Hospital Umra

Hmmm not sure whether I am too demanding or over sensitive but I get annoyed when the doctor treat me badly....

My little Zafri ntah macam mana kena cirit for the past 2 days... kesian sangat tengok bum bum dia... then we decided to take him to DEMC.... unfortunately on the way it was such a massive traffic jam.  So we thought, why dont we just go to Umra.  Sampai sana, met this Dr. Jessy.  I greet her.  She just nod no smile. Ok...fine. Then as I was explaining to her she just give me a serious face.  Ok fine... then dia nak check Zafri.  Zafri tak duduk diam (as always)...then she gave me this agitated face...and mendengus.  Hmmmmmmmmmmmm..... pantang tok nenek lah kan... lain kali kalau tak nak jadi doctor..jgn jadi doctor... i know it is tiring to be a doctor... to be a stay at home mum pon penat ok!!

Then she said something like "hold him nicely"... very stern.  That does it.  I asked her "why you look so angry?!! If you don't want to treat him, I don't want you either".  Hah kan kena sebijik.  Seriously, what is her problem.  Then she said "no i am not angry".. i said "yes you look angry the way you talk all very angry".... lepas tu boleh pulak cakap elok2 and a lil smile on her face.

I am telling you....  doctors need TLC!  A good doctor took half of the pain away without medication tau.

Speaking of hospital... as at now, DEMC still the best service hospital.  The moment you step in, from the bellboy (yess they do have a bellboy) up to the doctors (by far that i've met).... seriously superb.  Very tactful.

Once, just after gave birth, I had to take my twins to the hospital... the MO noticed that i just gave birth, straight away call for a wheel chair for me.  Banyaklah kelebihan DEMC.... i am so far very pleased with the team there.

Anyway, hopefully Dr.Jessy will learn from today's incidence.  How you react and your facial expression is very important.

hmmm my bambam.... luckily he is as cheerful as ever.... cepat sihat yer sayang.... mama sayang anak mama.... errr... mama sayang spiderboys mama hehehehe muaaahhhh

JUSTICE FOR CLEFT BABIES!!

I received an email from ING with regards to Zarif's declined application.  This is the email :- "Case was reviewed when we received email from *************. Regret to inform that we are unable to consider HS plan to the life insured who is only 8 months old with palate lip repair surgery done in June 2012. Cleft lip may increase risk for upper respiratory tract disorder, speech defects, hearing impairment and infection of middle ear. The risk for HS plan is very high at current stage. Client with cleft lip/palate may need a revision surgery at a later age depends of the recovery." And my reply:- Dear ****, Kindly inform your underwriter or whoever that sent you this email to get their FACTS correct. 1.  Zarif did NOT had any palate repair surgery.  Kindly ask your underwriter to search in the dictionary what palate is and what lip is. 2.  All the risk stated are for Cleft LIP AND PALATE, whereby Zarif only has cleft lip problem.  Do browse http://www.clapam.org.my/ to know more about cleft.  Whatever it is, I thought anything related to Cleft would be excluded from the policy?  Why suddenly this came out as an issue? My child will forever be a cleft lip baby regardless of what age he will be later.  As such the deferment proposal proposed by ING will never be applicable to him as it will forever be deferred.   I guess ING would have their facts correct if ever ING get the medical report of Zarif.  However, ING was just too proud to even request for it and I shall and will not grant any permission whatsoever after this, for the fact that ING is not interested at the first place. *****, I really appreciate your cooperation and understanding in handling this matter.  However, I am sorry to inform you that my husband and I have decided to withdraw for Zafri's proposal too.  Both Kamal and I feel very offended how Zarif's case being treated at the first place by ING.  Kindly do the refund accordingly.  I guess I will have to find other insurance company that would be interested to insure Zarif or at least be fair to him.  Thank you once again for your time and effort.  Puan Zuraini - CLAPAM, For your kind info.  I take into heart how this being handled by ING.  Regards, Baizura

OFFENDED!!!!

Well well well..... I seriously feel so offended with ING Insurance.  I am applying for my twins insurance with them.  ING defer Zarif's application until he reach 1 year old.  Defer is the most polite way of saying my current application has been declined.

Reason :-

1. verbally said because he had a surgery at a very young age.  Any cleft babies would be advised for a surgery as young as 3 months old (I think ING need to read through or study what Cleft is all about).  

