Samantha's Diary

Mommy’s dearest Samantha,

You may notice mommy no longer called you baby Samantha. That is because mommy had given birth to a baby boy on 25 October 2012. Yes, you are now a big sister and Jonathan kor kor is still a big brother.

Unfortunately, happiness could not stay with us for long. Your baby brother, Jeremy gone to be with Jesus on 1 November 2012. Unlike you, he could only stay with daddy and mommy for 7 days.

Although he was born little because of the prematurity, he was a strong boy. He had a good chance to survive until the doctor broke the deadly news to us. Baby Jeremy was diagnosed with mitochondrial disease. His DNA result shows the same mutation as what you had. Daddy and mommy’s heart broke as we receive the news. Although we are prepared for this to happen, on the other hand we had been praying to God throughout the pregnancy that this won’t happen. Indeed God has His own plan which is greater and better for us.

Everything seems hopeless. We continue praying to God that if it is God’s willing, please perform a miracle. But if baby Jeremy is going to suffer, we rather God take him to heaven so that he will be free from all sufferings. God choose to take him away from us. We do not know why but we still need to submit to His will.

I suppose by now, you would have seen him dancing happily in heaven above. Please help daddy and mommy to take good care of him. Mommy is so sorry that such tragedy happen again. Tell him that daddy, mommy and Jonathan kor kor love him and he will be close to our hearts just like where you are in our hearts now.

Till we meet in heaven…

We know many of you out there are constantly praying for Samantha. We appreciate that and may God bless you. Please continue to pray for Samantha that she may be able to pull through this time and get well eventually.

We admitted her to GHKL yesterday after noticing her breathing rapidly and lethargic. She was not her usual self and she looks weaker and not responding much. Her condition is not getting much better today. Her blood test results shows that she is worsening. Clinically, she’s not doing well too.

1. Pray that God will continue to strengthen Samantha to keep her going on.
2. Pray that God will provide wisdom to doctors treating Samantha
3. Pray that God will guide both Julie and myself (Kimmy) to make the right decisions for her.

God, we rest Samantha on your care. Your will be done. Amen.

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?

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.

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.

These 2 days, Samantha has been vomiting and shows signs of fatigue.

She would at times woke up from sleep and vomit. At times several minutes after feeding. We’ve contacted the doctor for advice and he informed that there were no UTI as per my previous update, but the white blood cells has shown abnormal counts. We’re to bring Samantha back to hospital on Monday for him to check and get some antibiotics. Gosh.. Additional medicine again.