Love is in the Worms

Love is in the worms

It was, by far, the longest August day ever recorded, the day our Christina rolled off to the operating room to get her tracheotomy tube and feeding tube placed. I had been dreading it for weeks, the weather was dismal, the plastic vinyl chairs were hard and squeaky, and the surgery more or less took several eternities. Or so it seemed. When the surgery team wheeled her back into her room, there was the usual post procedure hive of activity. People darting here and there, reconnecting monitors, getting vitals, passing off information to each other, someone’s face in front of mine telling me how great the whole show had gone. I’m sure we said the usual appropriate things. My first glimpse over someone’s shoulder of my newly improved child did not leave me feeling charmed. I was in fact, thoroughly and completely horrified to put it bluntly. Of course I … Continue reading

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

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

Lessons on gratitude from a preemie

Lessons on Gratitude from a Preemie

Today my mini girl turns seven months old. I can hardly believe it’s been over a half a year since I first met her tiny little self. In a few weeks she will be coming home. Home!! As in, I can see her anytime I want, home! As in, this really is my kid to keep, home! As in, yes your sister does exist, home! After seven months of daily hospital trips…seven months of starting every day with a phone call to the hospital to see how she did last night…seven months of praying with the big girls for baby sister to “feel better”…seven months of life revolving around the happenings in the tall building on East Cheves Street…it all will change to a whole new normal that is on the one hand excessively exciting, and on the other, completely terrifying. Terrifying because I’m the mom who can barely stomach … Continue reading