August 24, 2010 - Posted by Julie - 19 Comments
Let this be the first good post of Samantha.
She is now 5 months old based on her age. Physically she is like a 2 months old baby except that she is still quite floppy and unable to support her head yet. Still wearing newborn sized diaper and clothing.
It has been a month since Samantha was discharged from GHKL. She is tolerating milk via the feeding tube as mentioned in my earlier post. I resumed breastfeeding so that my breast won’t be an alien to her and also to keep my BM supply going which has been decreasing. We also offer her water through bottle to stimulate her sucking reflex and in case she is able to go back to bottle feed again. Her doctor disallow us to BF and bottle feed her as afraid that she may get choke but so far she has been taking it well. (Shhh…can’t let the doc know).
She gained some weight from 3.3kg to 3.65kg within a month. Not much but this is consider a good progress despite her condition. It will be a long way for her to catch up with babies of her age. She looks chubbier now. She can sleep better and for longer hours too nowadays. On and off, she still whine and cry unconsolably which could be due to colic, reflux or soiled diaper.
Talking about soiled diaper, Samantha is really a princess! She wants to be changed IMMEDIATELY once her diaper has soiled else she will not stop crying. Sometimes, she just want you to check on her diaper eventhough the diaper is not soiled.
Her big brother Jonathan adores her so much. He likes to kiss her, smell her, carry her, hold her hand and sleep beside her. He will take her hand to caress his face. And recently, I have no idea why he feels like biting her fist…love bite? 
August 10, 2010 - Posted by Julie - 13 Comments
I am getting frustrated with my work and working in such a company, dealing with such annoying people. I will just deal with as much as my plate can hold. Most of my colleagues are facing the same. When it comes to this stage, you know how serious is the health of the department. This is everywhere, I know but enough for me after 5 years here.
Something just pissed me off this morning and I’m feeling like throwing darts at them.
And that makes me ponder…
“Should I wait for my bonus in November and forgo the opportunity that comes? So what if I wait for my bonus but the consequence is having to suffer still in this miserable place?”
July 22, 2010 - Posted by Julie - 6 Comments
My silky hair is falling down, falling down, falling down,
My silky hair is falling down,
Oh, my precious hair.
Same thing happened when I was with Jonathan. It started in the third month until more than the sixth months. It was very bad until you can see my scalp. Everytime when I went to the hairdresser, she will make her comment and start recommending me syampoo and hair tonic. I thought probably Jonathan had taken up all the nutrients in my body as I was breastfeeding. So I went to the pharmacy to enquire for supplements and they recommended me to take Zinc. I can’t remember if it helps.
Now, with Samantha, I’m losing my hair again. At the end of the day in the office, I can see hairs on my chair. Hairs all over my dressing table and on the floor. Even scarrier whenever I shampooed my hair.
Any remedies or supplements to prevent hair fall due to post-natal hormonal change?
July 18, 2010 - Posted by Julie - 16 Comments
Samantha is back home from hospital last Thursday after her readmission for 16 days. We hope the hospital won’t be our second home. It’s quite scary in the hospital as you would see all kinds of patients with some having metabolic disorder like Samantha. The first thing that came to mind is will Samantha be like them? If you know the prognosis of her medical condition, you’ll have the same fear as we do.
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.
July 11, 2010 - Posted by Kimmy - 12 Comments
All praises and glory be to God.
Today is the 13th day Samantha stays in the hospital. Her conditions are getting better with her urge to vomit stopped. The urge gradually lessen after blood transfusion were done on Wednesday and Thursday last week. This apparently helped to further reduce her lactate acid from 17 mmol/L to 10.1 mmol/L. That is great news for now.
She will still feel pain in the stomach and discomfort from time to time due to the acid level and air in the stomach. Sam is also very clever girl. Even if the medicine is fed via the feeding tube, she can still “feel” the medicine taste and would try to cough/vomit it out. Hopefully she will get over with it and take it willingly.
Doctor is now monitoring her progress and is expecting to discharge her by end of this week.
Julie and I are doing well. We’re blessed with Julie’s mom who is helping to take care during the day while we are at work.
Thanks to all of you for your concerns and prayers.
God is listening and answering our prayers. May all praises and glory be to our God.
July 2, 2010 - Posted by Kimmy - 14 Comments
Samantha has been continuously having constant vomiting even after the last admission. For the past few days, we saw that she became lethargic with sunken eyes. She don’t even cry for feeds anymore, only cry when uncomfortable. She has very mild absorption of food that we feed her, even with breast milk.
On Tuesday, we made the choice to admit her again to hospital. This time, we’ve admitted her to KL General Hospital. She was immediately put on tube feeding and oxygen gas. 10ml on every feed with 5ml of water through the tube.
Doctors there are trained for metabolic disorder patients. Samantha will be reassessed again on her symptoms.
Her lactate acid is now at 17 mmol/L (normal human is 2 mmol/L).
On Wednesday, her feeding is controlled by a profuser machine which will evenly feed her 30ml of milk over a period of 3 hours. She stills vomits but hardly could notice milk stain now. She has also gained some weight from 2.9kg on admission to 3.15kg this morning.
Doctor is suggesting that Samantha to continue using the profuser until she gain enough weight.
Get well soon Samantha.
June 14, 2010 - Posted by Julie - 16 Comments
After spending 6 days in NICU, finally Samantha got the green light from the doctor to be discharged last Saturday. She looks chubby and rosier upon discharged because of the IV drips. Hope she continues to be chubby and have rosy cheeks like Mommy. Not only she managed to gain back the weight she lost but it increases a little to. She is now 3.2kg. She was 2.97kg upon admission.
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.
June 8, 2010 - Posted by Julie - 14 Comments
Since my last post about Samantha’s vomiting spell, her condition worsen where typically no food can stay in her stomach. She got thinner and lethargic. We brought her for a review yesterday and was prepared to get her admitted. Good thing she vomited in front of the pediatrician and he could see how forceful is her vomiting. He straight away advise her to be admitted and to put on drips as she was also dehydrated. Once she is on drips, she looks better. Her skin colour improves and she doesn’t look so lethargic anymore.
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.
June 4, 2010 - Posted by Julie - 13 Comments
Since last Thursday night, Samantha has been vomiting almost after each feeding. It normally happens 30 mins – 1 hour after feed. It is not normal spitting of milk but forceful vomit. We afraid it may be Pyloric Stenosis as what Jonathan had when he was 3 weeks old. On Monday, we brought Samantha to the paediatrician and he did an ultrasound. The result came back negative for Pyloric Stenosis. If then, what could be wrong with her?
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.
May 24, 2010 - Posted by Julie - 8 Comments
My 2.5 years old boy is growing up! I am unable to catch up. Do you know what I mean?
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”.
