What a crazy weekend. Our lives are pretty hectic as it is between band, family obligations and chasing Addie around. Add in a severe heart defect and you have yourself a real party!
I have learned a few things this weekend. 1. Probably should cut down on outings with Isabelle. It’s a lot of stress and worry about what people have or have been exposed to, and other things that out of respect I don’t want to get into. It was hard, this past weekend and I am very happy it is sunday night.
2. Yes South Shore has a great Pediatric ER,but not so great with cardiac patients. We were there for too long for something that should have been simple turned into a night from hell.
3. Use the visiting nurse for NG tube replacement. Isabelle only cries for a little while and she gets it in perfectly with little fuss.
I experienced crying the other day that shook me to my core. I was terrified that she was going to literally bust a seam. Yes, babies cry. I get it. Problem is when she cries, it burns many of the calories we struggle to get into her daily. Just this past week, two more heart parents lost their children. This is a serious condition, any little thing can cause a ripple effect that can make what appears to be a small deal into a very big one. As I frantically tried to keep calm while she turned purple, all I could think was ‘Please stop, please stop!” and then I told myself that we are locking ourselves up until Interstage is over. She did eventually stop and even gained 30 grams today which still blows my mind.
This life can be hard. It’s isolating. People think you’ve become a crazy germaphobe. You worry. And when you see other moms struggle you thank God it isnt your turn at the moment.
My dillemna was whether or not to post this because the reason why we were there in the first place was a total accident. I dont want anyone to feel bad and it isn’t the reason why I am writing this.
I just needed to get this out. It was one of the scariest moments I have had in this existence and I am so grateful she is here with me, snuggling.