Charis Yiu, our sleeping angel, has entered this world

Charis Yiu

Charis (χαρις): (a) grace, as a gift of blessing brought to man by Jesus Christ, (b) favour, (c) gratitude, thanks, (d) a favour, kindness.

32cm, 5lbs2oz

Born sleeping

May 28, 2015

12:46pm

Now with her army of angels 

I will carry you

forever in my heart

There were photographs I wanted to take

Things I wanted to show you

Sing sweet lullabies, wipe your teary eyes

Who could love you like this?

People say that I am brave but I'm not

Truth is I'm barely hanging on

But there's a greater story

Written long before me

Because He loves you like this

So I will carry you

While your heart beats here

Long beyond the empty cradle

Through the coming years

I will carry you

All my life

And I will praise the One Who's chosen me

To carry you

Such a short time

Such a long road

All this madness

But I know

That the silence

Has brought me to His voice

And He says?

I've shown her photographs of time beginning

Walked her through the parted seas

Angel lullabies, no more teary eyes

Who could love her like this?

I will carry you

While your heart beats here

Long beyond the empty cradle

Through the coming years

I will carry you

All your life

And I will praise the One Who's chosen Me

To carry you

On Wednesday, May 27th, I was induced with Misoprostol starting 11am. It took a few hours before contractions started. I continued to have contractions every 2 minutes but no dilation, and eventually I had an IV, epidural and a urinary catheter inserted. It took 24 hours for my cervix to fully dilate. The Misoprostol makes induced labour different from a natural labour. While my uterus was firing away (one every 1.5 minutes, each longer than a minute) between 1am and 9am, my epidural could no longer keep up - I had a continuous epidural infusion, with breakthrough (extra doses) every hour, then anesthesia injected more narcotics. I had no movement below my waist, freezing from upper abdomen to my chest, but no freezing in my lower abdomen. My uterus was too stimulated, putting me at risk for uterine rupture... I was suddenly fully dilated, but my water didn't break and Charis bum didn't descend.

The next on-call OB Dr. K performed an ultrasound, discovering how the combination of Charis' head (12 cm), cystic hygroma behind the neck and head, and neck position, would make it incredibly challenging to delivery Charis vaginally - her head will most likely be stuck and worst scenario if we waited for the water to break was that we switch to c-section midway a vaginal delivery. This was my fear this past whole month and I knew c-section was what we needed. Very quickly they brought me to the operating room. My parents arrived in time to hear the plan, eyes full of tears, not knowing if God will also take me home as well. By this point our prayer warriors all gathered in the waiting room. Those who had work called in sick, worked remotely, or somehow received a day off because their supervisors were absent.  The anaesthetist pulled out my epidural, gave me a spinal injection of medication, then inserted a new epidural. I wanted to hold her right after birth and have DY beside me. Unfortunately, they couldn't get a good block on my lower abdomen, and I had to have a c-section performed under general anaesthesia. I missed Charis in the first hour and was very groggy for the next couple of hours.

When Charis was born, she was very swollen, and really could not have fit through the birth canal. She lost all of her skin from all the swelling except for her head. She had a skull defect (encephalocele) and a huge lump (cystic hygroma) on the back of her head and neck. Her limbs were just a few centemetres long. But we love all of her. We saw her beautiful face... her eyes closed and mouth pouty and closed. Her eyebrows and double eyelid like DY's... her chubby cheeks and little lips like mine. She had a TON of hair. We tried to do hand and foot prints and molds, but because they were so tiny and didn't have skin, we couldn't get proper prints. She was very weepy too, and released a lot of the fluid. In just an hour, we could see her features more.

(Charis day 2)

We were so amazed. 

We could not imagine what would have happened if we actually tried vaginal delivery. If I dilated a few hours earlier, water broke earlier, or didn't have pain issues, we might have delivered vaginally by the previous shift OB and it would have been disastrous. 

