Update 26 may 2010 - A small victory

Lizzie insisting on wearing her white "flower girl" shoes with her PJ

Hi everyone, we brought Lizzie for her appointment with the cardiologist on Monday (24 May) and it was a bitter-sweet visit for us. We are so relieved and happy to hear that the cardiologist is still comfortable with her oxygen level, albeit lower. He thinks that she is not in desperate need of a surgery in the short term. However, he wants to do an invasive procedure on Lizzie sometime this year to assess the conditions of the 2 shunts (tubes from the previous surgeries) supporting her blood flow to the heart.

We were also told that while the major surgery that Lizzie has to go through in the medium term will correct her missing-artery issue, there are cases where the donor artery may only last 5 years (we were previously told that it lasts for 10 to 15 years). When that happens, Lizzie will be back on the operating table. That is a great blow to what we are already preparing ourselves to accept for Lizzie's life.

To us, the stake has just been raised. High-risk open-heart surgeries for the rest of her life every 5 to 10 years!! This thought brought us down on our knees, begging God for mercy and a much-needed miracle for Lizzie.

While we pray fervently and unceasingly for her well-being, we treasure our moments with Lizzie. We do what we can to let her lead a fulfilling and God-honouring life. Lizzie is looking forward to being a flower-girl for the first time on 31 May. She takes her practice very seriously.

Never thought I have to deal with a boy dragging my daughter down the aisle so soon!!!

Lizzie also visited a farm with her school friends on 25 May. I went along and had a great time with her. We sang Twinkle Twinkle Little Stars and Ba Ba Black Sheep on the bus home. These are simple things I will always remember and thank God for.

Lizzie and the terrapins

Update - 20 May 2010: A time of waiting

Dear friends, thank you for the many encouraging messages and prayers for Lizzie. We treasure each and every one of them.

Playing dress up

Lizzie's oxygen level is still pretty much a roller coaster ride with good times of 80+% and bad times of 50+%. We pray for God's grace to be with her especially during times of de-saturation so that nothing drastic will happen. This is a time of waiting, and of prayer, as we look towards her appointment with the cardiologist next week.

Apprentice chef

Lizzie continues her daily activities, oblivious of her condition. It breaks our hearts to think about what may possibly come her way. Whatever she has to go through, we will be right by her side. We pray that you will help us pray for her too.

Update - 10 May 2010

Our first reaction to Lizzie's decreasing oxygen level was to meet her cardiologist immediately to come up with a remedial plan for LIzzie. However, after calming down a little, we decided that the first thing to do is not to run to anyone but God. We will keep the appointment on 24 May so that we can pray for her.

We are more vigilant in monitoring Lizzie's condition and are taking readings of her oxygen everyday. We noticed that it is lower when she is awake, at around 68 to 74%. When she sleeps, her oxygen level is higher at around 78 to 82%. We are collating this data to meet her cardiologist on 24 May.

Please therefore pray that in the short term, Lizzie's oxygen level will improve, especially during her waking hours when she is quite active (as a 4-year-old) so that her cardiologist and surgeons will not immediately require her to go under the knife. And, for the longer term, for God to heal her of this heart condition so that the need for a major operation will pass by her, not just this time, but for good.

Lizzie enjoying a little drizzle in her ladybird gumboots

Why we are praying for a miracle

Dear friends, thank you for reading this blog. Knowing that you read it gives us motivation enough to keep blogging about Lizzie's progress. We will also be using this blog to keep all our friends updated of any procedures and developments in future. Having the comfort that our daughter is covered by your prayers means a lot to us. We know that prayers will move the hand of God, who is always merciful and loving.

I also want to explain why we have been stubbornly praying for a miracle, instead of trusting medical science to take care of Lizzie's conditions. We do believe that God can heal us through doctors and surgeons, and such professionals and their knowledge are God-sent. In Lizzie's case, the experts are saying that they can operate on her when necessary to put in a human graft (a donor artery) to address the issue of the missing pulmonary artery. In the same operation, they will also rectify the VSD (simply, a hole) in her heart.
What these do not address are:
1. donor graft is not permanent. It may calcify and require replacements, every 10 to 15 years. For a 4-year-old, that will mean many surgeries for the rest of her life.
2. Her chromosome defects and her calcium deficiency will be permanent.
3. She will be on life-long medication which will have other side-effects.

In short, medical science cannot do a lot for Lizzie.


We therefore covet your kind prayers for her in the following areas:
1. A creative miracle from God to correct her heart, chromosome and calcium conditions.
2. No more surgeries. Even though Lizzie has gone through 2 surgeries since birth, she hates surgeries, as do her mommy and daddy.

"All I asked, Oh Lord, is a pulmonary artery and no more surgeries... and lots of marshmallows!"

We believe that God hears us and loves Lizzie. Her condition and her healing will be a testimony of that. There is nothing too great for our Almighty God and His everlasting love. His healing will be perfect in timing and in purpose. Thank you for your prayers.

Prayer request

Dear friends,

In the past few months our Lizzie has changed in so many ways - her physical and mental development have just surprised us on a daily basis, and we give thanks for that.

This month, however, we would like to ask for your prayers for Lizzie's oxygen levels.
We are very concerned and a little disheartened at the sudden drop recently - her normal levels are above 75%, but in the last few days it has come down to the low 70's, and she's occasionally looking blue during these episodes.

We know that God's will and his plan for her is sovereign, but we are still praying that Lizzie would not need to have the open heart surgery at this time, and that this low oxygen will not affect her irreversibly in anyway. We are praying for His grace and mercy to be upon her, and for us, as her parents to have the wisdom to make the right decisions and care for her to the best of our abilities.


We have been experiencing the joys of normal parents with a normal child in the last few months - as Lizzie is actually catching up with her classmates and able to really communicate with us, she also started ballet lessons (which she loves), and we have even gotten her chronic constipation problem successfully under control.



We are sad that just when things seem to have gotten to the point of normalcy, have may have to return to the situation of a pending surgery once again. Dealing with fluctuating oxygen levels has always been stressful for us, but we are determined to stay focused and continue to entrust her life into God's hands.


God bless you all.

Elaine

“Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus” (Philippians 4:6-7).