papparazi-you're getting used to it...
an empty hummingbird feeder is not very interesting, but you liked the red color!! 
little cuties=) 
sweet face=)
FAQs About Our New Floors
4 days ago
Tuesday, January 20, 2009
brrrrr!!!!
here are some pictures from when you went outside on a chilly day!!!
an empty hummingbird feeder is not very interesting, but you liked the red color!!
little cuties=)
sweet face=)
an empty hummingbird feeder is not very interesting, but you liked the red color!! little cuties=) sweet face=)
more photos...
smiley girl=) 
you love your daddy very much!
you've discovered how to put your hands in your mouth...
probably wondering when all this picture-taking will stop...
aunt nikki made this for you-it's hanging above your crib. do you remember a letter daddy wrote you last summer? it was about two verses-one he would think of if Jesus had taken you on to heaven, and one he would think of if He let us keep you-this is from 1 samuel 1:27 since we got to keep you=) grandparents...
Here are some pictures from when your grandparents and great grandparents came to see you!
you and grand-e-pa (that's what he's named himself...we'll see if you catch on)
you and Big D (also what he named himself-28 years ago!)
a good lookin' girl with 3 good lookin' men! 4 generations of Davises (sorry baby-i still don't know how to make our last name plural)
gig and grandaddy holding you=)
you smiling with grandmama and papa
you have another great grandmother coming to see you soon! she can't wait to get her hands on your sweet girl=)
Thursday, January 15, 2009
happy new year=)
hi sweet baby!
i'm sitting on our living room floor and you are laying next to me. you are snoozing and very sweet-you'll still smile in your sleep sometimes and i love it=) you've been home for over a month now and you've been very busy learning things and having first holidays...i guess it started out a little scary on christmas eve-we were changing your trach and it wouldn't go back in=( no fun for any of us sweet girl. but to make the story much less dramatic, i'll just say that we ended up putting the smaller one in and you were just fine after some snuggling and patting of your head=) a couple days later we went to the ER to see if they could get it back in but nobody could there either. they said some scar tissue had probably formed and it's just not gonna fit anymore. so now you have a trach without a cuff and you have a pretty big leak around it but you don't mind that. your surgeon said that if you tolerated that well, then he would rather you have the smaller one because it's basically just one step closer to getting rid of it. so after a little drama on christmas eve, you and your daddy and i had the most precious quiet christmas together. we watched movies and made chicken pot pie and opened the few presents we hadn't already opened (daddy has a habit of opening everything early-i'm not sure if you'll join him in that or help me get him to wait) and we thought about how thankful we were that you were here with us celebrating christmas=) then new year's weekend was fun because you got to meet some of your great grandparents. grandmama and papa came up with mommy's parents and there was lots of studying new faces and laying in laps and kisses and picture taking. it was a very sweet visit and i'm so glad you three got to meet each other. three more of your great grandparents are coming to see you over the next month-they are so excited sweet girl-it'll be lots of fun.
