Saturday, February 27, 2010

27 Feb 10

27 Feb 10


Charlene was difficult today. She refused to sleep unless she was put in prone position in the cot, or carried in the koala bear method (refer to last post). She kept moving and making small cries, and eventually escalate to louder cries, until we carried her.

We think that this is both bad news and good news. The bad news is that we probably will have a hard time at home, because babies are not supposed to be sleeping in prone position without the monitoring device. The good news is that Charlene has (once again) showed her preference and her cognitive ability to learn that crying will get what she wants.

Lord, though we are uncertain whether we can take care of Charlene at home, we will cast all our anxiety on You, as You will definitely make a way for us. We pray that You bless us with the strength to take care of Charlene.

Oh, and she has reached 3.76kg today! Slowly but steadily increasing weight... Praise the Lord for the continued progress we have seen in Charlene! 

Thursday, February 25, 2010

25 Feb 10

25 Feb 10


I tried carrying Charlene in the Kangaroo care position (vertical position, with baby's head lying on the chest). She enjoyed it very much and dozed off quickly. I think I saw Charlene gave me a smile when I carried her. Was very happy and asked her to smile to daddy later.

And true enough, Dez told me that he saw Charlene smiled at him 4 or 5 times when she was awake. He wasn't sure whether it was a full smile, but definitely more than her usual half-smile; so he called it a 3/4 smile =P

Both of us are certain that Charlene's smile has improved. Previously, she only smiled in her sleep, and have never smiled while awake. But today, she did that to both her mummy and daddy.

Praise the Lord for answering our(and friends') prayers! We will await the day when Charlene will give us a marvelous wide grin!

Saturday, February 20, 2010

19 - 20 Feb 10

19 - 20 Feb 10

A day after they add the medication (Valproate). the doctors team told us that there's no real need to monitor Charlene's condition. She is considered as stable enough to be discharged from the hospital, but asked us to be prepared that we probably will still be seeing the super-frown episodes.

We were caught off-guard by the hospital sudden pronouncement that Charlene can be discharge. We have thought that it will take weeks for the hospital to test out the efficacy of the new drug. But apparently, this is not the case now.

Though we would like to take Charlene home immediately, there are still practical issues yet to be resolved. 1st, we will need to learn all the skills from the home-care team.2nd, we will need to sort out the logistics. 3rd, we will need to plan out the manpower shift system. Though we are not certain whether we can take care of Charlene ourselves now, we pray to God that He grant us the strength, faith and wisdom to do so.

The frequency of Charlene's super-frown remains the same after the addition of Valproate. On 20 Feb, she have 5 episodes within a 12-hour period. There is no apparent pattern. Regardless, as the doctors have said, there is no additional value in keeping Charlene in the hospital. Besides the super-frowns, her vital signs are all stable. And most importantly, Charlene no longer have any acute life threatening event after the ops; Praise the Lord for keeping Charlene safe!

Lord, the doctors have done all that they could, but it is too complicated for current medical science. But Lord, You are the Creator of heaven and earth and everything is within Your control. Nothing can stop the complete healing of Charlene, if it is in Your plan. Lord, we wait patiently for the day that Charlene be heal by Your touch, and we can proclaim to our family and friends that the miracle is by Your grace.

Videos of Charlene

Some video links of Charlene

Charlene precious smiles

Charlene learning how to turn

Thursday, February 18, 2010

18 Feb 10

18 Feb 10


The neurologist wanted to speak to me and Dez urgently. So Dez had to take half day leave to rush down to the hospital in the afternoon.

The neurologist explained the reasons why the team think that Charlene super-frowns are indicative of seizures.
To recap, the sequence of events of Charlene's super-frown are:-
1) Turn her head from 1 side to the other
2) Let out a loud cry (may or may not happen)
3) Strain her face so much that it become convoluted
4) Plunge in heart rate (bradycardia), with NO drop in oxygen and respiration
5) Gasp for breath
6) Arch her back
7) Trembling or myoclonic/clonic movements (may or may not happen)
8) Flail her limps (may or may not happen)

Basically,  the neuro team now think that the super-frowns are seizures, primarily because of Pt 7 (which is more pronounced recently). He also sees Pt 1 and 2 as classical symptoms of neonatal seizures. He is unable to explain Pt 4, but thinks that even though there's no drop in oxygen, it is still damaging to Charlene's brain.

This was a change in their last month diagnosis (which the team felt that the super-frowns were due to acid reflux, similiar to the Sandifer Syndrome).

