In summary, Samantha is suffering from a disorder called Mitochondrial Disease which also caused her lactate acid and PH to be very high. You can read more here as it’s too scientific for me to explained.  This disorder has affected her kidney, liver and brain at this juncture.

Initial abdominal ultrasound could not locate her left kidney and so they suspected that she has only one kidney but latter ultrasound managed to located her left kidney but it is very small. Since her renal profile are quite normal, they will perform a functional test later on her.

Her liver is enlarged. Current size is about 5cm compare to normal size which is about 2cm. The doctor are still monitoring her liver for any liver impairment for liver failure.

We had the MRI brain scan done for Samantha and the result shows that the part of her brain that controls her motor skills are badly affected.  Her eye may be affected as well as the brain controls the eye vision, movement and coordination.

Samantha has to go home with a nasogastric (Ryles) feeding tube.  Not what we expected but at this moment, we can see this is the best for her.  Most importantly, it can help to reduce her vomiting as tube feeding is a gentle way of feeding. She doesn’t have to use much energy as compare to sucking from the bottle because the milk and medicine/vitamin enters her stomach directly.  Tube feeding is common for children with failure to thrive.

Administering medication to her is much easier now as she doesn’t have to get agitated with the horrible taste. Feeding through the Ryles tube requires a feeding infusion pump that controls the delivery rate of the milk (75ml in 3 hours). This will restrict her mobility as she has to be hooked to the feeding pump for at least 3 hours. Another way is to use a Bolus (a type of syringe) but the flow of the milk is faster.

When we looked at other parents with their normal child, we are challenged mentally and emotionally. However, after all these, we are still glad and thankful.  We are unable to forsee the future and what is the life span for Samantha. What we could do now is to look upon God for His healing powers.  Take things one step at a time and appreciate the moments that we can have with Samantha without neglecting Jonathan.

p/s: To all the mommy bloggers, sorry for not visiting your blog as often as I used to be. Will do that once things are sorted out.

So what is the cause of her vomiting?  Like I mentioned in my earlier post, X-ray taken, ultrasound was done, MRI brain was done, blood and urine samples taken for tests.  Everything seems to be ok.  So the doctor concluded that her vomiting is due to her Mitochondrial Disorder.  People with Mitochondrial Disorder may have episodes of vomiting and migraine.  If this is the case, Samantha’s vomiting may relapse.  Nothing can be done to cure her vomiting. She may still vomit once a while but as long as she is not dehydrated or losing weight.  If the same vomiting relapses, the only thing that can make her better is the IV drips.  We hope there won’t be frequent visits/admission to the hospital.  All these while, her liver and kidney is not very good too. Do continue to uphold her in your prayer that she won’t have further illnesses.

Doctor adviced that due to Samantha’s special condition, she will need extra tender loving care at home. That would mean we are to not allow her to cry excessively, must pamper her, make her as comfortable as possible.  We suspected that her vomiting was also because she dislike taking some of the vitamins.  Because of this, doctor has reduces some of her vitamins temporarily so to not stress her too much.

Thank you all for your prayers.

However, doc still couldn’t find out what causes the vomiting. There are few causes that he is suspecting.

Pyloric Stenosis

As Jonathan had it before, Samantha had higher risk of having Pyloric Stenosis. They did an ultrasound on her abdomen again for Pyloric Stenosis. The scan came back negative and it also confirmed that there are no obstruction to her digestive systems.

Hydrocephalus (Water in Brain)

In my earlier post, I mentioned that doctor found water in her brain from an ultrasound.  It’s a condition called hydrocephalus. This can cause vomiting as well.  To confirm this, doc advised for a detailed MRI scan. The report came back negative. Basically, she does not have hydrocephalus. However the MRI report tells us something else which I will share later.

So the doc has ruled out the above two conditions. He almost come to a conclusion that her vomiting could be due to her acid level. Remember she was suffering from severe acidosis at birth which later confirms that she had mitochondrial disorder.  People with mitochondrial disorder may have episodes of vomiting, migraine and etc.  They took her blood and urine to test on possible infection also. Doc is now trying out medication and ways to prevent her from vomiting.

Could it be reflux? I started giving her AR (anti-regurgitation) formula on Wednesday. I have also reduced the amount of milk from 2 oz to 1 oz. I calculated yesterday, out of 10 feedings in 24 hours, she vomited 5 times. I hope it’s reflux or just some temporary stomach discomfort.  Better not be any kind of those rare illnesses again. Still monitoring her condition and hope she will get better. She gained 150g two weeks ago and because of this, she looses it. She is only 3kg now at 2 months.

