hi sweet girl!!!
it's november 27-happy thanksgiving=) guess what we're thankful for this year...?? =)
you have the cutest dress to wear today. it's brown with a turkey on it and it says catherine underneath. so cute. our friend christi dorsey made it for us-i know her from high school and she has the sweetest heart and has taken a liking to you my girl=) she sends you all kinds of pretty girly things and could quite possibly take full credit for earning you the title of most stylish baby in the nicu. i'm actually not kidding=) everyone comes by your bed saying how fashionable you are and what cute clothes you have. even a man doctor yesterday commented on your brown sleeper with polka dots on it! i'll have to show you all these outfits when you're older. you'll laugh i'm sure=) during rounds yesterday we spent a good portion of the time talking about your clothes and burp cloths and blankets-how coordinated you are and how people wish christi would make things for their children. i love it=)
so the other part of rounds has been spent talking about what's been going on with you. you're still doing well with your trach. they have you on a continuous CO2 monitor and it's been staying nice and low. they're still giving you more time on the laptop ventilator each day to see if you're ready to go home on it. the bigger problem lately has been with you eating and all your insides related to that. your skin and the whites of your eyes started looking yellow last week so we checked out your liver and other organs. the labs on your liver were off, but it looked ok by ultrasound. but your gall bladder looked "sludgy". this means that it just has gunk blocking the ducts. they say this happened probably because you got septic and had a flare-up of pulmonary hypertension, and that it will get better as you eat more and they can also start you on some medicine for it soon. you started throwing up a lot (more than you used to) and they stopped your feeds then spent about a week bringing you back up to your limit of 55-60cc (that's where you start throwing up) every 3 hours. they are now fortifying that to give it a higher caloric content and then at night they're going to feed you continuously. hopefully this will meet your fluid and caloric needs and help you grow like you need to. i've been trying to not get too discouraged, but it's been super hard for you to breastfeed. every now and then you will, and yesterday you even breastfed for 20 minutes! i was so excited. they said that up until 2 months of age that eating is a reflex, but after that it turns into a learned skill and you are working pretty hard to learn it again. you're doing great sucking on your pacifier, so that's good. it's just that if you get too much milk in your mouth you get a little scared and gag and you're also not always sure what to do with your tongue. it takes a while to get your suck coordinated, but once you get there you do great. we'll get it sweet girl. they might let you come home with an ng tube (nasogastric-goes in your nose to your tummy) and let me feed you that way. your reflux is still raging so we might have to be creative with how we feed you until that gets better. no problem=)
daddy and i have been doing your "trach care" which means we clean your trach and change out the gauze pads and ties that hold it down and all that stuff. it was super intimidating at first, but it's slowly becoming more normal and natural for us. have i told you how scared i've always been of trachs? even in nursing school in the skills lab i always avoided the dummy (dummy=the pretend person we practice on) with the trach. i didn't even want to have anything to do with trachs then. so we saw the first trach change sunday. that's absolutely terrifying-i'm not gonna lie. you're crying while it's being taken out so we heard for a split second your little voice and your little juices come out of the trach hole-i know it sounds kinda gross and i'm sorry about that. i just want you to know one day what all you conquered. you're the strongest little lady i've ever met=)
you are getting cuter and cuter. we had the sweetest afternoon together yesterday. you were looking up at me and smiling more than ever before. that made me feel so happy because lately i feel like all i do is bother you by trying to stick things in your mouth and make you drink. i'm sorry for that, sweet girl. one day you'll like it i'm sure. but today you sat in my lap and played with your toys, so content to concentrate on holding them. we're working with you on reaching out for things and holding them with both hands to help you transfer them from one hand to the other soon. you're doing great=) it's gonna be a little harder for you to meet your developmental milestones on time, so we'll work extra hard and you'll get it. i'd say you have pretty good reason to take your time, so we'll be in no rush either=)
so i wanted to tell you a little about something more serious that's been going on with mommy. my world has been rocked a little when it comes to the topic of prayer. i'm a little confused about it to be honest. i don't like being confused about that. i've always thought that God just simply wants us to be in constant communication with Him, and that's why He wants us to pray. i still think that. i love that it builds our relationship with Him. the whole analogy about how we get closer to our friends and family when we talk with them, and that applying to our relationship with God too. i still think it's true. and now i just think more about if there's more to it, if He really answers our prayers or if He'll do what He's gonna do anyway. if our prayers really make a difference in the outcome of a situation or not, or if He's just inviting us to be a part of it. i sometimes feel horrible for thinking these things, but i really think it's ok, and i still covet the prayers of our friends and family who are praying so hard for you. i hope they never stop. i think God probably likes it that i'm questioning these things, because in the end i'm pretty sure it will deepen my relationship with Him. i don't doubt the importance of prayer throughout all this, i just question the complexity of its purpose sometimes. just as always, i sense Him close throughout all my questioning and confusion. that He doesn't mind at all, and that He's smiling sweetly at me and holding my hand gently. giving me a gentle squeeze when i need it. i tell you these things because i want you to know it's ok when you question things like this. He will smile and squeeze you gently too. and in the end you will know Him better=)
guess what? some people are starting to say that you look like me every now and then. the same doctor who reaches down into your diaper bags and pulls out all your cute clothes also says that your profile looks like daddy, but you look like me from straight on. some other nurses come by and say that you're looking more like me too. i don't know why parents want their children to look like them. i can't quite figure that out-you're beautiful and it would obviously be a compliment to hear that you look like me, but i guess it also would just make you feel more "mine". i don't know. makes no sense. but anyway i think they're just trying to make me happy by saying you look like me. i probably shouldn't believe them, but i'll buy it anyway=) either way, you are gorgeous. we stand there staring at you while you sleep. that'll make you laugh one day probably.
