Tuesday, September 2, 2008

The Continuing Bounty and Roller Coaster Ride

Today has been quite a mix with some bumps in the road and then the continuing tsunami of love and support.

I arrived this morning to find Shimmy asleep peacefully for his early morning nap. The timing was just right in that I got to pump while he stayed asleep and then woke up for some snuggling and playing before his feeding. We had to dole out my breastmilk over the last 24 hours (even halving it with formula) because the Breastmilk bank was closed over Labor Day and there wasn't an order put in in time for the extra. Since I can't keep up with what they're gavaging him these days they were all set to start him on straight formula but I finagled a middle ground where they would wait for me to pump and then mix my breastmilk with the formula so that he at least got a mix and didn't have to deal with learning to digest straight formula during this time. The balance worked out perfectly, even overnight when I wasn't there to pump, until this morning when I got to the Hospital again and could pump enough again to last us until the banked milk came in for the 3pm feeding.

As we were settling in to our morning routine there was a little tickle in the back of my brain that Shimmy was just a little more fussy than he'd been for the last couple of days but wasn't quite something to speak out loud just yet. In addition, he didn't nurse at the 9am feeding but that's not unusual. When I got back from my break this morning and Dianne mentioned that he seemed to be more fussy and hadn't slept as peacefully as he'd been doing, the tickle became more of a magnifying glass and when Simon didn't nurse again at the 12 o'clock and was breathing harder during the following nap I was concerned. While he slept for his typical 2 hours it was not the usual as of late deep restful sleep but more of a twitchy, labored breathing sleep without the drop in heart rate that we've been seeing for the last 4 or so days. By 4:30 when he was ready to wake up I was ready to have a doctor look at him. I needed to step out for a pee break and to stuff some food down, while I was out one of his docs actually came and sat with me letting me know that he'd looked in on him and he seemed just fine.

When I got back in with Dianne, Simon was still breathing hard and I was surprised given what the Doc had said. Dianne let me know that it was a very brief visit so I asked "did he listen to his breathing?" She said No. I said "did he put a stethoscope on him at all?" She shook her head no and that's when I said it didn't count and went on a doctor hunt.

Carol, bless her heart, saw the look in my eye and heard the tone in my voice and got the Fellow on call right away. Jubilee came by within minutes and did a thorough examination of Simon and promptly ordered a chest x-ray to check for fluid around the heart and lungs. We're still waiting for the results and Shimmy's not too uncomfortable or fussy, he's just clearly not quite where he was yesterday and not in a good way either.

After last Tuesday, I'm not fucking around anymore when something doesn't seem right. It's a fine line between not wanting to be a bother or high maintenance parent for the very busy and wonderful folks here AND feeling that Mama Bear force inside and knowing that I would do anything for this little man.

Then comes the bounty...

This evening we were planning on defrosting some frozen lasagna for dinner and just as I was heading out to get it, two folks came by the curtain, neither of whom Jaime nor I recognized. However, they were clearly here to see us (Visitor passes have the patients name on them).

Turns out that they are a couple and one is part of Jaime's online"Other Mother" listserve (so we'd never met them facet to face) and the other was a student's of Dianne's at New College. They had read about us on the listserv when Jaime posted and then Dianne sent out an email to her former students and they put 2 and 2 together. They have 11 week old twins and still managed to bring us the most plentiful dinner with snacks included for another time. Amazing.

Amidst all the insanity, trauma, fear, and pain, there has been such grace. Jaime and my gratitude to you all is ginormous.

Thank you. Thank you. Thank you.


Frank said...

It was great to be able to hold my nephew and I know Jen loved being Auntie for little Simon. Sending healing power his direction.

Simon's Uncle Frank

Anonymous said...

I don't know what their problem is. i wouldn't fuck with you and I am pretty tough. Ok, so I am only 5"2' and not very intimidating but I kick in the shins hard. Keep up the advocating and we all know you are not overbearing crazy parents, just loving ones.

Peace out,

Emily said...

you know him better than anyone. if you think something is different trust your instinct. it is a mamas job to be a mama, and it is a doctor's JOB to be there to see your baby. so don't worry about being too aggro. it is all good.

Justyn said...

oh oh oh -- we've been gone for a week or so to the mountains so I had no idea about the peaks and valleys that the rollercoaster hit over this time. So glad that you and Simon and Jaime are riding this one out together -- and that your watchful mama eyes (and voices!) are staying ever sharp. No one ever got an award for being a complacent parent in the PICU. Coming back for a visit just as soon as I get fully over a cold that won't leave me.

Anonymous said...

Never ignore your inner voice. . . you both know your son better than anyone! And most of all ~ you are your baby's voice, his advocate. Don't second guess yourself ~ run with the gut feelings!

Thinking calm thoughts in Boca!

Carol, Pat and Katie
(Z and Cecelia, too!)