One day at a time - Feb 13th

We have cancelled our honeymoon/babymoon to Europe and Hong Kong because it is unsafe for me to fly to these locations, given Bubbles' condition. We couldn't cancel the flight to NYC, so we went anyway as it was a short flight. It gave us time to take our minds off and relax.

During this time, DY and I decided that it is important for us to understand the cause of Bubbles' condition - we want to know the diagnosis. Knowing the diagnosis would give us more information in terms of how lethal the condition may be, what possible conditions Bubbles may develop as the pregnancy progresses.

We decided to have an amniocentesis done. It is a sterile procedure where the OB inserts a thin long needle through my abdomen and into the amniotic fluid surrounding Bubbles. She will then use syringe to extract around 40mL of amniotic fluid as it contains Bubbles' DNA. It looks something like this... and no analgesia (pain medicine):

The lab can then analyse the chromosomes, and specific genes that could contribute to Bubbles' situation. If Bubbles' condition is passed on by me and DY, our future babies would have 25% of encountering the same.

Our genetic counsellor called me two days ago and she was able to fit us in the next day (yesterday). We agreed to do it soon because should anything happen to Bubbles, then we won't be able to obtain this information. But I was so stressed out the day the procedure because of my anticipation of the pain from the procedure, because of my fear of finding out the truth about Bubbles, because of the small added risk of miscarriage.

Thank God for everyone who dropped whatever they had to do to pray for us, to come over to pray with us, cry with us, and encourage us through messages in such a short notice.

Be strong and courageous. Do not fear or be in dread of them. For it is the Lord who goes before you. He will be with you, he will not leave you or forsake you. Do not fear or be dismayed. - Deuteronomy 31:6, 8

Yesterday morning, we had all the paperwork done and proceeded with the amnio. The doctor distracted me and worked quickly. Bubbles was out of the way and made it easy to obtain the fluid. It pinched when she inserted the needle, but the pressure and the cramps in my uterus worsened as she extracted the fluid. After the procedure, the doctor showed us Bubbles' heartbeat again, and said that before she began the procedure, she was actually quite worried that Bubbles wouldn't have a heartbeat by now, given the findings on the previous ultrasounds.

Bubbles, you are a fighter, and I thank God that I can see you again through the ultrasound.

I could barely walk afterwards and they let me rest in a lazy boy chair. I was really wiped out and really sore throughout my entire abdomen for the rest of the day. Short distances like walking to the bathroom would trigger some cramps. Headaches and nausea also bothered me the entire evening. I did nothing but lie on the couch all day. DY cooked dinner for us :)


Our next steps include another anatomy ultrasound by the end of February, followed by a fetal echocardiogram early March, if Bubbles continues to fight.

We got results today and Bubbles doesn't have any Downs, Turners, Trisomy 13/18, which we anticipated because we knew that Bubbles is presenting with skeletal disorders. We are still waiting for other results which will take 4-6 weeks to process.  We also found out Bubbles' sex, (I was right!!) but we are not telling you that yet :P

We are learning to take it one day at a time. We don't know what news await us, but we have hope, knowing God is carrying us and sending angels to support us. We are not alone, we are never alone.

Song to share for today:

角聲使團 - 患難背後

沉痛中，無聲問上帝，
為何我的人生已跌於谷底，
靈魂被空虛包圍，長路中找不到安慰，
窮途上走迷，無家可歸。 

絕處中，仍能發現祂的同在，寸步未離開，祂的愛，可遮蓋心中痛哀，自這天，讓我沉醉於祂溫暖熱愛，歲月縱冰冷，濃情尚在心坎滿載。 

遙看蒼天，苦難密佈，
為何半點陽光已經找不到，
承受著惡夢煎，熬，疑惑中沒法高聲禱告，
留連在荊途，常失足跌倒。 

願我知，無常變幻裡，祂仍常在這浩瀚人海，我深信，祂的愛總不變改，在每天，讓我憑信心抓緊這大愛，我便看得見，原來患難背後有愛。

Hide me in Your love - Feb 5th

It's been a while since we updated you all about our Bubbles. 

Last Thursday's ultrasound confirmed that Bubbles has poor mineralization in the lower spine and limbs. All limbs are shorter than 50th percentile, the thorax (rib cage) appears narrow. The cystic hygroma has grown to 26mm, with fluid now surrounding the abdomen under the skin. Bubbles has general edema (puffiness) all over the body. The situation is appearing worse than before.

