System Recalculating….

Special needs parenting

He’s home. My rolly polly six month old little guy with kidney failure and the really, really, loud set of lungs is home. This one. The one that should never have survived. I still can’t quite believe it. How did I get so blessed? Honestly though, I’m not really sure what day it is, and I’ve had at least fourteen cups of coffee already so here’s my random thoughts on the new, completely crazy, sorta fun, sorta terrifying new normal we’ve got going on around here. First you need to know that having two tubies around is insane. They’re beeping, trying to pull out tubes, throwing up, setting off alarms, you name it, all at the same time. Except for night time, then they take turns…because parents should not, under any circumstance, be allowed a full nights sleep. Real cute aren’t they. If you have multiple children, you know that … Continue reading

October for the Tubies and 9 ways to beat the blues

Special needs parenting: 9 ways to beat the blues

This month was a big month. The Mini turned eighteen months, as in, a year and a half old. Which is wildly hard to believe, except for when she throws a genuine big girl tantrum, and then it’s totally believable. Her latest accomplishments include rolling to her left side, smiling at people, and grinding her freshly sprouted teeth for hours on end (words cannot express my horror of the sound). She also has discovered my phone, when you touch the screen the lights move, which is almost too much temptation to resist…even for her “please burn all the toys and never make me touch them again” self. Little Jed man turned four months old. He celebrated the month by very nearly coming home, then not coming home and having three surgeries instead. He’s also on a personal mission to demonstrate that pulmonary hypoplasia means absolutely nothing to him, and he will scream the … Continue reading

Perspective is Everything

Day 49, first time I get to hold Jed since the day he was born.

I almost always avoid the topic of my two tubie kids in passing conversations if I can possibly help it. (Official definition of a tubie: kids with feeding tubes. In this blog this term shall herafter refer to kids with feeding tubes, trachs, ET tubes, IVs, dialysis catheters, or any other type of tube that I don’t know about yet.) Sometimes the topic just comes up naturally. Sometimes it’s purely out of my control, like when someone (usually a cashier or some such person) makes the innocent mistake of calling my four year old the baby sister. Which typically then results in an indignant five minute monologue from the offended little lady of just why she is not the baby sister. That usually leaves me to sputter a hasty explanation to the now embarrassed individual, or just smile blandly as I make my exit and leave them to wonder whatever they like. … Continue reading

Happy Sweet 16 (days that is), and 16 random thoughts to celebrate

Happy Sweet 16 (days) to Jed

Baby Jed is 16 days old. After all the lead up, all the doctors appointments, all the trepidation, I can’t say I wasn’t relieved to finally see his little face in person. And here we are on day sixteen for my little man who was never supposed to make it this far.  The day that Jed was born went as wrong as wrong could get. We had a plan. All the “ologists” had talked. We had a date. I knew where I was supposed to be, and who was supposed to be there, and what what supposed to happen. Except that crazy kid did his own thing and came at the wrong time in the wrong hospital in the wrong way without the right people having time to know he was coming. And oddly? It all worked out just about perfect. Which is exactly how you know God was looking … Continue reading

A new chapter: The mini comes home

trach baby in home set up

It’s been two months since “the mini” came home. The day she came home was one of the best and scariest days of my life. Two whole months home! It feels like such an accomplishment, which is a weird thing (and probably socially unacceptable) to say about your baby coming home from the hospital, but it’s true. You would think that by the time a third kid comes along you would have this parenting thing down to a science. You would think. Unless of course the third kid is a one pound micro preemie who completely rocks your world and destroys everything you thought you knew about baby care. Well, not everything I guess, diaper changes and spit up seems to be a pretty universal baby skill. But as for the rest of my hard earned mothering credentials, I can pretty much chuck them out the window. The mini came home with … Continue reading