If Charis was delivered later, we aren't sure if we would be able to see her face, see us in her.  

When my nurse did bloodwork for mirror syndrome, which I was at higher risk for developing from Charis' condition, she said the moms with mirror syndrome she looked after ended up in ICU after giving birth. That could have been me if my pregnancy continued further. 

Our hearts bowed with humility and reverence for God, His sovereignty and how He held our lives in His hands, He had complete control, and His will and wisdom were above all else. He protected me, He protected our hearts. 

We stayed for two more days on the postpartum unit. Charis was kept in a cooler on the unit for us to hold her and spend time with her. It was so difficult to let go of her everytime. I wish I could hear her voice, her cry. I wish I could rock her and sing her to sleep. I wish I could bathe her, feed her, hold her skin to skin. I wish she would open her eyes when I kissed her.  DY dreamed of holding her for the first time, crying loudly in his arms and him not knowing what to do (haha). He dreamed of teaching her his favorite sport, soccer.  When I close my eyes I can see exactly how she looked as I gaze at her,  asleep in my arms.  I am scared that I will someday forget how she looked in my arms, forget the weight of her in my arms. 

On Saturday,  my parents, DY and myself said our final tearful goodbyes to our precious mighty little one before we left her on the unit, to be taken down to the morgue. Everything felt so surreal to me and DY. We came into the hospital, with her inside me. We left the hospital, with my belly smaller, I'm 10lbs lighter, and no life in my arms. When I got into my parents' car, I felt an emptiness that I have never felt in my life. 

The nurse gave me a stuffed bear donated by friends of parents who lost their babies at birth, so that other "still-mothers" and "still-fathers" like ourselves wouldn't leave the hospital empty handed. I was grateful to have received it, but right now, as I am resting at home, I resent it everytime I see it because it can never replace my daughter, and it's a symbol of my loss instead. 

The past week had been an emotional roller coaster for us, especially myself. After 2 days of searching, we have found a beautiful resting place for her body. 

Everyday I cried when looking at her pictures, catching her scent in the quilt that once wrapped around her, listening to the worship songs that she listened to, but there is healing and grace through tears. Everytime DY plays her songs on the harmonica, it brings us close to her... 

Everyday I question myself if I did enough to protect her. And oftentimes, I felt guilty, knowing I could have done more. As I wrestled with these struggles, and shared with DY and some of you,  I learned to press on forward.  DY and I have been reading, together, "Holding on to Hope" by Nancy Guthrie, and we have found much comfort in learning how to grieve together as husband and wife, in God's love and grace. Grief had introduced a form of intimacy that we haven't experienced before - we shared our feelings with honesty, gentleness and patience like never before. 

How you can walk with us: 
We understand that you love us and want to do anything you could to help us or share our pain, and you may feel like you're at a loss for words, or you're not sure how you could help. Grief changes us. A few suggestions for supporting us :) 

• We may or may not enjoy the things we used to do, we may look at life more seriously.  
• We may need time by ourselves, and sometimes we may need time with others. Please just ask! 
• Do ask us about how we are doing. If we don't feel like we can tell you at the time, it doesn't mean we won't ever tell you. We just need a moment
• Please remember us as mother and father despite our loss. Acknowledge her existence. 
• Our parents and siblings are also grieving.
• Watch a movie with us. Bring us a meal. Play boardgames with us. Pay us a visit. :)
• Pray for us

Most importantly, remind us of how she was a gift from God, and we could simply respond with gratitude to God for giving us this gift that has transformed our lives over such a short time. She belonged to Him and He decided to bring her to a place where there is no pain, no suffering, no sickness... a place where there is healing. 

Time to say hello

Today is May 26th, and tomorrow is the day we will meet our Bubbles. Be prepared for the longest blog post here.