Another not so good news. Apparently her severe acidosis did affect her brain. Doctor found water in brain (hydrocephalus) when he did a head ultrasound. Need MRI scan for futher examination.  This hits us badly. It’s so scary when you read about this medical condition. Praying hard that this can be fixed and she doesn’t have to go through any major operations.

May the Lord place His healing hands on Samantha and heal every part of her body that are not well.

He begged me to carry him in the shopping mall yesterday.  Oh dear, he is so much heavier than he was the last time I carried him 9 months ago. He is now 15kg.

His vocab has improved a lot. That makes our conversation more understandable and enjoyable. Now, he is able more willing to follow you read or sing. He can answer your questions and tell you stories from pictures or retell the tv shows he had watched. His favourite tv show is Special Agent OSO.

Since the arrival of Samantha and with her condition that requires more care and attention, I spent less time with Jonathan now. I could only watch him play on his own. Missed putting him to sleep and snuggling beside him. Missed our bathroom fun time. I missed our bonding time so much!

With a new baby in the family, he is learning to behave like a brother.  He is a great lil’ helper and “runner”. He has the brotherly instinct in him naturally. Whenever Samantha cries, he will put aside whatever he is doing and be the first running to her little sister, comforting her. He watched how I take care of Samantha. He reminds me when I forget her handky. He imitates how I express breastmilk. He even use a handky to wipe his chest as how I clean my nipple every time I finished expressing milk. *slap head*

Tell me you like his new hair style. I love it but many want to chop off his “tail”.

I am practising the art of infant massage by using Johnson & Johnson’s guide on “The Importance of Touch…”.  The schedule would be at least one time a day but preferably 2 times a day.  Massaging fragile little Samantha is like breaking her bones.

Getting Samantha to swallow her vitamins is a great challenge and can be quite stressful. In a day, she needs to take 6 vitamins.

1. Riboflavin, also known as vitamin B2 (liquid – mixture of powder and syrup)
2. Biotin, also known as B complex (tablet – crush into powder form)
3. Vitamin B1 (tablet – crush into powder form)
4. Folic Acid (tablet – crush into powder form)
5. Co-enzyme q10 (soft-gel capsule - squeeze out the oil-soluble)
6. Vitamin E (soft-gel capsule - squeeze out the oil-soluble)

She was also given Polycose (powder to mix with water/EBM) 3-hourly to help her get the calories she needs for growth.

As it is quite taxing for her to take all vitamins at once, I separate them into 3 portions.  I need to establish a routine for her vitamins intake too.  All the vitamins are so awful you can see from Samantha’s reaction when the mixture reaches her tongue. Some smells awful. My poor baby…

Samantha went for her first follow-up after she was discharged. It seems that she had not gained any weight since she discharged. Because of that, doctor advised to give her EBM instead of direct BF. This is to ensure that she gets the right amount of milk which is for now, 1.5oz every 3 hours. But Samantha tend to fall asleep after taking only 1oz or less. No matter how you agitate her, she won’t suck.

She’s like an owl. During day time, she can sleep for 3 – 4 hours without crying for milk. At night, she cries every hour and using my nipple as her pacifier. BF her is a challenge too. When I started breastfeeding her, it was so difficult to latch her on my breast.  As she is smallish, she’s not willing to open her mouth wide unless when she cries out loud.  

My other problem is the bottle teat. I think she prefers small and soft teat with slow flow. Any recommendations?

After what Samantha’s had gone through, the doctor (a geneticist) diagnosed her with Inborn Error of Metabolism (IEM) in which she had Mitochondrial Disease. However further tests will be performed as she grows, to confirm this diagnosis. Right now, she has to be on long term vitamins to give her energy.

Here’s Baby Samantha’s miraculous story……

She was delivered via C-sect due to a breech position and weighing at 2.03kg. Apgar score was good and she looks like a normal healthy baby. Initially she was sucking well from the bottle but later towards the evening, pediatrician informed us that she was shivering and so she will be put in the incubator for the time being.

In the evening of the second day, she looks lethargic and was breathing rapidly with a pulse rate of 180+. Pediatrician stopped her feeding and put her on IV drip via her belly button in order for her to rest so to see if her condition will improve the next day.

