Complete...

Last Saturday we went to Emily burial site to meet the tombstone maker. He completed the construction of Emily's tombstone. Except for a little touch up required here and there, it was done well. Paid him the rest of the money and he promised to do the touch up in these few days. The grave looks pretty and I bought some pretty flowers for it too. It is now complete. We have done everything for her for her short earthly life.

Not a day passed without thoughts of her coming to my mind. When I look through some of her photos, tears well up in my eyes. I still miss her and always will.

Pray for us and with us my little Saint Emily. Keep a look out for your brothers and sister here on earth, keep them safe and healthy. May all of us spend eternity together when our earthly lives are done. Lots of love, mummy.

Holy Innocents

I have not forgotten you, Emily. I still think of you everyday. Sometimes very much. I miss you dearly. A few days ago, I dreamt of you, for the first time in the 3 months+ since you went to heaven. You came back alive and it was like a miracle since I remembered in the dream that you have died and was buried. But I was still very happy to be able to hold and smell you, it seemed so real. You were like what I remembered you but bigger :). In some strange way, I actually felt that it eased some of my longings for you.

But don't worry about mummy, because mummy is doing fine. Missing you has become part of my life and I don't mind that at all. The priest said that God sent everyone to this world for a reason and I want to believe that you came into ours to make us closer to God. I must thank God for the gift of my Emily. I am motivated to work harder to get to heaven to be with her.

When I pray now, I don't pray for her, I pray through her because she is a little angel (or rather, saint) now. My very own saint in heaven. I ask her to pray for us, to keep her brothers and sisters safe and healthy. To guide mummy and daddy to be more faithful followers of Christ, never ever to forget that we will always have you. I love you, my baby.

The tomb maker came back to us a week plus ago and showed us the inscribed marble stone for your tomb, it came out just the way I designed. They are making the structure as we speak now. So it should be completed today.

The other day, I saw a posting about Holy Innocents and I would like to end with that prayer, for all the babies and children who have died. especially for the young children killed in the shooting at Connecticut:

A Prayer To The Holy Innocents

Holy Innocents, you died before you were old enough to know what life means, pray for all children who die young that God may gather them into His loving arms.

Holy Innocents, you were killed because one man was filled with hatred, pray for those who hate that God may touch their hearts and fill them with love.

Holy Innocents, you experienced a violent death, pray for all who are affected by violence that they may find peace and love.

Holy Innocents, your parents grieved for you with deep and lasting sorrow, pray for all parents who have lost young children that God may wrap a warm blanket of comfort around them.

Holy Innocents, those around you certainly felt helpless to prevent your deaths, pray for all who feel helpless in their circumstances that they may cling to God for courage and hope.

Holy Innocents, you who are now in Heaven, pray for all of us that one day we may join you there to bask in God's love forever.

Amen.

 

Mark 10:14

We called the contact for the tombstone maker I got from a funeral house who posted their ad in the Herald. Although we had another contact, we decided to just contact one of them. We met with the tombstone maker on Saturday and after some quick discussion and negotiation, we decided the design and price on the spot. I have just sent them by email the inscription and design to be engraved on the marble display on her grave. It is a simple design with some flowers.

I still think of Emily often but it is not as painful anymore. She is already in her final and eternal destiny, she is a little Saint now. There is no reason to mourn or be sad anymore. The sadness I am feeling is more of the human kind, the ache in my heart is because of me feeling the loss of my baby from my arms. It is a selfish kind of sadness because I am only thinking about how I feel. Instead I should be happy that she is privileged to be given a passport straight to Heaven while those of us still here have to work real hard to get the same chance.

Of course it was only natural for me to feel the pain and suffering from this loss but prolonged sadness doesn't seem right. So I have decided that I will allow myself to be sad for maybe 10% of the time while the 90% of the time when I think of Emily, I should be glad and thank GOD for the gift of Emily to us. I pray that GOD will bless me, and my husband, and guide us to become better witnesses of Christ through all means, from words to deeds. My little Saint Emily, pray for us and watch over your brothers and sister.

Inscription for Emily's Grave

Lovely week...

Next Thursday is All Saints' Day and the day after that is All Souls' day. Today (Saturday), our Priest asked for help to gotong-royong (loosely translated to group cleaning-up) at the parish cemetery. So we carted the older 2 boys and my 4 year old princess to the cemetery to help out. It was a sunny morning and there was quite a good turn-out. We picked rubbish by hand into garbage bags under the hot morning sun and managed to gather quite a lot of rubbish! I am proud that my kids worked just as hard as their parents and between us 5, we picked 4 bags of them.

Sometimes, I feel slightly guilty and even a little hypocritical that we only come to help in the cemetery after we have a loved-one buried there. But I won't beat myself over this. It never occurred to me to participate in such activities before. Time was always the factor, or rather the lack of it. Actually, it was more an excuse. We have one hour to spend in front of the TV or on Facebook and we have none to spare for something more significant? I want to say I will never make this an excuse anymore but I know I am 'weak' and sometimes lazy, so I will say this: I will try and try to make time for anything and anyone in need.

At the cemetery, we saw some men building tombstone on a grave and I asked my hubby to get their contact. We will be putting up one for Emily's grave soon. I did some searching online for nice designs but hubby would like something simple. We'll see what the tombstone maker has to offer.

As a matter of coincidence, I read a Facebook post by my aunt a minute ago. It was a video about Pearl Joy Brown, a miracle baby. Of course, being the mushy type, I cried seeing the video. I also found her blog. But get some tissues because you will be moved to tears. What great courage and what a beautiful life that they are holding in their arms.

I miss you, Emily.

Oh yeah, I have nice news. We have been asked to be godparents to a beautiful baby boy named Alexander Tan who is almost 3 months old. We met him and his parents for the first time last week during our Rosary prayers at their house. His mother, an Indonesian (his dad is a Sarawakian Chinese), was busy being the host so I offered to hold the baby and ended up holding him the whole evening, GLADLY. He was such a happy baby and I was able to make him smile a lot. After awhile, I even made him sleep in my arms. He never wimped or cried one bit! It was such a joy to hold him, it does help ease a little of my pining for Emily. Alexander has yet to be baptised, so some of the BEC members suggested for us to be his godparents. I immediately said yes and I am very very happy, :). I think Alexander will be baptised in November, I can't wait to see him again.

Oh yes, we will be praying for baby Pearl Joy and her family. We have also been praying for a lady reader of my blog and her son who will be undergoing heart surgery in November. I am sold about prayers and I hope all of you are too. Pray lots and pray hard. GOD loves us all! Amen.

Emptiness

Yeah, I am getting on with life. Things are as they should be. I am busy getting the kids to school/daycare in the mornings. Work also is pretty busy, and lunchtime with my lunch buddies are usually the highlight of the day. I will be busy picking the kids up in the evenings.

When we get home after having dinner at MIL's place, we will watch some TV before the kids go off to bed. Hubby always sleeps early too because he wakes up early to go to work. I usually have difficulty to sleep early, so I spend a few hours before bed watching Korean dramas online in our room. As much as I like watching them, I have to admit the real reason I do this is to wear myself out so that I can drop into bed and sleep straight away. But that doesn't always work. Last night, after watching 3 consecutive episodes, I felt tired but when I was on my bed trying to sleep, I started sobbing again. I miss my baby, Emily.

