My better half

Hi and Salam Aidiladha.


Thank you Allah for giving me another year. Thank you for giving me a really precious, my one and only little angel. Nur Zahra Adriana is the best thing happened in my life. I am truly blessed.

Giving custody to her father from saturday until monday morning(after raya prayer) is not a difficult decision. After all, he has the right. And so does Yana, as a daughter. As long she's happy, I'd be happy too. Yana's first time raya with papa this year.

May Allah grant me more strength, perseverance and rewards for all my sacrifices. May Allah ease my life's journey.

Tunggu mama & semua orang di syurga sayang. Salam Aidiladha for all muslims. 

#12september #29yo #aicardistrong #Alhamdulillah
Pray for Adriana

I really miss you sayang. Mama loves you so much! 

Love,
Mama Yana

The first operation: Prosthetic eye

Assalamualaikum and hi all.

It’s been a hectic week last week. Adriana is doing great and shows a lot of improvements. Her seizure is getting better, under control. Once time a day, just a minor attack during night only. So during days, she usually wakes up in the early morning around 6-7am but she will fall asleep back. She knows her daily routine, watching television food channel, chatting, playing, therapy, and so on.

Yana is supposed to undergo her second ophthal surgery on early January 2016, but the surgery has been rescheduled so many times. The ophthal specialist, Dr Azura is a really helpful doctor and gave the earliest date which is to be scheduled on 1^st November 2016. I pray everything is going to be okay. Her condition must be in good health, especially the seizure. If still have quite number of attacks, the surgery may need to delay again. I don’t mind, honestly, if that’s the best for her.

So during our last ophthal appointment in Selayang Hospital on last June, Dr Azura told us a news, I’m not sure whether it’s a good or not, but we can give it a try. She explained about Silicon Blend Expander, which is a new technology that never been tried in Malaysia. She asked me if we were agreeing to try, and I said okay. Why not give it a try if does not harm Adriana.

She explained the procedures, putting the silicon prothetic eye, and every year from time to time she will monitor and inject at the nerve, which does not require surgery every year to change the prosthetic eye. So this silicon prothetic eye will be permanent for at least 3-5 years. Adriana is only need an injection instead of undergo every 1-2 years of surgery.

Previously, on 4^th May 2015, Adriana was admitted at Selayang Hospital and the next day on 5^th May, underwent her first prosthetic eye surgery. Her left eye is not formed and need to put a prosthetic in order to acknowledge the facial bone that there’s an eye in the globe. At that time, Yana was very chubby around 10-11 kilograms I guess and it’s very difficult to find an IV line.

 When she was 1year 1months old, almost 10-11kg. This photo taken after the admission. Everybody asked me what did i feed her until she become like Michelin. haha. She breastfed almost all the time until 2 years old.

By hook or by crook, the anaesthetics team need to find at least an IV line. I was there in the operation room and saw they inject here and there, both right and left hands but couldn’t find any. Until they inject both right and left foot, still couldn’t find the line. At the end, Dr Azura and all the anaesthetics team agreed to do local GA. Later, they asked me to wait outside the operation room. I prayed hard. Hoping everything is going to be alright. She will be fine. I know my little angel is a strong girl.

Suddenly after 10 minutes, I saw Dr Azura came towards me and said it’s done. My first word was Alhamdulillah. Then she explained, actually the operation did not go well. They couldn’t make it as they have planned. The speculum and moulder is bigger than her left eye. Because her left eye is very small and sunken, the moulder couldn’t place into it and ultimately, Dr Azura has to change her plan. Just put a ready-made prosthetic eye into her left globe. That’s the best without hurting Adriana which was in half-conscious during the surgery.

After the surgery.

The best thing is when Adriana was allowed to discharge after few hours of the surgery. Since there’s no IV and drip line, Adriana was in good condition. A very strong daughter when everybody else cried like a tsunami. At that moment, I realized something wrong. The surgery triggered seizures. She had like more than 20 times of seizures attacked and I worried so much. The doctor said, just monitored her at home and if the seizures getting worse, immediately rush to the nearest hospital for emergency.

 

An hour after the surgery, she woke up and gave us a smile. "I'm fine, mama."

