Aug 16, 2011, 28 weeks pregnant, I went for an US at a maternal/fetal medicine OB/Gyn specialists office. I was going to a specialist because Sadie was measuring to small and I had not gained much weight. I really had no worries going into this appt. My family (mother, sisters) have had no issues with pregnancies and babies. I just figured that I was having a small baby. No big deal. Babies are small all the time and they are healthy. Wow! Did I leave that appt singing a totally different song. This was the first appt I was told that something was wrong with my baby, she had a 2 vessel umbilical cord and she had a hole in her heart.
I knew my world changed that day, just did not realize how much it changed. For the rest of my pregnancy I was so worried about that heart. I went into that OR for my C-section praying that her heart would continue to beat after she was born. God was listening and that little heart never stopped or skipped a beat. After she was born they did an echo on her heart immediately and said that her heart was strong and healthy (not nearly as bad as they originally thought) and yes, had a hole but it was stable and wound not need to be fixed until she was 5-7 yrs old. I loved that idea. Then as more things came to light about this beautiful little girl I pretty much "forgot" about her heart. There were many other things that needed my attention.
Over the past 17 months we have seen the cardiologist a few times. Every appointment has been great. Same report every time "her heart sounds and looks great, follow up in 6 mo". However, the last appt (6 mo ago) the Dr said "I'm thinking about moving up her heart surgery. I'm thinking between 2-3 yrs old instead, but I'm not sure so we will just have to wait and see". OK Whatever, story of her life.
This past Wednesday we went to the cardiologist again. Same report as always "looks great, sounds great". The Dr and I started to chat about everything that has happened in the past 6 mo with her health; 2 hospital stays, lung infections, mito biopsy results, GI issues, lack of growth/weight gain, etc. It was decided that since she has had no issues with her heart and it is strong and healthy, we are going to go ahead and do her heart surgery sooner rather then later. Our goal is to keep it strong and healthy and working to its highest potential especially when the rest of her body seems to be struggling at times. Since, mito disease is unpredictable we just think it will be in her best interest to do it soon.
We are going to let her body rest, heal up from the winter crap it has gone though, hopefully gain some more weight and then at the beginning of fall (Sept/Oct) she will have open heart surgery to fix her ASD. I was really hoping that they could fix the hole by going up through her groin and using a guide wire and fix it that way, but because of the size of the hole and lack of tissue it is impossible to do it this way, so open heart it will be.
Am I stressed and freaking out about this, no. I have learned over the last 17 mo that I can only take one day at a time, concentrate on the here and now. Sadie has taught me that you just can not predict tomorrow. Why should I stress myself out about this when it may never happen? So much can happen in the next 5-6 mo. I do not want to waste my time and energy thinking about this surgery and miss out on the precious time I have with her. I don't want to take that time and energy away from my other girls. They deserve better than that.
It's funny how time changes your emotions and thoughts, and well, everything for that matter. It's just another lesson learned from Sadie.
*P.S. Check back in about 5 months when it is closer, I'm sure I'll be freaking out by then.
I knew my world changed that day, just did not realize how much it changed. For the rest of my pregnancy I was so worried about that heart. I went into that OR for my C-section praying that her heart would continue to beat after she was born. God was listening and that little heart never stopped or skipped a beat. After she was born they did an echo on her heart immediately and said that her heart was strong and healthy (not nearly as bad as they originally thought) and yes, had a hole but it was stable and wound not need to be fixed until she was 5-7 yrs old. I loved that idea. Then as more things came to light about this beautiful little girl I pretty much "forgot" about her heart. There were many other things that needed my attention.
Over the past 17 months we have seen the cardiologist a few times. Every appointment has been great. Same report every time "her heart sounds and looks great, follow up in 6 mo". However, the last appt (6 mo ago) the Dr said "I'm thinking about moving up her heart surgery. I'm thinking between 2-3 yrs old instead, but I'm not sure so we will just have to wait and see". OK Whatever, story of her life.
This past Wednesday we went to the cardiologist again. Same report as always "looks great, sounds great". The Dr and I started to chat about everything that has happened in the past 6 mo with her health; 2 hospital stays, lung infections, mito biopsy results, GI issues, lack of growth/weight gain, etc. It was decided that since she has had no issues with her heart and it is strong and healthy, we are going to go ahead and do her heart surgery sooner rather then later. Our goal is to keep it strong and healthy and working to its highest potential especially when the rest of her body seems to be struggling at times. Since, mito disease is unpredictable we just think it will be in her best interest to do it soon.
We are going to let her body rest, heal up from the winter crap it has gone though, hopefully gain some more weight and then at the beginning of fall (Sept/Oct) she will have open heart surgery to fix her ASD. I was really hoping that they could fix the hole by going up through her groin and using a guide wire and fix it that way, but because of the size of the hole and lack of tissue it is impossible to do it this way, so open heart it will be.
Am I stressed and freaking out about this, no. I have learned over the last 17 mo that I can only take one day at a time, concentrate on the here and now. Sadie has taught me that you just can not predict tomorrow. Why should I stress myself out about this when it may never happen? So much can happen in the next 5-6 mo. I do not want to waste my time and energy thinking about this surgery and miss out on the precious time I have with her. I don't want to take that time and energy away from my other girls. They deserve better than that.
It's funny how time changes your emotions and thoughts, and well, everything for that matter. It's just another lesson learned from Sadie.
*P.S. Check back in about 5 months when it is closer, I'm sure I'll be freaking out by then.
I thought you were pregnant! I read the first four words three times and then figured it out....you were taking us back to 2011. :) I almost got a little mad that I had to find out on here. I remember that month and that ultrasound. And I've been praying for little Sadie ever since. LOVE HER and YOU!
ReplyDeleteKristen