Lizzie is discharged from hospital

Dear friends,

I would have posted this sooner, but we have been so busy with Lizzie since her discharge from paeds ICU on Monday 21/01/08. Instead of discharging to the normal wards, we decided that once Lizzie no longer required intensive care, we were able to nurse her at home - with the permission from our cardiologist and surgeon.

Lizzie Day 3 - still restrained

Lizzie taking solids on Day 4

Lizzie taking feeds well on Day 4

Because of the deep surgical wounds, Lizzie can't really move around very much, mainly getting carried by myself, Simon and grandma. She seems to be a bit more fearful of falling, and clings to us tightly. Stranger anxiety seems to have developed as well.
We went for post op review today with her cardiologist - all the dressings were replaced, and we saw that the op site was healing very well. Praise the Lord.

Last night when she slept, Lizzie's oxygen was between 79 and 85 most of the time.
In the day time, it seems to be in the 70s.

Lizzie at home Day4

Lizzie gives us a big grin today Day6 -in her pram at the review appointment

Giggling Lizzie watching mummy blow bubbles

We are very thankful that our little girl has started giggling and smiling lots today, and we hope and pray that she will continue to regain her confidence and her outgoing personality.

God Bless,

Elaine

Post op recovery update

Dearest friends,

Thank you for your continued prayers. The last few days have left us exhausted physically, and emotionally. Since the last posting by Simon, we've been taking shifts camping at the PICU, catching a few hours sleep at night. We thank God for preserving our health and preventing us from falling sick during this time.

Day 1 (Thursday 17 January)

We were admitted to Ward 47 in the afternoon - Lizzie had to have blood taken for tests in preparation for her op. Already her limbs are chubby, and finding a blood vessel on her was very difficult for the doctors. So for a normally straight-forward procedure of setting a plug (inserting a needle into a vein in order to set a tube in it), it took at multiple tries of inserting and reinserting needles into her arms, legs, hands and feet, until Lizzie was so traumatised, afterwards she would cry whenever a nurse or doctor came near. Unfortunately after that when we thought she could rest, one of the blood samples was lost, and Lizzie had to endure yet another round of needles pricking into her. She cried so hard and vomitted a few times, but Simon and I were there to reassure and restrain her as best as we could. We managed to get home leave that night, to return early the next day.

Lizzie is opens her eyes and sees Elmo!

Day2 *SURGERY DAY* (Friday 18 January)

5:30am the next morning I had to bathe Lizzie in the antiseptic wash given by the ward, and she kept falling asleep in the bath! We reached the hospital by 7:ooam, and immediately the doctors had to re-set a new plug. Again, as needles were repeatedly inserted and removed in the attempt to locate Lizzie's tiny veins, we were feeling so much pain for her even before her operation. Finally a vein was found, and a plug was set - the pictures Simon posted of us carrying her in the hospital playground was just moments before they wheeled her off to the operation theatre. You can see one of her feet bound up (inside is the plug)


Going into surgery

As I walked with her through the hospital corridors to the operating theatre, I prayed silently that God would protect her from all complications, and that His spirit would fill that theatre, and Lizzie would not be fearful. I was allowed to accompany her into the operating room, and she was in good spirits- playing with the docs and nurses. She was so tired that she fell asleep in my arms before they gave her the gas.




After the surgery

It was three hours later we got news that the operation was successful - in the first two hours, her surgery was delayed because no one could insert a line into her blood vessels. They finally had to take a major blood vessel at her groin - which will result in scarring, but had to be done nonetheless. Her surgeon informed us the actual operation had only taken about an hour to complete. We give thanks to the Lord for no complications, and no need for blood transfusion. AMEN! Praise the Lord!

Lizzie & Mummy

Lizzie & Daddy

Post op in the ICU

Finally we were able to see our little one in the PICU - we were suprised and happy to see that the intubation had been removed (this is normally left in a day or two longer, but Lizzie was strong enough to breathe on her own - praise the Lord!), and she was no longer sedated. It broke our hearts to see her in pain, and hear her whimpering softly, but we also rejoiced in knowledge that God had made her such a strong girl. A fighter!