This means Bubbles' cystic hygroma is secondary to a certain type of genetic skeletal disorder. Our genetic counsellor explained that Bubble's skeletal disorder could be due to a recessive genetic mutation passed on from both me and DY, or a genetic mutation that was spontaneous and random. This skeletal disorder is likely fatal - the bones are not forming the way they should be, and with the thorax being narrow, Bubbles' lungs would not develop properly - even if Bubbles survives this pregnancy, survival after birth is highly unlikely because the lungs will not function well.

The worst thing I heard during this ultrasound is that I might lose Bubbles in a week, two weeks, maybe three weeks. The high risk radiologist apologised to us, and stated that there is hope for the next baby as this situation is rare. I was angry because I did not want to think about the next one. Bubbles is still here, with the heart beating, inside of me. I cannot move on to think about the next one when this one isn't over.

That night, my heart ached so much. I felt like it was being ripped out of my chest. I could not grasp how close we may be to losing our Bubbles. I could not believe that I may not get to hold my first child, kiss my first child, feed my first child, bathe my first child with my husband. I felt so powerless. There was nothing I could do to help my baby.

Before we slept, DY and I prayed, asking God to comfort us, to heal our broken hearts... asking God to quiet our doubts with His love and strengthen us in our weakness.

Still - Hillsongs

Hide me now
Under your wings
Cover me
Within your mighty hand 

When the oceans rise and thunders roar
I will soar with you above the storm
Father You are King over the flood
I will be still and
know You are God 

Find rest my soul
In Christ alone
Know His power
In quietness and trust 

When the oceans rise and thunders roar
I will soar with you above the stormFather You are King over the floodI will be still andknow You are God

Needing peace

This afternoon, DY and I will get another ultrasound done.

My belly has been growing rapidly, I am  amazed by how this life is so deeply connected to me, how my body changes and accommodates for this wonderful human being inside of me.

I have been such an emotional wreck this morning at work, seeing all the babies... those who had surgery and are recovering, those who are still battling the defects and scars...  a fellow Christian colleague of mine just found out I was pregnant today and she was so excited for me... but I couldn't help but tell her quickly what is happening and ask her to just pray for me.

In my hurt, pain and worries, I could not draw the strength to "cast all my worries on God."

But I praise Him because He heard my cry for help in my weakness. Two of my friends messaged me with prayer and encouragement and so did my mom, when I sat by myself, crying, in the empty staff lounge... hoping the tears would stop flowing.

Mom quoted from the Footprints in the sand poem: 

"in the midst of my sorrow, worries , I cried great tears of joy --- for the priceless promise that You never waste our pain. On the other side of this trial, I know for certain, I will see Your purpose fulfilled, and once again, as always, I will find reasons to celebrate."

And my friend reminded me, of Psalm 139

13 For you formed my inward parts;
    you knitted me together in my mother's womb.
14 I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
    my soul knows it very well.
15 My frame was not hidden from you,
when I was being made in secret,
    intricately woven in the depths of the earth.
16 Your eyes saw my unformed substance;
in your book were written, every one of them,
    the days that were formed for me,
    when as yet there was none of them.

God loves me and DY, and loves the little one inside of me. God you are mighty to save, mighty to comfort. You are my rock, my fortress, my strength.

Amen.

Refocusing

誰造 
誰造綠草蝶撲花間起舞， (He who made the green grass and butterflies,)
萬鳥空中飛翔，令我不勝讚好。 (the birds in the air... I stand in awe)
誰造大海漫遍天空色彩播，(He who made the oceans and the rainbows in the skies)
耀眼發光星辰，問你可否知道？ (He who lit up the world... do you know who this is?)
誰造天空海闊，造了細小朝露， (He who made the universe, and the smallest drops of morning dew)
誰造美妙樂章，能讓我讚嘆創造好。(He who made beautiful music, moves me to praise that all creation is wonderful)
誰造麥子創出生機於土裏，
又會再生出來，令我真想知道。

When I heard this song during Sunday service today, I couldn't help but ask God... do you love this little one that's growing inside of me? You made all things on earth and you smiled, rejoiced and danced because you were pleased with your creation. Are you pleased with my child? Can you have mercy on my child? Can you heal the physical defects and wounds on my child, and put a smile on my child's face? Protect my child from the harshness of this world?

