Deja vUVA continues.

So it turns out being a NICU patient is actually like living at the Ritz. Because being on the floor is something quite different. First off, we share a room. There is nothing like being paranoid about your baby disrupting others at the same time you are being disrupted by your neighbor's baby. Next there are the horrible "beds" which is a chair that reclines. And the nurses, while nice, aren't really around much.

So right to it...they started Molly on a very low dose of enalipril last night and monitored her blood pressure every fifteen minutes for a few hours. So far so good. So this morning they gave her a half dose of the drug and they will be taking her blood pressure in about 10 minutes to make sure she is okay for her next dose tonight. Side note: at a minimum it takes about 8 tries to get a blood pressure. I told the doctor that if they are able to put a pacemaker in a 4 1/2 baby on day one of life, they should get an effective way of getting a dang blood pressure.

So now we're looking at a Friday release to give the docs enough time to step her up to the full dose of the medication. So far so good, but Molly has found ways to crate drama in the past so our breath is still held.

Another, larger, development is that the docs are now convinced that they need to give Molly a new kind of pacemaker. They think this will help solve the cardiomyopathy. The new pacemaker is called a bi-ventricular and would basically mean it would be what she has now except another lead would be placed on her left ventricle so both ventricles would be stimulated at the same time. They think the dissyncrony of her current pacer is causing her left ventricle to fail.

So this means another surgery and another extended stay at UVA. We're not sure of the details yet as we are meeting with the cardiologist, surgeon and EP about it all either tomorrow or Friday. We do know that they want it to happen sometime in June, though. Not what we wanted to hear, for sure.

More to come...