Our meeting with the Pediatrician and palliative nurse back on April 17th helped us understand that medical interventions, like ventilators, IVs, etc, for Bubbles' condition will only inflict more suffering  and complications without any therapeutic result. Even if Bubbles' survived the pregnancy till 37-40 weeks, her other organs will have already been compromised. Because of these reasons, DY and I were prepared to follow a palliative plan for Bubbles - to deliver her when she's ready, to not have CPR done if she has no vitals, and to provide comfort measures to her if she was born alive - skin to skin, warmth, medications to ease her struggles to breathe. We also made plans for Bubbles' memory legacy - molds, hand/foot prints, pictures.

Between April 17 and May 15th, our time with Bubbles had been thankfully uneventful, though I developed polyhydramnios, which is when I have too much amniotic fluid in my womb; in our case, this is due to Bubbles' combination of conditions that prevents her from swallowing enough amniotic fluid. That's why I look larger than I should, and the extra fluid irritates my uterus, triggering contractions while walking short distances, even when at rest.

During this time, we took Bubbles to see the cherry blossoms, enjoy patio weather, visit DY's old place of work in Kitchener, enjoy BBQ with friends, lead worship session together, celebrate my first mother's day...  I got around to sewing a quilt just for her, which I finished in days because after our meeting with the pediatrician, I felt like I didn't have much time left with her. My mom learned crocheting from youtube (haha) and despite her poor vision, she crocheted a little beanie hat and boots with yarn that my dad picked out for Bubbles. DY's cousin made alphabet blocks that spell her name. Our friend TYKM blessed us with maternity photos to preserve memories in a really short notice.

I learned so much more about Bubbles - how she kicks when she hears "Come as you are" by David Crowder or "Whom shall I fear" by Chris Tomlin, how she likes DY playing "Amazed" on the harmonica,  how she's always awake when DY rubs belly butter on my tummy... and if you were beside me, you would have thought I was crazy, talking aloud about everything that I was doing (but I was only telling Bubbles what I was doing).

People tell us how they think we are brave. DY and I have never felt brave in our circumstances. We had rainy days - we did, plenty of times. Times when it hurt to sing "I Have a Maker" or "In His Time" to Bubbles. Times when we just couldn't smile, or find the motivation to do anything. Times when it hurt to mention her name. Times when we distracted ourselves with work, TV, COC to escape the reality.

However, love and life helped us face the fear of suffering and loss. We know that there is life with God in eternity beyond our lives here on Earth. We know that death is only a temporary separation from Bubbles, and death does not separate her or any one of us from the perfect, unconditional, self-sacrificing love of God. Bubbles has an important role during her short stay here and when her job is done, she leaves to be with Jesus. We have been able to endure because God is a God of providence - He is our listener, our help, our rock, our comforter, our mighty fortress. He took care of us during such times: we didn't have to worry about anything except for loving Bubbles. We had words of encouragement, shoulders to lean on, people to cry with, and prayers to help us fix our eyes on our God. This is why we could continue to carry Bubbles - this is why we have hope, despite our circumstances.

Turning point

Anyhow, things took a turn on May 15th when we had another ultrasound done. Bubbles' heart developed pericardial effusion and blood flow in the umbilical artery experienced some resistance. My polyhydramnios worsened (it is measured in "AFI". Normal is around the 20s cm; I was already measuring 34cm), and as a result, I am often short of breath and my huge belly and back have been hurting. Thankfully, my blood pressure was still nice and low.

Dr. R saw us and strongly urged us to make a decision to deliver early because:
1) Bubbles had always been a footling breech, was the size of a 35 weeker due to the edema even though she was only 29 weeks.. and the cystic hygroma behind her neck is huge.. but if we deliver her soon, he is confident that we can deliver her vaginally, which is least traumatic to my body;
2) Bubbles' will likely deteriorate quickly and die in-utero if not delivered soon... waiting till she is older only means she is less likely to survive birth;
3) polyhydramnios needed to be dealt with either by birth, or by reduction of fluid, which comes with various risks to myself and Bubbles

Dr. R gave us a week to make the decision to induce ASAP or wait, and to monitor me and Bubbles. He presented our case to the committee consisting of genetics doctors, pediatricians, ethics committee, social worker and other high risk doctors. According to ethics and medical advice, the team unanimously determined that it is acceptable to deliver her early at this point, we would not be doing anything to hasten her death.

