Saturday, June 2, 2012
What a day
Today we had our a appointment at Sick Kids hospital in Toronto. I had been looking/ dreading this appointment for the last 3 weeks. We drove up the night before so we didn't have get up at 2 am to drive to Toronto, and maybe get some extra sleep. We did not get the sleep we needed (someone didn't want to sleeep) and I also needed to stop feeding her at 4am so she wouldn't puke when she was sedated. We got to the hospital early because I had heard it was huge and it be hard to find our way around. Let me start by saying our exprience at this hospital from start to finish was amazing. We had a nurse that only dealt with Marleigh for the entire time. I didn't like the sedation part but only because she hated the taste of the medicine and freaked out the entire time she had to take it. When she finally settled they got to the echocardiogram. This was probably about 2 hours long. I don't know how many pictures the ultrasound tech took or even what I was looking at but Marleigh was good the entire time (even giving the tech a chuckle when she started tooting during the echo). We then had to meet with the doctor at 1:30. I felt sick as I waited for him to come in the room. Tim told me to chill out, we already knew what they were going to say....or did we. He told us that the echo was great, everything was attached where it should be etc, and that her heart was perfect. I said perfect except for her aorta going a different way. He said no its perfect, everything is where it should be. Pardon. Say that again. SHOCK was not what I would say I was feeling. Pissed might be closer. Tim and I have spent the last 4 weeks, not sleeping, contemplating not having more kids because of the fear that another baby could be born with a heart problem. I haven't been able to fully enjoy my baby because I have been so worried about her. I asked the doctor how someone could screw that up, how someone could read an ultrasound wrong. He had no answers. I wanted to drive to Kingston and srangle the person who read the first ultra sound. Tell them how could you do this to parents who have already lost a baby because a heart problem. I have learned that so much from this experience. One being that you need to always get a second (maybe a third) opinion. Demand the care you want for your child because they are to little to do it themselves. These are the things I wish I had learned before losing Jackson. Even sitting there watching Marleigh get her echo done I wished I had drove him the two hours to sick kids. Maybe things would be different, but even if they weren't I would feel like I did everything I possible could and took him to a hospital that would have done everything they possible could too.