The journey to save baby Sammie in utero, Part 2

4th May 2013, Saturday

4th May was meant to be the day I celebrate my pregnancy with my girlfriends and colleagues who become close friends. I had marked this date in my diary months ago and was really looking forward to this date. I am blessed to have two people in my life who decided that they want to make me feel extra special and organised a baby shower for me. Thank you Stacey and Su, I am deeply grateful although it was cancelled. This was one of the things I have learnt to let go throughout this journey. I accepted that things do not go as plan and we just have to make the best of every moment in life.

That was the day I received a call from Dr Ricardo, it was a saturday but yet he made an effort to give me an update of the amnio test for down syndrome cos it was important. He said that the baby didn't have down syndrome and it's a 100% test. I never felt so relieved in this world, as if Samantha had down syndrome, we might have to make the toughest decision of our lives. 

I had hopes that the procedure would work and that the fluid in Sammie's lungs would not accumulate. However, when Dr Khai who was on duty that day did a quick scan, we saw the fluid in her lungs but were not as bad as before. At that moment, I felt defeated, disappointed that my prayers weren't heard and that the road I am on would be more difficult. 

6th May 2013, Monday

I had learnt to take this day by day because of the intensity of everything. I felt overwhelmed when i thought about the future. Too many questions, not many answers. There were so many uncertainties and it was easy to give in to worries and fear. I know I had to choose love and trust faith to cope with this.

Overtime, the fluid in my belly accumulated as well and I started to feel the discomfort again. At 7.30am, before hours, Dr Ricardo did a scan for me on his own time. I thank my lucky stars to meet a person as passionate about his work as him. He really took care of me and made me feel hopeful and important, I could trust him. Trust was something that I have learnt and it gave me comfort to be able to completely trust him, without questioning his abilities or capabilities.

The scan confirmed that fluid has gone back to her lungs. I can choose to cry and be sad over it or I can be positive and strong. I chose to be positive and to continue to have faith.

He then told us that he would talk to the paediatricians/baby doctors and as well as get 2nd, 3rd, 4th, 5th opinion from other expert doctors. We didn't ask for him to do that, he just went the extra mile and we fully appreciate that he was doing everything he could for us to make a better decision.

7th May 2013, Tuesday

I felt the need to meditate everyday, it mades my mind and body feel better. So I did metta chanting, which is the loving kindness meditation I have learnt from attending buddhist camps. I did breathing meditation so that I could relax my body and mind. I prayed everyday with hopes that they would be answered.

I started writing my diary where I could pour out all my feelings. Everytime I wrote, I felt the relief, it was therapeutic. I cried every morning since the 1st of May, I asked Priscilla why I am crying so much when i just want to be positive and strong. I couldn't comprehend the two. She told me that I have got to embrace the emotions, and not judge. If I felt like crying, it's ok to release them and that's when you would be truly in the moment and honest with the experience. Everything happened for a reason, I believe that everything was divinely timed, Priscilla was back in Australia on the Monday and at one point i was so down, I knew I had to call her to find ways to cope or to understand why I was reacting that way. 

When Dr Ricardo and Dr Angie came and visit me at my room, I had tears in my eyes, I had to quickly wipe them dry and forced a smile, with hope they didn't notice my puffy eyes. As hubby was not at the hospital yet, we put him on loudspeaker. He told us that given the first procedure didn't work, we have another option of inserting shunts on Sammie's right and left chest. The risk was greater due to a bigger needle being used to do that and there is a risk of the baby not surviving as well. Also, I could go into labour. He said if we agreed to the procedure,  Dr Nicole, the current head of ultrasound and himself would perform the high precision procedure the next day 5.30pm, after hours and I would be registered as public patient as it was really expensive. If the procedure was successful, I could prolong my pregnancy and it would ideal as baby would have a chance to expand her lungs and recover from the odema and fluid retention.

Wikipedia:

In medicine, a shunt is a hole or a small passage which moves, or allows movement of fluid from one part of the body to another. The term may describe eithercongenital or acquired shunts; and acquired shunts (sometimes referred to as iatrogenic shunts) may be either biological or mechanical.