We felt like shortly we made a difficult decision for Bubbles to receive palliative care, we needed to choose a day to say goodbye to Bubbles. We thought we had more time. We thought we didn't have to decide but Bubbles' body was starting to show signs that it's battled long enough.
DY and I looked at the situation differently, though he would support my decision. We understood that Bubbles will leave us, delivered the next day or the next month. I struggled with the idea of choosing her day of death when she was so alive, kicking inside me, while I was still stable. I did not want to interrupt her journey when she wasn't ready to let go. DY didn't feel we were interrupting her life because if we did, we could have done it back when we saw her abnormalities in January; but how do we know if we waited too long; how do we know when we have put me into danger? He would treasure a live birth more than a still birth, even though chances of live birth is already so slim.

We made a list of pros and cons for the two options. Throughout the week, we prayed like never before. We tried to find God's will in our situation, hoping that he would just leave us with one option. We received a lot of different advice from various people... but God entrusted us with Bubbles' life; He needed us to discern what was from Him, to ask Him for wisdom to make a decision when needed.

God helped me realise that although I am the mother who is carrying Bubbles, DY's desire meant just as much. Although he hasn't been able to feel Bubbles' kicking (since there's too much fluid, and she only kicks my bladder and cervix, where DY can't feel), he loves her, treasures her life, and wants her to know him and interact with him. I have been so blown away by just how much love DY has for our baby as he is not connected to her the way I am.

Final Decision

On May 22nd, we returned with our decision made, and that was to talk to Dr. R to see if we could meet half way: not inducing ASAP but monitoring Bubbles and myself closely until we need to let go. We still weren't 100% sure with this decision however until the ultrasound findings changed our minds.

In just 7 days, Bubbles' has now also developed pleural effusion, and there is absent blood flow in her umbilical artery whenever the heart is at rest. These are signs that Bubbles is really struggling and in distress. Without a doubt, we knew we could and should let go. Very quickly, arrangements were made for me to have labour induced 5 days after this appointment. We had very little time with her, had many mixed emotions of feeling sad of letting go of the moments we shared, her very existence on earth, but also feeling excited to finally meet this precious mighty gift from God.

Here we are today, our hospital bags all packed up, our worship playlist downloaded, our prayer warriors ready to support our long long day tomorrow, as DY rubbed my belly with belly butter one last time and we said our final prayer tonight.

Bubbles, we miss you, we love you, we would love to meet you.

Come as you are

The past two weeks have been an emotional rollercoaster for me ever since we got a definitive diagnosis. There was not a night that I did not shed a tear for my little girl.

I also started getting frequent Braxton-Hicks contractions ("fake" contractions that allow the body to practice before real labour contractions occur... just a tightening of the abdomen and shouldn't hurt) last week, especially during work and mine have been painful from time to time, stopping me from doing anything and needing to sit down until the pain subsided. This experience is a painful reminder that our time together is approaching the end.

I also saw the OB again on April 8th, and it was extremely difficult for me to accept when he told me, "it is a 100% that your baby will not survive and that it would be a miracle for her to be born at term." He advised me to seriously reconsider delivering early because: 

1)  Bubbles' edema and encephalocele makes her so much bigger than she actually is... making delivery after 28 weeks result in dystocia (traumatic birth), where I would require a c-section instead. If I manage to carry her to term (anywhere after 37 weeks), she may be so big that I may require more than one incision... resulting in longer recovery, higher negative impact on future pregnancies, and never deliver vaginally in the future. 

2) Because he believes that the outcome of Bubbles is no different, delivered now, or delivered at term - death.

