Change

I know positive changes are happening. Sammie’s presence, signs and presence are divine and perfect. She was connected to the number “5”, she was born on the 10.05.2013, she left us on the 15.10.2013, her room was 545, she was at level 5 of the butterfly ward, she left us gracefully at what I believe to be around 5 plus in the afternoon. She was here on earth for 5 months. The angelic meaning of “5” is change and always for the better. Butterflies are a sign of change and transformation. Yes, my lil sammie, I get you, I know what you want for me, for all of us.

I guess it's normal to resist change. Steven Pressfield, author of the book "The war of Art" says 

"Resistance is a negative force that arises whenever we try to move from a lower level to a higher level”

“Never forget: This very moment, we can change our lives. There never was a moment, and never will be, when we are without the power to alter our destiny. This second we can turn the tables on Resistance."

I am trying to turn the tables on resistance right now. I miss Sammie especially when I am expressing milk, early in the mornings. Now, I only express milk 3-4 times a day as I prefer to do the natural suppression of breast milk rather than to take medication to stop the supply. Although I feel connected to her and feel her presence everyday, I cannot lie that I do miss her physical presence. I allow that as this is just a phase, a process, a journey for healing. By uncovering one layer of resistance, I can open a door. Change is one of the great truths of life. I am going to be gentle and kind to myself. J

My routine everyday used to be waking up at 7am everyday to express milk, then I will prepare breakfast whilst spin a few batches of milk using my own centrifuge. Then I would sterilise the bottles and pumps parts, wash the dishes, pop the separated milk into the fridge for the fat to solidify. After that, I would drive to the hospital for my first visit in time for the morning doctor's round. Depending on the day, some mornings, I get to do some physical therapy or OT with her. :-) Usually I would spend 2 hours with her and then drive home for lunch. I would then tediously extract the skim portion of the milk out of 15ml centrifuge tubes, there are 6 tubes a batch and I normally make 6-7 batches a day. When I was extracting, that's when I would have my moment of silence, I would just concentrate and focus on drawing this liquid gold using a capillary tube, a needle and a 20 ml syringe. After that, I would package and label to deliver fresh to the hospital. Since the process was so repetitive, I took that chance to practice my Kundulini Yoga breaths..I just try to be in the moment, it felt like I was meditating. I found a way to see this as a blessing rather than complain or resent towards it.

Then I would watch the 12pm Ellen Degeneres show at Channel 9, just to get my daily dose of jokes and laughter. I found that it is just so important to laugh each day, no matter what "sh*t" you are going through. It's just so good for the soul....hehe..

I would then wash the centrifuge tubes, sterilise them and dry them for the next day. By 2-3pm, I would walk to the hospital. I lovee my walks. Really loook forward to it. There were just so many things to see on the way there, I visited the ducks at the pond, watched them do their thing, I love saying hi to all the beautiful flowers, all different kinds, so unique in it's own way. Walking was sacred for me, it was the time I could just enjoy nature at its best. 

When I reached the hospital, I would be so refreshed and joyful, and that's how I like Sammie to greet me with. A positive, happy mummy. I would play with her, express milk, talk to her, give her a bath/wash and a massage, have long cuddles and then wait for Daddy to come at around 6pm. The evening doctor's round is always around 5- 5.30pm. Everyday is slightly different, what i described earlier was a very good day. Some days, the only thing i could do was just to talk to her or just sit by her side and read her a book, no cuddles or wash as it was too difficult with the tubes and drains,

Although it sounds hectic, I insist in going for my post-natal pilates every Wednesday and my Thursdays and Saturdays 9am Kundulini Yoga. Self care and self love is important for me as in order for me give to others, in my case Sammie and hubby, I got to love and take care of myself first.

Yes, I do miss going back to the hospital. The children's hospital is really amazing. I am very impressed. The vibrant colours, the cute children drawings, the good vibes, the occasional performances and events by volunteers made a difference to my experience. I miss seeing the nurses, doctors, social workers, care managers, OT therapists, pastoral care worker and even the cleaners! They are just awesome people. I miss going to the lollies aisle at Woolworths to choose the selection of chocolates and lollies to bring for the week. I loveeeee seeing the joy in their faces when they come in to Sammie's room to say hi to us and get a treat. They work really really hard and I believe they deserve all the goodness in the world. I found that I am happier when I give and we just did that, we gave as much as we could. It's quite easy to make another person happy.

