Tired of being strong

Sometimes always being strong and stoic takes it's toll. I sometimes want to scream and cry "why us again". "Hasn't he been through enough?" Enough already. While we know that the preemie journey can be rough sometimes, as they get older you think you are in the clear. You have that false sense of security. And then, BAM. News that can rock your world. I am always the positive one right? There are other moms and dads out there going through far worse than us. We have met these people. But at this moment in time none of that matters. All that matters is the here and now. The having my own freaking pity party to which only myself is invited because no one at this moment (Besides my husband who also ALWAYS keeps it together) really knows what is going through my head and how angry and frustrated and scared I am. I hold it together because that's what I have always done, it's the only way I know how. I cry alone because damn it, I don't want to burden anyone else with my feelings. Everyone has their own shit, they don't need mine on top of their own. I know my friends don't mind, but I mind. I have always done things on my own. Appearances can be deceiving. I can put on the big girl panties and deal with it the way I always do but deep down, I am freaking out. I don't want my baby to have to go through this. I have watched and held him after two major surgeries, one of which he was given a 50% chance of making it out, and the second was not a piece of cake either.

 Anesthesia scares me. Breaking apart his chest to get to his heart, freaks me out. Stopping his heart so that the can remove the membrane scares the crap out of me. I know that we have 6 months of thinking about this and praying that when we go back the news is good. The reality of this is that if not now, it probably is going to happen eventually. I was living in that fantasy that we would never have to do this and that is usually not my style.

So the big girl panties are back on. I am sure I will have my moments in the next 6 months where I quietly lose it, and I will hope and pray that when we go back to get the tests again that all is good. And in my mind,I will prepare for this so that I am not blindsided with something unexpected.  Thanks my friends for listening to my rant. Most will NEVER see this as this blog is not read as often as it used to be. Few will and get a glimpse of the real me, the one who is not always in control.

Surgery in our future?

I am not sure how many of you know that Josh has a heart "condition" called a subaortic membrane or discreet subaortic stenosis..  The short of this is he has a flap of skin growing across his aorta, which can restrict blood flow.  He was diagnosed in 2010 and we have been getting it checked yearly.  It was moderate and we were hopeful that it would stay that way forever with no significant changes.  But we were told and had read up on this and knew there was a strong possibility that this would/could worsen.

We got that news yesterday after Josh's 4th echocardiogram.  Dr. Fahey couldn't read it while we were at our visit so he said he would call us with the results.  When he did it was not what we wanted to hear. The good news is, we will do another Echocardiogram in 6 months, the bad news is, there is most certainly a surgery in Joshua's future.  Super bad news is, surgery for this is open heart - this means that in order to even get to his heart they have to go in through the rib cage and breast plate. So they will have to open the breast plate to get to his heart. They will also have to stop his heart during the surgery in order to operate and remove the membrane.  And lastly, the super, super bad news is that this membrane can grow back.

So now for the best case scenario- it was a bad Echo (the changes were significant) and we can put this off for a few years. The worst case scenario, after the next Echo in 6 months, we will be looking at surgery at Yale. I wouldn't put him in any other hands but with the rising cost of healthcare and co-pays and Yale is not in our Network, so money will most certainly be on our minds as well as Josh's health and any ramifications of having open heart surgery.

So that my friends, is the deal.  Now we wait (as we all know that is the hardest part-- the not knowing) , and my motto is always prepare for the worst, but hope for the best.  I can't be delusional and think rainbows and unicorns - I am a realist at heart and would rather prepare myself for what can happen and he happily surprised when its better than I expected.

Joshua's First Video

12/19/07 - found these that were never published.


We just used our video feature on our camera. Takes lots of memory, but cute video, except it keeps trying to focus. Here is Josh... in full action. They are not as great as I wanted them to be of course! He is yelling now, when he is not quietly babbling. It's cute but not at 4am when he is usually yelling at someone... we are not sure yet who!

Wow. I really wish I was a bit more up to date!  Joshua started Kindergarten this year. He is doing really well and starting to get better at some of those areas that he is slow in. His writing is getting better and he is working on coloring instead of scribbling. I guess with everyone on Facebook these days I don't feel the urge to update here as we have been updating on FB. Bad I know - but not even sure if anyone even looks here anymore. So here are some pictures.