July 15 - When Life Hands You Lemons...

... twist them into a vodka martini. Anybody else think we deserve to get our drink on? If not, read on.

Dr. D handed down the verdict this afternoon. No decision about Max coming home until after another echocardiogram in two weeks. Max has Right Ventricular Hypertrophy, a fancy schmancy term for enlarged-right-side-of-his-heart. What's interesting is that the cardiologist told Dr. D that he recalls two other cCMV infants who both had RHV. So can he say it's due to Max' cCMV? Is it from some lingering lung issue(s), from his pulmonary edema? Who knows. Dr. D ordered another echo for 14 days out, and another chest x-ray, to be performed tomorrow, to assess what's doin' with the lungs. The cardiologist wanted to wait a month before doing another echo, but Dr. D pushed it up. Nurse S said that the cardiologist doesn't like to do them close together b/c they're expensive and there's not much difference from week-to-week. Eh, we'll see how it goes in two weeks.

And the enlarged belly? Dr. D said Max' belly is still big, but soft - a centimeter down from yesterday. He mentioned our old friend, Portal Hypertension, again. Without invasive procedures, there's no way to tell if PH is back on the table. Plus, even with a diagnosis there's no therapy available to stop its effects. He's keeping Max on continuous 20ML/hour feedings, and may increase it tomorrow since there's no indication Max would benefit from reducing his fluids.

And the bleeding in Max' barf? Dr. D said "we know Max is a bleeder, but what is weird is that it stops on its own. Not weird -- we're LUCKY it stops on its own." And then he hit "replay" on his "if Max bleeds we may not be able to stop it, you know" speech. I understand he has to reiterate it but COM'ON.

Dr. D also stopped Max' bottle feeding. I guess it takes too much energy and heart function to "suck swallow breathe." At least we can resume his exercises.

It was only mildly depressing that Max didn't come home, but any sadness is overshadowed by this happening NOW instead of after discharge. I busted my butt this weekend getting his room all ready. The car seat is even in the Odyssey! I cancelled all of his doctor's appointments today. Night nurse was cancelled, medical equipment was cancelled too. Poo....

On a more personal note, I just feel really run down. It's like knowing he was coming home for the last week gave me just enough energy to get through today and I had allowed myself to BELIEVE it was happening. My NICU buddy Renda said today, "I'll believe my baby is coming home when I have him in the car seat carrying him out." I didn't have the heart to tell her about baby J, whose parents were carrying him out of the Special Care Nursery after a 3 month stay, when they noticed blood coming from his bottom. He just went home after another 5 weeks in the NICU. Of course we'll make it through to whatever end; it's amazing what we can endure when there's no option. I remember thinking when I was pregnant that I didn't know what I would do if Max didn't sleep through the night like Meaghan didn't. Oh, how was I going to survive it?! Now I'd be grateful if that was my biggest fear. And because I don't have enough to do, our cat G.G. Boy Boy was diagnosed today with progressive kidney failure -- his kidneys are operating at about 25% capacity. He's now on prescription food (of course he is). Now all I need is for Meaghan to get pink eye.