Day3 *TODAY* (Saturday 19 January)

At 6:00am Lizzie's eyes were wide open, and with the only leg unrestrained managed to kick off all her blankets. The surgical team and Prof CN Lee came to see her soon after - Lizzie glared at everyone (myself and Simon included). To everyone's suprise, the chest drainage tube was quickly removed, and Lizzie was able to start drinking milk again.

Lizzie in PICU

Now as I am typing this, I am sitting by Lizzie's bedside. Occasionally one of the monitors would sound, or Lizzie would stir, and whimper and cry in her sleep. I am faced with the reality that although she has had a successful op, there is a long road of recovery ahead.
We ask that you continue to pray along with us as we cast all our cares and anxieties upon Him.

Our prayer requests:

1/ That the Lord will cause all of Lizzie's surgical wounds to heal quickly and with no complication or infection, and that they will not cause her too much pain.

2/ That Lizzie will be able to maintain good oxygen saturations and be able to come off oxygen support soon.

3/ We ask for continued good physical and mental development

4/ That God will protect her from any bad memories of this experience, and she will not be affected by this surgery, but will be back to the cheerful, bubbly, and affectionate girl that she is.

5/ That the Lord will continue to reveal to us His plan for Lizzie, and use her life and testimony for His glory.

6/ That God will continue to protect the health of Lizzie's caregivers (myself, Simon and my mum-in-law).

We would like to give thanks to our Lord and Saviour Jesus Christ for seeing Lizzie through her operation safely, and for bringing into our midst fellow believers to comfort and assure us (from Lizzie's gospelighter Aunties and Uncles, and our beloved ELIM CG family, to old friends from NNICU the Aunty-Nurse Hung Fei and Aunty-Doctor Siok Ying, to a new friend -anaesthetist Aunty-Doctor Avina). Special thank you to Soo San and Francis for your advice, prayers, and loaning us your oxygen equipment. God has brought loving brothers and sisters into our lives in every step of our journey - HE is indeed our Jehova Rapha and Jehova Jireh.


We will continue to update you when we can.
God Bless,

Elaine

Result of Lizzie's operation

Hi everyone, we just spoke to the surgeon a few minutes ago. The op is a success!!! Lizzie's current O2 saturation is above 90%!!!! Praise the Lord!!! And thank you everyone for your prayers... from the bottom of our hearts as well as Lizzie's!!!

One side comment the surgeon made was Lizzie is so chubby that they took almost 2 hours and still not able to insert a line into her blood vessel. They had to instead put a tube into a major blood vessel at her groin. Our chubby little princess :)

We thank the Lord for a smooth operation and we continue to pray for a speedy recovery free from any complications. During this period, we have also received an answered prayer and encouragements. Lizzie's fourth and fifth teeth have erupted, after a break that made even lizziemommy (who's a dentist) worried that Digeorge's Syndrome may cause Lizzie to have missing teeth. That has been one of our personal prayers for her. We have also received encouragements from friends overseas as well as some we have not been in touch with for some time. Praise God for assuring us that He is in control always and sends encouragements when we need them most.

Lizzie will be sedated for the next 1 to 2 days. For those who are thinking of sending anything to Lizzie, please don't. It already means a lot to us that you are reading this blog and praying for her.

We will continue to keep you updated!!

God bless,

Simon

Surgery postponed to 18 Jan 11.30am

Hi everyone, Elaine and I sincerely thank you for the many prayers and encouragements since our posting. As much as it pains us to submit our child to God’s will in her life, we know that His grace will see Lizzie through the most difficult and painful moments of her life (as well as ours) and His peace will be with our family as we go through this period.

We also want to inform you that the surgeon rescheduled the operation last week to 17 Jan PM and then again today to 11.30am on 18 January. Please continue to pray and also that there will be no more delays for Lizzie’s operation.

We want to add one more item to our prayer list posted on 9 Jan. Before the surgery, Lizzie will need to be admitted 1 day earlier. They may need to put a drip on her, which means that she will be bound, considering how active she is now. Please pray that God will put a spirit of stillness and calmness in her so that she will not be fearful or fidgety.