And during communion, we broke bread, which symbolizes Christ's body broken so that we may be healed, and we drank grape juice (in place of wine), which symbolizes Christ's blood poured out on the cross so that our sins are washed away. I asked God again, can you heal my child? Can you wash away our sin?

In this hurt and pain, I have momentarily lost sight of God.

I remembered the story of Ruth in the Bible as we wrapped up our Bible study on Friday. She has lost her husband to the famine, and little did she know, that when she faithfully followed Naomi, her mother in law, to a land foreign to her, when she followed the God Naomi followed, and made Naomi's people her people, that she would meet and marry Boaz, a righteous Godly man who loved her, and that God would enable her to conceive a son to carry her deceased husband's name through Boaz? And she didn't even know that through her, her family line bore King David, and ultimately Jesus. Then I couldn't help but praise God because he is truly the Alpha Omega, beginning and end. Ruth might have thought she was blessed already by the good things that happened during her lifetime, but she had no idea how really blessed she was... yet God saw it, ordained it, for generations to come.

I am reminded of how little I see, how little I am, and yet there is this great God who looks after me and my generations to come. All I need to do is trust and obey because this God indeed loves us, this God humbled Himself to be on earth as a human, suffered, and died on the cross for our Sin that separated us from Him. 

Then I remembered DY's sharing at fellowship on Friday, when he chose Dan Bremnes' song, Beautiful. DY mentioned that in our pain and potential loss, we didn't know how we should pray at times, but this song reminded him that God has everything good in store for us - we just don't see it yet. We need to seek God's heart, follow His will. That is how we should pray - for faith in God's love for us, for strength and peace that nothing on earth can give except from God Himself, to ask for His will to be done, to ask for healing... but ultimately to obey and accept whatever it is to come. Blessed to have my husband who is after God's own heart, who strives to love this family in God's love.

Lord I want everything
Everything You've got for me
I won't be satisfied until I find the center of Your heart 

Lord You know You've opened my eyes
Shown me things that I can't see on my own
You call me justified, free to find everything you are 

And You, changed me from what I used to be
Opened my eyes, now I can see
You're making this life so beautiful
So beautiful 

Lord I give You everything
Anything You want from me
Take my past and my future I, lay it at Your feet 

I'm after Your heart,
You've stolen mine
I give You my all ‘cause You gave up Your life
I'm not who I was, simply because
Oh, You set me free

Thankful - Jan 28

Psalm 3:4-84 I call out to the Lord,and he answers me from his holy mountain.5 I lie down and sleep;I wake again, because the Lord sustains me.6 I will not fear though tens of thousandsassail me on every side.7 Arise, Lord! Deliver me, my God!Strike all my enemies on the jaw; break the teeth of the wicked.8 From the Lord comes deliverance.May your blessing be on your people.

Mom's cell group gave us a prayer card. The front says, "You're in my prayers. Prayer is powerful because we believe in a God who has all power." DY and I praised our God. We were blessed to know that even though they don't know us well, they prayed for us, and through our story, some felt challenged to work on their own personal relationship with God, and some were encouraged to allow themselves to be vulnerable in the presence of their brothers and sisters in Christ, by becoming transparent about their personal struggles.

We are thankful that even friends, who do not have any religious practices, said prayers for us. Brothers and sisters who spent time to pray with us. Friends who have lost a baby shared how vividly they still remember the void that they felt from their loss but also their belief in that these events happen for a reason. This week, we truly felt peace despite our situation.

Today, we saw our midwife. She saw us after her clinic hours when she wasn't even on call. She spent 2 hours going over the report and answering our questions. We also heard Bubble's heart rate of 150-160s, which is reassuring to us since we can't see him/her. Bubble, you are fighting hard! <3 We still don't know what the statistic is for my risk of miscarriage because we don't know the exact causes of Bubble's cystic hygroma; all we know is it is quite high. We will most likely get some more information about Bubble's situation once we get our ultrasound next Thursday. 

I am thankful that this Thursday's ultrasound radiologist specializes in high risk obstetrics and the tertiary hospital at which I'm having my ultrasound is less than 10 minutes walk away from work for me. My heart is heavier as this date nears, but I cannot wait to see our Bubble again.

We have our honeymoon/babymoon that was previously planned for Feb 8 to 24th this year to fly to Italy, Czech Republic, then spending Chinese new years in HK. We will make final decision about the trip after the ultrasound. In the meantime, we will do research to ensure our safety and know where and how to get help. Please pray for us to make the appropriate decision!