3) risk of mirror syndrome where I develop  high blood pressure because of her condition 

Together with the OB, we have decided to meet with the Pediatrician, palliative nurse and social worker in addition to our OB check up this coming Friday on April 17th. We will have to hear this all over again, and will be discussing end of life management for Bubbles (from aggressive interventions to comfort measures, quality of life, ethics, issues, etc etc), preserving memories, maternity/critically ill child leave of absence with this team. It will be an intense day of information and emotion overload and I'm so glad that my mom can come with us. 

I don't want to be overwhelmed with sadness right now, because I want to enjoy the joys of carrying this beautiful child for me and DY. I need time to be off work, to relax and dedicate more time to Bubbles, and prepare for our beautiful encounter and goodbye when the time comes. I am so surprised that  DY already bought a stroller, some cute dresses, even though we know that we won't be taking her home with us. It's just something that her daddy wishes to do for her and for me. 

Someone told me today that she felt really bad for me, and was in tears because she was heartbroken by my circumstances. She said I don't deserve any of this.

But you know what??? Everytime I cried for her, she kicked me to let me know that she's still here with me.  She is everything I deserve, because she is a precious gift - that DY and I dreamed of and created.  She is strong and endearing, has nourished the love between DY and myself, has brought forth the compassion of our friends and acquaintances, and has encouraged those who have been enduring difficulties - God has entrusted something so precious to us and we want to protect her and love her as much as we could. 

28 “Come to me, all you who are weary and burdened, and I will give you rest. 29 Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. 30 For my yoke is easy and my burden is light.” - Matthew 11:28-30

33 “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” - John 16:33

Don't be too sad for us. Stay strong and keep praying for us. Jesus is our high priest who has been through so many trials, hurt, and suffering, and he understands what we are going through, sees every tear that we shed, hears every prayer we make... and furthermore, he has overcome the sting of death and has risen! He promises to walk with us through the valleys, and we will hold on tightly to Him.

I found great comfort in the song below, and I hope your brokenheart will start to mend as you sing these words aloud and truly believe that God is a healer of the brokenhearted.

Come as you are (David Crowder)

Come out of sadness
From wherever you've been
Come broken hearted
Let rescue begin
Come find your mercy
Oh sinner come kneel
Earth has no sorrow

That heaven can't heal

Earth has no sorrow

That heaven can't heal

So lay down your burdens

Lay down your shame

All who are broken

Lift up your face

Oh wanderer come home

You're not too far

So lay down your hurt

Lay down your heart

Come as you are

There's hope for the hopeless
And all those who've strayed
Come sit at the table
Come taste the grace
There's rest for the weary
Rest that endures
Earth has no sorrow
That heaven can't cure

Fall in his arms
Come as you are
There's joy for the morning
Oh sinner be still
Earth has no sorrow
That heaven can't heal
Earth has no sorrow
That heaven can't heal

Achondrogenesis what?

We finally got our amniocentesis test results. We discovered that Bubbles' has a defect in one of her genes that is responsible for producing a type of collagen that is necessary for the formation of connective tissues and bone.  She has a lethal condition called, Achondrogenesis type 2. This condition is not passed on from me or DY, but an unfortunate spontaneous 1 in 60,000 occurrence. This ultimately confirms what the radiologist and OB were telling us.

It gives us relief to know that this situation is highly unlikely to occur in our future children,  but we are sad that we may or may not get the chance to hold our precious Bubbles. According to literature, babies with type 2 are either miscarried, still born, or not live after birth because the lungs are underdeveloped (which can lead to a number of fatal medical conditions) and the small rib cage does not allow the lungs to develop. In addition to the type 2, Bubbles' condition is further complicated by a cystic hygroma and an encephalocele.

Our little warrior. Every night we rub my belly and talk to her, letting her know we love her, and how amazing she is. We just want to spend as many days as we could with her. I held my breath as the sonographer placed the ultrasound transducer on my belly, looking for the heart beat. Yes. It's still there. Bubbles wasn't moving as much today, but everything else generally seemed the same, though she appeared more puffy than two weeks ago. 

