Min Min Jie Jie Turns 5!!! 8 Dec 2009

Your Jie Jie with her beloved present. The one which she did not open for for 2 months!

This is you, Go Go, yesterday night. Your eyes were wide open when Daddy and Mommy spoke to you.

A picture of your little twin sister, Ni Ni to cheer you on!! Ni Ni says, " Gor Gor, we are waiting for you to come home!!"

Presents for each of you from your "Gu Gu" from Taipei, see how blessed we are.

Mommy's dearest Go Go,

Today is yet another special day, we have lots of special days these few weeks :) Your Jie Jie turns 5 today!!

Jie Jie was very excited when she woke up this morning because there was this Barbie doll present which mommy bought for her about 2months ago and it was all wrapped up.. Jie Jie being the good girl she is has resisted opening it for 2 months and was very happy when she could finally open it up :)

Time seems to have flown by so quickly, sometimes mommy hopes that time will freeze or slow down a little for me to catch up more with your Jie Jie. Here's a picture of your Jie Jie with her present, look at how happy she is!

It is mommy's wish that one day the 3 of you will be playing happily at home - together.

Prayers for today:

- God please bless Min Min, Ni Ni and Go Go with good health

- God please bless their grandparents and aunties and other extended families with good health

- God please help Go Go digest his tube feedings well as Dr have increased his feeds to 15ml every 3hourly. Please let the aspirates level remain low.

- God, please help Go Go's muscles strengthen such that he can slowly breathe better and be off the ventilator and move to either CPAP or BIPAP

- God, please help Go Go's muscles strengthen such that he can swallow on his on.

PS - when mommy and daddy visited you last night, your eyes were wide open and you appear much more energetic. Keep it up my little one!

Some information about tube feeding:

http://depts.washington.edu/growing/Nourish/Tubetech.htm#Administration%20of%20Tube%20Feeding:%20Bolus%20and%20Continuous%20Drip

Nicholas's Baptism

Nicholas dearest,

Today is a very important and meaningful day. You received the sacrament of baptism and is now freed from the power of darkness (original sin) and brought into the realm of the freedom of the children of God, to which all men are called....

Fr John-Paul came to the hospital for the baptism. Your Gong Gong and Xiao-Yi came to witness this special occasion and unfortunately your Er-Yi is tied down with work, she sends her love and said she will visit you tonight. Your PoPo can't be there too because she's helping to take care of Ni Ni. Your Jie Jie is away at a specially sponsored camp.

Your Xiao-Yi is your god-mother officially - now rests an important task on her shoulders :)

Mommy's heart was warmed that your Daddy was there and readily participated in the baptism as a parent. Daddy will be back to work tomorrow and mommy needs to be strong when I am left along to visit you .... For you, for Ni Ni and Jie Jie, mommy will be strong, because you are even stronger than mommy. Since you have to go through all these pain, how can mommy display any weakness? We will walk this path together....

Just as we left the hospital around lunch time, the nurses said your tube feeding will be increased to 10ml every 3 hourly. We are praying that you can digest the feed well with no aspirates. Stride on Go Go!!!

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Peter explained what happens at baptism when he said, "Repent, and be baptized every one of you in the name of Jesus Christ for the forgiveness of your sins; and you shall receive the gift of the Holy Spirit" (Acts 2:38). But he did not restrict this teaching to adults. He added, "For the promise is to you and to your children and to all that are far off, every one whom the Lord our God calls to him" (2:39). We also read: "Rise and be baptized, and wash away your sins, calling on his name" (Acts 22:16). These commands are universal, not restricted to adults. Further, these commands make clear the necessary connection between baptism and salvation, a connection explicitly stated in 1 Peter 3:21: "Baptism . . . now saves you, not as a removal of dirt from the body but as an appeal to God for a clear conscience, through the resurrection of Jesus Christ."

"Now they were bringing even infants to him that he might touch them; and when the disciples saw it, they rebuked them. But Jesus called them to him, saying, ‘Let the children come to me, and do not hinder them; for to such belongs the kingdom of God’" (Luke 18:15–16).

Tube Feeding

Your Gong Gong, Er-Yi and Xiao-Yi giving you support! Your Gong Gong and Po Po are there almost everyday....