While driving to work too, I will think of her. When I am shopping and I see baby stuff or if I see someone's cute baby, I will think of her. When I am not occupied with something to do, thoughts of her come to me. And it still hurts in my heart and tear floods my eyes. I try looking for books form people with similar experience but they are not readily available. I looked for people who share their stories online and came to this site:

http://community.babycenter.com/groups/a6716015/down_syndrome_loss

I guess this should be normal for grieving mothers. I read that this could go on for 1 year. Yeah, I think time will make it easier but I will never feel the same. It feels like there is an emptiness inside you that cannot be filled. With time the emptiness may grow smaller but it will never fully heal and I supposed this is how it will be.

After all these happenings, I am still thankful to Our Father in Heaven. It is better to have and to lose than never to have at all. It was better that I had 5 months and 9 days of her alive with me than lesser. It was better that I had experienced all the emotions and trails, all the doubts and hardship than not having seen the kindness that exist amongst family and friends. It was better that we learn that money really didn't mean more to us than precious human life. I have a lot to be thankful for. Even for the current suffering I am going through (nice writeup on Finding God in suffering). I know it is better that I am going through it than to live life in spiritual complacency. Lord God, help me and guide me to experience Your love in every circumstance and to fully surrender to Your will.

Getting On...

Pretty flowers...

I bought some pretty purple and pink flowers for Emily's grave on the morning of the 40th day of her passing, on Wednesday.  Took half day off to prepare food for our BEC members who came to our house for rosary prayers for the day too. The days are getting on fine for all of us. I have a lot more free time now. I even started piano lessons, something which I have been meaning to do for awhile. We have plenty of things to do in the house which we will be doing little by little every weekend.

I still miss her often but it's not too hard now. Sometimes I wonder why God gave Emily to us only to take her away so quickly. But that's how God works, we can never really understand it with our limited capacity. Someone said to me, I still have 3 kids that need my attention. That may be true, but I still miss having a young baby. Even before Emily's passing, I had this thought of adopting a baby and my husband agreed too. So if the opportunity comes and a baby is in need of a family, we are opened to it.

I want to change because I had Emily in my life, I want to get more involved in anything that I can help out. Whether it's for charity or for Church. Next time, when there is a call for volunteers for a cause that I feel strongly about, I will take a step forward and offer my help. So I pray to our Heavenly Father, take me and guide me to do Your work. Amen.

Nearly One Month...

28th Sept: Almost 1 month has gone by since Emily departed from us. Things have fallen back to the same old routine as before her birth. I am not rushing as much and we are managing ok without any help. My kids are all sent to day-care and my MIL cooks dinner for us. So she is pretty relaxed now which is how it should be for her anyway.

I, of course, still miss Emily. I think of her everyday. Sometimes with great remorse and sorrow and sometimes with just a tinge of sadness. She was looking so healthy and recovering so well from her surgery that I had no way of knowing she was in danger. I keep asking myself and my hubby if I had done enough for her. But I also know that there was nothing I wouldn't do if I could, to save her.

I think I would go to her grave this Sunday again to put some lovely flowers on it. Emily, I know you are in heaven now and you can see us here. You are a saint now and I should be praying for your intercession. Please bring all your brothers and sister and papa and mommy to Our Heavenly Father's attention. Ask Our Father to have mercy on us, guide us and protect us from illness and harm. Help us to become faithful Christians and always walk in the rightful path. When we are lost, guide us back to the correct way so that we all may end up together with you in Heaven for eternity. I love you, Emily.

Am I fine?

15th Sept: Yesterday, a colleague came by my office to see me while I was chatting happily with friends in the office. She gave me her condolences and a small envelope containing a card and a prayer book on grieving. The day before, in a video conferencing meeting with our UK colleagues, a lady asked about how my family was without knowing about my baby's recent demise. I told her that we lost our baby and that was a very awkward moment, more for the nice lady who asked that question. I felt bad for her. Earlier in the week, another colleague saw me at the car park while I was going home and came over to hug me. I just smiled and nodded as she gave some consoling words.

Through all these small happenings, I am reminded of Emily and the reality that she is no longer with me. I know all of them are well meaning but they gave me a sense of guilt. I am supposed to be in grief but I seem to be getting on with life fine.

Before I went back to work last week, I told myself I will allow myself to grief for a week. We will pray for Emily for a week and put her picture beside the altar for a week. And that was what we did, I did not think of anything but Emily and stare at her picture at home for long periods for a whole week. At the end of the week, we put her picture amongst the baby pictures of her other siblings and went to the cemetery with some pretty flowers.

The work week begun and I didn't know if I would be able to join my lunch buddies for lunch. Work kept me busy, I had lots of things to handle, so time passed easily. When lunch time came, I felt I was back to my old self and joined them for lunch, and did so for the rest of the week too. The conversations were our usual comical nonsense and I found myself joking and laughing. All the time, I felt self-conscious of being judged as a mother who has gotten over her baby's death all too quickly. I know of course none of this actually happened, it was just me thinking crazy stuff.

This morning, I started to replay the events that happened around her death in my head again. Thoughts of 'if I did this' and 'if we didn't do that she would still be alive' came to my mind. I imagined how it would be like if she is still here, she would be at that spot and I would be feeding her or playing with her at that moment.

This cycle of happy, guilty, sad for me may continue forever. It's probably not healthy and if I do not allow myself to feel the moment and to grief fully, I may always be feeling awful from time to time like this. Is there a way that parents can best do to cope with the lost of a child? I searched online and found this useful article:

http://www.athealth.com/consumer/disorders/parentalgrief.html

Most of what the article say is so true. I hope my hubby reads it too. You know, even now, I still cannot imagine how any parent can ever cope with the lost of a child and I JUST LOST A BABY. So that is how lost I am, I thought I am strong, but am I? I am just confused for the moment, I really don't know how to feel or think. But ultimately, I know what I need to achieve, i.e. as part of the conclusion of the article above stated and I quoted here: 

What has happened (death of their child) to these parents has changed their lives; they will never see life the same way; they will never be the same people. As they attempt to move forward, bereaved parents realize they are survivors and have been strong enough to endure what is probably life's harshest blow. By addressing their grief and coping with it, they struggle to continue this journey while making this devastating loss part of their own personal history, a part of their life's story, a part of their very being.

For the moment, I am not losing it yet. I think it's bearable, albeit confusing. I still am able to take this emotional roller coaster ride. But if I don't feel better after a significant amount of time, I may look for a counselor for guidance. Or maybe a priest or a religious person.

But honestly, for all that has happened, I AM THANKFUL TO GOD ALMIGHTY. Many things could have been worse. I am thankful that we arranged for Emily's baptism earlier on. I am thankful that she died in my arms instead of someone else, that person could be traumatised for life! Most of all, without the belief that Emily is now at the BEST PLACE EVER and without the belief that GOD is ever merciful and loving towards everyone, including me, I think I would be in a worse condition that I am in now.

My Lord, God, help me through the months and even years to come. Guide me and mold me to be a changed person that love and trust YOU and YOUR plans. If YOU beat me down then please lift me up and make me wiser and make me more faithful to THEE. Amen.

Missing my baby...