In the morning of the third day, she was not getting much better but her condition deteriorated with very high acid level in the blood (pH 6.8 compared to normal pH 7.6). Pediatrician informed us that we need to send her to a bigger medical centre for further examination. He called all of the government hospitals and private medical centres but non are available to accept the patient.  At last, without a choice, we ended up at Prince Court Medical Centre (PCMC) in the heart of KL city. We are aware of the higher medical charges but we rather not put the baby’s health at risk by waiting for another few hours or a day until we get a cheaper hospital. Pediatrician immediately arranged for the ambulance to transport baby Samantha in the incubator accompanied by Darling.

In the afternoon, I got myself discharged, one day earlier with my sisters’ help. Good thing that I was strong enough and had recuperated quite well from the C-sect. I never thought that I would be wheeled out from the hospital without my baby in my arm. I had to be strong to face every challenges and Darling and I knew that Samantha will be in good hands.

At PCMC, Samantha’s condition was quite severe. She was admitted due to severe metabolic acidosis. When the doctors briefed us on her condition, they sounded very unpromising if Samantha can make it through or if there is any brain damage. She was sedated with tubes and wires every where. Every second, every minutes, every hour and every stages that she is going through is like a battle you never know if you will win. But by faith, we prayed to God each time she goes through a procedures. That night was a painful and scary night for both Darling and I.  We are very thankful and blessed that we have a group of doctors and nurses that are very caring, loving and sincere, that are willing to put in every might and effort to stabilize Samantha. Due to the severe acidosis, the doctors had to perform a blood exchange transfusion and peritoneal dialysis to remove as much acid as possible. The whole thing lasted until past midnight.

The next day and days after that was really amazing grace of God. Her acidosis level and pulse rate slowly improves. She fought strong and progressed very well for a tiny baby like her. It was a great joy seeing her getting well every day. Indeed God is good…all the time. Indeed God is watching over Samantha. Whilst she was in NICU, we  whispered to her everyday that Jesus is holding her hands to walk through all these and she’s going to be fine. Amen!

And so here is our little girl on the day she was discharged from hospital. Tiny she is but the angel of our heart. We are still praying with faith that she would not suffer from any developmental delay, learning difficulties, physical handicaps, behavioral problems or sickness which could occur in babies affected by IEM.

Baby Samantha 4 days old: 2nd day in ICU

Baby Samantha 5 days old: 3rd day in ICU

Baby Samantha (this is the name we’ve chosen for her) is currently in Prince Court Medical Centre’s Neonatal Intensive Care Unit. She was being transferred here since last Friday, the 3rd day after her birth. Cause of illness has yet to be diagnosed and we are still praying hard that the doctors will be able to rule out the diagnosis by today.  Will write more about her later.

At the moment, her condition is quite stable but still under close monitoring. Praise and glory to God for his mercy and healing powers thus far! Our gratitude and heartfelt thank you to family members, relatives, CG & church members and friends who has been keeping baby Samantha in their daily prayer. Do continue to pray that she will recover soon.

Now I just can’t wait for my confinement. Thinking of all those delicious food and 2 months leave. Hope I can get to enjoy my two months maternity leave with minimal disruption from the office and without any annoying calls from my boss and colleagues.  They make it seems that their phone directory only has my number and only I can answer or resolve their issue and only I have the access to the information they want! This is the problem when you do not have someone as your back-up that knows the A – Z of your work.

How is the little one doing? Oh…last week’s scan showed that she refuses to turn her head down!

Doc: Come back next week and if she is still not turning, we will have to schedule for a Caesarean.

Me: So soon? My EDD is 25th. Can’t we wait till there are signs of labour?

Doc: No…by then we have to go for emergency Caesarean.

Me: *Keep quiet. Disappointed*

Since then, I had been praying harder and talking much more to baby. I’m not afraid of C-sect but just want to experience natural birth since I had gone through C-sect the previous time.

Got most of the necessary stuff packed for baby, myself and Jonathan. This time will be having my confinement in hometown and Jonathan will be tagging along. Not too sure if I can cope with the traveling in such condition and having to take care of the baby at the same time.

* Update (one week later): Praise the Lord! Little one is very obedient. She turned!! What a relieved. So now, we just have to wait, wait and wait for signs of labour.

Left: Taken yesterday, Right: Taken one year ago.

See how much Jonathan boy has grown.  He is now well-trained to say, “Gong Xi, Gong Xi, ang pow please…” But only in front of Mommy. Shy boy it seems. Sigh….

Anyway, wishing everyone a good year ahead and safe journey for those who are traveling. Take care and don’t fall sick. Cheers!

The scan revealed 2 things.

