Thursday, May 17, 2012
After meeting with the pediatrian she sent a referral to Kingston (where we were sent with Jackson). After getting home and thinking about it I realized I did not want to go there again. I don't trust them, I don't think I recieved the care my son deserved and I am still upset that they gave me such a hard time getting his final report. Which by the way we just received...so that is over 2 years after he died. Something inside of me said call and ask to be sent to Sick Kids in Toronto. After Jackson died I promised myself that I would demand the proper care for my children if it ever had to come up (although I had hoped it would never come up). On Friday of last week I called the Dr. office and asked that they send a referral to Sick Kids. They called back and told me that sometimes it can take 6 months to a year, and sometimes they can reject the referral. That was ok but at least I tried. Well yesterday Sick Kids called us and we have an appointment in 3 weeks. After the call I was so thankful that we or were able to get in, then my worry brain thought but why did they get us in so fast. My sister (who is a pediatric nurse practitioner) told me that it is a normal time frame for a children's hospital to get back to patients. I am anxious about the time frame but am so glad that we are going there. I know in my heart that they will make my nerves better and that she is in going to the best possible hospital for whatever the outcome is. I hope that this visit brings me peace of mind and maybe I can scale back my worrying.
Thursday, May 10, 2012
Let me start by saying that I am not a religious person. I don't attend church, I believe there is a higher power but for me its not that there is a God or Jesus. In saying that when Jackson stopped breathing I prayed to God that he save my baby and when that didn't happen I really stopped believing that anyone was listening. When I had my miscarriage I yelled at God because I really have no idea what I did to deserve to lose another baby. Now my faith is being tested again. When Marleigh was born they did a echo cardiogram of her heart. Which is not something they do for every baby, but because Jackson died because we didn't know something was wrong with his heart I demanded that they do one to be sure there was nothing wrong. Well yesterday we got the call that the results were in and they wanted us to come in today. At which point my brain exploded with the what she was going to tell me. In the back of my head I thought this is probably not good. I picked up Tim and we went right over. The pediatrian looked serious when she came in. She looks at us and says "I don't know what to tell you but Marleigh's aorta goes to the right and not the left".Ummmmm are you F%$&ing kidding me (is what I wanted to say), but I couldn't say anything. Two out of our two children were born with something wrong with their hearts. Both not genetic and both very rare, our odds are better to win the lottery. I wanted to lose my mind at that point. This is not happening again, not to us again. I did everything right for this pregnancy...again. I know women who drink, smoke and do drugs who have baby's born perfect. While in shock she tried to assure us that this was not the same as what Jackson had and that she had worked with a number of children who were born with this, only they didn't find out until they were older and they are all fine. Now there are things we need to look out for because sometimes some of the other things (arteries I guess) coming off the aorta can constrict the trachea or esophagus, but sometimes everything just works itself out and its fine. Now were off to another Dr to have another look at her heart, which will probably be closer to her being 3 months. With Marleigh being our rainbow baby we are already crazy with worry anyways but now its off the charts. Yesterday Tim and I spent the day wondering what we had done wrong in our lives to make God so mad at us or why he is trying to test us. I think its time for me to research a therapist in the area so I can find someone to talk to because I have had a couple of breakdowns in the last couple weeks and now with this I am again so worried. I knew having a baby after losing Jackson was going to be hard but its even harder then I thought.