10th Sept: I went back to work today, had lots of work, so kept me busy. It was an okay day, I managed to work well with no problem. I did get a few emails and people asking me how I am coping, I managed to give short and polite answers. On the way home from work, I thought to myself that I am getting back with life too quickly. I just lost Emily 9 days ago! After dinner, I watched the drama series at home and did not think of her. But as I was about to go to bed, I started to miss her again. Her chuckles when I tickle her, her smile when I move her legs in mock exercise. How she loved her bath time. Tears started to roll down my cheeks. I miss her dearly. I think I won't stop missing her for a long long time..

Regrets

7th September 2012: Today is the 7th day of Emily's passing. We will attend the evening Mass today and the BEC/Zone members will be here for the last of the 7-day Rosary prayers tonight at our home. My hubby has started work after 4 days of compassionate leave. I took additional 2 days on top of my three days compassionate leave. I do not think I will be ready to face concerned colleagues who may asked about how I feel. I am afraid I may cry, and that wouldn't be very good in office. I don't know how things will be next week in office, but I have plenty of work to do. I hope I can keep myself busy with work and not think of Emily too much during work.

There are several honest confession that I want to make here. My real feelings and thoughts that I feel I should write down because I know parents facing the same issues as us will in some way or another have similiar feeling/thoughts and I just hope it helps them to know that they are not alone. I was there once too.

Honestly, during the few months of Emily's life here in this world, I have had thoughts on several occasions that if she was not born or if she did not survive her heart surgery, it would have been better than having her growing up and suffer discrimination, bullying and more health issues. I also had thoughts that if she out-survived us, her parents, who will be her fort, her dependency, how can she fend for herself? I feel like a bad mother for feeling this way and I quickly pushed these thoughts away. I asked my hubby if he had the same thoughts, he said never. And you know what, I believe him. He is not one who over-think things. He said the only thing he thought of was to create a small business (specifically, a convenience store) that we can pass down to her for her survival when we are too old to work or when we are gone from this world.

It never dawned on me that her life with us could be so short. We have had difficulty getting permanent help to care for her. Because of her heart condition and her syndrome, I understand that people will be reluctant to take care of her. I think my MIL reluctantly agreed to help us take care of her while my mum sympathised with us and helped in her care for a week at a time, several times over the months. We paid the agency some 4 months ago for a Filipino maid but she changed her mind at the last minute. We already applied for a new one and were to wait another 2 months but now there is not need of a maid anymore, we have cancelled the application. Sometimes, this feels like it has been planned.

Prior to her death, I was having a pro-longed bad cough (and still having it). I was coughing over a month. Seen doctors 3 times, tried the sensei's medication, tried all sorts of cough mixture but it stayed. It wasn't causing anything more that irritation to me. Although I never deliberately cough on Emily, I did not use mask or anything like that. I remember thinking to myself that it will be inconvenient and plus my 4 year old was also coughing so it would be pointless cause Emily will get the cough from someone else if not from me. I also thought that she needs to go through some coughs and colds in order to build up her immune system. There are lots of nasty microbes out there, she will need to have a better immune system to survive this world. When she finally got her cough a week plus ago, I knew it will take time to heal but I never thought that it will lead to her death. I am so so very sorry for that. I especially regret that after all her hardship, her long stay in hospitals, her open heart surgery which she survived, she succumbed to a cough. She was doing so well after her surgery, getting chubbier by the day from my EBM. I honestly, never thought it was such a serious cough. If I knew, believe me I would not have let this happened. When the doctors pronounced her dead in the hospital, I wailed uncontrollably and I keep saying it was my fault. I told my hubby it was my fault that she died, my hubby wouldn't let me think like that.

Now that she is gone, nothing would bring her back. I know that nothing can happen against GOD's will. There must be reasons why things turn out the way it is. The only consolation that makes my grief bearable is that she IS amongst the saints and angels in heaven now. That I am absolutely sure. And because of that I have no other choice but to make sure I can also go to heaven when my time comes so that I can see her again.

Emily, please forgive me for not being a good mum to you and caused you so much hardship. I would gladly take your place and suffer in your place, if I could. I hope you could feel our love for you throughout the months even though you were just a baby. Emily, I love you sooooo, sooooo much. Forgive me...

Beautiful Images of Millie-girl

I am feeling better. I have been attending the daily morning Mass for the past few days at the suggestion of a BEC member and I vouch that it has worked wonders for me. I felt more at peace with myself. I have been sleeping better too. I got 5 hours sleep the night before and 8 hours last night.

Yesterday morning, we went to the cemetery to place some flowers on her grave. Cried at the sight of the little grave of hers. We will make a nice little concrete grave for her in a few months from now, after the ground has set. I was telling my hubby, we should visit her grave often so that we do not forget her. Planning to do so again this Saturday, exactly one week from her passing.

The prayers are still ongoing at our house every evening. The BEC/zone members are such wonderful people and we are so blessed to have them in our community. My hubby's godfather, big P, who is always the life of the party, is a big man with a even bigger heart. He has been here daily. Aunty A, the most lovely God-loving lady who treats me like one of her daughters, has been giving me lovely words of encouragement. And the many other BEC and zone members who have been so supportive even though we may not know each other so well. My close friend, A, who is also a Catholic but living in a different place, said that she should be joining her BEC activities after seeing how our BEC/Zone members have been so supportive to our family at these times. I hope she does that because, being a Christian is about community living, people unified by their faith and love for Christ and these people form the Church.

These few days, I also realised how wonderful my hubby is. I just told him, you are not a perfect man but you are a perfect husband for me. With him by my side, the burden of this whole difficulty journey I have traveled in the past few months and especially the last few days has been lightened by half. I guess it is the same for him too and that is what marriage is about, sharing everything... for better for worse...

I still stare at her picture near the altar at home for long periods. I talk to her picture and I cry. I am not ready to put thoughts of her away. After the 7 days prayers complete, I will put her picture amongst our family photos displayed in our house. I know when time passes, I will be able to talk fondly and proudly about her with family and friends, without the grief that I feel now. I am recalling all her special traits, her beautiful smile, her lovely laugh and her cute pout. I want these beautiful images of my Millie-girl (that was what I called her) engrained into my brain, of course the many pictures I took of her will help, lest my memory starts to fade.

And this blog which I started a few months back with the purpose of recording our journey with Emily will be fondly read from time to time to remember her by. A thought came to me 2 days ago, I think I should get this blog published into a booklet of something, so that I can share my experience with parents out there who may be facing difficult times like us. I hope that someone, even if it is just one person out there, find this helpful, it will be a worthy effort. I am  not sure yet how this can be done, but I will try. I have a few more thoughts that I want to enter into this blog before I close it for good.

Another hard day...

3rd Sept 2012: I did not sleep at all the night before, I tried but millions of thoughts were passing through my brain at the speed of light and I could feel the weight of it all between my brows. Guilt, regrets, scary thoughts, what I want to do in her remembrance, I don't know and so much more... I tried to imagine our Mother Mary's face so I can calm my mind, but it didn't worked. I think I didn't sleep at all. At 6.30 am, I got up and went to church for the 7 am daily Mass. That worked wonders, I felt better.

We went to register her death with JPN, it was completed by about 1.30pm. The Government Clinic nurse visited us for documents for their records. She was such a kind lady. I really appreciate the goodwill and kindness that I have witnessed in so many people be it in hospitals, clinics or any government agencies, etc. during these past months. I now have renewed faith in the goodness within people in general which I thought had disappeared from mankind.