Although I miss all that, I am thankful for the peace I feel everyday since my last goodbye on Saturday. It's all ok. I know that this is a process and one day I will be at that higher level and all resistance will dissolve. There is so much love and peace and nothing is really lost. Or possibly I have gained more than what I have lost. Who knows?

We watched the movie "About Time" yesterday and I loveeee Rachel McAdams. I just loveee the movieee, I cried, what a release! haha...I like movies that are so heartfelt, that you can give your eyelids a good wash, haha. The movie tells us that it's better to live each day once, as if it was the last, and to just enjoy our life. How true!

Death is not the biggest fear we have;

Our biggest fear is taking the risk to be alive-

The risk to be alive and express what we really are-

Don Miguel Ruiz.

Thank you Heartfelt foundation!

I love photos, I think I may have a passion for photography. As photos are able to capture the moments,  awesome details, the memories, they are just so important to me.

I always dreamt of having a professional photoshoot for our family and thanks to heartfelt, they made it happen for us. Thank you for giving us the gift of photographic memories of our last final hours with baby Sammie! :-)

Birdy - Wings (Official Video), loving this song, :-)

Saying goodbye to my precious Sammie

Life is a gift. Only when we lose something, only we see the value of it.  Thus, i feel that it is so important to be grateful as being thankful and grateful, I can see the beauty and the goodness I have at every moment.

I am grateful that I am able to say goodbye to Sammie peacefully. On the 13th of October, which is my grandma's bday, my baby's heart stopped. Hubby was there when it happened. My heart sank so low when I heard the loud emergency alarm, I somehow know that it was from Sammie's room. A whole team of amazing doctors and nurses ran toward her and managed to resuscitate her and bring her back to life. They were just so professional, organised and they knew what they were doing. We were told that although we have managed to save her, her downtime was 5 minutes and her kidneys were not working already. If she didn't wee, she might not make it through the night.

Guess what, she did wee and poo-ed even! I remembered she opened her eyes,  moved her eyes, licked her tongue the very next day trying to tell us that she's ok. She is just so amazing.

On the 15th of October, when the doctor told us the results of the MRI of her brain, I knew that Sammie had chosen and it was time to let her go. We cried hard, when he said it out loud. It was just painful to accept this fact as I love her so much but I knew that this was coming. We decided to stop treatment as a team as it's the best for her. I felt that sense of peace that I didn't make the decision for her, she chose and I respect and honour that.

Compassion. That's what we received throughout the 5 months. I never fully understood the word until that day. We wanted to take her out to the gardens and the wonderful team at the RCH made that happen for us. Our social worker organised everything for us and our primary doctor and nurse stayed with us throughout the whole afternoon. We had professional photography done, we cleaned and bathed her, we cuddled her for very long at the garden, sang to her and said our last words. It was just perfect.

Final Goodbye:
19th October, 10am at the sunken garden, Queens Park

It was a day of tears of sadness and as well as peace. It was a day to remember and acknowledge her life and our celebrant managed to do that so well. It was the day I know that from now on, I can always choose love than fear. It was the a day we received so many kind and comforting words, hugs and support. I still have faith that joy will come. Joy is everywhere if we look hard enough.

Thank you from the bottom of my heart for coming to be there for us. You know who you are. We are just very lucky and deeply touched to get all the support. I will let the pictures tell the story.

Sharing the verse by Jim Howard:-

Where I have gone I am not so small.

My soul is as wide as the world is tall.

I have gone to answer this call,

The call of the one who takes care of us all.

Wherever you look, you will find me there,

In the heart of a rose, in the heart of a prayer.

On butterflies' wings, on wings of my own,

To you, I'm gone, but I'm never alone.

I'm over the moon, and I am home.

