Wednesday 30 May 2012

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 :)



Doctor's Appointment

We brought Zarif for his Cleft appointment at the Dental Clinic of PPUM.  I was hoping to meet Dr. Siti but there was another doctor there.  Kak Zuraini was also there since it was a Cleft Clinic Day.  Cleft Clinic is open every first friday of the month.

My impression when I met this doctor named Dr. Aung was not so good.  Anyway, he gave us an appointment for the surgery in September cos before that he won't be around.  We also yet to go for an appointment with the Plastic Surgeon.  So we told him that we have an appointment with the plastic surgeon.  Then only we know that we can choose either him or the plastic surgeon to perform the surgery.  One of the nurse, discreetly whisper to Kamal recommending us to go for plastic surgeon since Zarif only has a cleft lip problem.

After our appointment with Prof. Alizan, the Plastic Surgeon, both Kamal and I were very pleased on how he explained about Zarif's cleft problem and the corrective measure.  A good doctor took half of the worry away ok!!  We can't help but to compare between him and Dr. Aung.  Prof seems to be more communicative and comforting.  He is also a very fine looking man hahahhahaha... oooppss! ;p

Prof. Alizan arranged for an appointment for us to meet Dr. Aung again with regards to Zarif's lips.  He wanted to bring down and make the left lips nearer so that it would be easier for him to do the surgery.  The very next day we met Dr. Aung.  Hmmmm.... sorry to say, his muka ketat already make me feel want to leave.  He said, he find there is no need to do whatever thing requested by Prof as it will not help much.  Anyway he asked us to wait outside while he tried to call Prof himself.  There was a small incident happened, when he asked us to wait outside, I couldn't hear him so I said, "Sorry what did you say" and he gave me that look "itupun tak faham ker" and the nurse explained to me in Malay.  I can understand English perfectly!! I just wasn't able to understand him!

While waiting, we saw Dr. Siti. Thank God!!  Well of course she gave her point of view etc etc...  She is a very pleasant lady... but with everything in our head we were confused, who to chose and on what based should we make our decision.

So, our helpline was Kak Zuraini of CLAPAM!!  She said, since it is only cleft lip, it would be best for the plastic surgeon to do the surgery.  Kak Zuraini is an angel... when I was calling her, she was actually driving.  She told me she will call me in few minutes so that she can park her car and talk to me!

Anyway, coming back to the issue, Prof insisted us to meet up with the orthodontic Dr. Way.  We managed to get an appointment with her.  She asked us to do what they call it as "strapping".


It is not and will never be easy to see your baby like this!!  So, if you feel like crying - go ahead!! Cry and let it out.  Being strong didn't mean you can't cry.

Strapping is not painful for the baby.  When the first time the doctor did this on him, I cried.  I thought he would be in pain.  Then Dr. Way told us that, it is not painful for him, it will just make him feel uncomfortable.  Actually, after few days, we can see the result.  His upper lips seems to tone down since their muscles are still soft and tender.


There are few things that I realized after meeting few doctors (either related to this issue or not) :

1.  They love to use their medical terms when talking to the patient.  Seriously, either incidentally or not, it is a bad habit.  Unless of course your patient is from medical background by all means please go ahead.  The purpose of explanation is to let the patient (from ordinary background) to understand you and their sickness.  As such, kindly use the layman language here.

2.  Doctors deal with sickness / cleft issue everyday as such it is a small matter to THEM but not to the parents.  It may be a small thing to doctors but for us as parents, to put our child under the hand of the doctors, we need to be able to relate to him/her.  It is no small issue here.

3.  Play safe - in the process for us to make the decision who to chose from, the doctors didn't really gave us the ground base on what base should we look at.  They love to tell us "up to the parents".  From the parents who has no medical background we do not know how to decide.  Would there be any wrong decision?  What is best for our baby?  In my case here - we are lucky to have Kak Zuraini!!

4.  Be communicative!  It is very important.  I have high respect on Prof. Alizan, Dr. Siti & Dr. Way (orthodontic).  They make us feel very comfortable to ask even we think it is a silly question.