1.  #2 gonna be a much smaller baby compare to Jonathan whose birthweight was 3.99kg.  She is about 1.6kg now (normal weight is about 2kg) and doctor estimated her birthweight to be nothing more than 3kg.  I suspected this earlier from the size of my tummy that doesn’t seems like an 7+ months preggar. I received same comments from people around me. Comparing to my previous pregnancy, it is like I’m just in my 6 months.

Told my eldest sis about it and this was what she said: “You sleep more then baby will grow. My youngest girl is the biggest among her siblings because I slept well. Sis W (my 3rd sis) got all big babies because she slept like a pig.” 

LOL! I’m not hoping for a big baby but just about the right size so that she will be much easier to care for.  Any suggestion on how to increase the little one’s weight? My doc already warned me not to overeat on CNY.

2.  Baby’s position is head up right now.  No wonder I was getting all the squirming and kicking around my lower belly.  Praying hard now that she will decide to turn down when the time comes.

Received a bouquet of 12 roses from Darling. He never fails to make me happy by wasting money.  But I never get him anything in return. Guy is always at the losing end.

Pregnant with Jonathan is a lot different from this pregnancy.  Different symptoms.  The heartburn this time round was worst. Until now, I still can’t enjoy my food because it always got stuck in my throat.  I crave for sweet stuff especially canned lychee or rambutans and sea coconut.  In my first trimester, I craved for coffee which was something I dislike. Funny eh… I think I can’t take milk because I feel awful after that.

Different in size too! The tummy this time was rounder and smaller.  My 7 months tummy looks like 6 months tummy of the previous pregnancy. Some aunties say I got a neat tummy and it is definitely a baby girl tummy.

The previous pregnancy, my feet started to swell at 6 months.  My gynae always commented on this everytime I went for my routine check. This pregnancy, although my feet has grown bigger but not swollen yet.

Similarity? ICE! I can’t live without ice. I know, I know it is not good but can you see my suffering? Another similarity is in the baby’s characteristic. This little one is as active as Jonathan. Squirming here and there, telling Mommy that she’s lively.

There is one on-going experiment. I’m taking soya bean milk (with white sugar) almost daily because Jonathan has dark complexion from dunno-who-gene.  And not forgetting bird nest…it really make the baby’s skin soft and smooth.

Aunty-Next-Door took some of this preggie shots for me during Christmas.  It was an unplanned session and so you can see I look quite messy.

Part II – Christmas celebration with my family  (click on the photo below for more photos)

Count your blessings, name them one by one,
Count your blessings, see what God hath done,
Count your blessings, name them one by one,
And it will surprise you what the Lord hath done.

Blessed New Year!

*Suppose to have posted this earlier *

Finally, our house is filled with the Christmas mood. The Christmas tree has been set up with the theme for this year…GOLD!  

I have additional helper this year in helping me to decorate the ornaments. 

But he is still too short so can just look from down while Daddy put up the highlight of the tree…the STAR! 

Jonathan boy would exclaimed, “Mimi…see! Kismah tee (Christmas tree)!”  And when we on the Christmas tree lights, he is facinated, “See…Light!”

Look! These presents are waiting to be unwraped by its owner!!

And my boy can’t wait to open his present from Daddy & Mommy.  He wants to take it down himself and place it under the Christmas tree.

Some thing new this year as we put up a wreath which I decorated it myself. 

And I learned from Crafty-Crafted the foam Christmas Tree ornament which Darling decided to hang it on the door.

This little boy is a great helper to Daddy too. He enjoyed being carried up high to hang those foam Christmas tree.

Lastly…wishing all of you a Blessed Christmas with your loved ones.

The same prayer for our little one that is somersaulting gracefully in my tummy now.

* * * * * * * * * * * * * * * *

Dear Lord,

Thank you for the blessing of a new life that comes out of our love union.

We ask you to bless and protect our baby, to fill it with your love, your peace and your joy
– to surround this little baby with the warmth of your love.

We ask you to help it grow and develop into the beautiful child you want it to be. And pray that our baby be filled with as much of the life and spirit of God as his little being can receive.

We pray that God’s love and our love pour into this little baby, so that our baby will feel welcome and at home in this world.

Thank you for this baby and for blessing us and entrusting us with this new life. Teach and guide us in taking good care of this little being in my womb.

 We consecrated our baby to God while he is still in the womb; we asked God the Father to accept him as Your children and to protect him from harm.

In Jesus Christ most precious name we pray, AMEN.

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