A few of my colleagues and my hubby's visited at different times of the day. In the evening, we conducted the Day 3 prayers. By 10 pm, I was out cold. I managed a good 5 hours of sleep that night.

Emily, from where you are, watch over us. I don't want to ever forget you, I want to be transformed into a better Christian person because of you. Your life will not be in vain, I will make sure, with God's Grace, that I am better person because I had you in my life. I love you, my little Emily.

Final Journey

This happened yesterday, 2nd September (Sunday).

We were told to be at the Serdang Hospital morgue at 9 am this morning. It was a hard night to sleep the night before (Saturday). I constantly cried. I felt if I had done things differently, she would still be here. I know it is too late to cry over spilled milk, but I feel like I had not done enough. Have I not been a good enough mother to her? My heart ached and felt it weighed a tonne. I literally cried myself to sleep, I think managed 2 hours of sleep.

So we reached the morgue slightly before 9am. The whole process finished at about 11.30am and we were allowed to receive her body. The cause of death was stated at broncho pneumonia. Our BEC members have arranged with the funeral service people the night before and with a few calls of confirmation and they were there waiting with us since about 10am. My close friends also came to lend me support there.

I had prepared a dress which I bought her a few weeks ago. A pretty little light brown checked frock. She had finally grown to a size when I can start fitting her into nice little dresses which I had been buying for her but alas, she only got to wear this one. The funeral service people helped us dress her up in the morgue release room. I hesitated but with my hubby's reassurance that she looked fine, I finally gained courage to see her body in the room. She looked beautiful in the pretty dress and white lace socks, I touched and gave final kisses to her little cold and lifeless body and she was lifted into the little casket. We placed her favourite little pillow and a small key toy in it with her. And we left the morgue to go to the church.

We arrived with the casket about 15 mins to 1 pm. It was placed beside the church hall while waiting for the funeral service at 4pm. Prayers were said for her by BEC members and friends, even the group of Myanmar people having their gathering there offered prayers for her. My older children arrived with my brother-in-law and my sister-in-law and her children also came. My mum, brothers and sister-in-law reached about 3 pm, my friends and some BEC members were already there since earlier. We moved to the main church and by now more BEC members, friends, colleagues have arrived. I placed a small Lady of Perpetual help pendant which Father blessed and gave to us a few months ago when Emily was sick and hospitalised. At 4pm, my hubby carried her casket and with Father, followed by the my children and I and the rest of the congregation, we entered the church main hall. It was the most beautiful Mass, Father's homily after the Gospel reading, was the most beautiful one that I had ever heard from him. He depicted little Emily as the pretty tiny flower in a pot that GOD so loved, watched over and waited for and finally brought HOME with HIM. He said Emily through her 5 months of life (5 months and 9 days actually) has brought my family so much closer to each other and to GOD, she has brought together and affected so many BEC members.We witnessed this in the beautiful Mass which although was so hastily arranged, had seen so many people come together to make it such a beautiful one that my family and I are so very thankful and grateful for. I cried at his words, my 4 year old daughter asked me not to cry because Emily is in heaven.

The Mass ended, and hubby carried her casket to entrance of the church and everyone present blessed and looked at my peaceful and beautiful little baby before the casket was closed up and brought to the burial ground a short drive from the church. Father came and conducted the burial rites, hubby placed the casket into the dug grave. My boys put in handwritten messages for their little sister and witnessed by so many people, she was buried.

It was the most beautiful Mass and burial that I can ever imagined. Emily's final journey in this harsh world was a most beautiful one.

BEC members came to say Rosary prayers for Emily at our house and will continue to do so for 7 days from Saturday.

In Ever Loving Memory...

I have not finished my post that I was writing on Thursday, I just posted it half-finished just now. Today is 1st September 2012, Saturday. Today is a day I wished a hundred things could be different. I wished I had done things that I didn't, I wished I had been wiser, if only I knew...

1st September 2012, is by far the hardest day ever in my life. Today, my baby Emily stopped breathing in my arms. It's been a surreal day. I am still not completely in terms with the fact that I have lost her, my lovely princess Emily darling, for good. My brain is not thinking much, it's pretty empty now. Tired, my heart seems to have sunk very low at the moment.

My good Lord, please have mercy on her soul, bring and keep her with You in heaven. My Emily, mummy is sorry for bringing you to this world and causing you so much suffering for the short 5+ months of your life. We will never forget you, we will love you always and forever. We will meet again one day, I LOVE YOU, I AM SORRY.............

On Thursday

Emily is 5 months plus a week old today. She is having a cough and making her more cranky. She got the cough from me, unfortunately. I couldn't cure my cough which has been going on for more than a month now. So sorry to see her coughing, feeding her medicine is also very hard, she will spurt it out most of the time. It's a hard week, MIL overly worried and hubby said we should take care of her ourselves, so I had to take 2 days off and hubby, 1. Luckily Friday is a holiday, so save one day leave. Next Monday will be her check up at Paeds in Hospital. If she is not better then, the Paediatrician can check her again. Hopefully, it won't turn into something serious.

I have checked out Kiwanis Foundation, printed out the forms required for Emily to join in. From my phone enquiry to the centre, looks like for infants, the therapy is weekly while for toddlers is 3 times per week. I am not sure yet how this will work out because I don't know if they conduct the therapy on weekends or weekdays. How will we manage if they only have it on week days? Both of us work, so I really don't know.

Heartfelt Thank You!

We had our IJN check up 3 months post operation. The doctor said that the 2 holes in her heart have been fully closed. Thank God! But he did mention that a valve maybe leaky and will check if any swelling will happen to her heart, so far her heart looks normal. If no complications happens, this leaky valve may not need any intervention. Anyways, he will see Emily again in 3 more months.

We also went to Serdang Hospital to get appointments to check her eyesight and her hearing. We will have more appointments in September. 

Looking back at how she was right after surgery and her now, it's a huge transformation that can only be possible with God's grace. Reflecting back, I am really grateful for the many kind gestures, words, prayers and thoughts by so many of our friends and relatives. I want to write this now so that I will never forget the kindness of so many and particularly a few that I will mention. In order to respect their privacy, I will only give their initials. You know people are often forgetful, I don't want to forget this ever. 

I am really thankful to SN, she has taken so much time and effort to come cheer me up when I am stuck in Hospitals. I know she did so because of her long struggle with her dad's illness when she spent huge amount of time in Hospitals too. So I think she feels strongly about providing support to friends who have loved ones in hospitals. At these hard times, friends being there for you not only lend you a listening ear but also provide you comfort and hope. SN always got more close friends along and they will visit me for hours at the Hospitals just to chat. Thank you PY, AH, KK for spending sometimes hours with me in the most uncomfortable of places. Thank you SC and AL for your kind concern eventhough we were not keeping in touch for some time. 

I was very touched by the kind gestures of NH, he took his own money to offer prayers during the times when we need divine help. Even offered to help with medical expenses. I am pleasantly surprise that he has a heart of gold though he doesn't necessarily display this out. Your thoughts are enough, thank you. My other colleagues for taking time to visit.

Also I am very pleased with the doctors and nurses at the hospitals. Their services are marvellous and they are very friendly, much improved from years ago. The nurses especially are very under appreciated. Their jobs are really like those of angels, thank you to each and everyone of you. 

