Where are you, God?

Dear friends, Lizzie has been in the Neonatal ICU since 9 August. Apart from the heart conditions, the docs are also taking precautions over the effects of Digeorge's Syndrome. Among the effects is immunodeficiency. Only limited persons are allowed in the NICU and we have to wash our hands before going near Lizzie. For Lizzie, we also have to wear masks for added precaution. After the paediatric cardiologist scanned her, he concluded that the main artery supplying oxygenated blood from the lung to the heart is missing. With this, the heart will not be able to send oxygen to the other parts of the body. The obvious sign is that she will turn blue (hence the term blue babies). Lizzie hasn't turned blue cos she is relying on a artery branch ("PDA") which exist in all newborns as the replacement artery for this function. Typically, this branch will close within 48 hours of birth. On the monitors, we are keeping close watch over the O2 level. Anything below 80 is bad.The first 3 days went by without much fuss as Lizzie's PDA served her well. On the fourth day, the O2 level began to drop, crossing the 80 level very frequently. Finally, at 10:30pm, the docs decided to start the medication which will enlarge her blood vessels, including the PDA. This meant that Lizzie is a step closer to surgery. There is also a risk that the medication will cause respiratory problems. The next morning, Lizzie's O2 level rose to 96 and she wasn't facing any respiratory problems. We were relieved....temporarily. The docs mentioned that the medication is kept to the minimum level (0.01) and is working in keeping the PDA open. Two days went by and Lizzie's O2 level started dropping again. The docs increased the medication dosage to 0.02. Another day went by and the O2 level went down yet again. This time the docs increased the medication to 0.04. This worked for a while and soon, the medication was raised to 0.06. The maximum dosage is 0.10. Lizzie's O2 level was holding up in the range of 89 to 91 for 2days. The docs came and told us each day we visited Lizzie that she is doing very well. The calcium level is holding up and they are reducing the calcium supplements for her. Her blood platlet count is good. We were overjoyed. Lizzie's PDA is staying open and there are little signs of Digeorge's Syndrome. We thank God for hearing and answering our prayers. On 20 Aug 2006, Lizzie's O2 level is on the move again and this time, it plunged to 70 and hovered around 75 to 78. After more than 1/2 hour, the doc decided to increase her medication. I am not sure what is the current dosage, but I know it is now in the high level. Our faith level has also been fluctuating with Lizzie's O2 level, especially during times when we prayed and the O2 level dipped further. We are still hoping and waiting for God's hand to move in our lives. Where is our God? Elaine and I sometimes feel disappointed that it is not God who sustain our little baby's life but medication. We visit Lizzie in NUH daily. Seeing her being hooked up with tubes and sensors and the constantly changing numbers on the monitors just make our hearts sink to new lows everyday. We do see small victories each day, of Lizzie opening her eyes, of her finally drinking milk from the bottle instead of the tube that leads into her stomach, of hearing the sound of her cries, etc. But we yearn for more. We know that our God is not just one who give us small temporal victories. He is a God of impossibles. We yearn for a deep healing touch from God that will heal Lizzie of her congenital heart defects and Digeorge's Syndrome. We prayed that our child's life will not be sustained by medication and surgeries, but the medication has already started. We are holding on to our prayers that the medication will be reduced and eventually taken off and there will be no surgery for our child. As long as the docs have not performed surgery on Lizzie, we are holding on. Having said that, the cardiologist has already mentioned that he is only waiting for Lizzie to put on enough weight (to atleast 2.5kg) before he will operate on her. Lizzie is now 2.0kg. Thank you for your kind prayers for our Lizzie. Time is running short.
God bless, Simon