i love you sweet baby=)
mommy
Wednesday, November 26, 2008
Wednesday, November 12, 2008
success=)
hi sweet baby!
so you did great yesterday getting your trach. i had worked the night before and uva let me stay in one of their "room-in rooms" yesterday and last night, so i could sleep while you were in surgery and be close to you while you recovered. well after i dropped you off in the OR, i went back to the room and didn't even have time to fall asleep before they came and got me! you were already back up in the nicu and the surgery took no time at all! i'm very proud of you for behaving=) yesterday you had a nurse who loves you so much. she told me how she walked into the OR and saw your smiling face up on this big screen because the camera was on you. and they were trying to give you gas to make you fall asleep before they started but you just kept looking around the OR at everybody=) you have quite the tolerance to medication! still-you're super cute and i wish i could've seen it. anyway, i went into the nicu to see you, and had a little mini-panic before i rounded the corner to your bed. i had definitely gotten on board with the trach, but all of a sudden it hit me that this is what i had been dreading for so long and even though i knew it was the best thing for you, i was just a little big afraid of what i was going to see. so for about 5 minutes it was a little hard to see you with this thing sticking out of your neck. i laugh at myself for writing that because it couldn't be worse than seeing two big red cannulas coming out of your neck pumping your in and out of your body while you were on ecmo=) still, it was just hard seeing you breastfeeding two weeks ago and now you have a trach. anyway, i got over it in 5 minutes=) you slept all day yesterday and last night, and a lot of today. at first you would wake up a little tiny bit and seem a little grumpy about it. daddy and i figured you were thinking something like "oh great-i fall asleep for 30 minutes and look what they do to me!"...you're a trooper sweet . but today you really woke up. you were so alert and looking around and flapping those arms and kicking your legs and you were very happy. i can't begin to tell you how much that made my heart rest. i was so afraid you were going to be furious angry when you woke up with something stuck in your throat. you actually seem much more relaxed than when you were intubated. you're not coughing as much as you were before. and you really seem to like having your mouth free. i got you your own chapstick today and it's cherry flavored. now i have to go buy myself some of the same kind because it will remind me of you=) you seem to like that too-you start licking your lips as soon as i start putting it on you. you are the cutest baby i can't even stand it. we love seeing your whole face-your friends in the nicu all come by and say how pretty it is and how glad they are to see it. you are quite popular=)
so the plan is to let your throat and neck get used to the trach for 7 days, and then dr rogers, your surgeon (and one of my favorite people) will change the trach out for the first time. that gives you time to "epithelialize" it which basically means your skin will grow to it a little and stop the leak that you currently have there. then they will start teaching mommy and daddy how to do that ourselves, because we'll do it once a week once you're home. they'll teach us how to clean it and how to suction you through it. lots of things to learn. but then they are planning to transfer you to chippenham at the end of next week or the beginning of thanksgiving week. then you'll just scoot yourself along until you can come home with us. i've been told lots of different things about when you might come home-one person said by christmas, one person said 2-4 weeks, and one person said maybe january if you do everything right. who knows. but that's the plan=)
i love you sweet baby-i'll go back in and play with you a little now before i go and do your laundry-one of my new favorite things=)
mommy
so you did great yesterday getting your trach. i had worked the night before and uva let me stay in one of their "room-in rooms" yesterday and last night, so i could sleep while you were in surgery and be close to you while you recovered. well after i dropped you off in the OR, i went back to the room and didn't even have time to fall asleep before they came and got me! you were already back up in the nicu and the surgery took no time at all! i'm very proud of you for behaving=) yesterday you had a nurse who loves you so much. she told me how she walked into the OR and saw your smiling face up on this big screen because the camera was on you. and they were trying to give you gas to make you fall asleep before they started but you just kept looking around the OR at everybody=) you have quite the tolerance to medication! still-you're super cute and i wish i could've seen it. anyway, i went into the nicu to see you, and had a little mini-panic before i rounded the corner to your bed. i had definitely gotten on board with the trach, but all of a sudden it hit me that this is what i had been dreading for so long and even though i knew it was the best thing for you, i was just a little big afraid of what i was going to see. so for about 5 minutes it was a little hard to see you with this thing sticking out of your neck. i laugh at myself for writing that because it couldn't be worse than seeing two big red cannulas coming out of your neck pumping your in and out of your body while you were on ecmo=) still, it was just hard seeing you breastfeeding two weeks ago and now you have a trach. anyway, i got over it in 5 minutes=) you slept all day yesterday and last night, and a lot of today. at first you would wake up a little tiny bit and seem a little grumpy about it. daddy and i figured you were thinking something like "oh great-i fall asleep for 30 minutes and look what they do to me!"