Facts :-

1. the application has been declined without granting any medical report from the surgeon nor the hospital.  
2. Cleft lip repair is not a life threatening disease.
3. I have agreed for an exclusion for anything related to his cleft lip repair.

Offend :-

1. they offer a deferment proposal and a form for me to sign to agree on Life Insurance Policy since Zarif is not eligible for the medical card.  What kind of mother do they think I am???  Want to be benefited after??  I want an insurance coverage for my son for his presence!  How insensitive!!
2. they forward an authorization form for medical report - NOW?? After they have declined??
3. ING is one of the biggest sponsor for CLAPAM... and I seriously do not expect this from them.

IF they were to decline based on any medical report or requesting me for a higher premium, I would understand.  But to decline at the first submission...(oooopsss defer as they put it) is totally offensive.  At the age of 1, Zarif will still be a cleft baby and had his surgery at age 3 months old!

Justice for all the cleft babies out there!! They deserved to be insured too!!

Thank you....

I noticed, I have readers.... from US, UK and even Ukraine..... 

From the very bottom of my heart, Thank you!! 

I hope this blog could help you in any situation.  

Thank you once again.

Recovery - after surgery

YOU ARE SUCH A STRONG BOY SAYANG!

We stayed for 2 nights and we can't wait to go home.  We miss Zafri so much.  Mama was telling that Zafri was so restless.... 

After 4 days, the doctor took the plaster off.... didn't get to see his smile yet.  But not long after... he started smiling again...  Syukur sangat pada Allah swt.....  The recover period for baby is faster.... thank God for that.  

Moral of the story, keep calm.

We still take Zarif for his follow up check up with the Plastic Surgeon and Dental.  For now, we apply the Vitamin E oil to his scar...  

Handling the Two...

Ishhh dah lama tak update blog... I've been super busy.... with maid problem and catching up with the twins... i find myself had no time to write...sigh ;p

Well..... both Zafri and Zarif are super duper hyper!! They turn the house upside down... ni belum ada kaki lagi.... Zafri turn for the first time on 7th September and Zarif on the 22nd September.  Cepat betul masa berlalu... sekarang ni dah tumbuh gigi... Zarif punya 1st gigi keluar on 6th November and Zafri 16th November.

Though I am eager to see them teething, I am also nervous with Zarif's development.  Hmmmm I've forgotten the terms the doctor used on his cleft... besides cleft lip there is something else...where there is a small gap at his gum.  That is just a small issue, yet enough to make me nervous.  I am still very thankful of whatever his condition is....

Taking care of the twins alone by myself was a great challenge.... sangat2 menguji kesabaran... at a time, I just sat inside the toilet crying.  For no reason.  There are some good days and some bad days where they get very grumpy.  Or I was just too tired already that a little cry can annoys me big time.  Sometime I just wished I have a remote control that I can press STOP while they cries and press a laughing button instead.

Well of course...that was tooooo ambitious of me hehehe.....

Zarif will be going for his check up every 6 months with PPUM, both dental and plastic surgeon.  Which is good.  So that they can monitor his progress.  My aim for the future, to get both of them involve in any activities organized by CLAPAM.  YES...both of them together.  I do not one any of them feel left out or different unnecessarily.  They are brothers.... and we are family... family do things together.

Earlier, I was complaining about the crying right?  Today, I watched a talk show - Primadona at Astro, the issues about mothers.  One of their guest was this young mother.  Her baby, Ahmad Adam Syukri, suffer from Brain Damage HIE.... Ya Allah, besarnya dugaan dia.  One thing that she said in the show that really slap me on my face..... She is longing to hear Adam's voice or cry... Adam is 8 months old just the same age with my twins.  So, I should be very very grateful to see the progress of my babies and I pray for baby Adam, sihat lah sayang.....

Kita tak tahu apa ketentuannya... at the time when I feel God is testing me too much, I have to be positive about life and kept myself strong.

Till then, keep searching for the lights.... though it is far far away.

 

I miss my Ilhan Zafri

I really miss this budak bulat!!!

Papa mms me this pic of his when I was in the hosp.... Zafri on my bed...

My mum was telling, on the first day he was still ok... but on the 2nd day... he already started to search for something..  He was very restless.... alahaii kesian....  When I was in the ward, I kept looking at his picture and videos (thank you to the technology).... 

I miss you so dearly Zafri.... and I love you heaps!!!

This is it........

21st June 2012 ~ The Surgery Day

Pasrah, Redha and PREPARED......

