I don't even know where to begin trying to talk about this week.
I'll start with Katie. Tuesday I had to take her for her follow up appointment with the Pediatric Cardiologist. While she was still in the NICU they found a 'small' murmur... so small they barely mentioned it to me. They said it was no big deal, would probably go away on it's own, don't worry about it. So I didn't. With all that's gone on, I almost forgot about it.
I'm sure you can already see where this is going.... the murmur not only didn't go away, it got much worse. She has a Pulmonary Valve Stenosis (PVS). Basically a valve is too narrow and getting narrower, forcing one chamber of the heart to work too hard to push blood through. It isn't too dangerous right now, but as time goes on it will permanently damage the heart. So we have to take her next week to Newark Beth Israel to meet with the doctor who's going to insert a balloon into her heart and open up the valve. She also has the same thing Jack had, though not as severe - the PDA - which is a valve that should close and never does. So they will attempt to fix that too while they're fixing the PVS.
The cardiologist said "I'm so sorry, I'm sure this wasn't what you expected to hear." I felt like saying, no, honestly, it's exactly what I expected to hear. That it's worse, it's gone from mild to moderately severe, we've got to go to ANOTHER hospital and meet more doctors. Because that's just the way things seem to be going for us.
Again, I think the word for how I felt was numb. My mom described me as stoic, but no, it was more numb.
But, it is fixable, and Katie is a chubby, happy baby right now, growing and gaining weight and it will be fine so I can't worry about it. I just have to believe it will be okay because it has to be.
Wednesday we left for Philly to see Jack. We met with his doctor on Wednesday afternoon.
Let me put it this way. I take it as a really bad sign when the doctor starts to cry.
When we met with her last time, and it was all 'great news' and tests were fine, she said they were going to have neurology look at him again, just to see if they missed anything. The neurologist this time noticed that Jack can't look to the side. He can look up, down, cross eyed, but not to the side. When she said it, it was like a light went off.... he has never looked to the side, that I can remember. But I never noticed.
This is not good. The neurology department swears that when he was first admitted and they examined him, he COULD look to the side (though I have my doubts). That means that something is going on with him that is degenerative, and combined with his clubbed feet, poor muscle tone and 'floppiness' as they call it, it is probably muscular.
I assumed that the genetic tests they had done on him previously were for muscular diseases, but they weren't. I have no idea why and should have asked but honestly, I guess I didn't want to know. I wanted to believe them if they said they didn't think it was a muscular problem even though St. Barnabas (and my gut) said it was.
So today a specialist is coming to give him a muscle ultrasound, and depending on what he finds, they will order further tests. The doctor said, none of these things they're testing for are good. She said she was so so sorry to be telling us this kind of news.
I said, I knew it. Deep in my heart I've known this for a long time and it almost was a relief to have her say it. I've been trying to convince myself otherwise but I knew something is really not right with Jack, and the older he gets the more I can see it.
PJ asked the doctor, if Jack has any of these diseases she's thinking of, will he ever come off the vent? She said no, probably not. He said, what happens then... he lives his life on the vent? She said, that is a terrible quality of life for a child. The hospital would suggest stopping all 'treatment' if there was no hope of him ever breathing on his own, and his disease was degenerative and incurable. In other words, they would let him die. That's when she started to cry. That's when I started to cry and really haven't stopped since.
She also told us there were two babies in the NICU right now at that point.... not receiving any 'treatment.' Just waiting for them to die. I can't stop thinking about that.
Nothing is definite, we are still a long, long way from that, I know. But I can't get past my feeling that he will never be coming home. I try to imagine him here, sitting on the couch on his Boppy with his sisters, or sleeping in his crib under the blanket with his name embroidered on it, and I can't. I can dream it. I dreamt Wednesday night of walking in the hospital, and he was sitting on my mom's lap with no vent, breathing, his arms waving and his legs kicking. I dreamt it over and over again. But when I try to picture it as a reality, it just never comes.
I can't imagine living my life without Jack in it. I can't imagine a day without him, the world without him. My heart breaks at the thought of the girls growing up without their brother. Of PJ not having his son. The thought that Jack will never get to live his life, grow up. Have a birthday, a Christmas, even just a day outside a hospital.
Yesterday I held him for hours and he cuddled into me and slept, never beeping, not a peep from the monitor. Then when he woke up, he held onto my finger and looked at me, really looked at me. I would say "Jack, it's your mom!" and he would open his eyes so wide.
I don't even know what to pray for anymore. For a miracle? For him to live, no matter what that life is like? For him to not suffer anymore, no more vents and tests and needles and suffering? I don't know. I mostly pray to heaven to just take care of my baby, whatever that means.