Week 4: Feb 21-25

This week we got more news about Molly's heart, which has led her to undergo more tests and treatments.

Before all that, there is some good news! Her incision from her initial pacemaker surgery is healing well and the doctor thinks the wound vac (literally a vacuum that sucks moisture from her chest to allow it to heal from the bottom up) should be off within a week. For those of you who don't know, her stitches from her surgery split because her skin was so frail, which opened up her chest. The wound vac is something they use to help these situations heal (as restitching was not an option because of her skin). It works great, but takes a lot of time. Hopefully next week she will get it off and move on to a a more normal wound dressing to allow the skin to come back together. Yay! One thing off our plate, hopefully soon. PS: the pacemaker is also working great. She went from 30 beats per minute to avg 160bpm.

So this week we also found out that Molly's left ventricle is not squeezing as much as it should. This leads to a higher heart beat because the heart is compensating for the loss of squeeze. Ironically, we went from being worried about her heart beating to slow to now worrying about her heart beating too fast. Sigh. They think this is happening because the antibodies that caused her condition in the first place (passed to her from me because of my lupus) are still causing problems. Babies keep their mom's immunity until about 3-4 months of life, when they develop their own (hopefully much less crappy) immunity.

So after various tests, the docs have put her on a drug called Milrinone to help increase the squeeze of her heart (yes, there is a drug just for that). They have also given her an immunoglobulin treatment, which has been shown to help "distract" the immune system from attacking itself by allowing it to attack the immunoglobulin. Thus allowing her heart to go back to normal. It was a one-time infusion, but may need to be repeated multiple times depending on her response. This was given on Wednesday. So far the docs have noticed her heart rate going down slightly, which is positive. The heart rate going down is the first sign that her heart doesn't have to work so hard to compensate for the poor squeezing. They did an echo today to see if there actually was any change and we'll get the results later today. Fingers crossed, there is some improvement.

Molly has been a trooper through this whole ordeal. She has such a sweet disposition and really only cries when she's getting poked for iv's or has gas (who doesn't?). Otherwise she loves sleeping in people's arms as much as possible. She also (sadly) has a new haircut courtesy of the NICU team. The had to get a PICC line put into her head (basically an iv that lasts a lot longer) to get her antibiotics and they shaved both sides of her head. So she's extremely trendy with a mohawk. The nurses saved her hair for me because they knew I would cry when I saw it. Will post pics when I can.

So this was a down week for us, but hopefully will end on a good note in that Molly shows some improvement in her heart squeezing from the treatments...