There are the church people who has shown us much concern and given their prayers for Emily unselfishly. The parish priest for taking time to hear us and the trouble to perform her baptism in the hospital. 

My family members, my mum and MIL for helping out with the older kids while we are dealing with this. Aunty S for visiting us eventhough we have not seen each other for years.

I may be strong willed but these show of kindness from so many still means a whole lot to me and my hubby. At times of needs, we are able to see uncommon kindness that enhances friendships and kinships. I never want to forget this. 

Emily is so much improved with the grace of the Almighty. My great friends and families played significant roles in helping us cope. THANK YOU!

Progressing...

We went for Emily's check up last Monday, her weight is now 4.25 kg. Although she is still below the average weight for babies her age, it is still a good increase from her post-ops weight of about 3.4 kg. We will need to feed her about 90ml of breast milk every 3 hourly. Her medicine has also been reduced. Hopefully after the next IJN checkup, we can stop her medication. We will be going to IJN in 2 weeks' time. I hope her heart scan will show that she heart is doing well.

Since she has been staying in hospitals for a large part of her 4 months, we just realised we have missed 2 of her immunisation. Last night, we finally bought her to a local clinic and got her month 2 jab. She will need a few more jabs to catch up.

The paediatrician in Hospital Kajang has also given us 2 referrals to check her eyes and her ears in Serdang Hospital. We need to make time to bring her there too.

Emily, the Smiley

I wonder it anyone reads this blog besides my hubby but that's fine. I just want to write down what I go through periodically, together with our precious and special little girl, Emily. She is now 3.5 months old, her next check up is on this coming Monday. I really hope we hear all positive things from the doctor. She seems to be doing very well at home, feeding well, sleeping and playing well too. Even after I swap her formula powdered milk to breast milk, she seems to be doing fine. My MIL was worried about her not feeding as much compared to the formula milk but under my care, she seems to feed well. So I am quite sure, she is doing fine. I think it's more about getting her in a comfy positiion so she can feed on the bottle nicely.

Another 3 weeks, we will be seeing the IJN doctors. Apart from a healed scar on her chest that is about 3 inches in length and resembles a centipede, she seems to have healed very well from her operation. If I have not mentioned before, the IJN bill worked out to be pretty hefty and we will be paying a large amount from our pockets. But I keep reminding myself about the time when we were uncertain about her heart condition and we had made up our mind to foot any cost involved just to get her cured, I stop feeling the pain the money that her operation cost us. I honestly do not mind paying the money in exchange for her mended heart. In fact I am very grateful to my hubby's company for helping us (in whatever extent) even when the insurance doesn't cover medical cost from congenital heart disease.

Emily, she is a pro at smiling and making cooing noises. You can easily make her smile and laugh by baby-talking to her, provided you satisfy her tummy first. Life with her is at the moment pretty normal. She looks and acts like any other baby, most of the time. I hope she will continue to do so. I pray for her to grow and learn normally like any kid and that she will have a fruitful and fulfilling Christian life.

Gadgets for Baby

Emily is due for her check up in the hospital the Monday after next. She is going to have her blood drawn next Monday to run some tests. I hope the results will allow her to stop all the medication that she is currently taking. She is also due to change from fat-free formula milk to breast milk which I have accumulated for her in my new freezer. Her very expensive fat-free formula is almost out as well, but I am a bit worried about her ability to adapt back to breast milk after 6 weeks of not taking it. I am also worried if switching back to breast milk will cause any problems like it did right after her operation.I think I will mix both types of milk and take 2 to 3 days to switch her over. Hope I still have enough formula milk to do so...

Otherwise, Emily is doing just fine. I think she is well over 4kg now, hooray! She still pants after feeding for a short awhile but will resume feeding quickly. She is responding to us well, smiling when we make funny noises. She is even cooing and oohing back at us. She has been flagging her arms and legs since a long time ago and her neck is getting stronger.

As my mum suggested, I have brought an electronic automatic shaker for the baby hammock and it's a great help. We can leave her for a long while in the cradle while I do other stuff around the house, RM180 for that with 6 months warranty. This will be useful too when the maid is here so the maid can do other work while Emily sleeps in the day. Additional, I have ordered iBaby online. It's an IP webcam/baby monitor that can be accessed and controlled using iPhone app. It has night vision and supports 2 way communication too. I am waiting for the RM699 iBaby to be delivered. Quite excited about getting it to work so I can start checking on Emily live while I am at work!

One Month Post Surgery

Can't believe it that it's only been one month since Emily had her open heart surgery. She is doing so well at home that it feels like it was ages ago. My little baby is eating and growing like a young baby should and we have gotten really so used to her being around us all the time. She is a very smart baby, she knows when there isn't anyone watching over her, even when she is supposed to be sleeping. If you leave her side for even a minute, she will start fidgeting. If you still do not run to assure her of your presence, she will start crying! Her grandmothers and I have gotten used to this. Some singing is also required to make her sleep faster. She also loves to be cradled in your arms, she would sleep so soundly.

As I write this in my office, I miss holding her and planting kisses on her little chubby face. I love to kiss her chin most, the cute little chin of hers :). Fortunately, I have her pics and videos on my iPhone when I miss her. Her hair is starting to grow back on her little bald head. I can't wait for her to grow bigger to fit into the pretty clothes that I bought and also given by relatives and friends.

Can't find her neck no more!

We have a few checkups to go to in a few weeks, both at Kajang Hospital and at IJN. At the moment, we are about to run out of the special, fat-free milk powder and I cannot find it in any pharmacies. I think we need to have one or two packs more to last till the end of the 1st week of July. I think I have no choice but to call IJN to ask where I can buy them from.

Getting into our routine

Emily is growing nicely, we can see her face getting rounder and she is demanding more feeding :). She is still on her special non fat diet until a week into July but we have ran out of Carborie, a calorie supplement. I tried finding it in a few pharmacies but none of them have it. Finally, checked out the main marketeer in the country for it and found out that it is available in Caring Pharmacies, nearest one in Balakong, Aeon Jusco. So I plan to go there this weekend.

Emily's cheeks are so kissable!

Emily has been well-behaving so far, not much of a trouble maker :P. She is due for her check up in a few weeks at Kajang Hospital and IJN in August. Her chest wound is healing but the end part of it looks a bit rare and still has a small hole in the skin. I know it doesn't hurt her because she seems fine when I bathe her or put antiseptic on it. But it still worries me, but we will wait until the next check up to ask the paediatrician.

At the last check up, the paed could still hear murmurs in her heart. I suspect this is due to the ASD which may not be entirely closed up. But I think it's not something to worry about since she is doing pretty well now. Even pre-ops, the doctors didn't seem too concerned with the ASD and they were concentrating on fixing the large VSD. They did mention that since they were doing the ops to close the VSD, they will close the ASD as well. So I believe the residual ASD should not cause problems.

We have arranged for our mothers to take turns in caring for Emily while we are at work. This week, my dear mum is down from BP to help us. She took the bus here and I went to Tsk Selatan Station by KTM to get her. Was my first time to the new bus station, it's very big and I think still under utilised. I am sorry to trouble the 2 grandmothers but maid is still not here. Checked with the maid agency and she said that the maid is expected to arrive only late August, so we have a few more months to wait. My mum also helped us do some rearranging of furniture (with the help of my sis' maid) in our living and dining rooms and now it looks a bit more spacious. I need to do more organising and cleaning and also need to clear some stuff. Didn't manage to clear the maid's room yet, so hubby need to make time to do so soon. Lots to do but we are much more settled. Getting into a good routine, tight/rushing but manageable.

