1st one was at birth. Cord round neck x 3- tight. No fetal heart detected on table. You came out with thick meconium covering your whole body. Good body weight, term, but no sign of life. CPR commenced for 20min with all last resorts, when we were going to give up, suddenly monitor showed some heart beats. You came back. Faint heart beats, but you came back. Your daddy and mommy were told about your condition, first and only child, but with the severe perinatal hypoxia, you might not be able to make it at anytime.
2nd one was a few days after you were born. Desaturated again. But somehow you came back again after CPR. Family conference done, your family agreed for DNR (do not resuscitate) if you continue to deteriorate. Somehow I feel people who choose to resuscitate when their loved ones are at the end of their lives are very selfish. Ask yourself: you want them to be better? Or you just want them to stay with you for a little bit longer? With HIE stage 3 (severe hypoxia causing multi organ dysfunction), your parents know you are not going to grow like any other kids. You won't look at them, smile at them, start sitting, standing then running like others. You won't even know how to roll over when you are 5months old. But they love you. For 74 days that you stayed in the ward, I can see nothing but their love for you.
Your mommy comes every morning to sit next to your cot, sometimes we allow her to hold you in her arms. Your daddy comes every evening to read Yassin to you. Next to your little head there's always a small al Quran which your dad loves reading to you. He would bend his body for 15min to whisper the holy phrases to your ears. He would laugh so happily when you move your hands a little or twitch your facial muscles abit when they talk to you.
Sometimes I wonder how do they feel seeing the parents of their neighboring cots. When the babies next to them can cry, can smile, and you can't even latch to your mom's breast. When they see me they always smile at me, greet, and we always joke aground. But it always hurts me when I think about how much they cried when they agreed for DNR. How many times would they have cried at home after you were born.
So I always tell myself that the least thing to do for you is to care for you as much as I can. Looking at your cute handsome face I just can't accept that you are not growing up, and God is going to take you away anytime. When I was in NICU I always go to hug you whenever I'm free, because I always think you need more love than other babies. When I take blood or set line for you I always force myself to get it in only one prick, because you have suffered a lot and I don't want to cause you anymore pain. When you were fit to go home, I felt no less happier than your family.
You followed me from NICU to 4A for 2 rotations and you came back again now. Finally grew up a little bit more, you are admitted to paediatrics ward! You weighed a little bit more now at 3 months old, didn't grow taller at all, but your limbs are stiffer than before. Your handsome little face is covered by Bipap, you struggle to breathe, I know how much you want to cough but you can't.
That day during morning rounds we asked if your parents want to agree for DNR, and your mom weeped again. But I had so much confidence in you. You are going to grow up, with multiple hospital admissions but you are going to grow up. After so many things that happen I think
your parents still have hope that you will be like any other kids. Even though no but we choose not to take away their hope.
Do you know you have a great daddy? He prepares milk for you, do suction at home, serve your medications, talk and laugh with you everyday you are here.
Your mummy, needless to say, know every single thing about you better than any staff nurse or doctor. You always get angry when someone wants to poke you, but every time when I talk to you and tell you that I want to take a little bit blood, surprisingly you don't struggle at all. When you get irritated for no reason your mom and I always blame it to your dad, and we would say Amin tengah marah eh? Mesti sebab daddy kacau Amin. And your dad will continue talking to you kissing your forehead.
That day when I walked in to check on your lungs it was 7.30pm, your parents were about to break fast. On the right hand he was eating, on the left hand he was holding your arm. It hurts me so much to see this, that you are not going to sit and break fast with them forever.
Yesterday we upgraded your setting to Cpap. That's the maximum we can do, because if you deteriorate anymore we can only stand there and look at the spO2 drop.
Amin means trustworthy and faithful in Arabic. Underneath that name all I can see is the love and hope of your parents for you. Such a strong kid you are baby. No matter how far you can go, I will always keep you in my prayer and remember you for who you are.
Some days when you are tired of living like this Amin, let go. Let go and come back again as a healthy baby born to the same family. You deserve to grow up and learn about this world, you deserve much much more than this.
To dear Amin, my warrior.
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