I knew straight away that I wanted to do it, although there were so many worse case scenarios. I had faith, i need to as it I am making a decision on behalf of my daughter. I need to give it a go. I want to give myself the possibility that it may work so that I would not have any regrets. I had to believe that it would work, so that I do not allow fear to take over.

I could relate to this song "What faith can do" by Kutless.

It doesn't matter what you've heard

Impossible is not a word

It's just a reason for someone not to try 

Everyone's scared to death

When they decide to take that step

out on the water

It's be alright

Life is so much more

Than what your eyes are seeing

You will find your way

If you keep believing

Dr Ricardo arranged a meeting for us with the Sue Walker, Fetal Medicine unit in the Royal Women's hospital for us to get a second opinion. Sue walked us through everything, our family history, possible causes for the condition, what does it mean for us, what to expect from the procedure, risk that we would be taking doing the procedure. My hands were sweaty as we went into the details, hubby was calm and asked all the right questions. Our decision didn't change and we want to go ahead with it. That was the best thing we could do at that point in time.

8th May 2013, Wednesday

I was discharged from Frances Perry House and admitted to the Royal Women's hospital.

I told myself that I just needed to stay strong and believed in all the positives of the procedure. This time I knew what to expect, I was clear. I was nervous again, i had to constantly remind myself, everything was going to be ok. All is well in my world. Dr Nicole and Dr Ricardo performed the shunting which was tricky, I closed my eyes, tried to meditate but I could hear that they were struggling to get into the right position as Sammie was moving. The anaesthetic given to Sammie's feet didn't work as well as she was still moving. It was scary but I remained calm and still, knowing that panicking would not make things better. It was difficult to do it as baby was very swollen. Finally, at the fourth try, they have managed to successfully insert a shunt and the fluid was draining from her chest.

I have never felt so relieved and happy.

I was brought up to the birthing suite for close monitoring and Dr Ricardo told the nurse that without a senior doctor's consent, no one was allowed to perform a C- Section on me. I feel safe and secured hearing those words. I knew then that I was well taken care and I coud relax.

They monitored me on the CTG for baby's heart rate and my contractions and so far it was all good. They put me on for the whole night and initially i was worried that I was having contractions and would go into labour or that my water bag broke and was leaking. I had to continuously remind myself to not think about that and not worry.

9th May 2013,  Thursday

I survived! I didn't go into labour, I thanked my uterus. Haha. 

Dr Nicole Woodrow offered to do a scan after hours that day for us. I feel so blessed and grateful that all these people are helping us unconditionally. I mean they didn't really have to go the extra mile for us. There must be something I have done in the past to deserve this goodness. I welcomed it with an open heart.

She said that her husband told her at midnight that "Sue's alright" after reading a text message from Dr Ricardo. At that moment, my heart felt so warm and fuzzy, felt the love.

There were lots of hope that this shunt procedure would work. However, my prayers were not answered as the fluid accumulated in Sammie's chest again. When we saw the scan, hubby and I were silent. My heart felt like it broke into pieces and I admit I was disappointed. Most likely the shunt was blocked as baby was really swollen. The fluid around my baby reduced significantly as well and Dr Nicole asked me if my waters broke but I didn't feel anything. Dr Nicole said how sorry she was that it did not work and I know there is no one to blame for this. I know that we have to accept responsibility for this experience and not blame others as doctors have done their best.

The doctors did a test to see if my waters have broke because if it did, we would have to do the surgery straight away and it wouldn't be ideal as the baby doctors were not ready and it was late at night. Phew, luckily it came back negative and I feel thankful for that as well.

That night, we knew that we could resort to welcoming baby into this world as the last chance to save her.

I cried and cried and wrote my diary, listened to metta chants and prayed. That's all I could do. I know I can be strong for this. I know everything was going to be alright. I had to rebuild the faith in me that was lost when I found out that the procedure didn't work. Hubby said he believed in Samantha and I decided to do the same. 

There could be miracles when you believe.