The neurologist is recommending us to add a new anti-convulsant to try to control the seizures.


We do not think that Charlene's super-frowns are seizures. We still think that it is due to acid reflux. But to be fair to the team, Charlene's trembling is more pronounced now.

Initially, Dez suggested that we can "starve" Charlene of milk to see whether the super-frowns go away; if the super-frowns are due to acid reflux, then it should go away when she is not consuming milk. But we decided against it, because the doctors are not keen on starving a baby of milk.

We will probably go ahead with the recommendation for the new medication. If it is not seizures, at least the doctors will be proven wrong. If it is seizures, then at least we are trying to control its impact.

Friends, please pray that Charlene is protected from the super-frowns and/or seizures, and that these episodes will be removed from her life totally. Please pray that the doctors have the wisdom to diagnose the condition correctly. Please pray that Charlene can be declared fit enough to be discharge soon. Finally, please pray that Charlene will learn how to smile at people soon, bec the neurologist deem it as a significant developmental milestone.

Tuesday, February 16, 2010

16 Feb 10

16 Feb 10


Once again I made Charlene touch the different parts of the cloth book. I also placed the cloth book in front of her and made her touch it. Afterwhich she kept touching it and when I took it away, she let out a cry indicating that she wanted it. We thank God that Charlene is indicating her needs and preferences through different cries.

When Dez carried her, she looked intently at the liverpool crest (cos it's red) on his jersey and swung her arm (seems like she wants to touch it).

Monday, February 15, 2010

15 Feb 10

15 Feb 10


I started to stimulate Charlene through touch. I made her touch the different parts of the cloth book which is of different texture. She had the "What's this" look on her face. I also made her touch her head, her hair and her lips.

When I was playing with her halfway, Sister called me out to clarify something. Dez said that Charlene cry soon after I stepped out of the room, which means that she was probably irritated that I left.

Some of our friends got to know about Charlene's condition through other friends who knew earlier. If you are reading this, thank you for the concern.

14 Feb 10

The 1st day of Lunar New Year. I was spared from visiting bec of the need to express milk. Hence, was able to go for YMM service. Dez couldn't go for morning service, so he went for the evening one at Baker Road Methodist Church. Both of us are glad that we were able to participate in the service, without causing any anguish for his parents.

We put on new clothes for Charlene today. The 1st piece of new clothing (besides hospital clothing) she has ever worn!

Next time we should buy red colour clothes, cos she seems to respond to the colour red.


Saturday, February 13, 2010

13 Feb 10


13 Feb 10

Throughout our stay, Charlene keep showing her displeasure (through soft cries) when the pacifier was not given to her or when the diaper is wet. She keeps sucking on the pacifier, which is a good sign, as the Sister noted that her sucking coordination has improved.

Even though Charlene was tired, she just didn’t want to sleep. I decided that I should leave the room to left Charlene sleep. True enough, the nurse said that she dozed off after I left the room.

It’s so good for us that Charlene is expressing her needs through cries, and that she’s aware of our presence and sleep when we leave the room.  Praise God for this display of Charlene learning ability!

Friday, February 12, 2010

12 Feb 10


12 Feb 10

Praise the Lord! Charlene has been sent to SCN, indicating that the doctors think that her condition is stable enough.  The EEG yesterday showed abnormal brain activity (as expected, as her prior EEG shows the similar pattern), but no significant seizure activities Hence, the doctors plan to reduce the dosage of Kappa by 10% and there’s no plan to add another medication.

Thursday, February 11, 2010

11 Feb 10


11 Feb 10

No bradycardia from yesterday 230pm till we left hospital today at 845pm. Charlene was comfortable and slept quietly. Praise God! I believe He has healed Charlene.

Wednesday, February 10, 2010

10 Feb 10


10 Feb 10

The docs did an EEG on Charlene today. She was very uncomfortable and obviously irritated. After the EEG, she cried continuously from 430 – 820 pm. The sister noticed that when Charlene cried continuously, there was no episodes of bradycardia.

Dez tried to pacify Charlene by performing his merry-go-round cradle. It worked to a certain extent as Charlene would stop crying for a while.

Tuesday, February 9, 2010

9 Feb 10


9 Feb 10

Dez saw Charlene almost going into super-frown several times (she had this particular face before she goes into super-frown). But she was able to control it for 4 times. Praise God, for this shows that Charlene is learning how to control her super-frown!

