We Made The Wall!

We made “The Wall” at the rehab hospital – or at least Cathy and Nicholas did.

This picture was taken during what could be described as a tense moment for Mom (as the picture might indicate):


I can’t tell the story like Cathy can, so I’ll let her do it.
Cathy here.  Much to my dismay, Sam wanted to post this picture so I have no choice but to set the record straight and explain why I look so tense, distressed and and just plain PO’d.  The day is May 20th and I have just come from my 6 week OB/GYN follow up appointment.  Besides being blue because I did not have my baby with me to take to this appointment, being treated like a hand puppet by the Dr. along with the added humilation of being asked how all my “equipment” is working these days, I can assure you I was in a just dandy mood when I arrived at the Rehab hospital.  Lucky for me, I arrived just in time for Nicholas’ 11 a.m. bottle feeding.

Now before I go any further, let me describe the setting I had unwittingly stumbled upon.  Normally “the boy” is in his cozy, quiet room (and I do stress the word quiet), but lucky for me that day as the nurses had decided to set up camp for him in the open play area.  Now I’m sure you’re all thinking what’s the big deal.  Well, my friends, that particular day is the weekly sing along circle time shindig day.  Before I could make a run for the border, I was thrown into a rocking chair, a bottle thrust into my hand along w/Nicholas and cheered on by the therapist to FEED “the boy.”  As I tried to focus on the therapist’s instructions, which were competing with the sing along jamboree session going on just six feet away, out of no where a camera crazed worker snapped some pictures (yes, THE PICTURES) of the boy and me.  Not exactly a Kodak moment, but I was defenseless against her as she so stealthly swept upon us without warning.  At the same time and while still recovering from this excitement, “the circle time ringleader”  too cheerfully asked if I would like to participate in sing along time with the rest of the group.  My expression yelled “Hell No”, while my mouth was not quite in sync replied, “Well, of course I will!”  The next 15 fun filled minutes involved the ring leader waving scarves, jingling bells, and singing to all of us.  Nicholas was even asked what little farm animal he would like to sing about – My flat reply, ” a pig because he sounds like one”  and so the song went – “Nicholas and the little piggies go OINK, OINK, OINK, …”   I can assure you my friends I was in a Twilight Zone moment from which there was no escape.  Nicholas seemed to dig the overstimulation while mama on the other hand was sweating like a boy scout at Michael Jackson’s Neverland Ranch.

So my friends, you now understand the look of distress on my face.  I had seen hell, but fortunately lived to tell the tale….and the the little piggies go Oink, Oink, Oink!

NG is No More!

A big day on the calendar today – the NG tube came out late this afternoon, so Nicholas is now on all bottle feeds.  They’ve added additional feeds through the night (which is when the last of the continuous feeding was being done), and the hope is that he can take some additional volumes later in the evening so he’ll sleep through the night.  He’s gained some weight, too – up to 8 1/2 pounds, which is a pretty good gain from 2 1/2 weeks ago when he weighed in at just over 7 pounds.  He’s also outgrown his first outfit, another good indication he’s growing.  That’s what it’s all about going forward, just growing up – enough to where we can get the trach tube out of him.

He was a little fussy this evening, fighting a little bit of sleep and a little bit of gas.  Good thing he keeps his food down pretty well; our nurse Danita was looking right at him as he let a really big burp fly, and then said “good thing that one wasn’t loaded”.  She would have been wearing it otherwise.

We’ve got another swallow study scheduled for this Friday, to see if he’s still got any aspiration issues.  The last time they did one, there were a few things stacked against him that may have affected his success somewhat.  He’d not been eating much at all from the bottle, the NG was still in and there were a few other things going on.  This time, we’re thinking he’s going to do a little bit better.

We’re also meeting with the equipment provider on Wednesday so we can get acquainted with the boy’s new accessories.  Not that any baby travels light, but this is going to be almost laughable.  As best as I can tell right now, we’re prepared for portable suction, respiratory gear to heat and humidify his breathing air, heart/respiration/oxygenation monitor, ambu bag and probably a variety of other doodads we don’t know about yet.  Tune in tomorrow for that one.

Rumor has it we may be looking at a discharge sometime next week – we’re keeping our fingers crossed.