Battles and misadventures of Little H and friends

I have a thought. To write a book. To draw a book. Just for Little H.

These are stories, of his adventures, of his battles. With his three companions – the tiger, elephant and donkey. Stories of his bravery and courage. Stories of his strength. Stories of how he battled monsters and giant evil creatures. Stories of how he emerged triumphant in all.

It will be a story that never ends.

For as long as Little H fights, these stories will go on.

Of kindness and wistfulness 

It’s not that I am too proud or stubborn to ask for help. But the idea of being weak makes me feel ill. Like I said, not an ego thing. Just that everyone tells you to be strong and the looks that they give you make you feel uncomfortable and awkward. So I always smile. And I say it’s ok when they say they’re sorry. 

This help we are receiving though, it’s made me emotional. Because it’s hard to believe that people can give so willingly without prejudice. And that they will pray for your wellbeing. 

I watched Little H as he lies down prone. It’s to help open up his left lung. His chest tubes are back in. Fluid in the lungs caused by fat that he can’t digest from the milk. My milk. I felt broken when the doctor told me that. It made me sick and sad to know that my own milk could make him sick, prevent him from recovering fast. For awhile I couldn’t express. My body refused. We were affected, even when we tried to lie and pretend we weren’t. I see the blood bag that must have been put up when I went to the room to rest. I wonder if all his life he will be needing regular transfusions. 

I was wrong, he does have a hypoplastic left heart. That’s why the DKS. My little boy, breathing and living with one ventricle and for now, one and a quarter lung. Mixed emotions. I saw a new patient, newborn, being carried by mother and father even with tubes. Should I have insisted on carrying him that time in the NICU? Would that have made the difference? 
At least he would know what it was like to be held, to be loved so unconditionally, to be in the embrace of his mother. 

At least, I would be able to hold him and smell him and kiss him before the surgery, before he spends so much of his time in his bed. 

These moments come and go. I’m not wallowing in pity or misery. It’s just sadness, wistfulness. Being hugged by the other kids is nothing, than hugging and being hugged by your own flesh and blood. 

So my dear child, get well fast. Be strong. This is a test for both of us. I fight this fight with you. No matter what, I love you with all my heart. 

Fight on, fight strong my love. 

Interim bill

Little H has been in the hospital for 54 days. On 11 July, I finally plucked the courage to go to Patient Services Centre to get an interim bill. I needed to know what was the bill so far. 

I calculated that if he were to remain warded for another month, the total would be about 130k. After government subsidy, his and our medisave, there would still be some leftover that we would need to pay. 

I’ll think about that later. For now, his health and recovery is what’s most important. As the husband puts it, money can always be found and earned. But health? You can’t put a price on health, or rather, you can’t put a price on life. 

Slowly but surely 

Alhamdulillah, Little H is slowly improving. The pleural drains for his left and right lung have been removed, so has his dialysis machine. His colour has improved greatly and he’s moving and wriggling about so much more. It reminds me of when he was in the NICU, before his first cardiac failure, before he was intubated. It fills me with joy everytime I see him moving. Just yesterday, we saw him smile and laugh when my dad was around. 

I am so proud of him, this little Warrior. Everyday is a blessing for us. Every moment is precious; whether he is awake or asleep. My heart melts everytime I look at him and I pray and pray for his recovery, for the day we get to hold him, to bring him home. I know that day is still far, but u am certain that it will come. 

To date, this experience has taught me so many things. It has definitely made me feel so grateful for everything in my life. My husband, who has been with me through this. Who has been my strength and wake up call, my comfort and protector. My parents who come down every night without fail to mengaji in the room with Little H. My friends who have given me support and been there to help me up when the situation seemed so dark. My colleagues who support me and who make me laugh and smile when I needed it. 

I am grateful and blessed to be Little H’s mother. I am thankful to Allah swt for His grace, His love, His compassion and His gift. I am not a religious, pious person but I do believe in my faith. This challenge has made me want to be a better Muslim. 

I love you my little Warrior, my son. Remember. 

Fight on, fight strong. 

Mummy is with you always. 

Breather

Day 3 since Little H’s collapse after he was taken off ECMO. They’ve stitched up his chest and everyone now is praying for him to recover on his own. On x-ray, his left lung doesn’t seem to have improved. But looking at my little boy and how bravely he’s been fighting, I strongly believe that it’s getting better. It will take some time but my boy is strong and I know all his organs will get so much more stronger after everything they’ve been through. 