Fortunately, at home, later during night she falls asleep due to tiredness. The next morning, on 6^th May 2015, she woke up early in the morning like usual, feeling very different. Her facial and body language has changed. It’s like “I feel so different! I have a new eye! It feels so amazing!”  Maybe still feeling a bit weird of the new changes, Adriana finally managed to adjust herself with her new prosthetic eye. She became a happier girl. It’s like a reborn. She feels like starting a new life.

Three days after the surgery, she tried to open her left eye. I was touched. I cried. It’s her first time opened her left eye. I snapped few pictures and sent it to Dr Azura. She prayed for us. I thanked her. I thanked God for everything. Adriana really changed and became more talkative as if trying to tell her joyful feelings. I looked at her both eyes with mixed feelings. I know her vision is quite blur, poor vision, but I always and keep praying that, at least she can see us, family. If not destine in the world, maybe in hereafter, in Jannah.

The first time moment she opened her left eye.

I know she’s born imperfectly, but in the heaven, in Jannah, she will be a perfect girl with beautiful eyes, can see us, able to stand up, walk, talk, smile and laugh. Because she’s born to be an angel. My forever little angel.

May miracle happens. Pray for Adriana.

 Bidadari dan ahli syurga mama, tunggu mama di syurga sayang.

Love,

Mardhia & Adriana.

Wordless Wednesday: Keep Faith

Adriana turns 2 years 4 months old today!

The diagnosis

Assalamualaikum and hi all.

** Adriana’s latest update to get OKU sticker for vehicle is done!! Thanked God for everything. For your record, I went so places, called few peoples, been here and there to settle it down. Luckily my youngest sister is around and helped me took care of Adriana. God bless my sister.

Seizures

Adriana had her first seizure when she was one month old, on 10^th May2014. It happened right in front of the doctor during her second Hepatitis B follow up. I had no idea and really shocked when she got the tonic seizure attack.  Very fortunate to have my sister, Sofya who’s just graduated in medical school, helped me back then. I think she might have been attack few times, but I did not that time. I really have no idea what is seizure all about. Then I did some research ad study few types of seizures. At the very least, I have already known if the doctor tells about it.

The doctor asked the ambulance sent us to emergency and referred us to the Putrajaya Hospital.

Next, the journey of hospitalization begins.

Adriana has been warded on and off frequently. Been hospitalized six times since she was born. Fortunately, I’m a full time mommy and able to take care of her 24/7 whenever and whatever happens.

From then, she started her first epilepsy medication. She has tried so many medicines – phenobarb, epilem, prednisolone, chlonazepam, carbamazepine and topamex. Almost everyday she will get minor and spasms attack. Prof Wong suggests to have a combine suitable medicines and monitor her seizure progress. Her current combination medicines are chlonazepam(since her first hospitalized), carbamazepine and topamex. Oh ya, I almost forgot she also took hydrocortisone as her cortisol level was very low. But the medicine has been cut off since November 2015 and now her cortisol level becomes normal. Alhamdulillah.

The diagnosis

After few times her Endocrinology follows up and my cousin’s advised (she’s a specialist Paed ICU), Adriana gets her first Neurology follow up under Prof Dr Wong at HUKM. He is a very kind and helpful doctor. Indeed, he helps us a lot. So we went for couple appointments and later he found out the syndrome after carried out his research. I still remembered the day he told me, on 21^st January 2015, that Adriana is officially diagnosed with Aicardi Syndrome with infantile spasms. I kept calm, but honestly it turned to be speechless.

When we got back home, my eldest sister, who’s also a doctor, Dr Wafira, an ICU specialist, accompanied me during the appointment explained again.  Actually she’s already aware and knew it. She said, “Don’t worry. Though Adriana will completely dependent on you, she will be fine. You will be fine.” I hugged her. No words can describe how I feel.  Thanks for comforting me, even with a lie.

She told me about her quality of life, prognosis. I lost my word. I don’t know how many times I have lost my words, lost mind. Seriously, I don’t bother much about that, about her life span. All I need to do just take good care of her. That’s the matter. I know my family worried about me, my future and our future. My sister does not want me to put high expectation on Adriana.  She wants me to be prepared. If worst case scenario happens, I won’t be so devastated. 

