Dearest Nicholas,
Of late, mommy and daddy has been spending a lot more time with you in CICU and HD. The word "suffering" has been flashing across mommy's mind these days, especially when I see how much you are suffering during suctioning and the pain of having the trac-key stuck in your throat. It pains mommy so much whenever I see tears rolling down your eyes during suctioning and whenever you gag when we suction your trac-key.
I searched on the internet to get a deeper understanding on suffering and this is what I found:
http://bible.org/seriespage/doctrine-suffering
http://www.viewonbuddhism.org/4_noble_truths.html
Darling Nicholas, at this moment, I wish that if God wants to teach mommy something, it is not through your suffering ....
Wednesday, February 24, 2010
Thursday, January 28, 2010
Thursday, January 21, 2010
Goodbye SGH
Dearest Nicholas,
21-Jan-2010 marks a new beginning for us because you are saying goodbye to all the nurses and doctors in SGH and transfering to KKH. After being in SGH for what felt like forever (between end of Nov 09 to end Jan 2010), we have unknowingly developed a special kind of feelings for the hospital and the people who has walked this path with us.
The team from KKH arrived just after 9am and mommy was at the hospital by 830am to pack up for you. Nurse Fazilah was there to care for you and she was the one who handed over the report to the KKH nurses. As the team from KKH started to prepare the move, the nurses and doctors from SGH bade a final goodbye to us and mommy started to feel very sad that we will be leaving this familiar place, probably forever. Mommy's wish at this point in time is that the move to KKH will be a brand new positive beginning for my little Nicholas.
Nicholas, as we begin this new journey together, know that God is with us and that our whole family and friends are behind us all the way.
21-Jan-2010 marks a new beginning for us because you are saying goodbye to all the nurses and doctors in SGH and transfering to KKH. After being in SGH for what felt like forever (between end of Nov 09 to end Jan 2010), we have unknowingly developed a special kind of feelings for the hospital and the people who has walked this path with us.
The team from KKH arrived just after 9am and mommy was at the hospital by 830am to pack up for you. Nurse Fazilah was there to care for you and she was the one who handed over the report to the KKH nurses. As the team from KKH started to prepare the move, the nurses and doctors from SGH bade a final goodbye to us and mommy started to feel very sad that we will be leaving this familiar place, probably forever. Mommy's wish at this point in time is that the move to KKH will be a brand new positive beginning for my little Nicholas.
Nicholas, as we begin this new journey together, know that God is with us and that our whole family and friends are behind us all the way.
Thursday, December 24, 2009
Happy Full Month!!!
Dearest Go Go and Ni Ni,
Yes! It has been a month since you were born, both of you are now one month old. Congratulations to the milestone, mommy is so happy for both of you. Coincidently, it is also Christmas Eve, happy 1st christmas to the both of you.
Your grandpa had originally wanted a big celebration this year, but because of Go Go's illness, we have decided to scale down on everything and have a simple family gathering.
Go Go, you are still recovering from the bout of pneumonia after being intubated again, your lungs were taking turns to collapse due to the infection where mucus plugs were blocking up your airways. You are now 2.440kg and on 50ml feeds every 3 hour. The hospital has removed your long line today. Mommy is praying for Go Go's breathing to improve and for Go Go to be able to move on to CPAP smoothly.
Ni Ni, your crying is getting louder everyday and you are drinking alot more milk these days .... it's so cute to see you putting on some weight around your cheeks. Your elder sis, Min loves to play with you and be around you so much, I think you are her new favorite toy.
Go Go, Ni Ni - mommy's wish for both of you is to grow up healthy, together. I love both of you so much.
Yes! It has been a month since you were born, both of you are now one month old. Congratulations to the milestone, mommy is so happy for both of you. Coincidently, it is also Christmas Eve, happy 1st christmas to the both of you.
Your grandpa had originally wanted a big celebration this year, but because of Go Go's illness, we have decided to scale down on everything and have a simple family gathering.