Today, the OB brought up other considerations that crossed our minds already. 

1) Depending on how far I can carry Bubbles to term, Bubbles' size would affect whether I can deliver vaginally or not. The encephalocele and the huge cystic hygroma would further make a vaginal delivery challenging and even not possible. I may end up having a C-section done, and there are risks that accompany a C-section, whether it is acute medical conditions (e.g. hemorrhage, shock, infections) or future consequences for pregnancy (e.g. no more vaginal births depending what kind of incision is made, higher risk for placenta previa, scar tissues that impact our chances of getting pregnant, etc). There is also a chance that C-section could be smoothly done. 

2) As Bubbles' condition worsens, I have a very small risk of developing "mirror syndrome" where the mother develops sudden eclampsia (high blood pressure), swelling of hands and feet, which could be dangerous if undetected and untreated. 

3) When Bubbles is approaching 30 weeks, and when we are ready, we can discuss with OB, neonatologists, and pediatricians to determine how I will give birth, my comfort measures, Bubbles' comfort measures (e.g. medicine, oxygen, etc), how much medical intervention (e.g. resuscitation, ventilators, etc) until Bubbles' enters eternal rest with God.

It is all too soon to tell because I am only at 22 weeks, but these are things for us to keep in mind when making decisions. We just want to keep loving our baby... we are not ready to let go of her. We want to meet her, hold her. I personally don't want to stop cleaning up the room to make way for a nursery... I don't want to stop doing the things that I would do as an expectant mother, like buying a crib, her little clothes, making a blankie for her, writing love letters to her, just because our situation tells us we would not be bringing Bubbles home.  I want to create and preserve pieces of her.

I know you will all send us positive thoughts and keep us in your prayers, which I greatly appreciate. I am overwhelmed by your kindness, but at this moment, I personally just need some quiet time and not talk about Bubbles with others. 

For now, please pray that: 

- We endure, and walk through these valleys hand in hand with God, coming out as stronger husband and wife

- God's promises and comfort over our families

- Bubbles fights for as long as she could

- My health and safety throughout pregnancy and Bubbles' birth

- We create the best possible birth plan for me, Bubbles and DY

Need God to make us brave, casting out fears and doubts...

You make me brave - Amanda Cook

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

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! 

We nicknamed our baby, Bubbles - Jan 19th

Psalm 139
13 For you created my inmost being;
you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.

Today, we saw our Clinical Geneticist and Genetic Counselor. We prayed for peace and understanding as we met with the experts, and prayed for everyone involved in our care to be as thorough as they possibly can. Dr. B explained to us that they don't usually see a cystic hygroma beyond 7 or 8mm, which is already quite large, but to see a 17mm on an ultrasound could mean there might have been an error in the reading the sonogram. If there was no error, then miscarriage is highly likely. She explained that with any regular pregnancy, risk of chromosomal syndrome is 2-3%. With a cystic hygroma, our risk of a chromosomal syndrome increases to 50%. In addition to that, this diagnosis could be compounded with heart or skeletal defects, or a different type of medical condition, raising the pregnancy risk to at least 75%.

On one hand it is reassuring that it wasn't anything that we have done that could have caused this to happen, but on the other hand, we couldn't believe that this morbid coincidental circumstance has fallen upon us.

From what we learned about chromosomal syndromes, our child could have Downs, Trisomy 13, Trisomy 18, or Turners.
Trisomy 13, 1 in 5000 live births; if baby survives pregnancy, will have multiple organ defects and unlikely to survive beyond 1 years old.
Trisomy 18, 1 in 5000-10000 live births; if baby survives pregnancy, will have severe developmental delay, varying defects and unlikely to survive beyond 1 years old.

At this point, Downs or Turners compared to Trisomy 13 and 18 seems like a dream.