Frankly, I took some time to accept. Yes, it’s not easy. But it’s not that hard as long you keep faith in Him. Trust on Him. He’s the Best Planner. He knows I am able to handle and face the test given.  Oh girl, please be good. I know you are very understanding and a good girl. Adriana is a really easy girl to handle.  Although she could not still able to sit, stand up and walk independently, I am so grateful to have her in my life.  

May miracle happens.  Pray for Adriana.

Hugs & kisses!

Xoxo

Mardhia & Adriana

The Beginning

Assalamualaikum and hola all.

Welcome to our humble and simple blog. Meet Nur Zahra Adriana, (usually I call Yana) and me, Mama Yana.

Honestly, I don’t know where to start. It’s a very long journey since Yana was born two years ago. So I’ll make it simple and short.

So, here we go.

The beginning: My Pregnancy Journey

Frankly speaking, I have been through tough times during marriage and pregnancy.  The moment I knew I was conceived, I felt really happy but at the same a bit worried, “Am I able to be a good mom?” “What will happen to me and my baby in the future?” I separated with my ex husband in the early of second trimester. We remain as good friends.  Life has to move on. I need to be strong. I threw all the doubts and start to think of the baby.  

To cut long-short-some-unnecessary-personal-stories, I honestly had a bad feeling since my first trimester of pregnancy. I know something is not right. Mother’s instinct.

After get back with my family, during my 6 months of pregnancy I went to a private clinic asked the doctor for a detail scan. Unfortunately she said, it’s still early to check for the detail scan. I was like what?  I had no idea that times what should I do. The doctor asked me to come again a month later.

On 22^nd January 2014, I came again to check for a 3D scan on my 7 months of pregnancy. That time, a gynaecologist checked on me and breaks the bad news. My heart stops pounding. I cried. I was all on my own.

The doctor said her brain has a ventriculomegaly, some excessive fluid on her right brain and seems like missing of corpus callosum. She scanned again to reassure. Later she insisted me to refer to HUKM for further investigation.  

On 28^th January 2014, I went to the HUKM and met Prof Dr Norzi. She verified the diagnosis and told me some of the prognosis. “Yes, the corpus callosum is missing. She will have a motor function disorder. She might not be able to live like other normal kids. She may not be genius, cannot grip and grab things, cannot walk blablabla..”  Luckily my youngest sister accompanied me that time and hugged me. She comforts me. “Everything will be alright.”  Because I just cannot hear anymore what she’s saying. I lost in my own world. I was speechless.

On 14^th February 2014, Prof Norzi then asked me to undergo an ante-natal MRI. After two weeks, on 27^th February 2014, the MRI result came out and she told me another bad news. My heart stops beating. My mind stops thinking.  She found out that her left eye is not formed and sunken. The right eye is not fully formed due to the abnormal brain, her left brain is smaller than the right hemisphere.

I felt like the whole world stops moving.  She handed me a piece of paper written of septo-optic dysplasia. She advised me to do some research. She consoled, gave me useful advise. “Nothing can be done until delivery. But have faith in HIM. He is the Almighty. With HIS power, kun fayakun, anything can happen. Just keep praying for miracles to happen.”

It was a long day. A tragic day that If I could, I do not want to remember at all. Many things happened on that day. Only God knows what happened.  Ya rabb, please give me strength. I pray hard. I recite the Holy Quran everyday, finding out what He is trying to tell me. Sabar. Patience. So wait patiently and calmly. I think for almost about 3 months. I have learned a lot. Our past experience is the best teacher.

Fast forward until 9^th April 2014, my eldest sister who also an ICU specialist, just landed from Brisbane, brought me for the last pregnancy check-up at Klinik Kesihatan Presint 9. I told the nurse, I had some leaking a night before. She immediately asked me to get admitted to HUKM and the next thing I know, on the next day, 10^th April 2014, I gave a birth to a healthy and beautiful little angel!!! It was an unforgettable and indescribable mixed feeling. A wonderful yet challenging 40 weeks 2 days of pregnancy moments ever in my life!!!

Nur Zahra Adriana binti Ezra Ezulky is born!

 

Adriana's 14 days old

Adriana’s amazing life journey has just begun.  I will update more soon!

Hugs & kisses!

Xoxo

Mardhia & Adriana