...you're a trooper sweet . but today you really woke up. you were so alert and looking around and flapping those arms and kicking your legs and you were very happy. i can't begin to tell you how much that made my heart rest. i was so afraid you were going to be furious angry when you woke up with something stuck in your throat. you actually seem much more relaxed than when you were intubated. you're not coughing as much as you were before. and you really seem to like having your mouth free. i got you your own chapstick today and it's cherry flavored. now i have to go buy myself some of the same kind because it will remind me of you=) you seem to like that too-you start licking your lips as soon as i start putting it on you. you are the cutest baby i can't even stand it. we love seeing your whole face-your friends in the nicu all come by and say how pretty it is and how glad they are to see it. you are quite popular=)
so the plan is to let your throat and neck get used to the trach for 7 days, and then dr rogers, your surgeon (and one of my favorite people) will change the trach out for the first time. that gives you time to "epithelialize" it which basically means your skin will grow to it a little and stop the leak that you currently have there. then they will start teaching mommy and daddy how to do that ourselves, because we'll do it once a week once you're home. they'll teach us how to clean it and how to suction you through it. lots of things to learn. but then they are planning to transfer you to chippenham at the end of next week or the beginning of thanksgiving week. then you'll just scoot yourself along until you can come home with us. i've been told lots of different things about when you might come home-one person said by christmas, one person said 2-4 weeks, and one person said maybe january if you do everything right. who knows. but that's the plan=)
i love you sweet baby-i'll go back in and play with you a little now before i go and do your laundry-one of my new favorite things=)
mommy
Monday, November 10, 2008
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
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
Friday, October 31, 2008
change of plans...
hi sweet catherine-
so your insides were not doing as well as your outsides were leading us to believe...monday they did another echo and found that your pulmonary hypertension was still pretty severe and the right side of your heart was a litle hypertrophied. however, you still appeared to be tolerating the nasal cannula really well, so tuesday they decided to put you only on nasal cannula, without going back and forth to cpap. but tuesday night, after about 14 hours on nasal cannula, you started to drop your sats (you couldn't keep your body oxygenated well) and they put you back on cpap. then throughout the night you were still struggling to breathe and they increased the pressure you were receiving from it. so wednesday they did some more tests-found that your CO2 in your was still high (meaning you couldn't ventilate very well) and that the BNP (brain natriuretic peptide-indicates heart failure) was almost 1800 (normal is around 50=(). so this meant that basically you did a great job of pushing through some of the stuff that was harder for you, but your body was getting to the point that it couldn't do it anymore. so you were working harder to breathe, your CO2 was increasing, your pulmonary hypertension was high again, and the right side of your heart was starting to fail as a result of it. and all of these things work together as a vicious cycle and make each other worse. so they started talking about putting you back on the ventilator to see if that helped get the CO2 off, decrease your work of breathing, and therefore hopefully help the pulmonary hypertension and help your heart. then if the ventilator did help those things, we would probably move to getting you a trach in the next week or two for long-term ventilation. remember how mommy was so scared of a trach? the nurses and respiratory therapists sat down with me throughout that day and talked all about other sweet children who have had trachs and have done so well and thrived and run around playing like it's nothing=) point being: i feel much better about you having a trach and i'm kind of to the point where i just want to do it and get on with you getting used to it and us learning how to take care of you with it. you would get to go home with it (the doctor said it would be "from weeks to months" that you would need it) and breastfeed with it and do all kinds of normal baby things. so i'm ready=) i hope you are too sweet . they did end up intubating you again yesterday and so far the ventilator and nitric oxide is helping you a lot. the gases are much better, you are obviously not working so hard to breathe, the echo of your heart showed decreased pressures meaning the pulmonary hypertension is getting a little better, etc...so it is helping. and that means we are likely to get you a trach pretty soon sweet . we can do it. yesterday you were a little grumpy about the tube being down your throat and