One thing we know for sure, is that we are guardians of the things on earth that God has granted to us. We respect the life He gives to us, and He knows when to take this life back to heaven with Him. We remember that although we may not be able to see our baby, or count the number of days he/she has, God already saw our baby's unformed body, knew how many hairs will grow, how many days baby will be on Earth, and already loves him/her. 

We are aware of the pain that DY and myself will experience whether I lose my baby through miscarriage or at birth, or if my baby has to endure multiple surgeries... although we cannot imagine how great this pain will be, how long it will take us to recover... but we need to keep thinking positive, and believing that good will come out of it all, and we are already seeing bits of God's grace and love ever since we received such bad news last week.

We proceeded with our ultrasound (U/S), first with the U/S student, then his preceptor, then the radiologist herself came in to take more pictures. When no one was in the room, I took sneak peaks at the sonograms, and I saw, in baby's profile, two enormous cysts extending from baby's forehead, to the neck, the back, towards the rump. I knew that there was no mistake in the first U/S, and if anything, the cyst looked bigger and unfortunately septated. In our research, we learned that septated (walled) cystic hygroma are more rare, and less likely to resolve than non-septated cystic hygroma. We didn't expect good news from the report.

When Dr. B saw us again to discuss the results, she asked if I had anything to drink or eat, if I wanted any juice or cookies... I said I was fine, but when we sat down, she insisted. I knew it was worse than she imagined. The radiologist reviewed all photos with her. Not only does the cystic hygroma appear as a cluster of grapes, measuring at 17.8mm, the radiologist had trouble viewing the end of the spine, and indicated that baby's limbs are shorter than they should be. This means baby possibly has some sort of skeletal dysplasia; sadly, majority of skeletal dysplasia are related to spontaneous gene mutations that are lethal for the developing baby. At this point, choosing a non-invasive screening blood test such as NIPT, which only detects Down's, 13, 18 with decent accuracy, is not really useful. My heart sank when Dr. B said the chances of miscarriage is higher than we thought before the U/S.

Tonight we shared such news and our decisions with both our parents and my little brother. My sister and DY's other brothers are in HK so we haven't had the chance to update them ourselves. We can see and hear sadness in their eyes and voices, and they wished nothing the best for us and reminded us to take it all one step at a time. 

Tonight I just cried out to the Lord, remembering an old song that we used to sing at church:

Psalm 121

1 I lift up my eyes to the mountains—
where does my help come from?
2 My help comes from the Lord,
the Maker of heaven and earth.

Broken, humbled, needing prayer warriors - Jan 16th

Psalm 23
A psalm of David.

1 The Lord is my shepherd, I lack nothing.
2 He makes me lie down in green pastures, he leads me beside quiet waters,
3 He refreshes my soul. He guides me along the right paths for his name’s sake.
4 Even though I walk through the darkest valley, I will fear no evil,
for you are with me; your rod and your staff, they comfort me.
5 You prepare a table before me in the presence of my enemies.
You anoint my head with oil; my cup overflows.
6 Surely your goodness and love will follow me all the days of my life,
and I will dwell in the house of the Lord forever.

It was not an easy day at work. Tonight was fellowship night, with worship in music and doing devotions about living feverently for God.

I thank God that in these circumstances, He reminded me of how great and mighty He is, as our small group prepared the devotion material... I got to be reminded of the truth about God through Pastor Francis Chan. God has this crazy love for us, that he would cleanse us of our sins by dying on the cross for us. Why are some of us today choosing to follow Him only because we think we can get what we want? Why are we not simply laying down all the things that we deem more important than him, and simply follow him because we are worth it?

I thank Him because although our baby has such a grim condition, my fear is not only for the baby's health, but also for my spiritual health - I feared that I would lose faith in God, that I would blame God, that I would choose my own ways to deal with my grief. And surprisingly, I did not have these feelings... maybe it was because I previously experienced what it was like to walk on my own without God, and it was the darkest days of my life - I realised that that was my biggest fear. And I need to know that no matter what circumstances or season of life I am in, God is worth following.