we went back to charlottesville last week to see the surgeon who fixed your diaphragm and put in your trach. his name is dr rodgers-and we love him so much. i can't remember if i already told you this, but he's very grandfatherly and we think he's so great. when you were in the hospital he used to pick on mommy by coming around every day saying daddy should hold you all the time because you did better in his arms, and he also wanted to make sure we weren't spoiling you too much;) he was always joking sweet girl. i think he knew that if we weren't there to love on you then your nurses would pick up where we left off and give you lots of attention. we think babies who've been through what you have deserve to be spoiled beyond reason=) so anyway you had a chest x-ray done that day and he said it looked good! that your smaller lung was growing-almost full size but not quite-and that the pocket of fluid that had always been at the bottom of your left chest cavity was gone=) he said the stoma (the skin around the hole where your trach goes) looked great but that he was concerned that you might not be getting enough attention-he wanted to make sure santa came to see you and such. he is silly=) he'll be the one to take out your trach, but he doesn't necessarily make the decision about when to do that. he said he couldn't say for sure with you (because he doesn't do the tests to see how your lungs are really doing) but that from his experience he would guess you'd need the trach for 6-9 months. that would mean you'd get it out between may and august. that is WAY earlier than mommy ever thought so i'm trying hard not to get excited about that. but that's kinda impossible. i was figuring 2-3 years, 2 if we were lucky, and i'm trying to keep my expectations there but i can't help but be excited about the possibility of this summer. wouldn't that be great sweet girl? oh i can't wait. we see the cardiologist and pulmonologist at the end of this month so we'll see then how your lungs and pulmonary hypertension are doing. all fingers will be kept crossed=) then we see dr rodgers again in april-he'll just do another checkup and also schedule a time for a bronchoscopy. he'll do that to check and see if any scar tissue has formed in your trachea that could potentially cause problems with your breathing once they took the trach out. he'll take any scar tissue out before he takes out your trach, but again we don't know when that will be. one day we'll leave you alone, i promise=) all we'll have for you is hugs and love and kisses and patty-cake and jump rope and only fun things. no more poking and prodding. soon enough my love=)
then we saw the gi (gastrointestinal) specialist this week. this is obviously a big issue for you sweet girl. you're 12 1/2 lbs and that's great! he was very pleased with how you were growing, but the issue is HOW you're getting your food. it's still all through the ng tube-and it seems like you like breastfeeding even less than you used to. i think you've successfully breastfed 2 times the whole time you've been home. i can tell that once you get any substantial amount of milk in your mouth you get upset and cough and choke on it a little bit. that's no good sweet baby. we've got to get you eating like normal...early intervention (they help with children up to 24 months who are disabled in any way) came to the house today and evaluated you for their services (education, speech therapy, occupational therapy, or physical therapy)-you definitely qualify because of all your gadgets and we decided occupational therapy was the most important because they help with feeding issues. we set some goals for you to work towards-mostly with things like getting milk in your mouth little by little, and also with holding you like superman in the air to simulate "tummy-time" and help you with your neck muscles. we sit you up sometimes and you do pretty well with holding your head up, but you still need a little extra help since we can't put you on your tummy too well. daddy loves the idea of holding you like superman. you two already started practicing after your bath tonight=)
i love you very much. you are the most fun. you are so happy and we are amazed by that every day. there are lots of things you're doing that early intervention was very impressed by! things like watching us walk across the room, or rolling from your back to your side and then to your back again, or focusing on whatever it is you've decided you're interested in, or how you get when we walk up and start playing with you-they call it "anticipatory excitement"-you start smiling really big and flapping your arms and kicking your legs around because you know you're about to get some attention-they like how you bring your hands to your mouth and how you reach out for toys and hold onto them and try to chew on those too...we think you're doing great sweet girl-we are so proud of you=)
mommy and daddy are still figuring out our new routine. we haven't gotten a nurse yet who quite works for us. just hasn't clicked yet for one reason or another. mommy sometimes feels really bad for saying no to people, but i have been reminded many times that i am your voice and your advocate and this is definitely a good time to be picky. so we are=) it's been working well though-daddy has arranged his classes and meetings and clients on two days a week, and then i work on 3 of the other nights during the week. i am lucky to be able to share you with such a great daddy, aren't i=) he lets mommy sleep as much as she needs and he loves you so much-i always heard how you fall more in love with your spouse when you see them with your child...it's cheesy and true sweet one. he gets so excited about you-he was in california for a conference a few weeks ago and when he got home i was just putting you down for bed. you were half asleep but when he started talking to you you woke right up=) you started smiling really big at him and that was the first time we really noticed you flapping your arms and legs around. it was the cutest thing-i have a video of it and we love watching it over and over. needless to say, you made your daddy's day=)
