WE’RE GOING HOME!!

And you know what? I don’t care about the lack of services or the feeding tube or all the doctors appointments and all the work I have ahead of me. Ali and I are going to be with Jason and Madi. Ali is going to be able to live the life a little baby should live. Did you know that Ali has never been outside except in an incubator? Tommorow she’ll get to go outside for the first time! We’ve been here for 6 weeks and I feel this huge sense of relief that tommorow it will be over. We can finally move on from all of this. Ali has been through so much since she was born. She’s a real little fighter and I know that she’s going to keep working hard to get better. It really sucks that we’re not leaving the hospital with a healthy baby and it’s horrible that a lot of this was totally unnecessary but we have to get on with life, it’s time!

I took another attempt at inserting Ali’s feeding tube today. It went much better then yesterday so I feel good about that. Ali was pretty ticked off but she’ll have get over it, either that or she can stop gagging the feeding tube out!

Ali had an echo (heart u/s) done this week and we got the results today. Ali has a whole bunch of develpmental abnormalities of her heart. She has SVT as we all know but she also has two other abnormalities. The right side of her heart is hypertrophic (or enlarged) with thickened walls and she has a stricture (narrrow spot) in one of the main arteries of her heart. They are all fairly minor abnormalities and are not anything that should cause immediate concern but they do need to be watched and followed closely.

Those developmental abnormalities of her heart as well as some other “symptoms” that Ali is exhibiting have led her team of doctors to believe that there is a chance that she may have a genetic disorder, specifically “Noonan” syndrome. Ali will be going for genetic counselling and testing next month.

So for now we go home. We will continue to do everything at home that we’ve been doing at the hospital and hopefully Ali will continue to improve. We’ll be seen by all the specialties every second week and will have telephone support the rest of the time. We will be responsible for tracking Ali’s growth, monitoring her heart conditions and getting Ali fed and hopefully soon teaching her to bottle feed.

This is going to be a big job but we love Ali and there isn’t anything we wouldn’t do to help her get better so here we go!  Look out world, here comes Ali!