On our way home after work, before fellowship, DY showed me a testimony of a mother whose baby had cystic hygroma as well, and her journey of faith. She taught us to dare to ask God for healing, to hold on to God's promises, to remember that God loves us - that God loves the life that is growing inside me. As I read, DY and I could not hold back our tears.

Both DY and I have come to believe, deep in our hearts, that regardless of what happens, that God has the best for us. As human beings, we are limited in our knowledge, wisdom and foresight. We cannot fathom or fully understand the many reasons that God has for the way things have happened. If we miscarry, our baby returns to heaven sooner, where there is no weeping, no hurting, no pain. Being born is a miracle in and of itself. If we are able to carry our baby to term, but the little one has defects, then providing the special care and abundant love that he/she deserves is what we need to do, and we know full well that God will look after our child and our child will grow strong in God's love. If God takes away the cystic hygroma, then alleluia for this miracle and may more people come to know God through our miracle.

Despite our decision, we still ached for our child. We did not realise how much we actually love this unborn special being that's growing inside me, until we learned that we might lose him/her. We decided to share our news with our fellowship, because that is where our family is, people who have lavished us with their love and support, especially throughout the past year as they witnessed our marriage, and now our baby. Our brothers and sisters laid hands on us and DYu prayed for us. We asked for God's peace, mercy and healing.

That night, DY reminded me of the Desert Song. Truly we are in weakness, trial, pain and battle, and truly, God promised that no weapon/enemy can stand against us, that we are as precious to Him as His one and only Son, Jesus, that no matter the season of our lives, God is with us, in the hills and valleys of our lives. Therefore, we shall continue to rejoice in our suffering.


The Desert Song

Verse 2:
And this is my prayer in the fire
In weakness or trial or pain
There is a faith proved
Of more worth than gold
So refine me Lord through the flames

Chorus:
And I will bring praise
I will bring praise
No weapon formed against me shall remain

I will rejoice
I will declare
God is my victory and He is here

Verse 3:
And this is my prayer in the battle
When triumph is still on it's way
I am a conqueror and co-heir with Christ
So firm on His promise I'll stand

Bridge:
All of my life
In every season
You are still God
I have a reason to sing
I have a reason to worship

Grim grim evening on January 15th

So today, I am supposed to be 12+4 weeks with our precious baby. DY and I took the day off so that we could have our first trimester screening ultrasound of the baby. My spotting from when I was 6+4 until 9 weeks subsided, my pregnancy symptoms improved slowly but surely. We are young and healthy, everything should be okay. We were incredibly excited to see what our precious little life looks. The sonographer took a series of photos over 15 minutes, then called DY to come in so that we could take a look at our baby. SO CUTE. She showed us the anterior view and our little one was waving his/her hands. We couldn't be more excited. We immediately sent these photos to our parents via Whatsapp.

Hours after the ultrasound, I received a call that I never would have expected from my midwife. She told me the ultrasound identified abnormalities with our baby. I thought I heard her wrong. She continued to explain that the Nuchal Translucency measured 17mm (high normal is 3.4mm) and suggestive of a large cystic hygroma involving the head, neck and back. She went on to further inform me that because abnormality was detected so early in the pregnancy, our baby would have increase risk of Downs Syndrome and other chromosomal disorders up to 50%, heart defects, skeletal defects, and worse, fetal hydrops, in which the baby rarely survives the pregnancy; therefore they have already sent a referral to a high risk specialist and genetic counsellor.

I didn't know how to react but when DY asked me what was wrong, I couldn't hold back my tears any longer, and told him the news. We just held onto each other until I could stop sobbing. DY then proceeded to research various information that is far beyond his mathematical realm of terms and language.

Cystic hygroma occurs in 1 in 285 fetuses... 0.3% chance. We are that 0.3%.