trach

hi sweet baby=)

it's 2am and i am missing you. you will be getting your trach in about 10 hours or so. i'm ready-i hope you are too. i'm even a little excited about it. i think i'm just ready to get on with things-to get you used to having a trach, and get us good at taking care of you with it. i think you'll do great with it sweet girl. being on the ventilator for the last week and a half has been really helpful for you. your CO2 has gotten so much lower, and your BNP (the measure for heart failure and therefore pulmonary hypertension) went from almost 1800 to 61!!! that's great my girl! that makes mommy feel a lot better. as scary as it is for you to have a trach, it makes me relax so much to think that it will decrease the work you're having to do and therefore make every little part of your body happier and work better together. and we can be patient=) we can definitely handle a beautiful little girl with a funny little contraption to help her lungs work a little better for a little while=) the doctors say it will be temporary, but they're not sure quite how long you'll need it. maybe a few weeks (not likely), maybe a few months, or maybe a few years. he says "just put it this way-she won't be going to kindergarten with it"...so that's good=) there's a sweet respiratory therapist at uva who has had a trach herself and she's spent a good amount of time talking to (and calming) mommy while we talk about you getting a trach. she says it might be hard when people stare at you because it's different and they won't know what it is....you know how people do. it's pretty natural for people to react that way-i can't exactly blame them-and right now i feel like that won't bother me too bad. part of me really hopes you don't have it long enough to where you realize people look at you differently-so you won't have your feelings hurt. but part of me doesn't mind that at all. it's kinda neat to have the opportunity to teach you that it's ok-that being different isn't a bad thing at all-that we have grace for people who might not be as courteous or gentle as we might like them to be. we can't blame them for being human, you know? because the truth is that we are no different. mommy and daddy naturally have a hard time not watching people who might look different than us, and you will be the same sweet girl. you will find it hard to not look at those people too. i pray that you will love people who look different, because they are just as they are meant to be. and you are just as you are meant to be-just how God made you-and we can't complain one bit about that...it's just not quite what we imagined. no problem=) and this respiratory therapist friend says i might be a little idealistic about it right now. that might be very true. but we'll take it as it comes, won't we? we love you so much sweet girl. you are incredibly beautiful. we can't get over it. i love watching the nurses come by your bed and talk about how pretty you are. and they brag on how you're perfect. i, of course, think you're perfect all around. but what they are talking about is how you're perfectly appropriate as a baby. my favorite thing you're doing lately is reaching out to touch your toys that i'll hold out in front of you. and i'll read books to you and you look so intently at the pages. you must be brilliant=) you and i have had a great couple of days together. you sit in my lap all day and sleep and wake up, sleep and wake up. and when you're awake you've been wide awake and playing with me. swatting at rattles and little caterpillar dolls named carrie and triangle shaped thingies named moe and elephant faces named trunks. your nurse helped us name them. these things all make noise and you like to watch them and reach out for them. i get goofy and a little teary-eyed when you do these things=) sometimes i forget that you're a normal baby, just with silly lungs and blood vessels that aren't quite working right yet. so it makes my day when you show me how normal you really are=) i love you baby girl. i can't wait to see you in a few hours. i will give you a pep talk=) i will say something like, "this is a big day, and you can do it." you can=)

mommy