Tuesday we went to our third hospital since the babies were born, Newark Beth Israel, for Katie's appointment about her heart. The doctor confirmed what the first doctor said, that she has Pulmonary Valve Stenosis... but wait, there's more!! It's more complicated than that because the walls of the valve behind the closed flap are thicker than they should be, so while the balloon catheterization will pop open the flap, it won't really help the thick walls. Which means, she might need open heart surgery where they put some kind of mesh or something over the walls, and then eventually have the valve replaced... Oh and of course she still has the HUGE PDA that also needs to be closed.
Do you ever have a moment that just feels completely surreal? You almost are floating above yourself, lookng down thinking, look at that poor sucker? I had one of those when the doctor was explaining it all to us. When did my life become an episode of Grey's Anatomy, minus all the hot doctors? Where the doctor takes you into a little room, closes the door and puts on a very serious face... tells you news you know you don't want to hear, and they don't want to tell you.
What we need to focus on is that at least it is fixable. And Katie is right now, a healthy growing baby - that morning the girls had their 2 month ped visit and the doctor said they looked great - Katie is 8lbs 13oz, Charlotte is 8lbs 3oz, both exactly 5 pounds over their birth weight. She's not sick, not losing weight, having trouble breathing or turning blue. So the doctor wants to wait a month and see how the PDA develops, if it gets bigger or smaller before they do the balloon catheterization so they can bo both the PVS and PDA at once. There's about a 40% chance that will be good enough, and the balloon will push the thick walls of the valve open a little also and she won't need anything else done right now. If not, then they have to do the open heart surgery. I'm pretty sure the way things are going, she'll be in the 60% that needs surgery.
My Katie, she is the sweetest baby. I don't talk about the girls as much as I should, but really, they are angels. Charlotte is the charmer, she wraps everyone around her little finger, she has such a funny personality and this sweet heart shaped face. Katie is the mush - she is a chubby, happy baby. She smiles and smiles, snuggles into your shoulder, has the most easy going personality. She's the baby you dream about having, the one you wish for when you're little, who loves to be held, to sleep in your arms, the one who lets you try 10 different outifts on her and just smiles while you struggle to get the undershirt over her head.
It is hard to think she's not as perfect inside as she is on the outside. I hate the thought of her going through all this but I know she'll handle it like she does everything, with her little smile and sweet disposition. It's killing me though that this is happening to her. And it's terrifying.
I have to write up about Jack - that's a whole other long explanation I will try and get to later. I'll say the news wasn't terrible or great, just typical Jack what the hell is going on with this kid news. Katie deserves her own entry though.
Oh and the pediatrician just called..... the girls got the recalled vaccine on Tuesday..... I said, of course they did. I actually laughed. What's next God? LOCUSTS?? Bring it on!!