Journey continues...

We have been home for 4 days now.Emily is feeding from the bottle very well. I think she will be catching up with all the weight gain that she needs very fast.Tomorrow, we are going to have her stitches removed from her poor chest. I think it will hurt quite a bit for her but compared to what she has been through these 2 months, it will be a breeze. And moreover, this is the last bit from her surgery. She should be gaining speed to a full recovery and also start growing like a baby should.

Whenever I bathe or change her, I will cringe at the sight of the stitches and think about the permanent scar on her chest. I hope she will take the scar positively and take it as a reminder of what she has been through and how precious life is.

When I look at her now, how she sleeps so peacefully, how she feeds to quickly and how she sometimes flashes her smile that melts my heart, I am really happy that the worst times are over. I tend to forget that she may have other problems related to her syndrome. But then again, it's a 'may'. So I guess there is really no point in thinking about the mays and maybes. Well, I should just enjoy taking care of a young life and nurture and love her as I did her older siblings.

Family and friends have been very supportive of the whole situation. Concerned family members and friends from work and church have visited us in the hospitals and at home quite a bit. We are really thankful for all their concerns and especially for their prayers which I really believe helped Emily a great deal in her recovery. As suggested by my dear friend, I went to church today to offer thankgiving mass for Emily.

As I said, this is a journey and Emily, we as parents and her siblings, as well as all family and friends are in this together. And the journey continues, we hope we have more happy times then sad ones...

Home Sweet Home

Emily was tranferred to the normal ward in IJN since last Saturday, after 7 days in ICU. I stayed with her until she was discharged yesterday, 10 days after her operation. She has improved tremendously in the last few days. Her lungs improved and they finally took off her oxygen successfully after trying for the last few days. I was also worried about her feeding too. She has been too long feeding by tube that she has forgtten how to suck and swallow. I tried relentlessly and finally, she got it! I was elated. It was drastic improvement from day 9 to day 10! I though we would need to stay another day or two but the nurse told us we can go back yesterday, yeah! Finally!

Emily is home and doing very well, feeding like a pro. I bathed her for the first time in many weeks, she wakes often for milk. She is having a special diet with low fat for 6 weeks because of side effect from the surgery. So I have another issue. I have been expressing milk and storing it in the freezer and I am running out of space! I am thinking of buying a freezer or my milk will have to be discarded. What a pity that would be.

Need a bigger freezer!

Anyway, we need help with the care of Emily. I am hoping to get MIL and my mum to help out till the maid from Phillippines arrive in a few more months. But I am so very glad and grateful that Emily is home now after staying nearly all of her 2 months of new life in hospitals. Looking forward to a more routine and normal life for all in the family.

Getting Better

25th May:Day 6 at ICU. Emily is getting better and she has been awake more often when we visit her. She is trying to move but her hands are pinned down. Doctors are trying to wean her off the ventilator. Her heart has been healed but her lungs are not that well yet. I will be seeing her again this evening and I really hope she has been successfully weaned off the ventilator. Pray Lord, please let her be weaned off the ventilator.

Although she looks better now that her water retention has subsided, she still looks very uncomfortable being restricted from moving her limbs and I cannot cradle her in my arms. I really hope she can get out of ICU soon so she can feel mummy's touch and embrace again.

Mother Mary, please help bring Emily's plight to our Father in heaven. Please intercede for her, ask our Lord to have mercy on her and let her recover quickly. Please let her come home, she has been away from home for 7 weeks now, staying in hospitals.

I ask this through Your son, Jesus Christ, Amen.

I am in Holland!

I started working today, after 2 months of maternity which was spent largely in hospitals. Emily is still in the ICU of IJN and I will go see her later in the evening. My hubby is on leave and will see her in the afternoon.

Yesterday, her condition did improved. Her lungs are better but she still needs some help with the ventilator. Her chest has been closed up. She was awake for a short while but then they started her sleeping medicine again so she went off to sleep again. I miss her now that I am in the office. Will check with my hubby about her condition in an hour or so.

As I was too free while waiting in IJN yesterday, I went to visit the national library which is just opposite IJN. When browsing through the bookshelves, I came across a book by chance that talks about mothers with disabled children. In it, there was a mentioned about a poem that depicts the experience of parents when they find out that their babies have some disabilities. I googled it up and here it goes:

Welcome to Holland

by Emily Perl Kingsley

Holland is beautiful in her own way...

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome To Holland”.
“Holland?!?” you say, “What do you mean “Holland”??? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills…Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes that’s where I was supposed to go. That’s what I had planned”.
And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very significant loss.
But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.

Well folks, I am in Holland and I will do my utmost to make sure I enjoy it thoroughly.

Post Surgery

21st May: Emily had her open heart surgery yesterday. She was brought into the OT at 7.30 am and came out of it at about 12 noon. It took an hour longer than expected.  There were some unexpected complications with her lungs and the surgeon left her chest opening unclosed. The enlarged lungs may built up pressure in the chest cavity and that mat affect her heart. Both hubby and I got quite worried when the surgeon explained what happened to us, especially when he left the chest unclosed! But looking at another patient with similar situation, I felt better that it is not that uncommon. 

Today, I came to see her in the ICU and she is much much better. The nitrous oxide gas that helped dilate her lungs has been weaned off and she is off the ventilator. Doctors planned to close her chest today! However, she is still in ICU and they will continue to monitor her closely.  I have been waiting in IJN after the afternoon visiting hours so that I can see her again at the evening visiting hours. So tired, wants a nap but there is no where to sleep. I did however, managed to find nursing rooms for me to express my breast milk. Another great thing in IJN is they have free Wifi through out the place! That is great! I can at least get on Facebook and surf for free here while I wait.

Night before Surgery

19th May Tomorrow, Emily will undergo open heart surgery. This is what is required to cure her heart and also what we have been trying to arrange for her. Finally, the operation will be done in IJN early tomorrow morning. We have done what we can and now I with confidence, leave everything to the Almighty.  I am both glad and slightly worried. As with any surgery and especially heart surgery on a baby, there are risks. But it's harder on her to continue on without surgery, so this has to be done. As I said what needs to be have been done, we can now only trust in God and ask for family & friends to pray for Emily for a successful surgery tomorrow.  I pray for her with the prayer below: St. Gerard, who, like the Saviour, loved children so tenderly and by your prayers freed many from disease and even death, listen to us who are pleading for our sick child. We thank God for the great gift of our daughter and ask Him to restore our child to health if such be His holy will. This favour, we beg of you through your love for all children and mothers. Amen.

IJN, Long Awaited...

