Quiet time in the NICU

The rest of our week has been pretty calm.

Molly's wound vac was changed again on Thursday and we're looking at either Monday or Thursday that it will be gone for good! Yay. One less tube coming from our baby. They also did another echo on Friday and still found her heart squeezing to be stable (no worse, no better).

We did some research on heart block and cardiomyopathy and found some interesting bits of info...

From the doc at NYU who has been studying heart block for decades (Dr Jill Buyon, who is pretty much the leading American researcher on this condition): I spoke with her on the phone and she said they see this condition often in babies who are paced. She sees a link between this and the kind of pacemaker Molly has. Hers is connected to her right atrium and right ventricle only. In her research she said many children with this problem have to switch to a bi-ventricular pacer to resolve a dissynchrony in the electrical impulse from the right vent (where the lead is) to her left vent. A normal heart has an impulse coming from both at the same time. A paced heart like Molly's has to wait for the right to "talk to" the left.

I also spoke with a mom whose son went through the same thing. She said as far as she was told, the docs try the drugs first (which is what our docs are doing) and the new pacer second. We spoke with the cardiologists today and asked how long they anticipated her being on the drugs before they wanted to see improvement. He said "months." If it doesn't improve in "months" we'll be talking about next steps.

We also asked about why they don't want to replace her pacer now. Basically, they're not convinced it's the problem and it would be a big deal to replace her pacer if it wasn't. She's not big enough yet to really handle the bigger pacer AND she's already having huge problems healing from the first surgery anyway. So why put her through that again if they don't have to?

So hopefully the drugs will start to show improvement. Or they'll at least get her to an age and size where the pacer can be replaced. We'll see.

BUT with all this we are starting to see signs of them being able to let us go home. They're starting to talk about moving her from the Milrinone (an iv drip) to an oral form of medication. Once they do this, she can continue to be followed up on an outpatient basis. The other thing she has to start doing is feeding on her own and continuing to grow from that feeding. Currently we're trying to get her to take bottles when I'm not nursing so we can prove she no longer needs her feeding tube. She's been improving but isn't quite there yet.

Our goal is to get this all together by the time she is done with her 6 week course of antibiotics (given iv), which is not this Thursday but next (March 24). Wouldn't that be nice?