i was emailing with a friend the other day and his questions got me thinking about how i'm doing (like down deep) in this little journey of ours. i realized that i've been missing God lately-i will try to explain. there is absolutely no doubt whatsoever at any second of the day that He is very near to us and holding all three of us closely. i feel His warmth and comfort and security-but i just miss certain things. i want to say i miss growing and learning, but there's no doubt that i'm growing and learning more than ever before. i think what i mean is that i miss community fellowship and all the richness that comes from that, you know? we have dear sweet friends there and i miss connecting with them and the blessings God has for us when we invest and are invested in. we haven't quite figured out how to go to church or small group consistently-well i guess to be honest it's not that we haven't figured it out, it's just that i don't want to leave you. daddy is much more level-headed than me. we want to take turns going and so he goes when it's His turn, but i just have a hard time leaving. i pray that God will help mommy balance all the things in my life. you and daddy and i all need for me to do that. we'll all be better off if i can figure that out. a different family from the church brings us dinner on tuesdays and thursdays, and we love when they get to come in and see you and visit with us for a bit. again, it's just that little bit of connection with people we are living life with. mommy needs that. they are such precious people=)
but i wanted to show you some of what i wrote back to my friend i was emailing with. he asked how my heart was, and then was referencing the magnitude of having babies and what God shows us through the whole process (he and his sweet wife just had their first baby too). so this is what i said back to him...."yeah it's crazy huh? why in the world is He letting us in on this incredible thing? how is it that we get to share in that? webb [his son's name] is spectacular-it is no less unbelievable with healthy babies. but i have kept thinking over the last 5 months-why has He let us keep her? i have no idea. i am no doubt (this is such an obvious statement) nowhere near the parent that God would be to her if she were in heaven, yet He has blessed us beyond belief by letting us get to know her personality and her quirks and what her eyes look like when they light up and she laughs her silent laugh because the trach won't let her make noise. i can't believe any of it. i want to give Him a big hug and thank Him over and over. i love how mysterious He is, though. how i can't understand what He's doing, and how i know He's gonna keep it that way. it makes me feel tiny yet insanely significant at the same time..."...so that's basically a summary of how i'm feeling lately. mommy can get pretty anxious (i'm gonna go ahead and apologize for how that will bother you in the future-it bothers me too sweet girl) and it's so sweet how God will give me a little glimpse of the big picture sometimes and calm me down. Lord knows i need it=)
i love you sweet baby. grand-e-pa and big d (daddy's dad and grandpa) got here today. they drove up from georgia to play with you this weekend! it is their first grandchild and great-grandchild, so it is very precious to see them with you! so far you've thrown up on them a few times, and they've watched you get a bath and trach care-the three of you have had fun staring and smiling at each other=) it's funny how little it takes to entertain us when a sweet baby catherine is involved=)
it will be a great weekend-i can't wait to show you pictures=)
mommy
i'm sitting on our living room floor and you are laying next to me. you are snoozing and very sweet-you'll still smile in your sleep sometimes and i love it=) you've been home for over a month now and you've been very busy learning things and having first holidays...i guess it started out a little scary on christmas eve-we were changing your trach and it wouldn't go back in=( no fun for any of us sweet girl. but to make the story much less dramatic, i'll just say that we ended up putting the smaller one in and you were just fine after some snuggling and patting of your head=) a couple days later we went to the ER to see if they could get it back in but nobody could there either. they said some scar tissue had probably formed and it's just not gonna fit anymore. so now you have a trach without a cuff and you have a pretty big leak around it but you don't mind that. your surgeon said that if you tolerated that well, then he would rather you have the smaller one because it's basically just one step closer to getting rid of it. so after a little drama on christmas eve, you and your daddy and i had the most precious quiet christmas together. we watched movies and made chicken pot pie and opened the few presents we hadn't already opened (daddy has a habit of opening everything early-i'm not sure if you'll join him in that or help me get him to wait) and we thought about how thankful we were that you were here with us celebrating christmas=) then new year's weekend was fun because you got to meet some of your great grandparents. grandmama and papa came up with mommy's parents and there was lots of studying new faces and laying in laps and kisses and picture taking. it was a very sweet visit and i'm so glad you three got to meet each other. three more of your great grandparents are coming to see you over the next month-they are so excited sweet girl-it'll be lots of fun.
