Having a child with a complex heart defect is pretty challenging. The first being accepting that something went wrong in those first 8 weeks that caused the defect and doing your best not to second guess everything you ate while you were pregnant. The second is when you hear about the proposed solution and the surgeries your child will need to go through in order to live. The third challenge is an ongoing effort to learn how to navigate this new world of hospitals, doctors, nurses, health insurance representatives and pharmacies without losing your mind. I am afraid I haven’t done a great job with any of the challenges, but I can say that I did my best to meet them and never expected this experience to change my life the way that it has.
I never expected to be so well versed in medical terminology. Of course I can’t think of any right now but I sometimes people ask me if I am a nurse which I find hilarious. I am not a nurse, just a heart mom.
I never expected to be able to live in the moment. My mind is always racing, always somewhere else and never where my feet are. Having a sick child with an unpredictable life span really makes you appreciate every moment you have with them because you never know when situations change.
Most importantly, I never, ever expected to be so supported by my family and friends over the past 2 1/2 years like we have been. Today I have received an outpouring of kind messages, prayers, texts, and Facebook posts all with encouragement. I don’t have enough words to thank everyone. It is truly amazing to hear from people from my life starting from elementary school to college, colleagues, friends and fellow heart families. I needed these messages of comfort this morning. I wasn’t emotionally prepared enough and looking at all of the messages of hope is allowing me to get through this.
This morning was very difficult. She was frightened. She knew something was going on and she wasn’t liking it at all. Izzie had a a hard time with the medicine and after getting the dose proceeded to vomit profusely in my arms. Tears coming down her face the whole time. She finally calmed down after the medicine began to kick in and after a few hugs and kisses, the nurses and anesthesiologist took her back. This time truly was the hardest as we watched them take her down the hallway.
The fontan is the final stage of the three staged repair. Dr. Emani plans on doing a lateral tunnel approach, meaning he is creating a tunnel through her heart using her tissue and a few scraps of paper. No, I really am not sure what the other material is but that is what it sounded like when he was explaining it to us. This new circulation will allow fresh oxygenated blood to her body instead of the mixed blood she has been living with. Her oxygen saturations have always been good. We have been very fortunate in how well she has been doing overall and I know she is going to run circles around us in no time. I know she needs this in order to stay the course of doing awesome. My fears are purely selfish ones. How am I going to handle seeing her wake up while intubated? How am I going to deal with her pain? Will the hospital throw me out as every character defect I have decided to make an appearance?
I have faith that her surgeon will do an incredible job. I know she is going to be fine. Well….kind of. Most importantly I know that no matter what the outcome is- I have so many people holding me up right now and it doesn’t get better than that.
hopeinaheartshape 