I have not posted in a while because things were pretty hectic in my life as of late. As those who read this blog know, my daughter was suffering from dilated cardiomyopathy and she was admitted back into the hospital with cardiogenic shock on June 1. She was listed for a heart transplant on June 11, after the pre-transplant team decided her heart would not recover and was too big to allow for her lungs to function on their own. She was doing okay until about the fourth week into the hospital stay and then she took a turn for the worse. We spent three miserable days in the PICU watching her get put on drug after drug to try to deal with her blood pressure, tachycardia, lack of oxygen saturation, etc. Finally, the cardiology team decided to move her into the CVICU, where they gradually weaned her off many of the drugs and got her back into pretty good shape by the time her fifth week in the hospital began.
On July 6, we were informed that there was a heart for M. At first, they were going to do the surgery that night, but then it was postponed until the next afternoon. M was in surgery for about six hours total, was on the bypass machine for less than two hours and the new heart kicked right in. She came back from surgery looking good, but with a pacemaker because the new heart was not beating fast enough. She did good post-op and came off the ventilator on July 14, chest tubes and pacemaker wires out July 15, moved to the Intermediate ICU July 16 and we are scheduled to be released to the Ronald McDonald House on Thursday, July 23!
It has been a whirlwind of activity! M is doing well. She is on 11 medications, which is actually much less than I thought she would be. Some she takes twice a day and others only once a day and a few three times a day. The hospital provided us with a daily schedule that will really help out with keeping track of things and we will have to stay at the Ronald McDonald house for three months to make sure that the heart and M is doing well. She is still struggling a little to get all her feeds by bottle, so she will probably go home with an NG tube in to help with that and insure that she gains some much needed weight (she is five months tomorrow and only weighs eight pounds!) and grows a bit. She was a preemie, but even for three months, eight pounds is not nearly big enough!
I plan to keep this blog going and posting new information on cardiomyopathy, trasnplant, etc. I know there have been some stories in the news as of late, so I will have to catch up with those over this coming week! Our miracle has happened – M has a new heart and will now be able to get out of the hospital – and all very quickly for such a small baby! We are very, very, very thankful! And now we’re looking forward to learning a whole new set of skills as we take her home!