Leah’s surgery is in 23 days.

I guess summer is over. It’s been very hot the past few weeks, and suddenly I went downstairs and stepped outside to see this:

Gran drove me to an appointment in Pasadena this morning, and what was overcast and a little drizzly on the way there, turned on the way back into rain slamming the pavement and LA drivers becoming even more terrifying than they already are. The weather in Leah’s room is also pretty challenging. Yesterday we gave her a bath, and before undressing her we turned the thermostat up to 85 degrees in the hope that it would at least get a little bit warmer in the room so the kid wouldn’t start shivering. Well, it didn’t get warm. A little later we checked the thermostat and it was 70 degrees in here, even though it was set at 85. So we asked them to call maintenance and turn up the heat a little bit. Cut to 45 minutes later and the room was practically a sauna. Sheesh. There is no middle ground!

It was Baby Central in PICU this week, but lately there are some bigger kids coming in. The pediatrics waiting room has been PACKED all week. It’s like a giant party in there every day. I’m not sure if it’s one kid with a huge family or a few kids with moderate-sized families, but it’s SO BUSY in there almost every day. Even the security desk downstairs has been busy. On Sunday the line out the door was like the line at Diddy Riese.

Just need to take a moment to vent:

I’ve gotten to the point where I no longer volunteer Leah’s story to Peds and PICU parents who start a conversation with me (like in the elevator or the little room with the microwave) unless they ask for it. I’ve found that most of the time people just want to talk to anyone who will listen, so I let them. If they say they’ve been here for a month, I just say, “Wow.” It’s not a competition. On the other hand, I am endlessly grateful for Leah’s relative health compared to some of the other babies here. It’s easy to forget, in the colorful little bubble that is Leah’s room, how sick some of the other kids in PICU and Peds actually are. On the OTHER hand (said Tevye), Leah can look deceptively healthy. The lead PICU doctor (at least I think he’s the lead doctor as he really doesn’t see Leah that often and isn’t one of her main docs) has suggested more than once that Leah be moved to Peds to make room as flu season approaches. This is based largely on the fact that she is not intubated, and also due to some confusion over whether the fact that nurses aren’t logging every single clog necessarily means that Leah is improving. Memo: This suction tube situation only gets worse, not better. There is no improving on that front until Leah can swallow.

Thank goodness the surgeons shot down that suggestion immediately. I know that this doc is just anticipating a higher volume of patients and trying to stay a step ahead by taking ‘inventory’ in advance, but Leah is in a precarious situation and she needs to stay put. It’s easy enough to look at her and say she’s healthy enough to leave the ICU until her surgery, until you remember that the only thing keeping her healthy is that suction tube and the CONSTANT monitoring that it requires. As one of her nurses put it, that tube is her life support. It’s the only thing standing between Leah and aspiration pneumonia, which can be fatal and which would certainly throw a wrench in the plans for her primary repair. The last thing Leah needs before her surgery is to be placed on a unit where she isn’t going to have the vigilant monitoring required to keep that tube cleared and functioning. She can’t afford to get sick. If she was moved to Peds, she would develop pneumonia and then have to return to PICU, but in worse condition than she was when she left. What good would that accomplish?

The last time it was mentioned, he suggested that we be taught how to do the flushing. Totally not cool. We already feel we have to be here when a new-to-Leah nurse comes on duty because things don’t always get passed from nurse to nurse. We are here with our baby every day – for five months – but it is simply not fair to put us in a position where if we leave the room even for a couple of hours we are putting our child’s life at risk. It’s too much to ask.

Thankfully he hasn’t raised the issue again in the past few days, but I know it will come up again as the unit fills up.

< / end vent >

Okay. Can you tell Mama is getting more anxious as the surgery date draws near? That’s enough for one blog, anyway. Have some pictures.

Nomming on knuckles

Look at those chubby thighs!!

“Hi Lizzie! There are no spiders here, only BabyBugs!”

“OM NOM NOM MOMMY SHOULDER!”

I want a dress like that! It looks so comfy.

Precious

Working hard!

“OMG, it’s Cool Auntie Erin! I shall stare at her!”

“Aunti Staci is here! I’d better go to sleep before she tries to teach me how to keep my tongue in its house.”

Cutest sleeping face ever.

Sweetie pie

Can’t handle her little eyelashes!

OMG. Does this even need a caption?

“WHEEEEE! I’m a baby!”

“OM NOM NOM. FINGERS.”

Blurry but sweet.

“Oh hai, Gran! I hope your arm feels better soon!”

“Mama and Gran are so silly.”

“Like, omigawd, Mama, look at my totally awesome bracelet.”

I love her little eyebrows. She is so expressive.