Monday, February 8, 2010

8 Feb 10


8 Feb 10

I have left a question note for the neurologist. He called me on my way to KKH. He still thinks that the bradycardia is indicative of seizures, because of the whole body trembling.

I’m not very happy with the explanation. It was not as if in previous months, Charlene did not have any trembling. Last month, we were worried that its seizures and kept asking the Jan doctor team. They kept emphasizing that seizures would be accompanied by drop in oxygen level (which does not happen for Charlene). They tried hard to convince us its due to GERD, and all of a sudden, this new team said its seizures.

And we do not understand the hospital plans. 1st they cut the feeding down, and now they are planning to increase the seizure medication. If the bradycardia situation improves, what do we attribute the cause to? The doctor wasn’t able to answer.

Charlene is more alert today. Maybe bec the physio came.

Dez did some exercises for Charlene, stretch her hands and legs and train her neck muscles. We also did some (simple) experiment to see whether Charlene was looking at the card (big red heart) which physio left behind. It seems to be so, because Charlene kept trying to touch the card. And Charlene is trying to turn again. Praise God, for we can see Charlene’s capacity to learn!


Saturday, February 6, 2010

6 Feb 10


6 Feb 10

The hospital has cut Charlene milk amount by 5ml to 35ml. That has helped to reduce the super-frown frequency to 1 episode in the afternoon.

We are also happy that Charlene showed signs of preference. Whenever her diapers are wet, she will make noise. Another interesting episode was when the nurses switched on the light, she kept crying with her eyes closed. The nurse (Pauline) said that Charlene is upset that she cannot see. True enough, when the lights were closed, Charlene stopped crying immediately and opened her eyes to look around. Praise the Lord for this demonstration of Charlene’s cognitive ability!

We also got 1 nurse to shave Charlene’s hair. This will help her to grow more hair, and covered the bald patches (from previous shaving for drip line). She was very cooperative and didn’t complain. After the shave, all the nurses commented that Charlene is very cute!

While we were praying for Charlene, God prompted me to open my eyes, and I saw Charlene smiled in her sleep. It was encouraging for me, because she hasn’t smile for a long time.

Friday, February 5, 2010

5 Feb 10


5 Feb 10
Charlene had 9 episodes of bradycardia last night.  The new team of doctors are concerned that they decided to increase her Kappa medication, as a pre-caution. I hijacked Dr Gomez (Jan team leader). He actually apologized to me that the bradycardia (super-frown) has not dissipated after the ops. What a humble senior consultant. But he reiterated that he believes its still caused by GERD, because after the ops, Charlene had zero bradycardia during fasting.  He also said that Charlene’s case has been sent to a doctor friend in Harvard, to see what inputs he can offer.

Lord, we prayed that you blessed Charlene with your healing hands and take away her GERD and bradycardia. Though we do not understand your reasons, we believe You and trust in Your deliverance.

Thursday, February 4, 2010

4 Feb 10


4 Feb 10
The doctors gave Charlene 25mcg (a very small amount) of morphine to calm Charlene down. It worked and Charlene managed to get rest. Thank God for this!

However, we were concerned that Charlene was totally knocked out. We are unsure whether we prefer Charlene to be alert (but crying) or calm (but sleeping).

Wednesday, February 3, 2010

3 Feb 10


3 Feb 10
Charlene was crying non-stop throughout last night and today.  She was inconsolable and we are worried about the lack of sleep. When Dez reached, he was able to pacify her by cradling and rocking her and she felt asleep for 30mins.  The nurses were quite impressed bec that was the longest period she had slept for more than 20hrs.

Tuesday, February 2, 2010

2 Feb 10


2 Feb 10
Charlene was crying while the nurse fed her milk. Her irritation is probably cos of the reflux. Somehow the 1st thought that came to my mind is that Charlene has learnt to deal with the reflux by crying. I hoped that’s the case because it would mean that she would no longer exhibit super-frown and would be closer to discharge.

However, she continued to cry loudly throughout the late afternoon. She only stopped crying when she was given the pacifier (only works at times) and when she was carried up and patting her back hard.

Dez and I wondered why there’s such a sudden change in Charlene’s behaviour. Even the nurse said that Charlene has changed, after her 6 day off, she found that the quiet Charlene has changed to a crybaby.

Charlene has no super-frowns today.   

Monday, February 1, 2010

1 Feb 10


1 Feb 10
Charlene was peacefully sleeping when I reached. Her arterial line was taken off and she slept more today. Morphine was taken off today.