Update on Olivia

Hellooooooo Everyone,

Today has been a tearful one BUT tears of joy! We met with her Cardiac team at Sick Kids this morning after having her latest round of tests yesterday.

Her ASD is gone, yes thats right, gone!

Her body has continued to manufacture the extra cells in order to work on closing her VSD and her gradient is now at 150. This is great, its at the higher end of the scale and that means that the blood is having a tougher time going through the hole. Typically gradients only get to 150-200 before they disappear. It was at 97 at the last check December 10th. Its sort of like a garden hose, the bigger the hole the quieter it is as the water can easily pass through it, the smaller the hole, the louder it gets as it becomes more and more pressurized until it dissappears all together. Well her hole is pretty loud now. Also, when you lay your hand on her chest you can now feel a heartbeat in with the wooshing whereas before all you could hear/feel was a washing machine.

If she were to stop her custom repair job right now, she has come far enough that she would live a normal active life without any trouble. Its 99.9% certain that she will NOT need surgery now. There are only a couple of small possibilities from complications of her 'MacGuyvering' a patch that would require surgery but as of the scan yesterday she is showing absolutely no signs of them. She has managed to patch the hole enough that she is no longer putting extra stress on her lungs or liver and there would be no long term harm of having the blood pass through this hole at the rate that it is now going. Any further repair is a bonus. Part of her heart and her liver are still enlarged but those will return to normal over time as they get used to not having to process all the extra blood.

We go back to Sick kids again in 2 months time to have another look and they are saying that this is a precautionary visit. She is well on the right path now and they just want to ensure she stays on it.

They have also decided to lower the calorie content of her formula so she is no longer eating the thick sludge. Her consumption volume has increased from about 12 oz/day in early December to about 18 oz/day now. Shes moving from 30 calories/oz to 27 which means she should eat more and that is what we want. A normal baby eats 20 cal/oz and about 28 oz at her age so we are starting on the path back to normal babyhood.

They are also very pleased with her lack of vomiting and spitting up. Her reflux seems to be improving. As her body grows, she is getting stronger inside and the muscles in her esophagus are maturing, making the formula stay down on its own.

In a months time we will begin decreasing her heart medication by one dose per day and they are saying that she could be off it entirely by the summer if all goes well. On Friday we meet with her pediatrician to begin weaning her off the other meds she is on for the reflux.

She has also developed baby eczema so we will have to get that under control too with the pediatrician on Friday. The docs today said that with a cool mist vaporizer in her room, some special cream and fewer baths, we could have that under control in no time. Its caused by the environment and the dryness of winter and its not permanent - no biggie.

This check-up went better than we could have hoped for. I can't even begin to tell you how relieved and how overjoyed we are having been down this emotional road since she was a week old. She is almost 4 1/2 months now and weighs 13 lbs 10 oz or 6.2 KG. She was born at the 50th percentile meaning that she was right on average for height and weight among all babies and as of this week she is right back on the 50th. For a long time she had slipped below that for weight which was expected but now she is back. No matter where a baby is born on that scale, its important to keep them at that rate to make sure they are on target. She has done so remarkably well that its amazing. They kept going on about how perfect she looks and how shes done so well with her weight gain! Hopefully in a few months she will be an absolutely normal kiddo without meds or special food or anything - fingers crossed.

Thank you all so very much for all your prayers and well wishes - they worked. We appreciate all the love and support you have given us through this difficult time, we couldn't have done it without you. I look forward to penning future updates on a lighter note, free of cardiac drama and full of great adventures. Olivia thanks you all (she told me to tell you) for being the great family and friends that you are. She also told me to tell you that she wants to start making the rounds for visits, now that she is back on top of her game. Let us know when works for you and we will make a plan.

Cheers from a VERY relieved Ben and Aimee and a sweet smiling Olivia xo