So I'm going to start off this post by saying how blessed I have been to have a baby that has been doing remarkable. I have been able to live in a world of bliss, almost able to ignore the fact that Zachary had to have life saving surgery at 16 hours old and spent 11 days at Sick Kids.
But reality bites...
So our visit to Bloorview was good. The nurses and Dr's were phenomenal. It was a long day, but I felt in such good hands. One of the highlights for me, was when Dr. Church (the paediatric Dr), looked straight at me and said "you know this isn't your fault right? It has nothing to do with folic acid and it was random." To some reading this, you may not even know what I mean, so I'll give you a quick background. Studies have shown that taking folic acid has reduced the number of occurrences of spina bifida. And every Dr we have seen has asked me if I was on folic acid prior to becoming pregnant, which in turn feels very demeaning and that it was all my fault by baby was now not as healthy as he could be. So by Dr. Church saying this to me in the tone she did was actually very emotional. I went from feeling blamed all the time to having someone directly affirm to me that there was nothing I could do. And so I pass this on to other moms who have had similar experiences..."it's not your fault!"
On the flip side, now that Zachary is getting older we can start to see where he is not developing as strongly. His feet don't point down. When he stands, it's only on his heels. And he seems more dominant on his left leg. I have borrowed a jolly jumper, which I am hoping will help with putting his toes down as he starts to jump.
Now on to today and our urology clinic. We had a urodynamics test, an ultrasound and visit with the Dr.
Zachary was so good for all he had to do. He is always so pleasant, sure makes life easier.
The Dr then came in with the results of the testing. He feels for precautionary reasons we need to start cathing him 3 times a day. Zachary has what I call a spastic bladder. He does a great job of voiding all or most of all his pee, however is bladder just keeps working even if there is nothing there. Over time this would be like pulling on an elastic and it would eventually lose it's tightness. So we want his bladder to be able to relax and not over work itself. Only time will tell if his bladder will start to relax on it's own. So I go back on Wednesday (I was going there anyways for Neurology) and they will retrain me to cath him. I haven't done it since he was 10 days old.
So he is still doing wonderful, but the last few days have just been a reality check. A new learning experience. So for the next two days I will go on with enjoying my boy and get set for this new journey.
I will let you know how Neuro goes on Wednesday.