Love to all, peace to all, let the heart lead the way.

Kutless - What Faith Can Do (Official Music Video)

Sharing my speech/eulogy at Sammie's beautiful memorial service

I just thought i should share this for all my friends and family all over the world whose life has been touched my our lil sammie...

Thank you everyone for coming today. It means a lot to us that you are here to support us during this vulnerable time. There is a quote by Brene Brown which I love and I would like to share:

“ Owning our story can be hard but not nearly as difficult as spending our lives running from it. Embracing our vulnerabilities is risky but not nearly as dangerous as giving up on love and belonging and joy- it is the experiences that make us the most vulnerable. Only when we are brave enough to explore the darkness, will we discover the infinite power of our light”

(Thank you Julie from little waves support group for sharing this quote with me)

My Dearest precious Sammie,

Thank you for choosing me to be your mummy. I am just so blessed to have you in my life. I will never forget the day when you were born, 10^th May 2013. Although I didn’t hear a cry from you, when I laid my eyes on you, even just for that 2 minutes as the baby doctors needed to work on you, I fell in love with you immediately. I felt this sense love, unexplainable bliss and warmth enveloping my body and I knew I had to do my best to nurture and protect and love you unconditionally. When Lisa, our baby doctor at the Royal Women’s hospital told me that she had managed to drain the fluid out of your chest and that you were responding well, I was just so relieved and thankful. I was told before the birth that if you survived the birth, it’s a miracle. Thank you for giving me that miracle.

You are amazing, Sammie. I believe you came 7 weeks early into this world to celebrate mother’s day! Everyone said you were very swollen, but I thought you were very cute and chubby! It was such a bittersweet mother’s day as I was told by the doctors that you were requiring maximum support at the Neonatal Incentive Unit and if you didn’t wee, we should prepare for the worse as there is a low chance that you will survive the night. They brought out the big, scary high frequency oscillator ventilator and then you seem to respond well.  You are just such a drama queen, my lil baby. Day after day, you slowly improve, you did a wee, a poo, and you listened to me to fight on and give your best. You are such a fighter.

I love you Sammie, for showing me the power of love, for teaching me about faith, hope and miracles. You thought me to appreciate every moment and to be present. You taught me to be very very patient. I had my first kangaroo cuddle at Day 24 and it was just so magical. You were perfect, the breathing tubes, IV lines, chest drain tubes didn’t matter to me. I heard your first soft cry at Day 80, slightly over 2 months when you were extubated to CPAP. And You even breathed on your own after 4.5 months. I knew that when there is hope, there is faith, where there is faith, miracles can occur.

On the 31^st of August, we started on the centrifuged breast milk trial after countless failed attempts with the monogen formula milk. I knew that I cannot give up on you just yet. Mummy is just so lucky to have found the little waves Facebook support group whereby I got to know an American mom from Florida, Ginger who told me that she believed centrifuged breast milk healed her baby.   It took a lot of courage to present the articles about it to your doctors and request for it to be an option for you as this has not been done in Australia at all. It was tedious, expressing for 4 months with faith to maintain my breast milk supply but I had faith in you. I was just so happy when I could finally feed you with my breast milk after 4 months!!!  I didn’t mind spending 6-7 times expressing milk using a breast milk a day and spending 2 hours a day to spin the milk using a centrifuge to make fat free breast milk. I just wanted you to get the best thing ever! I felt so happy that I could have a way to provide to you. I am glad you loved it as you went up to full feeds on it. I hope you felt loved and yes, you deserve the best. I think how great are you to leave such a legacy as this is going to help other babies in the future.

Sammie, Although there were lots of tears of sadness and grief, especially when you weren’t doing so well, I found a way to find the joy and see the gift in this situation. You were such a blessing to me and I love spending my time with you. I always look forward to cuddle times, nappy changes and wash/bath times. I just love to kiss you, read to you and sing to you. Thank you for giving me a chance to do all that over the past 5 months.

