Surviving the trauma of your 3 week old baby needing a new heart is one thing…trying to make her take several drugs a day is another. As you know, Addison does not play coy. There is no poker championship in her future. Her feelings are pretty much written all over her face and when she doesn’t like something, boy do you hear about it.
Unfortunately, Addison is not quite old enough for the talk about life-saving drugs, keeping your new heart strong, preventing infections, etc etc. And drug manufacturers haven’t really tapped into the market for yummy-tasting medications for infants. That means mommy and daddy get the stink eye a few times a day as we try to coax her teeny mouth open to accept another round of drugs. I can deal with dirty looks, crying, kicking, wailing…it’s the projectile vomit that makes me feel particularly bad. Addison looks so sad and miserable when she’s puking, though I don’t suppose it’s a picnic for any kids. Aaron and I have gotten quite good at catching the contents of her stomach in a towel before it hits us, the chair, the pillow or the floor. Then the worst part – if she has upchucked within half an hour of getting her meds, we have to do it all over again. Keeping my fingers crossed because she’s never puked twice in a row, though twice in a day has happened.
On top of that, we have to manage prime puke times in between the 8x a day feedings, which if you do the calculations (average feed time at 45 minutes) means Addison only has a 2 hour window when she isn’t supposed to be eating. Now as parents, we have taken a few liberties with the schedule imposed on us by dietitians and the medical team, but we also have to balance that with the need for her to put on some pounds.
I know lots of kids and babies are prone to puking, but really I find this to be the most difficult thing to deal with so far. I admit, I had a little breakdown last night thinking about how we were going to have to force feed Addison her medications for the rest of her life, poor little baby!! Yes, a bit of drama. After I calmed down, I thought if this is the worst part of my day right now, I’m doing pretty damn good considering where I was just a few weeks ago.
And to follow-up from our first transplant clinic at Children’s Hospital on Wednesday…Addison’s new ticker is doing great, her lungs are working even better, she is now over 4 kg! Her Tacrolimus levels (the most important anti-rejection drug) are at good therapeutic levels and if those numbers continue to do well, we can lower her dose of Prednisone. On Monday morning, she’ll be finished with the special formula and it’s back to breast milk, which may also help with the puking. All good signs for our little princess.
Elaine, Aaron and Addison