we went back to charlottesville last week to see the surgeon who fixed your diaphragm and put in your trach. his name is dr rodgers-and we love him so much. i can't remember if i already told you this, but he's very grandfatherly and we think he's so great. when you were in the hospital he used to pick on mommy by coming around every day saying daddy should hold you all the time because you did better in his arms, and he also wanted to make sure we weren't spoiling you too much;) he was always joking sweet girl. i think he knew that if we weren't there to love on you then your nurses would pick up where we left off and give you lots of attention. we think babies who've been through what you have deserve to be spoiled beyond reason=) so anyway you had a chest x-ray done that day and he said it looked good! that your smaller lung was growing-almost full size but not quite-and that the pocket of fluid that had always been at the bottom of your left chest cavity was gone=) he said the stoma (the skin around the hole where your trach goes) looked great but that he was concerned that you might not be getting enough attention-he wanted to make sure santa came to see you and such. he is silly=) he'll be the one to take out your trach, but he doesn't necessarily make the decision about when to do that. he said he couldn't say for sure with you (because he doesn't do the tests to see how your lungs are really doing) but that from his experience he would guess you'd need the trach for 6-9 months. that would mean you'd get it out between may and august. that is WAY earlier than mommy ever thought so i'm trying hard not to get excited about that. but that's kinda impossible. i was figuring 2-3 years, 2 if we were lucky, and i'm trying to keep my expectations there but i can't help but be excited about the possibility of this summer. wouldn't that be great sweet girl? oh i can't wait. we see the cardiologist and pulmonologist at the end of this month so we'll see then how your lungs and pulmonary hypertension are doing. all fingers will be kept crossed=) then we see dr rodgers again in april-he'll just do another checkup and also schedule a time for a bronchoscopy. he'll do that to check and see if any scar tissue has formed in your trachea that could potentially cause problems with your breathing once they took the trach out. he'll take any scar tissue out before he takes out your trach, but again we don't know when that will be. one day we'll leave you alone, i promise=) all we'll have for you is hugs and love and kisses and patty-cake and jump rope and only fun things. no more poking and prodding. soon enough my love=)
then we saw the gi (gastrointestinal) specialist this week. this is obviously a big issue for you sweet girl. you're 12 1/2 lbs and that's great! he was very pleased with how you were growing, but the issue is HOW you're getting your food. it's still all through the ng tube-and it seems like you like breastfeeding even less than you used to. i think you've successfully breastfed 2 times the whole time you've been home. i can tell that once you get any substantial amount of milk in your mouth you get upset and cough and choke on it a little bit. that's no good sweet baby. we've got to get you eating like normal...early intervention (they help with children up to 24 months who are disabled in any way) came to the house today and evaluated you for their services (education, speech therapy, occupational therapy, or physical therapy)-you definitely qualify because of all your gadgets and we decided occupational therapy was the most important because they help with feeding issues. we set some goals for you to work towards-mostly with things like getting milk in your mouth little by little, and also with holding you like superman in the air to simulate "tummy-time" and help you with your neck muscles. we sit you up sometimes and you do pretty well with holding your head up, but you still need a little extra help since we can't put you on your tummy too well. daddy loves the idea of holding you like superman. you two already started practicing after your bath tonight=)
i love you very much. you are the most fun. you are so happy and we are amazed by that every day. there are lots of things you're doing that early intervention was very impressed by! things like watching us walk across the room, or rolling from your back to your side and then to your back again, or focusing on whatever it is you've decided you're interested in, or how you get when we walk up and start playing with you-they call it "anticipatory excitement"-you start smiling really big and flapping your arms and kicking your legs around because you know you're about to get some attention-they like how you bring your hands to your mouth and how you reach out for toys and hold onto them and try to chew on those too...we think you're doing great sweet girl-we are so proud of you=)
