Wednesday, November 11, 2009

Sweet Sixteen

Girlfriend's sixteen weeks old today! Can I get an amen?

So, we had an... interesting day at the hospital. We were able to speak with the cardiologist about the results of yesterday's echo and he was terrifically helpful. Basically, this enlarged heart thing is a direct result of the lung thing, and confirmation that her BPD is as severe as they've suspected. But he also said several reassuring things: first, that her heart is strong and working well; second, that her heart is adapting the way it should; and third, this IS reversible. If her lungs get better, her heart will, too.

Dr. Congenial thinks Jane might be best served by being transported to Children's Hospital in Boston. But we're still waiting to hear from them; they may feel that she's fine where she is. We just don't know yet. 

But the weird thing came after all that. Tom had done some research that suggested Jane's oxygenation is going to be really important to helping her heart work less hard. And when he brought it up, everyone was all, "Oh, hey! Good idea!" And when they changed the alarm settings, he apologized for increasing the work load for the nurses, and the Head Poobah Nurse was all, "Oh, that setting is floor policy for babies with pulmonary hypertension." Which Jane has. Which is confusing. Because no one had mentioned it until Tom's suggestion. Wha?

And then, doing more research at the hospital, Tom discovered (while looking at the Children's Hospital website) that the bleb-lobe thingy seems to have an actual name. Acquired Lobar Emphysema. And the resident hadn't heard of it. Which was weird. You'd think, if another kid just a couple of weeks ago was dealing with the Exact Same Thing, they'd know the name for it.

Anyway, it all bumped down our estimation of the hospital a notch.

But Jane herself had a quiet day. A nice snoogle, a bummer eye exam (Dr. Brusque is going to need a new nickname if he keeps up the new attitude) in which we learned Jane's eyes are getting very slightly worse, but aren't worrying yet.

So, the end result? We feel a little better about Jane after getting the info from the awesome cardiologist, and a little worse about the doctors after Dr. Google was coming up with stuff it feels like they should have been on top of.

On the way home, an outrageous sunset lit the way. My camera phone couldn't capture the gorgeousness, but trust me. It was incredible. People were stopping their cars to take pictures.

And then we came home to find this:

My amazing friend Allison, who just had a baby a month ago herself, left apples, fresh eggs and KETTLE CORN for us while we were at the hospital. And bead bracelets that her daughter, Sarah's best friend, made for us. And "a smile for You". Can you beat it? What a lovely thing to come home to.


annachorn said...

Amen!!! 16 weeks!!!! Amen, Amen, Amen!!!!Liked the "adapting the way it should" message. And, as important, "this is reversible..." Maybe there's better "carpet" real estate awaiting in Boston. And, many of us closer to help. Meantime, the sunset seems a great punctuation mark to a little more uplifting day. And how lovely, indeed, to arrive home to amazing friend Allison's thoughtfulness. By the way, as a completely unimportant (at the moment) aside, this kid can wear any color. Beautiful pic!!!! Lots of love and continuing prayers. Ann

Meredith said...

What a beautiful post, Tia. And what a good friend you have in Allison.

I hope you don't have to keep on adding Dr. Google to the consult team, sheesh. Good for you guys for advocating, but, yanno. Sheesh.

Smooches to you.

mommatosena said...

The sunset was confirmation of the Angels watching over your 16 week beautiful girl and you as you travel beack and forth! I think that Dr Google should keep up the good work and I am hoping that Boston takes her as I think that you will get better care there; I know you have great nurses but right now Jane needs the great Dr's and not policy....Amen to friends and the nourishment they bring the soul. This I think falls into the good day category as adaptable and reversible are always good things to hear. Hugs to all!

artandsoul said...

Amen!! What a day. And kudos to you for such an amazing post. I mean really - with all you have going on, you still come on here and make it real and make it clear. Thank you!!

Candles continue to burn here, with flickering flames all day. And prayers. And, ahem, I'm with you on the Dr. Google thing.

But, since I'm also here because of Dr. Google I kind of like him.

Anyway, lovely friend your Allison! Apples and Kettle Corn - yum! Sweet and salty! Enjoy!