Your Daddy talking to you...

Little Warrior back on the ventilator. Take your time darling, one day you will be off the ventilator.

Go Go Darling,

Today, the nurses started tube feeding you with 5ml formula @10am. Mommy and Daddy rushed down @130pm to give you some of mommy's milk for the next few feeds. We are all praying that you will tolerate the tube feeding well this time.

For the 10am and 130pm feed, your aspirates were good the nurses say. Pray that the next few feeds will continue this way.

You opened your eyes when daddy and mommy visted you today. Daddy read a book about breathing to you while mommy massaged you. You enjoyed daddy's reading very much and daddy made a pact that he will read to you everyday. You are daddy's boy :)

Your great-grand ma, grand uncle and grand aunt-inlaw visited you today as well. Great grand ma was very happy to see that you were moving your shoulders and opening your eyes. That made her very happy and she's all ready to visit Hai nan island on 9 Dec, Wed.

Go Go, mommy wants you to know that you and our whole family are so so blessed because we have an extended family who cares so much about us. We also have good friends who really cares alot about us. Tong Hong auntie, Irene auntie, your Nai Nai, etc etc etc .... God really blesses us in many ways....

On our way to SGH today, mommy say alot of beautiful trees lining the entrance to SGH block 5 and mommy pray that one day, we can bring you out of the NICU and let you enjoy the beautiful trees and birds, which God has created. Praise God!

Mommy received a reply from Dr H, recommended from Aunties Lily and Tong Hong. He recommended some massage for you which mommy is going to try immediately later on. Wait for mommy before you sleep for tonight!

PS - your weight has increased to 2.160kg! :)

Prayers for today:

- that you will tolerate the tube feeding well;

- that your breathing will improve and that you can move off the ventilator very soon

- your chest wall & swallowing muscles will improve

- that the genetic testing results will be negative

- your overall muscle will improve

I love you so much my darling.

Breathing

Dear Nicholas,

Nicholas on CPAP today, mommy's brave warrior, it lasted from 11am to 4pm.

The doctors took off your ventilator today @11am & put you on CPAP which allows you to breathe on your own while still having the neccessary air flow. Mommy was very hopeful, wishing & praying that your breathing will improve. In the doctors words, you were extubated.

However, at 4pm, blood tests showed that you have retained too much carbon dioxide and they will have to put u back on the ventilator. Mommy was naturally very sad .... well as the nurses and doctros say, you may have a chance again.... yes .... let's pray for that.

In the meantime, mommy is praying for your chest walls muscles to become stronger so you can start breathing without the ventilator which goes all the way into lungs via your mouth or nose & where oxygen is pumped to you. With the ventilator, the chances of respitary infections are very high ....

God please strengthen Nicholas's chest wall muscles and lungs. Nicholas's mucus and saliva being removed from his mouth because he is not swallowing well.
Dr also updated that the prelim muscle biopsy results are out and it is pointing to be either SMA, myopathy or myotonia.... mommy's world seems to be crumpling over n over again.... but I am still praying that the doctors diagnoses are wrong! Please....

I occurred to me that god is using you little Nicholas to teach mommy alot of survival and also strength. You are so tiny n fragile, but with a strong fighting spirit. Fight on my little warrior!!! mommy is with you...

Daddy, Mommy, and Nicholas

It pains mommy to see all this needles and tubes in your little body. My little fighter.

MRI Scan

Shi Kang's name card

Care Bear speaker from your Ah-Yis, Gong Gong and your Jie Jie Min. Your Gong Gong has lovingly been providing you with different MP3 music every single day.

Shi Kang after the MRI scan.

Mommy finally gets to change your diapers for you. This was the highlight of the day for me. I pray and know that I will get to carry you and bring you home one day.

Shi Kang Dearest,

Today you went for the MRI scan of your brain and neck. This is to determine if there's any abnormity in those areas... doctors have advised that the risk in this procedure is an allergic reaction to the dye which will be injected into your body.

You were sedated for this procedure and after yesterday's episode on the muscle biopsy, mommy chose not to be there for the MRI. The doctors and nurses assured that they will take good care of you. Forgive mommy for not being there with you for the MRI scan.

