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 much...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, etc...my 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=)
mommy
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 much...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, etc...my 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=)
mommy
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 
