Thursday, December 18, 2008

home sweet home=)

hi baby=)

you have been home now for one week. we are loving it, and it seems like you love it too! you are very smiley, especially in the morning. daddy and i are working out a routine, slowly but surely. you sleep through the night, and we are so thankful! it works out well for all 3 of us because neither of your parents function very well on little sleep! so a couple times through the night i'll hear your breathing change or your ventilator beeping and i'll get up to check on you. usually you just need to be suctioned or have your diaper changed. sometimes your tummy seems to be bothering you so i rub it and pat your sweet head and slowly you'll calm down into a deep sleep again. then around 6 or 7 you wake up and you hang out with daddy so i can sleep for another hour or two (daddy is quite a morning person, and mommy not so our routine is working quite well so far). your gigi has been here helping out-cleaning and doing laundry and running errands for us and holding you every chance she gets. your grandaddy comes in tonight and you will love him i think. he's very tall with pretty silvery white hair that you'll love to look at. he also has a great mustache that i used to push up his nose when i was a little girl. weird, i know-but it was our game. i wonder if you'll do that too=) he doesn't like it, but i bet he'll let you do it if you smile sweetly at him and give him big hugs;). then sunday it'll just be the three of us! i think we can do it. mommy tends to get pretty anxious when i can't picture how things are gonna work out, but daddy calms me down a lot. we're lucky to have a laid back daddy, don't you think? (by the way, he just walked up to you in your swing and said "hey girlfriend!"which i thought was kinda funny. i can't wait till you can laugh really good at him. he's a goof.) he's been putting you in your bumbo chair and watching charlotte's web with you tonight. you two are funny and he's working really hard to get you where you should be developmentally. you're actually doing much better than people expect! you're very alert and looking around at everything and following objects and people's faces. you reach out for toys with your hands and always have to be holding things-and you have a great grip=) you reach up with your right hand a lot and rub your head. it's pretty cute sweet girl=) your hands are my favorite because they're so soft and if i put my hand down near yours you find a finger to wrap yours around. you kick your feet a lot-especially when you're in a good mood, and especially when you're in the bathtub. you're so funny about your bath-you always seem a little worried at first, but then you relax and love it. daddy always holds your towel across his chest and i hand you off to him. then we take you to do trach care and that's never your favorite, but you're getting better with it. not minding quite so much. we changed your trach at home by ourselves for the first time yesterday. you absolutely hated it, of course, but it actually went well. it was the fastest daddy and i had ever done it. everybody keeps saying that eventually you'll "help us" by moving your head to either side when we need you to. i can't wait for then, sweet girl, because that'll mean you don't mind it as much.

taking you to the doctor is quite the undertaking. you've had two doctor's appointments so far, and another one tomorrow. you get kinda fussy in the doctor's offices and i think that's funny because you didn't mind one bit when everyone on earth messed with you during your 4 months in the hospital. i guess maybe that became a familiar place to you so those things weren't as scary. but you have one tomorrow, and one two weeks later, and one a week later than that, and then another one the next month, etc, point: i hope you get used to doctor's visits soon or those will be sad days! tomorrow you're going to see your pediatrician for your 4 month check-up and immunizations. while the check-up will be far from typical, the immunizations part of it is in a way is a happy part for mommy because it's what normal healthy babies do. i feel kinda funny about that sometimes...let me see if i can explain it right: now that we're home it's becoming routine for us, and therefore it's becoming our "normal". of course there are times when mommy's exhausted and i wonder if i can really do this-feeling pretty hopeless and unable to keep up this pace for an unknown amount of time. i feel so sad for you sometimes and it rips our hearts apart to watch you unhappy with all the "stuff" you need right now. however...we are always thrilled beyond imagination that you are home with us, and even here at all. so yes-it becomes our normal that you have all your equipment to lug around, and i start feeling happy and relaxed and maybe a little too much. but then we go to these doctor's appointments and are reminded about how sick you are and how far you still have to go. you're doing so great though, my girl. i just wanted you to know a little how the waxing and waning of emotions are ok and normal=)

today we went to the cardiologist. we like her a lot=) she said that although you're on an extremely high dose of sildenafil (which helps dilate the blood vessels to your lungs, thus improving your pulmonary hypertension), your pulmonary pressures are still elevated. that's not great, but the pressures are actually lower than they were when you left the hospital. so that's good. the right side of your heart is enlarged because it's been working against such high pressures in your lungs for so long, but it's still functioning correctly so all that is encouraging. we go back to see her in january, along with pulmonologists and together they'll make decisions about your ventilator and trach. i can't help but hope you can come off them both next summer, but that might be too optimistic. the cardiologist said it wasn't outrageous to imagine that-that it's possible-but that all would have to go very well. we'll keep hoping, right? but we'll be quite alright however long you need these things. you might get a special little valve on your trach soon that will help you make sounds and learn to talk-that'll be fun sweet girl=)

so you are the most precious thing. it's amazing having you at home with us. just being able to snuggle with you on the couch or in the new chair daddy got me for christmas (an early gift, in order to cozy up our home for you=)). you love the christmas tree right now. you've always been a big fan of lights and we got some fun pictures of you discovering it. we love you sweet girl. you are our hearts' delight and we can't get enough of you. enjoy your pictures=)


watching tv with daddy in your bumbo chair

trying to get christmas card pictures

all dressed up

driving home from the hospital

you discovering the christmas tree

daddy teaching you about the bird feeder

fancy pants

Saturday, December 6, 2008

more pictures...

