The Beginning

It occurred to me that many of you may not know how Drew's journey with CHD began. Looking back, it should've been obvious when the struggles with breast feeding began...the fact that he passed out after two sucks or just plain didn't wake up to tell us he was hungry. But, being first time parents and listening to the Doctors who said "newborns are very sleepy," I just thought it was a problem with me, or between us, and that nursing wasn't compatible. Considering the fact that when we started him on a bottle we still had to strip him down, put a cold wash cloth on him and constantly stimulate him at first, this maybe should've clued in our Doctor further...but no murmur, no need to worry, I guess. In the end, he came around and started eating voraciously and putting on weight. He also started spitting up...we thought that was the extent of our woes and that the scariest bridge had been crossed when he started eating well.

Drew's murmur was first detected at his 1 month appt. Our Ped listened to his heart for awhile and looked up at us and asked, "did we notice a murmur in the past?" I said, "no." She advised us to contact the Ped Cardiologist at Beaumont and have him looked at in the next two weeks or so. She ended up having to call herself and speak to the Doctor to get us in. Hello, more clues, but I had high hopes this was just an innocent murmur. In July, we went for his first appt with Dr. Cutler. They did an echo, an EKG, weighed him, etc... Dr. Cutler came in with a med student, got our history, listened to his heart and examined him. She then gave us the news. At the time, Drew had mild-moderate pulmonary stenosis and she was optimistic that it would go away on its own. But, she had a duty to educate us on what all could happen and she did. We left in a daze and scheduled a follow up for the end of August.

The day I was supposed to return to work, we went in for his follow up in the morning. The ran the same tests and Dr. Cutler came in, did the same exam, and told us it had gotten worse. She wanted to run his case by the Cardiologists at Children's because she was on the fence about doing the valvuloplasty then...at 3 months of age. The staff at Children's decided against it and wanted him to come back in 4 months...the end of December. On December 29, 2008, we went in for another follow up. This time, Dr. Cutler stated his pressure had risen even more...from 45 originally to 60-62 now. His heart was working overtime and had begun to thicken and enlarge. It was time to take some action. She then did an echo herself to be sure...and asked us, "was I ever not sure if the problem was above his valve or in the valve?" That's when it became clear that the problem was more involved and that a "simple" valvuloplasty may not solve the issue.

We went in to meet with Dr. Turner on February 5, 2009...he was fairly certain that the problem was contained in the valve after reviewing the echo again. As I posted previously, I wasn't as optimistic because I couldn't let myself think that and then, get slammed with the news that he needed open heart surgery. So, I decided to hope for the best, but prepare myself. And, as you all know, the valvuloplasty didn't correct the problem and that strategy served me well, to a point.

Yes, there is anger, there is sadness, there is fear...there is the inevitable "why my child?" I truly feel God has chosen us to walk this road with Drew in order to help not only him, but other babies. Our chances of having another baby with a CHD have increased, not significantly, and I'll be damned if I sit idly by and don't try to do something to potentially help my next child...or my friend's child...or a complete stranger's child. Because, in the end, every child is someone else's Drew. And every child deserves a long, healthy, happy life. Before we came to this journey, I knew next to nothing about CHD. I certainly didn't know it was the #1 defect in children. There isn't enough publicized about it. February isn't just Go Red for Women Month (a truly worth cause in its own right), it houses CHD Awareness Day and Week. I didn't even know that until the month was upon me and I couldn't do a thing to help out.

In the end, however, I am helping out. This little blog is just the beginning of this new phase of our journey. And, through this blog, I can advocate and educate 365 days/year.