How are you? 

Whenever someone asks me this question, I honestly have no idea how to answer it. The laziest and easiest is to say I’m ok. 

But I’ll be honest, I’m not. 

I have enough worries on my mind, things not to think about because they can lead you on a very dark path. Things to try and think about but not be too happy, like little battles won. Things soon to worry about but you can’t and shouldn’t because that’s way down the road, shouldn’t even be there because the first boss level hasn’t even been cleared. 

Even if you gave an honest answer, you get the same response. Gotta be strong. Gotta fight. I think I’ve been doing that this whole time. But how exactly do you show people that you’ve been strong? That you’ve been fighting? You can’t and anyway, what they think or what they think they see, shouldn’t matter. 

So long as your son knows. And that’s what matters the most. 

Fight on, fight strong my love. 

Thank you

I cannot thank my family and friends enough. 

For being there for us. For praying for us and Little H. For being supportive and encouraging. For being our many different pillars of support. 

We would not have been able to be as strong as we are right now, despite the challenges that we have been going through, if not for you all. 

From the deepest depths of our hearts, we thank you and we love you all so much. 

See Little H, you are loved by so many. All of whom are fighting alongside you, praying for your recovery and well-being as well as ours. 

Yesterday Little H was taken off his ECMO. For the first hour he seemed OK and stable. His condition deteriorated after and again my precious son went into another cardiac arrest. His left lung still couldn’t inflate and his right lung and heart struggled to keep afloat. The doctors put him on full ventilation support and gave medication to ease the pressure on his right lung and heart. 

I had been so hopeful when the ECMO was taken off. Now it’s another hurdle to get across, for his body to keep fighting to keep his oxygen levels up and his carbon dioxide levels down. It was terrifying to see the numbers. Terrifying to see so many doctors waiting in the ICU with us. We could only wait and pray for Little H to pull through on his own. The surgeons didn’t want him back on the ECMO and neither did the ICU consultants. To do so would be to restart the whole process again and with it the risks of bleeding and clotting that had worried us last week. 

Pull through he did, my special brave little Warrior. I have never been so proud of him. We are with you, every step of the way. Always. 

So fight on and fight strong my love. 

Belated birthday

Just want to say thank you to the nurses who were about to sponge and shower Little H (process can take about an hour because they have to be careful what with all the tubes and lines our little Warrior is attached to), who gave us 5 to 10 minutes to pop into his room those minutes before the clock struck midnight on 24 June. 

I may not be able to bring my present home, but I got to be with my small little family when the day turned to my birthday. And of course, Hari Raya Aidilfitri. 

Happy birthday to us my little caterpillar. We’ve survived this battle together so far. You’re a few days of a month old and I turn 32. There’s still plenty of great amazing adventures waiting for us. And we can only jump start it once you’re all well and better ok? 

We’ll be right here waiting for you my dear heart. 

The most special present I’ve ever gotten in all of my life. 

Fight on, fight strong my son. 

Can we say goodbye to ECMO? 

Honestly, simple procedures can still make my heart race. Not in the good adrenaline way. The one way to counter and manage it is to tell yourself that these surgeons are capable and that everything will be alright. Excessive worrying and anxiety isn’t going to help anyone, may in fact make things worse. Ever heard of a self-fulfilling prophecy? 

So Little H undergoes a procedure right now where the surgeons will see if he’s ok enough to not be on the ECMO machine. We don’t want him to grow dependent on it because then he won’t ever recover fully and won’t get to come home. If he is ok without it then alhamdulillah, the next step is for his left lung to recover and gain the momentum to inflate and function. If not, it’s ok, they’ll be changing the circuit and so instead of a VA it’ll be a VD (what? I’m not a surgeon and I cannot remember in detail what he said VA and VD are and I’ll Google it later). But in simpler terms, Little H’s heart is ok so far. They’ll put the lines in his neck and temporarily close up his chest so as to prevent any infection. 

Thats the plan but anything can happen and change depending on the situation and on what the team decides beat for our little Warrior. In the meantime I’m going to wait very patiently and quietly in the Rmh until they tell me it’s over because there’s a difference between waiting and seeing your son’s room turn into a makeshift operating theater with strange worrying and alarming beeps and sounds as compared to waiting in a room where no one can see your tears fall. 

Fight on, fight strong my love. 

I’ll be waiting right here.