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.