We went to the cardiologist this morning (Dr. Batten)! As much as I worry about R's little heart every.single.minute.of.every.day. it seems weird to me that we had not been to the cardiologist in over 2 months. But his BT Shunt is supposed to be so "large" that it will take him to 20 pounds easily. Nonetheless, I can't believe that we went 2 months without a check up! Here's a phone pic I took of my sweet boy while waiting for the doctor to come in:
Basically, if you don't remember from 8 months ago when the shunt was put in, the BT Shunt is usually only to last around 6 months...just enough time for the baby to put on some more weight or overcome any other health problems it might be facing. But in R's case, he has a coronary abnormality that means he needs to be big...his heart needs to be big...so the surgeons can *try* to cut around the coronary (that, of course, is in the wrong place or as Dr. Dabal put it...the worst place possible).
So the result of the appointment was Robert isn't any better or worse, nothing has changed and we wait until at least 20 pounds (5 more pounds to go!). It's good to hear, yet so frustrating!
I know most people just don't understand. I know they try. But I don't let him out of my sight. He still sleeps in my bedroom within arms reach (a myriad of reasons...heart issues being one...feeding pump being two...), he still sits in a bouncy seat in the bathroom when I need to shower, and I still tote him from room to room in my arms all the time. Robert has seats and places to sleep in almost every room in my home. What I think is most misunderstood about my life with Robert is that he is doing really well considering (you know, besides the heart defect, GI issues, feeding tube/pump, immune deficiencies, severe sweating, constipation, developmental delays, etc.), BUT I am the one that keeps him day to day, hour to hour, minute to minute. I see his ups and downs, his struggles, and his accomplishments no matter how small. I know exactly what is "normal" and sometimes its what no one else sees that is truly a concern or signs of distress. It's just hard to explain. But those that have been there probably can sympathize.
It is so different from my very independent Emerson. As they were both born in June, it is very easy for me to remember what she did her very first Christmas, Easter, etc. At this time, 2 years ago, Emerson was walking! I know she walked early, but nonetheless, she was walking. Robert hasn't rolled over yet. I think he could do it, but at this stage, he just doesn't want to or even know he can (that's what I tell myself). But he goes to PT twice a week and I have been able to tell a big difference in his activity level. Here's to rolling over within the week! He's oh so close!!!
No comments:
Post a Comment