The Bean In The Mirror

Most people have the whole baby thing down by the time the kid is four months old.  But as every post has shown, our experience has not been like most people.  I am not even beginning to suggest that I have it harder than the next person, I honestly don't think I do.  A lot of response I get from friends and family is how impressed they are with how we're dealing with our obstacles, or amazed by all the challenges we face.  Again, I just have to reiterate that this is all we know, and although it's tough sometimes, I can imagine having a baby with collic is probably 100x's tougher than toting a wee-one around with O2, or worse, drowning in medical bills.  We are so fortunate.  Andi's Dad did multiple hours of research on CHARGE Syndrome and read somewhere that most parents of babies with CHARGE, end up in financial ruin because of the medical costs, therapies, months in the hospital.  We are so lucky to have great healthcare coverage, and I will forever be grateful for that. 

Things here are going well as far as the eye can see.  We have a follow-up with her pediatrician tomorrow.  I paged him and confirmed we need to go early for labs, so he can review all her med's and the different levels in her blood.  I received another delivery of oxygen tanks yesterday and in speaking with the driver, was able to get some dinky tanks that might actually fit in the diaper bag.  Much easier to lug to the clinic down the street.  Will have a bigger tank in the car as backup, but still, less to lug would be easier.  Hell, her medical binder is actually heavier than anything and about as disorganized as it can get.  One of the many things on my to-do list, as one of my bosses would say - in my copious amounts of free time! (insert sarcastic laughter here!)

Andi Bean had a great night's sleep last night, as did I, actually.  My only concern last night was waking to find her O2 prongs weren't in her nose, but above it.  I'd replace the prongs and she's wiggle her head on her pillow without even opening an eye, and work it out of the nose.  Guess it's a bit too loose.  Regardless, I tried about 20 times, and then gave up.  She's been sleeping for the past two hours, most recently in my lap while I work.  It's working out well as of now, but when my boss called earlier, she was freaking out with belly pains.  JOY!  Felt bad, but what can I do?  It's four months in and it's like I have a newborn.  I'm very new to this, sort of... it was easier when I had nurses coming in with the feeds or the med dose of the hour, but, all in all, I'd rather be doing it and I really am loving it.

Yesterday, I put a mirror in front of her and she was very into it, smiling at me and staring at herself.  The discovery was fun.  I love making her smile, however, I think I love watching her stretch more than anything.  There's nothing more adorable to me than watching her stretch and yawn.

Tomorrow we'll see if our Bean has put on more weight and if so, how much.  I hope we have us a 10 pounder, at least!  She's tolerating her feeds so well, and although she isn't take much more than 5 ml by bottle at a time, I'm finding that sometimes, the bottle is the only thing that calms her down.  She wants her bottle!  Perhaps if she wasn't so drugged, she might stay energetic to take more?!  I dunno.

The Bean awakes and the sun is out.  We're going to go sit in the sun for our 15 minutes of Vitamin-D processing.  Dietary told me to go buy some Vitamin D drops to add to her formula because it's typical of kids in the Pacific Northwest to have low levels of Vitamin D -- which our lil' hospital baby also suffers from.  The first store I went to did not carry them in liquid, so, we resort to the good ol' fashioned liquid sunshine.  I actually fear the overeager hippies will yell at me for not putting the Bean in a bath of sunscreen, drapped in sun-shading clothes, strapped with a hat and donning sunglasses.  It's 15 minutes of indirect sunlight and I've got a solid four months of nervous parent tension built-up, so I just double dog dare someone.  HA!

So here she is, you're looking at our Bean in the mirror.