May 17th: This is a date we have been waiting for, our 1st appointment at IJN after almost 1 month of waiting in the ward. In between, we have consulted Gleneagles's Dr Lim twice. He is pretty famous in the field of paediatric cardiology, everyone in the same and related field seems to know or heard of him. He is very nice and explained everything well to us. We wanted very much to put Emily under his care but both my hubby and my company do not cover the cost there :(. Which is why we wanted to have a go at IJN to see what options we have.  Finally, the day came. The ambulance was 2 hours late and we reach there at about 11am when we were supposed to be there at 9am. But it was fine, we did not wait too long to see the doctor. The diagnosis confirms gleneagles finding that Emily has 2 large holes, one between the atriums and ventricles each. Operation must be done to correct them. They told us to go back and wait for an operation date which will most probably happen in 2 to 3 weeks time or earlier if there is any cancellation of surgery. I was reluctant to go back with that and asked since my hubby's company can cover the cost & even we are willing to foot the cost ourselves, can we get a faster date? To my delight, he made a few calls and said YES!  We are to meet the surgeon in IJN tomorrow  and I think we will get the operation date and estimated cost. I hope the operation can happen early next week.  Meanwhile, Emily although is pretty stable and eating well, is beginning to have problems in her lungs because of prolonged oxygen dependency. She is on asthma like medication for that. That got me really worried. We cannot stay in the ward like this much longer or other problems may start creeping in. So I am really hoping we can have the operation done very soon. On the bright side, her weight is now 3.2kg. My feeding efforts in these few weeks paid off! Really want to bring her home and begin our usual routine life. Staying in the Hospital makes me a bit mixed up. I tend to lose track of time and forgets the last hour that I fed  her! Gotta get out of here soon, praying so.

Ambulance Ride Again

7th May: Still in the hospital. We had a follow up appointment at Gleneagles today, again we took a ride in the ambulance. Hubby drove himself there cause we were told there was no place for him in the ambulance. But there was one seat empty but never mind.  Doctor there advised to go ahead with the operation as her weight gain is slow and she may risk getting infections staying in the hospital for longer. We decided to still consult IJN which we have an appointment in 10 days and if IJN cannot do the operation in the near future, we will go ahead with Gleneagles. Probably at the end of the month.  Otherwise, Emily's condition is pretty stable but we still cannot go home. Her weight gain is not as fast as I hope, she is still on medication  and my leave is coming to an end. Not sure what to do still. Might have to leave her with the nurses for a week or two when I start work and while waiting for the operation. Will need to discuss this with the doctors here.

It's True...

1st May, 2012: I got some sleep last night, not much but still felt today is a brand new day! I think I can digest the news or rather the dreaded fact that I have been hoping was not true. Emily has Down's Syndrome.  Many prayers had been prayed, asking for a miracle so that my Emily will not have the syndrome and is as normal as her brothers and sister. But alas, our prayers were not answered. God must have a better plan for us. That's why HE gave us this gift, the gift of Emily. I may not know now the real extent of what this gift will mean to me, to the rest of the family and extended families. But I know God has His reasons and I truly believe it will be very good reasons which we do not know yet.

I have been thinking about the start of this whole journey. From her conception, some how I knew. I have been given many signs but I still tried to avoid worrying when it wasn't fact yet. I know at my age, the risk of having a Down's baby was pretty high. We have in fact been avoiding pregnancy for years now since my 3rd baby. But by one irregular period and therefore miscalculation, I ended up pregnant for the 4th time. I immediately got worried and read up a lot about Down's. I even read about other genetic disorders which some of them were even more serious than Down's. But I keep pushing this aside and tried to get on with life as usual. As I did that, I felt that I did not have a connection with the baby in my womb. Somehow, I did not relate to this baby like I did with my earlier pregnancies. I felt guilty at times for feeling that way.

At 20 weeks, the gynae told me of the risk and asked if I wanted a blood test. Hubby and I thought about it and both of us did not think it necessary cause there is nothing we can do about it even if we knew. I rather know later than earlier. Later on, my ex-classmate added me on Facebook and I saw she has a daughter who has Down's. That again triggered my worry about my Emily. Then many times in Church when I see families with disabled children and I admired them for their strength in dealing with the difficulties. I wonder how they do it. 

When Emily was born unexpectedly at about 5 weeks earlier than the due date, I noticed her eyes were a little different from the rest of her siblings. I asked my hubby if he thought there was anything different and he said no. So I brushed aside the inkling feeling again.  Finally, one paed told us her suspicion, when Emily was treated for jaundice at 9 days old. We were both worried sick and got more devastated as we find more characteristics on her that indicates she has Down's. It has been awhile since I saw my hubby shed tears, and I was crying quite a great deal too. We opted to go home without doing any test after Emily completed her phototherapy. 

We hoped against hope, prayed more fervently, talked to the priest for guidance and blessings. Finally, after thinking long and hard, I decide to refer this suspicion to the government clinic when we followed up on her prolonged jaundice.  We ended up in a hospital ward since and she has also been diagnosed with congenital heart prob which requires corrective surgery. This will be the 1st ordeal and a major problem that we need to resolve. There will be other health and learning issues, related to her condition, to come. I have been staying in the ward with her for coming to 3 weeks now. I use this time to bond with her, making up for lost time. Next, I will be telling concerned family members & friends this piece of news.  Emily, we are in this journey together and we will take one step at a time. With love, mummy.

Tired

April 30th I am so tired, both physically and mentally. Too tired to think anymore.  Today, the dreaded result of the chromosomal test came back and it is positive. My Emily has an extra chromosomes 21. I have tears flowing down my eyes as I write but I don't know what to think. My mind is pretty blank but my heart is hurting. I just want to sleep and leave everything to later. 

Entering the Kingdom of God

13th April, 2012: Today is a joyous day, Emily was baptised! We are very thankful to her Godparents and Father for taking the trouble to come to the ward to perform the baptism on my precious little Emily. Also to the Sister at ward who had helped us making this possible. Now we are sure we are all going to end up together in the Kingdom of God come what may!
The day started hectic, had to rush to KL to send Emily's blood sample for chromosomal test. Took the KTM and made it 30 mins before the 11 am deadline. Rushed back home and had to complete the baptism dress I had decided to make for Emily. With God'sgrace, I did complete it! It was not looking like it would turn out ok but somehwow, it did. It isn't perfect but it is the 1st dress mummy makes for her.

Pure white dress for Emily's baptism.

Many months of difficulties ahead with Emily still unwell. I will be updating this blog when I can. Meanwhile, keep us, especially Emily in your prayers. 

Temporary State

Emily is 34 days old today, we are still at the hospital. The docs and nurses here are all very kind and I am pleasantly surprised at this. The services provided by the government hospital or at least the attitudes of the docs and nurses have greatly improved.  My stay with Emily in hospital is pretty boring and sometimes tiring. I don't get a good night sleep since my little darling here likes to whim and whine at night but sleep through the day! But still I would rather be by her side than anywhere else. At least I can see how her condition is at any point of time. I am happy today that she weighed in at 2.61 kg, she gained about 200 g in about a week. I have been feeding her every 3 hourly with EBM with added HMF (human milk fortifier) and 1 ml of MCT oil. At this rate, she can be 3 kg in another 2 weeks!  Incidentally, my good friend has lent me a book which talks about the afterlife as the Catholics should be believing. Frankly, it's pretty heavy stuff. As I am a convert, I was never taught in detail about this aspect in RCIA. The book which I have read half way, tells in minute details the interpretation of the book of Revelation and other books in the Bible on what is expected in heaven, hell and purgatory.  At this moment of my life, reading this helps. This life, with all the happiness & sadness, tribulations & ordeals and wealth & lack of it, is just a temporary state which we should not be too concerned about. But knowing it versus really believing & living it are different matters altogether. Without God's grace, I don't think anyone can really honestly believe and live it. Aptly, at this point of my life, I should remember that it is a temporary state.  What is more important is all of us should be living this life in the way that pleases God most so that we can join HIM at the second coming of Christ.