Go Go, you are still recovering from the bout of pneumonia after being intubated again, your lungs were taking turns to collapse due to the infection where mucus plugs were blocking up your airways. You are now 2.440kg and on 50ml feeds every 3 hour. The hospital has removed your long line today. Mommy is praying for Go Go's breathing to improve and for Go Go to be able to move on to CPAP smoothly.
Ni Ni, your crying is getting louder everyday and you are drinking alot more milk these days .... it's so cute to see you putting on some weight around your cheeks. Your elder sis, Min loves to play with you and be around you so much, I think you are her new favorite toy.
Go Go, Ni Ni - mommy's wish for both of you is to grow up healthy, together. I love both of you so much.
Wednesday, December 16, 2009
Lung Infection
Dearest Go Go,
At the moment as mommy is typing this letter to you, you are righting against the onslaught of a possible lung infection. This started after your CPAP episode. Your oxygen requirement has gone up to almost 80% and the oxygen saturation in your body has been hovering below 95%. Mommy knows that you are fighting very very hard with all your might against this terrible infection, fight on Go Go!!!
The doctors are covering you with 3 different anti-biotics while the blood culture results take some time to come out. A blood transfusion has also been planned for today in order to help optimize the oxygen levels in your body. Your right lungs collapsed yesterday and from today's x-ray seemed to have improved some what, however, your left lung has collapsed today. Chest physio is also pushing alot of mucus out from your lungs. Mommy is praying that you will recover from this infection very very quickly.
Dearest Go Go, one of mommy's dear friend, Auntie Bharathi came by to visit you at the hospital today. She brought along with her a pack of gift for you and Ni Ni, it's a very comfortable set of organic romper with a pair of socks. I am sure it will look perfect on you. Please recover quickly so you will get to wear this beautiful suit before you outgrow from it.
Mommy will be visiting you soon...... be brave Go GO...!!
At the moment as mommy is typing this letter to you, you are righting against the onslaught of a possible lung infection. This started after your CPAP episode. Your oxygen requirement has gone up to almost 80% and the oxygen saturation in your body has been hovering below 95%. Mommy knows that you are fighting very very hard with all your might against this terrible infection, fight on Go Go!!!
The doctors are covering you with 3 different anti-biotics while the blood culture results take some time to come out. A blood transfusion has also been planned for today in order to help optimize the oxygen levels in your body. Your right lungs collapsed yesterday and from today's x-ray seemed to have improved some what, however, your left lung has collapsed today. Chest physio is also pushing alot of mucus out from your lungs. Mommy is praying that you will recover from this infection very very quickly.
Dearest Go Go, one of mommy's dear friend, Auntie Bharathi came by to visit you at the hospital today. She brought along with her a pack of gift for you and Ni Ni, it's a very comfortable set of organic romper with a pair of socks. I am sure it will look perfect on you. Please recover quickly so you will get to wear this beautiful suit before you outgrow from it.
Mommy will be visiting you soon...... be brave Go GO...!!
Friday, December 11, 2009
Moving
Dearest Nicholas,
While performing some physio for you yesterday, mommy noticed some slight movement in your right leg yesterday and today, mommy saw slight leg movements in both your legs! Praise God! Mommy is praying that your muscle tone will improve over time....
The doctors finally relented and are giving you multi-vitamins (1ml), mommy hopes that this will prevent any infection from setting in.
As it turns out, the dr finally gave in to mommy and daddy's persistance and a PD neurologist from KKH visited you yesterday. The PD n suggested postphoning your extubation until a firm diagnosis is possible from the muscle biopsy.
Dr also updated the following today:
- The SMN1 gene testing results - turns out that it's 95% not SMA. Which is a GOOD news to us. Question is then , what is causing your muscle weakness. Dr are now saying it's myopathy, but they have no idea which sub-category.
- Muscle biopsy verbal results from the stains - most likely not SMA, but again, they cannot pin-point to any "usual" muscle disease yet. They are in touch with the neurologist.