Most sincerely, thank you for your prayers. God bless you.

A belated Christmas and New Year greetings to you. We apologize for the lack of communication and greetings for the past 2 months.
This is posting is way overdue but still in time for Lizzie’s surgery on 14 January. I hope that this will reach everyone, especially those who is not yet aware of Lizzie’s current situation. We asked for your kind prayers and trust that our collective prayers will move the hand of God.

Let me elaborate how this surgery comes about in such a short time. In early November 07, Lizzie’s cardiologist reviewed her and discovered that her O2 level is low at 62%. We were shocked that it has dipped so low without us noticing. We have been looking at the colour of her lips, finger tips and toes and the colour had been good till then. Since then, we bought a new pulse oximeter to use it on Lizzie to be absolutely sure. It is indeed true that her O2 has dipped with her growth and heightened activity.

Since that review with the cardiologist, life has become more stressful. Lizzie is on O2 support almost ¾ of the day and we do not allow her to crawl or play as much. Most of the time, my mom, Elaine and I will share the load of holding Lizzie in front of the TV to watch Barney, Elmo and other kids’ DVDs, hence keeping her still and more importantly her O2 at an acceptable level, with the help of O2 tanks or O2 concentrator. I have never imagined learning more nursery rhythms and children’s songs now than when I was a kid.

The next review with the cardiologist at the end of November confirmed that Lizzie will require a 2nd shunt to be inserted on her left side to support her body’s growing need for O2. While we know this is coming, the reality still hit us hard. Thinking about how much she has already gone through and what lies ahead just tear our hearts to pieces. Apart from another series of scars on her body, we are also disheartened that this is another step towards her open-heart surgery. We are praying for a miracle for our daughter.

The past 2 months have been tough for us both physically and emotionally. Our daily routines, apart from work, are centred on Lizzie and maintaining her O2 level above the acceptable level (of 65%). Any desaturation will immediately put us on high alert and the nasal cannula (the tube that dispenses O2) immediately goes on Lizzie’s face. This happens several times a day as well as at night. We have no time left for anything, much less Christmas and New Year celebrations (so please forgive us for not sending any seasons greetings). There wasn’t much celebration mood left in the house anyway. Our quality of life went down as we are not able to go out of the house much, considering that Lizzie will need O2 any time. Lizzie is very frustrated too, having to be restrained constantly at a stage where other kids her age are learning to walk, play and talk. We spent most of our time in front of the TV so that we can keep the O2 cannula and the oximeter probe on her.

We tried to rationalize why this is happening and whether we could have prevented it. Of course, we can’t but we tried anyway. While we continue to trust that God’s plans for us and Lizzie is sovereign and will ultimately work out, we admit that we do feel fearful of the coming events. The only thing we can do for our daughter is to pray for her and to get as many people to pray for her as we can. Please pray for our little girl when you have some time. Here’s our prayer requests:

1. That God will heal Lizzie miraculously before this 2nd shunt operation, if this is according to His will. We do not want to insist that this is the only way but we will want God’s will to be done in Lizzie’s life, no matter what is the outcome.

2. If the operation is going through on 14 January, 9am, please pray that God’s hand will guide the surgeon and protect Lizzie from harm or any complications. We pray that the operation will be done smoothly and swiftly.

3. We also pray that Lizzie’s recovery will be in double-quick time and her stay in NUH will be short. This is not only because we anxious about her recovery. There are always many medical students around and they always asked to examine her due to her peculiar condition. Both Lizzie and us cannot get much rest at times. We also fear higher risk of infections and complications as more people touch her during this period.

4. Please also pray that God will sustain us physically as we need to care for Lizzie in hospital and at home. Caring for Lizzie now is already a 24-hour job. It will only get more intensive immediately after the operation.

I want to thank everyone who have been supportive and understanding towards us since Lizzie was born. We appreciate the support, care and encouragements with sincere gratitude.

God bless you and may your new year be filled with blessings, peace, joy and grace!!

Simon & Elaine