Life with Emily, in hospital still...

April 23rd, 2012: This morning the trainee doc took Emily's blood to test for urea level I think. This is to test her reaction to a medication which will help control her heart failure. Emily has so many holes on her hands and feet because of the many attempts over the weeks to draw blood from her or to insert a intravenous tube for medication purposes. Each time they take her to do that, she will wear herself out crying. Such a tender age and so much pain that she has to go through.  I feel like a bad mother :(. So sorry, Emily.  On a positive note, she weighed in at 2.54 kg today! Hooray! She was 2.42 kg about a week ago, so happy she is gaining weight which she seriously needs to. She has to be bigger and stronger to go through the heart surgery.  This is how I start my day with Emily at the hospital. At 3 am there's a feeding and every 3 hourly after that. At 6 or 7 am, we give her a wipe and change of clothing. Diaper changes are throughout the day and that is pretty often. I do get my breaks when she sleeps.  I can make short trips home or go buy something or just read/rest/ relax. It's not that difficult taking care of her here, only I don't get to sleep through the night and no TV or access to a PC. It's only 7.30  and I think I will go back to bed for a bit, been up since 5.30am and was up from 2.30 to 3.30 am earlier. Cheerios.

Full moon without the fancies...

Today is Emily's full moon. We were supposed to have a small party at home with family members but alas we have to forgo that. Emily and I are still in the hospital. Instead, I have ordered Ayamas gift packs for family, friends and colleagues to be distributed.  Emily doesn't have any fancy new clothes either, but shebisvwaering something new whic was bought earlier. I will make up for this when you are well again. Mummy will buy you pretty new dresses!

Last Friday, 20th April, Emily and I took a ride in an ambulance curtesy of Hosp Kajang to Gleneagles in Ampang. It was my 1st experience riding one and it would have been pretty exciting if it wasn't for the seriousness of the trip. We went there to get a Echocardiogram done on Emily's heart. We were the centre of attention in the clinic since we arrived in an ambulance and Emily was brought down on a stretcher inside an incubator! But for Emily it was sleep all the way! The result of the scan was more serious than I thought or hoped it would be :(. She has 1 hole between the atriums and the ventricles each! But the doctor is only concerned about the ventricles one, the term is Ventricle Septal Defect (VSD). It must be corrected by open heart surgery and should be before she is 6 months old. Now we are trying to get her bigger and stronger before we can operate on her. 

I have got many things to plan for. I am going back to work in month and I don't know who can take care of Emily when I go back to work. I might take extended leave but for how long? Then, there are the big kids. Apparently MIL had problem of her own and she cannot take care if them for now. So many headaches! Hubby asked me to quit job but there is no way we can get by with one person's salary. As I told a dear friend, God is really testing me,  but HE won't test me beyond what I can handle, I am sure.  God Almighty, have mercy on us. Guide and show us the way. Give us strength, deepen our faith and love for YOU and for each other as we travel on this difficult part of the journey of our lives. YOU must have your reasons for wanting us to go through it and we trust in YOU.  I pray for Emily's preparation, heart surgery and recovery happening within these few months ahead. I humbly ask you to pray for her too.

Long Stay in Hospital

Emily is still in the hospital, it's been 3 days now. Each day I go see her 4 to 5 times as I cannot stay in with her but I can visit her as often as I like. Each time, she looks different to me, sometimes she looks fairer, sometimes she looks red, sometimes she looks thinner, sometimes she looks rounder, sometimes she looks perfectly normal, sometimes she looks not so. Breaks my heart that I cannot hold her, she still is on oxygen and tube feeding although her intravenous saline drip was stopped. I bring my EBM to her daily, packing them in small disposable containers as the nurse advised.

Hubby and I went to see her together today as it's a public holiday. The older kids tagged along but they cannot go into the ward. Afterwards, we dropped by the church to pray and light candles for our Lady's grotto. We met the priest and he advised us to arrange for baptism for Emily as soon as possible. Now I do not know how to do this as Emily cannot leave the ward yet. And others are not allowed to enter the ward either. I need to find the sister in the ward to ask for permission to either bring Emily out for 2 hours or let the priest and godparents come in to perform the baptism on her. I am also trying to get her baptism dress as I want this to be her special moment with beautiful white dress to match. But it's not easy to find pure white dresses that fits a newborn. I will try again or I may have to make one quickly.

She will have her blood drawn for chromosomal test on Friday and an appointment at different Hospital was made for her in May to see the cardiologist to check her heart. I have been seeing her SpO2 level with assisted oxygen was 100% but this afternoon, it is at 95%. Wonder if this is problematic.Did not manage to talk to any doctors today. Getting worried about her condition.

She is 20 days old today. God, please have mercy on her, make her healthy soon and come home with us.

The Gift of Emily

As a mother of a special baby girl, I am embarked on a journey which will be full of challenges but also full of love with my newborn girl, Emily. I have decided to create this blog to jot down our journey together, Emily and the rest of the family.

Emily at 5 days old, looked prefect to us.

It's been the most trying times for hubby and I to find out the most dreaded and feared news any parent can have and the daily ordeals that will be laid upon us. Emily was born to us on 23rd March 2012, a full month plus 1 day before her due date. Doctors didn't notice anything different with her and we were both discharged the next day. The first 2 weeks, she was afflicted with jaundice, which is quite common. On her 8th and 9th day, she got the usual phototherapy treatment for 2 days at a private hospital and the paediatrician was the 1st to notice and tell us Emily was different, she may have a genetic disorder. Everything went downhill for me after that, all types of fears, worries, regrets and even anger went through my mind.Why? Why did I have to have one more child when I already have 3 healthy kids? Why were my prayers for a normal, healthy baby not answered? Maybe the doc was wrong, maybe we can get a miracle and she will be cured. We continued to pray daily, prayed in church and asked Father for blessings. We were undecided and reluctant to send her for further tests that may prove our fears beyond doubts. So we brought her home. We did not know how to tell our families, our friends...

Finally, I consulted the government clinic doctor when we followed up on her jaundice case if she thought my baby has the disorder and upon checking they referred us to the paeds in a government hospital. We went to the paeds and they did a more thorough check up and admitted her to the NICU ward. Lots of things are being checked now as she is in the ward. Results are still upcoming but some preliminary facts are already present. She is being treated for infection in her lungs and she is on antibiotics. The most important issue now is my little Emily has congenital heart problem. The seriousness is yet to be determined, more tests are to be conducted  by cardiologists. Whether she will need surgery urgently, later or not at all, we will find out after that.


We also announced this to close family and friends this news. We have been getting messages of love and support. Personally, I am still trying to grasp the truth and hoping against hope that miracles can come true, if God is willing and my Emily will be healthy and normal. I cry a lot, and sometimes, I don't know how to feel. I am taking it one step at a time. I know, and have been told, God has His plan for each of us and Emily is His gift to us. I know this but I have to learn to accept it and only God can give me and my family the strength to face it.

Emily is 19 days old today.