Your passing is such a shock to us as you left us at what I believe to be your best condition. I know you were listening at the doctors’ round last friday, this is really not part of the plan. I guess God has better plans for you. I believed that you chose to leave with style, at your best, looking your best. You gave me such a fright on the 13^th of October, when your heart stopped. I thank my lucky stars that our primary Doctor, Anastasia was on duty during the weekend as she rescued you so that mummy and daddy can have extra 2 days with you. Could you have planned this all along? Sammie, don’t you think Anastasia is such an awesome, amazing, kind and smart doctor? We all just adore her. You left us on the 15^th so peacefully and gracefully and it was just perfect, we could bathe you, do footprints and handprints and talk to you, sing to you before you took your last breathe.

Dearest Sammie, I saw you the next day after you passed on as a butterfly. A yellow butterfly fluttered really quickly passed me at the underground carpark of the Children’s hospital, Daddy was carrying your ducky swing chair and we were just talking about you. Thank you for that. I asked you to give me a sign that you are ok and happy and you did. The butterfly ward was your home for many months and it was just perfect to see you as a butterfly. I just felt so much peace and it did make me smile. Sammie, I have promised you and your daddy that I will take care of myself, I will be strong for you. I will never give up finding way to be happy. You have shown me courage and strength and you will always be my inspiration.

You were here on earth for a moment but left with a lifetime of love.  I am forever grateful for that. I love you forever.

Loving you always my precious baby girl..

(10.05.13-15.10.13)

I love her unconditionally. She will always be my precious little angel who had taught me so much about love and life. With that, I truly thank her for choosing me to be her mummy. I wouldn't want to have it any other way. Everything is just perfect the way it is. 

Mummy loves you, Daddy loves you, baby sammie, sammie sammie...

3 Months later..Day 154

After numerous times of heel pricks for blood test, ultrasounds, MRI scans, CT scans, countless times of chest x-ray, ,  Nil by mouth, 7 trials on monogen feeds which failed, intubation of breathing tube and extubation, going on CPAP and off CPAP and back on CPAP and off again. Going on high flow and off High low to low flow of 0.5 litres and on air and back to high low.  Having high doses of sedation, morphine or fentanyl..

Countless times of suspected infection, blood cultures, lumbar puncture..

Broviac line surgery, a couple of long lines and being IV line free..

3-4 times of chest drains..

being swollen and not swollen...

Tears of joy and bliss, tears of sadness, loss and grief....

My new life as a mom is just no doubt a huge roller-coaster ride.

The thing i learnt is that I gotta celebrate the ups and also the downs. Although it's just scary to celebrate the good times because I don't know when is the next down, it could be mins, hours or days away, I learnt to trust, trust that although it may seem traumatising sometimes, the joy will come. Without the bad times, you can't appreciate the good times. They go hand in hand, we need the opposites and the relativity.

Another thing I learnt is that it's ok to be vulnerable.It's painful to see your baby go through all these procedures. It's normal to feel this pain. I found out that initially you will numb this pain to survive in this situation. Now, i realise that it is ok to express those raw, negative feelings. Expressing it and allowing it to pass, i can let go of that emotion and move on.

Joy is when I watch Sammie sleep, occasionally sneaking in a smile which never fails to warm my heart. Joy is when she drinks my centrifuged breast milk using a NG tube. Joy is when I get to cuddle her, hold her close to my heart and just be in the moment with her. Joy is when i hear her first cry after she was extubated from her breathing tube at 2 months. Joy is when I watch her cry. Joy is when she first wore clothing. There are just too many good times.

Sammie has come a long way, graduated from Intensive care unit to special care nursery! She was breathing on her own for 2 whole weeks before she had consistent fevers and we didn't want to push her too much by giving her low flow of oxygen of 0.25 litres.

Having my baby in NICU for months is not normal, not any bit normal. It's good having a husband who is tough, who make things a bit more normal for me by keeping up with our routine of cooking yummy dinners. So many times when I feel insecure, afraid about what's going to happen to Sammie, he will reassure me. I am lucky to have him.

I am very grateful for kindness and support i get. You know who you are.

I have faith and let go and allow things to unfold, be it good or bad, and I believe that's when we can see the wonderful miracles of life...