In medical literature, babies with Trisomy 18 are "incompatible with life." Our precious son, Aaron, defied the odds, not only living, but thriving and loving his life. He passed away 13 years, 6 months and ten days after his birth. This is an effort to share his joy in his journey. Like the little purple pansy, he was tiny, but strong and still brightens his corner of the world.
8:30 am – The OR just called and Dr. H.has the pins in both feet and feels really good about them.Today started really early, in fact, earlier than it needed to.I just couldn’t sleep because I was afraid I’d oversleep.Even set two alarms, one for 4 a.m. and one for 4:10 a.m., and then got up before they went off.We left the house just a few minutes after 5:00 and got her about 6:00.They took Aaron back at 7:45.
As I was waiting for the stroller to come back, another couple brought their little girl down.The way it works is you walk down the hall with your child and a nurse or doctor, or whoever is taking them back.Then you come to some striped tape on the floor and just beyond is a set of double doors.That’s where you say goodbye and hand over your baby.At that door, it’s always your baby, no matter how old or big they really are.I’m afraid I’ve gotten used to it now, or I’m just stuffing it all down, because it’s not as emotional anymore.Don’t get me wrong.I still worry.A lot!But the first two times they took him, it was all I could do not to run after them.Now, it’s not quite as hard.Anyway, I saw it all again, so vividly, as they handed over their little girl.Mom was crying quietly and Dad looked worried, about both his baby and his wife.The patient was having fun playing until it was time to leave Mom.Then she wasn’t so sure either.At least Aaron’s still very willing to go with someone else.I think it would be close to unbearable to have to let him go knowing he was upset.
Close up of one of his casts - pre-op
9:00 am – Dr. H. just came in and she said his feet look great!He also did really well in there.She’s calling the attending from the Palmer team (his admitting team on the floor) to come down and make a plan with me for where we go from here today.She also wrapped his casts in fiberglass to help keep him from banging off the plaster!I think they’re blue.Anyway, they will have to custom make his braces for his feet, so we’ll go in to Shriners in three weeks to have the casts off, make molds for braces and then recast one more time.After that, he’ll have little ankle high braces that he’ll wear most of the time for the next three months, and then hopefully, we’re done!I may have to find a way to pad his cradle better, or he may beat it to pieces before then.Can’t have him doing that.