i love your eyelashes=)

pretty girl.

smiling at mommy. making her day=)


hi baby=)

you are coming home thursday=) i couldn't think of an appropriate lead-in to something that is such a big deal, so i just wrote it. but you can't even imagine how my stomach feels (butterflies and flip-flopping) as i think about it! this is our second night staying with you in the hospital. they have you sleep with us in a big private bedroom so we can practice taking care of you by ourselves with all your bells and whistles. you're pretty complicated, my sweet=) making mommy and daddy smarter and smarter by the day. so last night was kinda funny-you slept all night but your ventilator alarms went off literally every 5 or 10 minutes. the alarms were set to be super sensitive so even when you would stretch or cough for a split second it would start beeping at us. and you would sleep through it all. =) we, however, did not! no big deal-the alarm settings got changed today so hopefully tonight all 3 of us will get more sleep.

daddy and i have both changed your trach by ourselves now. no fun for any of us! we have to remind ourselves how we really are helping you or we wouldn't be able to do it. everyone says it will become second nature soon. i can't wait for that-hopefully it will get easier for you too. you're hilarious when it comes to breastfeeding. completely hit or miss. sunday you breastfed like a champion again. then for 3 days you wouldn't at all, then on thursday you randomly started wanting to again...point being i can't figure out any rhyme or reason to it. maybe you just are showing us who's the boss=) i stress out a lot less about it now-we get to take you home with an NG tube so i'll be able to feed you one way or another. so many people keep telling us how babies do so much better once they get home, so i'm just hoping that includes how you eat. you are helping me learn to be patient, sweet girl=)

so yesterday was much fun with you in our room. you and i laid on the bed and read books-our favorite right now is called Gossie and it's about a gosling who wears bright red boots. we've been reading it to you for about a month now and it's the coolest thing to see how you've changed-when we first got it you might would look at the book or you might not, you'd usually get distracted by your mobile with the monkey and frog and bird (they remain your favorite toys), but now you'll actually look at the pictures while i'm reading the words on the pages. you're growing up sweet one=) then you were falling asleep and i snuggled with you and scooched my head up next to yours and smushed your forehead in my cheek. i had one of those super dramatic revelation-type moments looking at you and thinking about how you are me and daddy put into a little person. how you were the little sweet thing moving around in my belly-did i ever tell you how when i was pregnant i would count your hiccups when i was trying to go to sleep at night? i looked back at the 3D ultrasound pictures and found the profile one that looked just like your daddy. i tried to see if you looked like that now. i didn't really decide if you do or not, but i think i was just realizing the magnitude of the whole journey we've been on. i know it's not even close to being over, but you're about to be home. i can't believe we get to have you there. maybe i haven't been able to really comprehend that you are ours, but bringing you home i think will probably help make it feel more true. this is what i'm looking forward to the most right now: saturday we are going to put you in your little baby swing in the living room and let you watch us decorate the christmas tree. i think you'll love it because here in the hospital you're always turning your head to see the monitor screens where the bright lights are. we have a huge window that looks out over our front yard and street-there are big trees that make a canopy over the road and i love it. and i can't wait to hold you up next to the window and let you see what outside looks like. you are so cute with new things. we put you in a baby bathtub last week and you were so funny. the first few seconds you were in the water your eyes and mouth opened really wide, and then you realized it was ok and you might even like it, and you settled in and kicked your feet around in the water. it's the most fun to watch my sweet girl discovering her world.

are you ready for this next step? i think i am. i'm so excited, but appropriately terrified i think. a healthy fear, i like to call it=) i am so proud to be your mommy. even though we'll be lugging around so much equipment to make the smallest errands, i can't wait to pack everything up just to go 2 miles down the road to your pediatrician's office. they've been waiting to meet you, and i can't wait to show you off. i love you sweet girl. i just looked over at your crib and saw you sleeping on your side with your yellow and white duck outfit on. and your ever-faithful mr monkey smiling as he hangs from the mobile above your feet. you will miss those guys, won't you?? =) i'll make sure to take lots of pictures of you with him.


this is you reaching for mr monkey=)

you and daddy hanging out on the big bed

"rooming in"-quite the process

this sign on the door made me happy=)

your first big-girl bath=)