We woke up at 6am and get ourself ready to go to the OT with Zarif.  The journey was quite far cos we need to walk from Pediatric Ward to Menara Utama... I carry Zarif in my arm cos he was crying due to hunger...  but soon after I carried him.... terus senyap and mata dia terus 'pelingau-pelingau' (banjar)...

The numbness was still in me - luckily!  Kalau tidak sure dah emo semacam.  I know to many this is small matter, but to both Kamal and I, this is huge because it is our son.  We received numerous comment as "tak apa...ni kecik jer... tak yah nak risau ke nak nangis"....Cuba tengok kalau anak sendiri at this age kena masuk OT alone...  kecik ke besar rasanyer?? Hehehehe.... so to all the parents with cleft babies out there - we feel you!!

There was no drama to this.  When I put Zarif on the bed in the OT, I was calm (surprisingly!).  Nope...no tears (for Ratu Airmata like me..this is a big deal hahhaha).  This is when I realized, I was Pasrah, Redha and Prepared.  I know he is in a good hand of Prof. Alizan and his team.

We went for breakfast and waited at the waiting area.

isshhh bulat!! ;p

I put him on the bed at 9am... at abt 11.45am, the nurse already call us.  As we walked in towards the recovery area, I feel like it was the longest walk I've ever been.... there he was lying in his court... still feeling drowsy... and I cried.  Zarif darling.... you look so small yet so strong.... Alhamdulillah everything went well.  The nurses asked me to hold him so that he can feel me.  I kept on whispering to his ears.... mama sayang zarif... i dont know why... may be i just want him to know i love him regardless what.

The Day before the Surgery Day....

20th June 2012 - 7am

We were getting ready to go to PPUM.  My heartbeat was fast.  I am nervous.  I know today is not the surgery day, but it is the first step for tomorrow.  Both mama and papa were in my house to help me to take care of Zafri.  Before we left, we still manage to smile for a pic!! hehehe.... camera freak!!

One brave lil boy .....

Zarif with papa.... happy mood

Both kamal n i rotate to sleep on d comfy sofa...

Zarif as a case study

Zarif with a group of young doctors.... hmmm dah besar nanti jadi doctor yer... 

 

I have to admit, I am a coward when it comes to blood... even my own.  Tapi bila the doctor wanna put the line to Zarif, I was in the room with him.... hmmmm this is exactly how people always says... we only realize our weaknesses not our strength hehehe...


 

That night, I feel numb.  May be because my heart hurt so much thinking of tomorrow till I do not know how and what to feel.  I saw Kamal was very calm..... thank God.

Starting from 2am, Zarif need to start fasting.  Alhamdulillah it was not so bad for him.... He woke up at 12midnite for his milk... then at 1.30am we tried to wake him up... time time ni lah dia nak tidur lena selena lenanya pulak hehehehe... selalunya tergerak sikit confirm bangun!!

Kamal was trying to put Zarif to sleep at 4am.... i guess kamal yg tidur dulu hehe

Be strong dear heart....

"Mama...adik takut"... hmmmm nope.... that was not Zarif telling me.  It was me telling my mum just now.  A mother always need her own mother to tell that everything will be alright.  Mama also said she is afraid/nervous too... this is also her first experience with her own cucu... It's good she is not hiding her feeling... at least I know it is ok to feel what I feel...

I've been wanting to see the video on how the surgery would be done.... had no guts! But today... the curiosity gets higher.... as the surgery is just around the corner - i need to know how..i know the theory.. now i want to know how it would be done physically.  So, I youtubed.

http://youtu.be/Mn6ShNspVfw

Bermulalah episod banjir di dalam bilik.... oh dear heart... please be strong.

As I mentioned earlier, I am very factual person, I guess... after knowing how (my heart broke even more...) but NOW I KNOW and I feel such a relieved.  There will be pain, there will be crying.... there will be recovery.

My dear heart,
Be strong. I need you.

My Almighty Allah swt,
Please forgive me of my sin.
Let the pain be more in my heart than to him...


I accept your test, as your love to me..
What you are doing is reminding me...
Otherwise you wont be choosing me..

A note for my Baby Zarif

A week from now, we both will be at PPUM for your surgery.  We will go through this together.  You will not be alone in the operation theater.. Both mama & papa chose a very good plastic surgeon for you and he has a very good team.  He will be very nice to you sayang.

