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.