You did not open your eyes today because you were very sleepy due to the sedation. Thank God that the MRI procedure went well.

Updates for today:

- your weight went up from 2.110kg to 2.115kg

- your jaundice level has gone down from 141 to 116 and you are no longer under the photo light

- you are still on the long line drip and have not started feeds since your stomach is still bloated and the aspirates shows high level of saliva and some dirt.

- the physitherapist has started physio on your chest to strengthen your chest muscles

Prayers for today:

- you will be able to breath on your own soon

- fight off any infections

- you will be able to restart on tube feeding soon

- your muscles will become stronger

- God's mercy to be on you.

Day 10

I shall start blogging from Day 10 since I may not find time to back track.

This morning Go Go was sent for the MRI tests. He being our strong little fighter, he tolerated the test very well. When we visited him after the MRI, he was sleeping soundly for the whole afternoon, an effect from the sedation which was given.

He is still on the ventilator to help him breathe, and is still on the drip for nutrition. His tummy is still swollen and the "aspirit" from his tummy still showed signs of "dirt" according to the doctors.

My strong fighter has a name now: Nicholas Chang Shi Kang. :) We have finally decided on a name for him. Nicholas - people of victory. We pray that Go Go will fight against this disease and be a strong fighter. Shi Kang - we pray for good health for our little prince.

I saw a note on the desk which indicated that the clinical diagnosis is Spinal Muscular Atrophy. The last few days has been hell for me and my whole family. I am torn between Go Go and Ni Ni and of course Min Min.

I ask myself alot of questions:
- why would God allow this pregnancy for someone who has such difficulty in getting pregnant?
- Why would God help tide us thorough this difficult pregnancy, only to allow us to find out about this disease after Go Go's birth?
- why why why??????? there are lots of whys ...... which I may never have the answer to.

I am secretly so afraid of losing Go Go anytime since the killer for SMA is usually respiratory related problems .... I do not want to have any negative thoughts, but they just keep coming. Are they from the devil? God please have mercy on this poor child...

What if our family never gets the chance to be together?? God please send all these negative thoughts away!

We have requested for Father John-Paul from St Marys to baptise Go Go next Monday 7-Dec.

Today we bounced off the idea of stem cell replacement to the doctors and they did not seem very supportive .... I need to find more information on this.

Muscle Biopsy

Dearest Sweet Heart Go Go,

Today's is probably one of the hardest day of mommy's life. Unexpectedly we were told around 230pm that you were to go through the muscle biopsy at 3pm. Due to a miscommunication between the hospital and your daddy, we did not know that the procedure was arranged to be @3pm and mommy was not prepared to let you go through this invasive procedure where a cut will be made on your thigh and some muscle removed for analysis.

The pediatric surgeon was from KKH and the muscle tissue will be sent to TTSH for analysis. Mommy knew that this was one the tests which may be required, but for me, it was something to be done at a later stage and probably not now, hence I was heart broken when told that we should still proceed with this test since it will complement the genetic testing results. Daddy wanted the tests to run concurrently so we do not waste time.

As they prepared the room for the procedure, mommy said prayers with you and I pray that the pain will not be too bad for you my poor child because you have not been able to cry to show your displeasure, uncomfort or pain, mommy was very worried about you post-op. The anesthetist was an unfriendly tomboy who insisted that a local GA is sufficient and ignored the fact that you were a special baby who couldn't cry. The other doctors assured mommy that you will be monitored closely based on your heart rate and breathing to ensure that you are not in much pain post-op.

The doctors hope to use the results of the muscle biopsy to rule out the following conditions:
- myopathy (muscle problem)
- to confirm if it's indeed SMA (there will be degenerative muscle fibres)
- myotonic dystrophy

The dept of neuroscience in TTSH will analyse your muscle, the neurons and fibres.

Prayer for today:
- that you will go through the procedure with no pain and discomfort
- that you will have no pain and discomfort post procedure
- you will recover very soon
- you will start to move more parts of your body
- you will breath on your own
- you will restart your tube feeding

Go Go, here is a picture of your Jie Jie Min and Mei Mei Ni Ni to cheer you on!! Get well soon, they are waiting for you at home!