Thursday, February 12, 2009

'Bout Time

I was due for it.

Yesterday I was planning on getting out between rain showers and taking both Simon and Roxie out for a much needed jaunt.

Before we heard back from a couple of folks that may or may not have been able to join us, Shimmy and I decided that a quick trip down around Lakeshore was in order. Simon had another good night, ergo Jaime did as well. LF here...not so much. The waking up for Simon's meds AND his few wake ups was taking it's toll and the moment the rain stopped and clouds broke I figured now was our chance and a short stroll was much needed.

Simon had a great 2 hour nap and was in high spirits, bib on, blanket for snuggly warmth, straps locked, and we're off. We make it down Rand, and halfway down Lakeshore when I realize that it's 12:02 and I'm going to be late starting Simon's pump feed. Not super late mind you, maybe 15 minutes tops. But, that's all it took. I lost it. I'm crying past the Starbucks, the Hallmark store, crossing the street, even past the Philly Cheese Steak restaurant. Good full body sobs shaking me. All I can think is, I want a healthy baby. No more syringes, no more pumps, no more medications or blood draws or being ruled by timing of those things. I want a healthy baby. I want Simon to be a healthy baby. I don't need this all erased but I want Simon to be all done. All done (I'm doing the sign language that goes along with saying that Simon knows so well.)

Of course all this came as Simon is hitting a new stride. His BNP is down. He's sleeping better. He's smiling and laughing more during the day.

AND it's still such a mind fuck that his heart is still in failure, that he takes several very potent medications throughout the day (and night). That as chubby and luscious his cheeks and thighs are, it's not because he's eating and enjoying new foods like most other 10 month olds.

Dammit. Just dammit.

15 minutes later we are home and hooking up to the pump. Simon's smile is melting my heart and we are laughing through our "Baby Can Read" video. I'm fine. back to the present moment as sweet as it is.

It's not very often that I get to be in touch with the larger picture. Hard but good.

As for today, we had a good visit with our pediatrician and the little man handled his shots pretty well along with the lancing of his two infected (but doing so much better) stitch sites around his G-tube. Trooper that boy is. 19.47 pounds at his last weigh in.

I love him.

Simon and avocado reconnect

Tuesday, February 10, 2009

It just keeps getting better

Not quite on the same scale but still frikkin' awesome.................

Shimmy slept 7 hours straight last night!!!!

That meant that Jaime did too!

Mommy on duty had to get up at midnight and 4am to deliver meds but I'll take it!
It's a good day, a good day.
We're off to meet Jaime at her place of work when the little man wakes up from his morning nap. Got to show the little miracle man off.

Please please please let this be a long climb on this crazy roller coaster with no big dips in sight. AND thank you thank you thank you for all the sweetness as of late.

Two months till he's one year old!! That's crazy. We're thinking just a big old gathering in a park with some grills going and lots and lots of love. Stay tuned- an open invitation will most likely be posted here.


Think Titanic

I'm the King of the World!!

Monday, February 9, 2009

BNP history and results

Locations of visitors to this page
So Simon's BNP results came back (via voicemail from HunkyPants).

Remember the BNP is the blood test that lets us know how dilated and distressed the heart is.

Simon's highest BNP recorded was 3600.

100 and lower is a healthy heart.

About 6 weeks ago Simon's BNP was 1100.

Since then he's had surgery and has had a rough road of recovery.

We went to our regular cardio appt this last Wednesday and had our regular work up.

He's just gotten back to sleeping well in the last three nights.

A BNP below 1000 is considered a good thing and a sign of recovery.

Shimmy's BNP..............................................
Granted, HunkyPants did say that he "hoped it was real." We'll see next visit but HOT DAMN!!! I know it's real.

Celebrating. We are doing something right.

Simon knows there's something to celebrate too as he's been smiley and talking up a storm since we listened to the voicemail.

Feeling light in my heart. (again with heart analogies)

Love and light to all