Well, may be it is easy for me to say all this as I am not a doctor.  May be doctors have more problems and worries to think about rather than comments like this by me.

What is Cleft Lip & Cleft Lip and Palate?

What is cleft?

Cleft is a congenital phenomenon affecting 1 in 700 newborns. It is a split or separation in the structure of the lip or the roof of the mouth. During early pregnancy, separate areas of the face develop and then join together. When some parts fail to come together, a cleft is formed. Cleft lip and palate can happen together or separately.

Cleft lip

It can be a slight notch/split on the upper lip to a complete separation in one or both sides of the upper lip, it may go all the way up and into the nose. Unilateral cleft is when it is on one side while bilateral cleft is when it is on both sides of the lip.

Cleft palate


 When the roof of the mouth(palate) has not joined completely, leaving a hole in the palate. This can affect the soft palate(soft part of the palate towards the throat) or the hard palate(front part of the palate near the mouth) or both.

Cleft lip and palate


Is when both lip and palate have a gap/hole.

Sources : http://www.clapam.org.my/ 
Note : For more details please visit the website above

Tuesday 29 May 2012

The delivery day....

On 19th March 2012, at 7.10am, I gave birth to Ilhan Zafri and at 7.12am to Ilhan Zarif.  Alhamdulillah I heard both of their cryings.  The doctors straight away took Zarif to have a check on him.  I was not able to see him till the next day.

My first twin - Ilhan Zafri - 2.2kg (I love you tiny bee)

The first time I laid my eyes on Zarif, I can't stop crying...... 

I love you baby.....
My 2nd twin - Ilhan Zarif, 2.6kg
 When they brought Zafri to me at the recovery room, it was undescribable feeling.... He was soooo tiny... I asked the nurse about Zarif, she told me the pediatric to him.

I was so excited to meet Zarif.  I was nervous and the journey from post natal ward to the pediatric felt so long (it was just on d same building).  My heart sank when I saw him.  He was in the incubator - alone.  I cried and cried and cried.  Honestly, I was blanked.  When the nurse let me hold him, the 'rain' seems to be heavier.

One thing for sure, now I have to find my strength.

The day I found out...

4th February 2012 was the day that I did my 3D/4D scan.  I insisted my husband for this scan.  Most of the places (except for private hospital) were full.  I had a dream that I fed only one baby and I don't know where was the other one... That dream kept haunting me.

May be it was a coincident sign from Allah swt.  True enough, when I did the scan, the sonographer told me that one of the baby has a cleft.  She wasn't able to confirm whether the other one has it too as he was covering his face.



The TRUTH - I felt the whole world was crashing on me.  I was trying to calm myself and I guess Kamal was also doing the same.  Soon after we were in the car, I cried like a mad woman.  WHY ME?  I guess, anyone in my position will ask the same question too.  One thing that Kamal said that somewhat calm me down a little bit was "buruk baik anak kita".  I know it is a common sentence however, it was said at the right moment.

I went back home and shared the news with my parents.  I am thankful that they were very supportive.  But yet, I couldn't find my strength.  I was questionning everything.  I start googling and it lead me to CLAPAM.  I called them on Monday and arranged for an appointment to meet Kak Zuraini (the Secretary of the Association).  She was very calm.  When Kamal and I met her, she came with her husband, Abang Zainal which is the President of CLAPAM.  They shared their story of their cleft palate child which is now at his teens.  They showed us the pictures and explain their role to us.  There was one thing that Kak Zuraini told me that really make me feel strong was "this is not life threatening and be thankful".  I can still hear her voice saying it till today.  We registered as a member and they gave us the cleft bottle as for the preparation.

We started to arrange appointments with the Cleft clinic at PPUM.  We get an appointment to meet with Dr.Siti Madzlipah.  What a wonderful lady she is.  I am thankful that I know of this earlier so that I can be mentally prepared.

I was grieving about this, it disturbed my sleeps and emotion.  I can't lie to myself that I am not SAD.  Nobody wish to face this challenges especially at their first motherhood.  BUT at the same time, I find myself moving on.  At the end of the day, one thing that I realized, keep on crying and release yourself, but most importantly WE MUST MOVED ON.