This is my entry for Power Of Positivity by @karenmckersie to spread more positive vibes on Steemit platform, which is very needed nowadays.
After my miscarriage on March 2013, both my husband and I fell into despair, so was my firstborn son as he longed for a sibling. We told ourselves to stay positive and we tried it again 6 months later. Good news was we got it! I conceived. We were beyond excited although back at my mind, there was a little fear lurking, "Will I miscarriage again?". However, again and again I told myself not to entertain such thoughts.
Everything sailed smoothly and on May 2014, I was feeling huge (and there was sharp pain underneath my belly skin) and I practically walked like a penguin. There was no more fear of miscarriage. Baby was growing well and oh my he was bubbly too, always kicking me. Yes it is a 'he' - boy. We could not wait for his arrival. At the end of May, we had another routine check up. As usual, we were always eager to view him through the scan. Plus our gynae was always cheerful, whistling as he scanned.
So he scanned and scanned. This time he took a little longer than usual, plus he stopped whistling. "Dr. Tan must be very tired today," I thought. Then he started to say some words that our mind could not digest in the beginning. "Your amniotic fluid is very high in volume meaning more than usual. We called it polyhydramnios. And also there is fluid around your baby's lungs. So when he is borned, he needs minor surgery to suck out the water around his lungs. Hmm...should be okay after that." Little abnormality like this made our heart dwindled. My husband and I tried our very best to not be affected and stay positive. We were asked to see him next week.
"Looks like there is intestine in your baby's right chest cavity, you need to be referred to another special fetal-care gynae and also be transferred to another hospital that is specialised for this case. Your baby has Congenital Diaphragmatic Hernia at the right side, which is a rare one, usually on the left. That explained your excess amniotic fluid. Your baby's right lung is being pressed by other organs that slipped in, so he doesn't swallow properly hence the fluid keeps increasing. So you felt huge and extra painful. He would be borned and immediately needs help at ICU," Dr. Tan told us on our next routine follow-up. We could tell he tried his best to paint the most positive picture. "Some gynae may ask you to terminate the life but knowing your faith, you won't, so please pray, ask your church to pray too and I will pray too," that was the last we heard from our beloved Dr.Tan before we were transferred to another hospital and under another gynae.
Congenital Diaphragmatic Hernia. Three words that changed my life.
www cdhuk.co.uk
And we had around 8-10 more weeks to go before Jansen's arrival. Life became very hectic I did not have a chance to be negative. We went through all the procedures to change hospital and introduced ourselves to the new gynae that would be in-charge of our case. To sum it up, our baby's diaphragm did not develope well at the right side causing intestines, right kidney, half liver and part of the stomach to be up at his right chest cavity, sharing room with his right lung, so this lung could not grow. Did I have my moments of sorrow? Yes. But situation did not allow me to sit in tears. We've got alot to prepare and expect. Unending reading up and research, crying and praying, hoping and keep believing.
I managed to carry this baby to full term 40 weeks, with alot of sharp pain underneath the skin, as my amniotic fluid reached critical high volume. Sometimes I felt my belly skin was going to tear apart, but I endured, as gyane told me the longer I let him grow, the bigger size he is, the higher chance of survival. My love for him caused me to overlook the pain, and I continued to carry the big bowling ball inside me. When he was about to come out, fear paralysed me. The thought of him needing to start fighting for his life made me reluctant to let him out. Inside me, I provide him the oxygen, he did not need to use his lungs (which are underdeveloped at the right side). But eventually he has to be out. He must struggled. He must fight.
3rd July 2014, our fighter is out!
1st day of life.
There were many ups and down throughout his days in ICU. Sometimes I felt full of faith. Many times I was like in a tunnel of darkness, the light no where to be found. I cried due to fear. I laughed due to extreme pain. I could only remember love taught me to be strong no matter what. With alot of tears, yes. But also with resilience. His surgery to repair the hernia at 7th day old was a successful one. What happened next would determine whether he stayed on here or leave to heaven. We saw him fight. He was sleeping most of the time due to sedation but we sang to him everyday. We read books with him. We stroke his hair daily. We told him "I love you" countless time. His appearance on earth caused me to realise love is the most powerful force to make you positive. One day he gave us a surprised when he 1st opened his eyes. My heart melted and despite the tubes all around his body, he is perfect to me. My baby boy is the most perfect gift from heaven. And I knew he would make it.
Here is a short video of him opening his eyes. It gave us the positivity to move on fighting with him.
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There was improvement in his oxygen reading hence they extubated him and let him breathed on his own with various breathing ventilators.
Jansen spent 1 month at ICU and another 3 months at pediatric respiratory ward, while hospital had become my 2nd home. He had his 2nd surgery to help with his severe acid reflux and also to insert tube at his stomach for stomach tube-feeding. I had chanced to learn many things; how to tube-feed baby, change dressings everyday, perform suction to suck out phlegm, resuscitation method, and also to cry inside my heart so not to cry in front of Jansen.
After 2nd surgery at 3-month-old, you can see tube sticking out at his abdomen, that is for tube-feeding.
Doctor did not let him eat from mouth as he was having some difficulty breathing and sucking, so they wanted to cut down any risk, hence the stomach tube-feeding.
Finally home!
Great grandma giving him blessings. We were asked to wear mask to keep him clean as his right lung was still bud-sized. Salute his left lung doing all the job solo.
We came home with an expensive breathing support machine, a suction machine, feeding apparatus and medicines for reflux and medicines for pulmonary hypertension. At 6-month old, he receive his first miracle whereby the hole at his heart closed up by itself. We were beyond thrilled, words could not express how grateful we were.
There were many appointments, week by week and we diligently attended each one to help with his progress.
Physiotherapy. He managed to sit up on his own without support at 8 months old. Yay!
Follow-up to check his lungs.
We had learned that to stay positive is the best for Jansen and for us. Any slight negativity will flush our hope down the drain and I will not let that happen. Three words - congenital diaphragmatic hernia - that changed our life, but Jansen has taught us that we would never know we are a fighter if there is no battle. He fought the battle and still fighting it. We, the parents, have learned so much from him, more than what we have taught him. Pain is for a moment, joy is everlasting - is what our boy shows us everyday. Because of him, I know miracle exists. Because of him, I know that if there is a will, there is a way. Because of him, I learn that staying optimistic and positive is the way to live. I thank God for his life and I had never given thanks so many times in my life before this.
Jansen: My parents never give up, so I do. I was officially off my breathing machine at 3 years old. And now I started to learn chewing and swallowing. I may be slow compared to normal child but I am positive that slow and steady will win the race. And I love my brother, my idol. Here I present to you my snowman.
Thank you for reading my journey with Jansen and congenital diaphragmatic hernia. For those who are battling sickness and disease, never give up, keep having positive vibes and fight till the end.
A short video of our warrior.
click here for the video
Faith is the confidence that what we hope for will actually happen; it gives us assurance about things we cannot see. (Hebrews 11:1 Bible)