- Myotonia testing - normal.
Prayers for today:
- infection to stay away. your immunity to stay strong.
- your feeding continue to be good with no aspiration
- your swallowing to improve
- lesser secretion in your mouth and in the breathing tube
- Most importantly, God's grace and mercy to be on you that you will be healed.
I love you so much Go Go ..... stay strong, we are all with you!!
Oh yes, mommy's friend, Auntie Lim Huey hand made 2 rosaries, one for you and one for Ni Ni and she made an extra anklet for you .... get well soon!!
While performing some physio for you yesterday, mommy noticed some slight movement in your right leg yesterday and today, mommy saw slight leg movements in both your legs! Praise God! Mommy is praying that your muscle tone will improve over time....
The doctors finally relented and are giving you multi-vitamins (1ml), mommy hopes that this will prevent any infection from setting in.
As it turns out, the dr finally gave in to mommy and daddy's persistance and a PD neurologist from KKH visited you yesterday. The PD n suggested postphoning your extubation until a firm diagnosis is possible from the muscle biopsy.
Dr also updated the following today:
- The SMN1 gene testing results - turns out that it's 95% not SMA. Which is a GOOD news to us. Question is then , what is causing your muscle weakness. Dr are now saying it's myopathy, but they have no idea which sub-category.
- Muscle biopsy verbal results from the stains - most likely not SMA, but again, they cannot pin-point to any "usual" muscle disease yet. They are in touch with the neurologist.
- Myotonia testing - normal.
Prayers for today:
- infection to stay away. your immunity to stay strong.
- your feeding continue to be good with no aspiration
- your swallowing to improve
- lesser secretion in your mouth and in the breathing tube
- Most importantly, God's grace and mercy to be on you that you will be healed.
I love you so much Go Go ..... stay strong, we are all with you!!
Oh yes, mommy's friend, Auntie Lim Huey hand made 2 rosaries, one for you and one for Ni Ni and she made an extra anklet for you .... get well soon!!
Thursday, December 10, 2009
Physiotherapy
Dearest Go Go,
Today the physiotherapist finally spoke to mommy and showed mommy how to perform some stretching exercises for your legs, feets, hands and arms in order to prevent them from getting stiff. While you were awake between 130 to 430, mommy stayed behind to perform some of these exercises for you ... I hope that you feel better after this :)
The dr are planning to remove your breathing tube tomorrow to try and see if you can breathe using the CPAP machine. They are against the use of BIPAP since they cannot find a mask to fit your size. Mommy is praying that your breathing will be good and can be sustained with the CPAP machine as having the breathing tube increases the risk of infection.
You have started on 40ml tube feeding and mommy is also praying that these are digested well, without much aspirates.
Dearest Go Go, mommy was happy that I spent so much time with you today and you were so alert looking at the ceiling, I wish I can spend more time with you. One day, when you are better, mommy will bring you home and we can spend all the time together with our whole family, wouldn't that be nice?
Stay strong my little Go Go!!
Today the physiotherapist finally spoke to mommy and showed mommy how to perform some stretching exercises for your legs, feets, hands and arms in order to prevent them from getting stiff. While you were awake between 130 to 430, mommy stayed behind to perform some of these exercises for you ... I hope that you feel better after this :)
The dr are planning to remove your breathing tube tomorrow to try and see if you can breathe using the CPAP machine. They are against the use of BIPAP since they cannot find a mask to fit your size. Mommy is praying that your breathing will be good and can be sustained with the CPAP machine as having the breathing tube increases the risk of infection.
You have started on 40ml tube feeding and mommy is also praying that these are digested well, without much aspirates.
Dearest Go Go, mommy was happy that I spent so much time with you today and you were so alert looking at the ceiling, I wish I can spend more time with you. One day, when you are better, mommy will bring you home and we can spend all the time together with our whole family, wouldn't that be nice?
Stay strong my little Go Go!!
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