Friday, September 29, 2006

Reminder of the Inevitable

We went to see Dr Lim Min Kang, Inarah’s pead cardiologist for her check up yesterday. “She is doing well” he said. It was so nice to hear that. He did the echo for what appeared to me to be the longest echo he had done. The last time she had an echo, she was 5months old and it was a breeze. She was so cooperative. This time aound it was so different. She hated it and was just wailing away until her lips turned slightly purplish. He had to do his job. It’s important to know the exact measurements of her arteries and the hole and everything else. She was looking at me while I held her hands down begging me with her eyes to carry her and hold her close to me and take it all away but I couldn’t do anything.

I was just thinking then, this is how helpless I am going to feel during the surgery. She will be in pain, frightened, confused and will want me to make it better but I won’t be able to do a single thing.

After the echo, I held her close and breastfed her for a while until she was okay. Dr. Lim started printing out pictures and explaining her status. I tried hard to concentrate but deep down I was hoping he will say things like “great, the hole is closed and the valve is not as narrow, so we don’t need an open heart surgery.” Or something like “she will be fine with a heart cath”. I was waiting for anything but the inevitable fact that she will be cut open for the surgery and will be put on a by-pass.

There was some good news though, This is the layman’s version of what he said. His assessment of the echo is that the pulmonary valve is not too narrow. They will cut open it a little but the patch that they need to put in to open the valve need not cut though the whole valve. It may be suffice to just have the patch at the opening of the valve. This constitutes 80% repair which is better than 100% where the patch goes though the whole valve. In the 100% repair scenario, the possibility of a leak is always there which may result in a 2nd surgery to repair/replace the valve. But all this is just an assessment based on the echo. This surgeon will do what’s necessary based on what he sees during the surgery.

This trip was traumatizing for me as it made me realize how close we are to surgery. She is 8.3kg. which is okay but she is not progressing at the same percentile. This is expected as babies with her condition grow at a slower pace. 8kgs is when they can do the surgery and she is already there. He says the only reason to wait is to make it less traumatic for her, How less traumatic can it be, really? Anyway, his opinion is when she turns one it would be a right time to consider doing it. I rather wait till she is 1 ½ . Infact I rather wait for as long as it can wait.

Dr Lim says too long a wait is not good as the TOF itself might create some complications. from myu research, there is increasing evidence that early repair of congenital heart anomalies minimizes secondary damage to vital organs, particularly of the heart itself, the lungs, and the brain

What does all of this mean? It means that its almost here. She will be 1 in 4 months and then we have to prepare ourselves for surgery. I am already a wreak thinking about it. How am I going to survive this?

5 Comments:

At 6:20 PM, Blogger mjey said...

Sham,

Hang in there. My prayers and all the others will pull you through. Inarah is in good hands - having you as her mother is the greatest gift she got....

Miss you lots!

 
At 12:46 AM, Blogger Shamira said...

Thanks manju. Miss you too. We should catch up soon.Maybe after raya.

 
At 2:06 PM, Anonymous a&a'smom said...

Prayers r still with you.

 
At 3:25 AM, Anonymous Stephanie said...

My son has TOF and was repaired at 8 months old. He was only about 10 pounds at the time. Since then, he has done so well. No complications and leads a normal, healthy life. He is 7 now. I know that right now this is all consuming. I never thought a day would come when I didn't think about my son's heart. But, amazingly, there are many days like that now. I even "missed" his surgery anniversary this year because I just didn't think about it.

Keep your faith and your eyes on the end result. You will feel much better when surgery is over and not looming over your head. I know it's hard. It's the hardest thing I've ever done.

I will hold your little one up in prayer.

Stephanie

 
At 6:01 PM, Blogger Shamira said...

Thanks Stephanie,

Reading stories like yours and of many other families who have gone though such and more complicated surgeries, not only educates me but gives me faith.

I just wonder sometime if I have the strength to go though it. But with all the prayers and support, I know I will.

Faith is a wonderful thing.

 

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