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

A Bump In The Road

Well this week is off to a rather crappy start - I found myself craving everything bad - sugary, chocolaty and high fat badness. I caved. I now feel awful. I had to give up my Monday and Tuesday personal training sessions to Ben due to Olivia's health issues.

Monday she developed a strange rash and swollen eyes. At the hospital they told me she was had a viral exanthem - a rash caused by a viral infection. It's quite common with kids and it will go away on its own with the help of some hydro cortisone cream in the rally bad spots. Until its gone though, she has to stay home and away from anyone/anything that might be ill or contagious as her immune system is in overdrive.

On Tuesday she was due for her RSV shot (a monthly dose of live antibodies to protect her against RSV which is a severe respiratory infection) but they could not give it to her because of her rash. We will have to wait until next Tuesday as the RSV clinic only happens once per week at the hospital. Today she got her 4 month vaccinations and she handled it well. The rash keeps changing appearance every few hours but I think she is past the worst of it now as its starting to look better. She has had a rough day but she is asleep now and all is calm again in the world.

I have another training session booked for tomorrow so I will be able to get back on track. After cheating on my diet today I started to do some research on the net about sugar addiction and I was shocked to learn that its not uncommon and its a harder habit to kick than smoking or drinking - who knew!!! I feel better now though, understanding more about it and am going to start treating it more like an addiction - perhaps it will help me beat it.

My plan is to do an intestinal cleanse over the weekend and at the same time eliminate all forms of sugar and artificial sweeteners from my diet for a week and see how I feel. I have been drinking all kinds of diet pop not realizing its been making things worse! From what I understand after 7 days the cravings calm down and become more manageable. After the 7 days you have to just decide not to eat it anymore. Its kind of like quitting smoking (I managed to beat that 15 year addiction about 2 1/2 years ago) where you have to get through the withdrawal and then make a conscious decision to not have it again, not even a bit in order to stay on the wagon. When I quit smoking I never even allowed myself the thought of ever having one again - under any circumstances, knowing full well that one would lead to two and carry on.

I am now trying to find a diet plan or program to follow to help with eliminating sugar and getting my diet sorted out for the long haul. If anyone has any good suggestions, please let me know.

week 1 done

Week 1 is officially over! Woohoo!

So I did pretty well this week and survived a whole 7 days without ANY chocolate - a true challenge. I also managed to shed 3 lbs and got to the gym 3 times. My trainer managed to talk me out of going every day on week one and to ease into it to avoid injury and I am thankful for that. I was sore all week but in a good way. This week I plan to go 4 times, 3 sessions with my trainer and one session to start on cardio endurance in preparation for the big 'M'.

Olivia is 4 months old today and is doing great. She is above the 50th percentile for her height and is right on it for her weight - WELL DONE wee one!

We go to Sick Kids week after next to get another echo on her heart done and hopefully find that she has continued to grow more of these new cells around her VSD. I have a good feeling.

While we are there we are hoping to get the OK to fly so that we can start making preparations to get to the UK to introduce her to the other half of her family. We are very excited about this trip and are eager to book the flights!

Today we are starting baby sign language as well...we know that she wont be able to sign back for another 2-5 months but the earlier we start, the earlier she will start too. We are beginning with the basics....

-milk
-more
-all done/finished
-mommy
-daddy
-please
-thank you
-bath
-book
-sleep/tired
-eat

Well thats it for now as I need to get out and shovel the driveway....

Cheers, Aim

Aching today...

Well today I met my trainer, Mike. He seems like a nice enough guy and I think its going to work out. Olivia went to day care for the first time in her life (at the gym) and did not really know what to make of it. I managed to get an hour of weight training and 20 mins on the treadmill in before she was crying and I went to rescue her. I'm content with both of our progress for the first real training day. Ben is at the gym at the moment, working hard to prepare for this Marathon too. YES that's right - he is going to run it with me. He doesn't think I am serious about this goal so he has promised that if I run it, he will run it too in a ballet tutu!!!

Day 2

Well this is a rather late post and will probably show as Sunday but in fact in my world its still Saturday night, its just really really late and I'm still up - the joys of new motherhood and a baby that thinks its fun to kep things lively.

This morning I was up with Olivia at 6:30 after getting up 7 times in the previous 4 hours, I finally gave in and started the day, under duress.

I got to thinking that if I could sleep in sprints maybe this running thing won't be all that bad afterall.

I have had 3 functioning brain cells today and that thought was the best they could come up with I'm affraid.

When the others wake up tomorrow, I will rally the troops and write a real post...till then, gnight

The first day of the rest of my life, well the 2009 portion of it anyways

Well, as many of you know, one of my many colourful mottos is 'Go Big or Go Home' and it's on that note that I enter into 2009 ~ the year of lofty goals.

This one might require you to be safely seated and perhaps have a glass of your favorite alcoholic beverage on hand. Are you ready?

I am going to run a marathon in May of this year. Yes folks, you read it right, a marathon, a whole 26 miles or 42 km.

I have a few minor details to sort out still.....I'm about 125 lbs overweight at present and as of today I cannot even run to the mailbox but as I said, minor, minor details.

In the spirit of my newfound ambition I have purchased a new pair of running shoes and Ben and I signed up for the gym today, which I am clearly counting as my first day of training.

I will keep you posted on my marathon progress as we go along.

I have decided to write a blog this year because for some strange reason, my life seems to happen at 10X the speed of everyone elses and I thought it would be fun to have a giggle at my own expense and share the general 'goingson' of this household.

On another note Olivia hit 13 lbs today and is doing quite well!

Please feel free to pass on the link to this blog as I need to up my readership, well I think I should strive for atleast one reader.