Big HELLO to all Steemians! This is a long intro, so thank you in advance for time & love 😍

iamjadeline (74)in #introducemyself • 6 years ago (edited)

So back in July 2014, at 30 weeks of pregnancy of my 2nd son Jansen, my husband and I were told that our son has right-sided CDH. Just three alphabets "CDH", congenital diaphragmatic hernia, our whole life took a detour to an unprecedented journey. We were told some people would terminate the baby or you risk seeing him die in your arms. His right diaphragm had a hole therefore enable the liver, intestines and right kidney to enter into his right chest cavity pressing his lung right hence the right lung couldn't grow. We decided to go ahead and give him a chance to fight for his live.

1 Day old

I sat there didn't know what to feel or how to act. A baby is born but I didn't get to cuddle but just witness him fighting for life.

Above shows those with left-CDH. Jansen has right-CDH, so everything is the other side. Because his one affected the right lung which is the bigger lung of both, so his is more life threatening.

He spent 1 month in ICU, and 3 months in pediatric ward, went through 3 surgeries; 1st is to fix his right diaphragm while putting back all the organs to its original place, 2nd is to tighten up his stomach opening (fundoplication) to fix his severe reflux, 3rd is to create a hole at his stomach (gastrostomy) to feed him via tube into stomach as he had forgotten how to swallow entirely. He came home at 4 months old with medicines, a breathing machine (bi-PAP) to support his lungs, a suction machine for us to help him suck out his phlegm/secretion from his airway, and his feeding apparatus (to feed via stomach).

Wound from 1st surgery

2nd & 3rd surgery done at 3months old. You can see the feeding tube sticking out at belly area.

Finally home at 4months old

At last, big brother got to see his younger brother for the 1st time.

I once read a touching article from my friend's friend, Emily Perl Kingsley, on raising a child with disability. It goes like this.

You suppose to have a great fabulous vacation time at Italy, then when the plane had landed, the stewardess announced, "Welcome to Holland". "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you have no choice but to go get a new guide book. Learn new language. Get to meet whole new group of people you have never met. Everything is different. Slower-pace. Less flashy. Everyone you knew were bragging about their good time at Italy, and here you are, adjusting to an entirely new lifestyle. The pain is real and it will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland. (article by Emily)

My husband and I weren't ready for a child with complication yet we have one. Hospital appointments, therapies, feeding tube apparatus, syringes, gauzes, breathing machine, suction machine, etc, had been our lifestyle. No more travelling. And I quit my job as a pastor, I stopped worship leading at church, I couldn't be a tutor/teacher, and I become the main caregiver for my son. We have learn to live a day at a time, and trust me, we have never been thanking God for life so often as now we do.

Fast forward to now, Jansen is 3 years 4 months old. Doctor had been gradually weaning him off breathing machine, from few hours to half day, and he just weaned off from bi-PAP at 3 years old we hope he won't need it forever. Yay! For someone who had been given 20-50% chance of survival and now he is still among us, we couldn't ask for more. Now he is learning to eat from mouth. There is still a journey to go, still combating some challenges & complication from CDH, but we will not give up. Sometimes I lose the battle. Many times I lose hope. But my friends at the same journey (I found them through facebook) told me we will eventually win the war.

Celebrating 1st birthday

Celebrating 2nd birthday

Celebrating 3rd birthday this year and hope more years to come

I have been desiring to do something for Jansen to create CDH awareness and also to do something at home (as I stay at home most of the time for my son) that can help to support the family's finance a little (if not more) as expenses are huge when you take care of a child with special needs.

My husband came across Steemit and told me about it. Oh gosh, my heart straight away echoes with it and with the Steemians! Before I post this, I took some time to familiarise with it, and I just love the community here. So much to learn from. So much knowledge to acquire. I love how it works although I am still learning it. And I also hope to get support on behalf of my 2nd son, on behalf of my family, as much as I, too, will support fellow Steemians.

Anyway, I just start it off with this intro and I hope to get to know more of you Steemians, and I hope my life and my blog will inspire you to live life to the fullest!

ops so much "I hope" words here because I am practically living by hope and faith everyday. Ever since I saw how Jansen fought for his life, I never dare to take life for granted anymore.

If you are interested about my life or Jansen's life, or my family's life, feel free to follow me. AND if this blog beats with your heart, please help to spread it around. Thank you from the bottom of my heart, and on behalf of Jansen. On behalf of advertising and spreading CDH awareness in a way.

Scars meant to show he won some battles.

Still being tube-fed as he learns to chew and swallow.

Thank you for reading.

😍💞With much love,
Jadeline
(usually people call me Jade)

#introduceyourself #blog #cdh #teammalaysia

6 years ago in #introducemyself by iamjadeline (74)

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nkkb (55) 6 years ago

Welcome to Steemit all in the family