mommy and daddy are still figuring out our new routine. we haven't gotten a nurse yet who quite works for us. just hasn't clicked yet for one reason or another. mommy sometimes feels really bad for saying no to people, but i have been reminded many times that i am your voice and your advocate and this is definitely a good time to be picky. so we are=) it's been working well though-daddy has arranged his classes and meetings and clients on two days a week, and then i work on 3 of the other nights during the week. i am lucky to be able to share you with such a great daddy, aren't i=) he lets mommy sleep as much as she needs and he loves you so much-i always heard how you fall more in love with your spouse when you see them with your child...it's cheesy and true sweet one. he gets so excited about you-he was in california for a conference a few weeks ago and when he got home i was just putting you down for bed. you were half asleep but when he started talking to you you woke right up=) you started smiling really big at him and that was the first time we really noticed you flapping your arms and legs around. it was the cutest thing-i have a video of it and we love watching it over and over. needless to say, you made your daddy's day=)
i was emailing with a friend the other day and his questions got me thinking about how i'm doing (like down deep) in this little journey of ours. i realized that i've been missing God lately-i will try to explain. there is absolutely no doubt whatsoever at any second of the day that He is very near to us and holding all three of us closely. i feel His warmth and comfort and security-but i just miss certain things. i want to say i miss growing and learning, but there's no doubt that i'm growing and learning more than ever before. i think what i mean is that i miss community fellowship and all the richness that comes from that, you know? we have dear sweet friends there and i miss connecting with them and the blessings God has for us when we invest and are invested in. we haven't quite figured out how to go to church or small group consistently-well i guess to be honest it's not that we haven't figured it out, it's just that i don't want to leave you. daddy is much more level-headed than me. we want to take turns going and so he goes when it's His turn, but i just have a hard time leaving. i pray that God will help mommy balance all the things in my life. you and daddy and i all need for me to do that. we'll all be better off if i can figure that out. a different family from the church brings us dinner on tuesdays and thursdays, and we love when they get to come in and see you and visit with us for a bit. again, it's just that little bit of connection with people we are living life with. mommy needs that. they are such precious people=)
but i wanted to show you some of what i wrote back to my friend i was emailing with. he asked how my heart was, and then was referencing the magnitude of having babies and what God shows us through the whole process (he and his sweet wife just had their first baby too). so this is what i said back to him...."yeah it's crazy huh? why in the world is He letting us in on this incredible thing? how is it that we get to share in that? webb [his son's name] is spectacular-it is no less unbelievable with healthy babies. but i have kept thinking over the last 5 months-why has He let us keep her? i have no idea. i am no doubt (this is such an obvious statement) nowhere near the parent that God would be to her if she were in heaven, yet He has blessed us beyond belief by letting us get to know her personality and her quirks and what her eyes look like when they light up and she laughs her silent laugh because the trach won't let her make noise. i can't believe any of it. i want to give Him a big hug and thank Him over and over. i love how mysterious He is, though. how i can't understand what He's doing, and how i know He's gonna keep it that way. it makes me feel tiny yet insanely significant at the same time..."...so that's basically a summary of how i'm feeling lately. mommy can get pretty anxious (i'm gonna go ahead and apologize for how that will bother you in the future-it bothers me too sweet girl) and it's so sweet how God will give me a little glimpse of the big picture sometimes and calm me down. Lord knows i need it=)
i love you sweet baby. grand-e-pa and big d (daddy's dad and grandpa) got here today. they drove up from georgia to play with you this weekend! it is their first grandchild and great-grandchild, so it is very precious to see them with you! so far you've thrown up on them a few times, and they've watched you get a bath and trach care-the three of you have had fun staring and smiling at each other=) it's funny how little it takes to entertain us when a sweet baby catherine is involved=)
it will be a great weekend-i can't wait to show you pictures=)
mommy
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 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 Saturday, December 6, 2008
thursday=)
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.
mommy
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=)
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