn to love their baby who would need special needs, medical care and lots of love. They called it, a PRIVILEGE. And God really humbled them, just like He did with us, with what true beauty is, how God deems something beautiful. They learned to sing, Blessed be Your Name, amidst their suffering.

We are told that the likelihood of Bubbles' survival of this pregnancy, or after birth, is extremely low, but we believe that God's love for Bubbles or any human being, is not measured by the number of days one has lived and breathed on this Earth, but simply because one was created.  Bubbles' struggle has already touched some of you and we see God's grace in it all.

Below is a link to the sermon/testimony. We highly encourage you to take a look.

Can I Get a Witness - Week 4 - Strength and Hope from The Vine on Vimeo.

We are learning to praise God in our suffering. When I sang this song as a youth, I didn't like it. I didn't like the music, how it's so hard to sing the high pitches, or what it meant to suffer, what it meant to rejoice in the good and bad. Now, it weighs a lot in my heart because God is teaching me to give praise in every season of my life.

Blessed be your name - Matt Redman

Blessed Be Your Name
In the land that is plentiful
Where Your streams of abundance flow
Blessed be Your name
Blessed Be Your name  When I'm found in the desert placeThough I walk through the wildernessBlessed Be Your name

Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say
Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name
Blessed be Your name
When the sun's shining down on me
When the world's 'all as it should be'
Blessed be Your name
Blessed be Your nameOn the road marked with suffering
Though there's pain in the offering
Blessed be Your name
Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say
Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name
You give and take awayYou give and take awayMy heart will choose to sayLord, blessed be Your name