Wednesday, January 6, 2010

Ooh, Pictures! And Other Stuff

Guest Photographer Bess has been diligent in her duties.

Photos from yesterday:

And photos from today:

Obviously, she needs to come back again soon so everyone can enjoy the fruits of her shutterbuggery. (That is... maybe not such a good word. Shutterbugititude?)

I don't really know what to say today. No date for the transfer yet. Tom and I would like it to happen Monday, and Dr. Boston is ready to take her, but I don't know how many hoops have to be jumped through to make this go.

Jane had two echocardiograms today. The cardiologist came up yesterday, and he came up with the wacky thought that maybe all this time Jane's had an undiagnosed PDA (patent ductus arteriosus, aka the hole in the heart babies are born with that is supposed to close in the first couple of days). She's got an awful lot of the symptoms -- sweatiness, rapid breathing, pulmonary hypertension, right ventricle hypertrophy, etc. But the echos didn't prove OR disprove anything. I don't think anyone on Jane's team thinks that's likely (except for Tom).

Dr. Congenial had a conversation with Dr. Boston today, and then called Tom. In brief, Dr. Boston is ready to try another nitric wean (he called Jane a "responder" since she had that immediate initial response to going back up on the nitric) but with way more sildenafil but is going to wait until the transfer. In Dr. Boston's estimation there's a fifty-fifty chance she'll need the lung surgery. And Dr. Congenial pretty much told Tom he thinks Jane is just going to be down there long enough for the specialists to see her and give their recommendation, and then she'll be back north for the treatment.

We also got a little taste of the internal politics behind all this, which I won't go into. And finally, we got word that the attending team think Jane has a fifty-fifty chance of surviving all this. Do I even need to tell you all that Tom and I just don't buy that last bit?

Yeah. It was one hell of a phone call. I'm going to be processing this one for a while.

But first, I'm going to go back and look at the pretty pictures. Oh, and Jane breastfed again today. So there!


Karen said...

Love, love, love the pics and especially the hair clip!!! As for everything else, I am just sending more prayers and good vibes.

Rachel said...

Geez. You have the crappiest phone calls of anyone I know. On the other hand, you also have one of the cutest babies, who has shown herself to be pretty damned stubborn. I suspect this trait will serve her well in having her cling onto all the good things that she has in life - it's just a matter of convincing her that things like not having the nitric is not an overall good thing. If only she could reason with you... I bet you'd be willing to give her extra cookies AND pacifiers if she'd give it up!

artandsoul said...

Rachel nailed it - you do get the crappiest phone calls ever!

But my oh my what adorable pictures. Sorry, Jane, but that pout is just too adorable for words!

Prayers, good vibes, etc heading your way ... and support for the stamina to endure phone calls etc.

Let's look beyond "survive" and focus on thrive because that looks like what Jane is aiming for. Whatever route it takes, she does have the look of a thriving baby about her... and that will get her through all of this.

That and the paci.

mommatosena said...

UGH!! Crappy phone call barely touches what you experience. I hate politics and I can only imagine what you have to deal with and I am not at all convinced they will ship her back until she is headed home. Seems to me that Dr Boston has a vested interest in her and Dr's don't like letting go of patients. Tom hasn't been wrong with his other guesses perhaps you are onto something. Regardless of all of it she is so cute and that pout for sure is going to get her what ever she wants when she is old enough to really understand it's value. As far as a 50/50...apparently they don't understand the power that prayer can yield and the tenacity of Jane; I agree that she is goaling for thrive. WTH with putting that out there now!? That seems like some sort of scare tactic...or a group of people that has hit the ceiling with ideas. That sours me and I too don't buy it in the least. Yeah for the breastfeeding! Sending continued prayers of healing and the ability to cope with stupid comments and praying that the hoops are presented quickly for jumping through so that Jane is on the way south on Monday. Hoping that today is a whole new ballgame for you all!!

Raspberry said...

I'm thinking the attending team is having their own kind of fatigue and that "survival" thing is an expression of that. I'm very glad you're going to get the new investment of doctor energy.

That little girls is *going places*--surviving, thriving, and eventually driving.