I am sorry that you have to go through this sayang.  But I guess Allah swt has a better plan for all of us.  I know both my babies are strong.... And you Zarif, you were in the incubator for few days after you were born.  You had all the wires and tube all over you and I was not able to be with you on the first day.  You are the hero of all!!  This time around, we will go through this together.  Believe me, if you feel any pain, I am feeling it too and IF EVER I COULD TRANSFER ALL THE PAIN TO ME, I WOULD.

IF you ever wonder why you have the cleft, it is because God loves you so much sayang.  He was not able to let go all of you to me, so he borrow a little piece of you and he will return it to you when you are in heaven.  You both are special babies.  Zafri will be a stronger brother to you just by loving you and being with you all the time.  I love both of you equally.

After this surgery, you will have to go through another at the age of 6 or 7.. and after that at the age of 13-14.  What I am doing to you is for the best of you.  Whatever it takes, we will go through this as a family....

Faces of my Ilhanz....

When they were born, Ilhan Zafri was 2.2kg and Ilhan Zarif was 2.6kg....

Ilhan Zafri

Ilhan Zarif

Kecik jer time nih...

Haluihnyerrr kaki....

Dulu lain (above pic).... sekarang lain .....hehehehe... alhamdulillah they both grow healthily

Faces that make my heart melt.......

Salah siapa?

Hmmm.... well... someway somehow this question will occur in your head if you were to have a cleft baby.  Sebenarnya - nobody's fault.  There is no specific reason how this happen - medically or superstitiously.  Orang dulu-dulu kata if the father pergi fishing, anak akan sumbing or mak jangan siang ikan masa mengandung etc etc... ini semua adalah kepercayaan orang tua-tua.  Tiada bukti yang boleh menunjukkan mana-mana keadaan ini benar atau tidak... BUT... jangan ambil mudah... dan juga jangan terlalu taksub nak percaya benda-benda ni.  Things happened for a reason dan semuanya atas izin Allah swt. 

Most importantly - NEVER blame your partner.  Your baby need both of you and you both need each other very strongly.  In my case, I honestly thank God for what and how Kamal is.  Calm. Unlike me, I am a factual person... suka sangat nak google everything.  Because deep in my heart, I am blaming myself.  During my first & second trimester.... i was flat on the floor.  Seriously!! Macam-macam ubat I had to take and after few minute sure muntah balik.  I don't have enough folic acid, vitamins etc etc... and cleft usually happened during the first trimester (i read this somewhere).  So in a way, I was actually blaming myself.... i felt it till today.  Hmmm how to get rid of this feeling?  Honestly, I don't know!! But... tak payah nak pressure sangat... there are sooo many other things you need to do besides blaming yourself.  As for me, I divert the guilty thoughts to - what is the next step?  That's why, I met all the respective doctors/people with regards to cleft before I gave birth.

Of course, sekali sekala... i'll be in tears for no reason too... I am human after all.... :) 

Life is not bed of roses everyday... challenges help you to discover who you are in a way you least expected it from yourself...  and it definitely brings you closer to God...

For whatever it is, thank you Allah for giving this MAN to me...  never blamed, never questioned... he just want us to move on.

The Surgery Date is SET!!

Well, the surgery date is set!! 21st June 2012...  We will be admitted on the 20th June.  It is important to keep Zarif healthy and most important : NO FLU!!! Otherwise the surgery had to be postponed.

We have fully decided that Prof. Alizan will be the one to perform the surgery.

28 May - This is Prof. Alizan... and of course yang tersenyum panjang tu is ME hehehe...

With the orthodontic - Dr. Way : She is a very nice lady.. we are meeting her again before the surgery date... 

The TRUTH - I am very nervous!! I can't lie or deny my feelings. No point of doing it either.  At this point of time, the question of WHY ME is still in my head... BUT... am thankful for being the chosen one by Allah swt to be tested by Him.  It make me closer to Him.  :)

Feeding Time!!!

Cleft babies took longer time to be fed.  As for Zarif, at first we use Softplas bottles and spoon feeder :-

When we were still at the pediatric ward, the nurses thought us how to use this bottle :-

It took hours for Zarif to finish even 45ml.  Poor little boy.  Dia rasa tak puas minum and it really shows.  So, when we went back home, we tried to use MAM Orthodontic Teats (which we get from Kak Zuraini upon registration as a member) :

Front View (p.s : the teat is without the bottle)

Side view

Zarif seems to be able to suck it and enjoy his milk better.  You can get all this from CLAPAM.

I can't wait for the day that I can breast feed my little Zarif :)