the nurses and doctors were trying very hard to find a good balance of sedation medicine for you. i think they've found it because today you've been a very happy -taking naps here and there and while you're awake you've just been looking at me and even smiling a little around that little tube=) you've gotten a little puffy again-you got a transfusion yesterday and a lot of iv fluids so that makes sense. you are still the cutest baby i've ever seen=) your oxygen saturation monitor is on your hand and you keep holding that hand in front of your face because it has a little red light on it that you like to look at. it's very cute=) it's great for mommy to see you still exploring your little world even when you have a machine breathing for you. it's crazy too. yesterday you and i were both sitting there crying while we looked at each other-you because you were grumpy about the tube i'm sure, and me because it's so sad to have seen you breastfeeding and doing all sorts of normal baby things last week and then now you're back on a ventilator. and i seeing you upset. but we were being buddies, you and me. keeping each other company and telling each other it would be ok. that's what i imagined you were telling me, at least=)
so this obviously pushes everything back a little. you will clearly not be home in a few weeks. you will also not be transferred to chippenham next week like we originally thought. it will take maybe another month to get you there-they just want to get a good handle on what's going on with you and what the best plan is to help you. and mommy has to go back to work. i will miss you so much sweet . i'm starting to cry a little just thinking about it as i type. but we'll make it, won't we=) i love you so much sweet baby-you are my favorite little person to play with and i'll go back in the nicu now to rub your sweet head=)
mommy
ps-daddy has been missing you so much this week-he's been sick and has made himself stay away from the nicu. he'll be back soon to sing to you some more and call you buddy=)
so your insides were not doing as well as your outsides were leading us to believe...monday they did another echo and found that your pulmonary hypertension was still pretty severe and the right side of your heart was a litle hypertrophied. however, you still appeared to be tolerating the nasal cannula really well, so tuesday they decided to put you only on nasal cannula, without going back and forth to cpap. but tuesday night, after about 14 hours on nasal cannula, you started to drop your sats (you couldn't keep your body oxygenated well) and they put you back on cpap. then throughout the night you were still struggling to breathe and they increased the pressure you were receiving from it. so wednesday they did some more tests-found that your CO2 in your was still high (meaning you couldn't ventilate very well) and that the BNP (brain natriuretic peptide-indicates heart failure) was almost 1800 (normal is around 50=(). so this meant that basically you did a great job of pushing through some of the stuff that was harder for you, but your body was getting to the point that it couldn't do it anymore. so you were working harder to breathe, your CO2 was increasing, your pulmonary hypertension was high again, and the right side of your heart was starting to fail as a result of it. and all of these things work together as a vicious cycle and make each other worse. so they started talking about putting you back on the ventilator to see if that helped get the CO2 off, decrease your work of breathing, and therefore hopefully help the pulmonary hypertension and help your heart. then if the ventilator did help those things, we would probably move to getting you a trach in the next week or two for long-term ventilation. remember how mommy was so scared of a trach? the nurses and respiratory therapists sat down with me throughout that day and talked all about other sweet children who have had trachs and have done so well and thrived and run around playing like it's nothing=) point being: i feel much better about you having a trach and i'm kind of to the point where i just want to do it and get on with you getting used to it and us learning how to take care of you with it. you would get to go home with it (the doctor said it would be "from weeks to months" that you would need it) and breastfeed with it and do all kinds of normal baby things. so i'm ready=) i hope you are too sweet . they did end up intubating you again yesterday and so far the ventilator and nitric oxide is helping you a lot. the gases are much better, you are obviously not working so hard to breathe, the echo of your heart showed decreased pressures meaning the pulmonary hypertension is getting a little better, etc...so it is helping. and that means we are likely to get you a trach pretty soon sweet . we can do it. yesterday you were a little grumpy about the tube being down your throat and the nurses and doctors were trying very hard to find a good balance of sedation medicine for you. i think they've found it because today you've been a very happy -taking naps here and there and while you're awake you've just been looking at me and even smiling a little around that little tube=) you've gotten a little puffy again-you got a transfusion yesterday and a lot of iv fluids so that makes sense. you are still the cutest baby i've ever seen=) your oxygen saturation monitor is on your hand and you keep holding that hand in front of your face because it has a little red light on it that you like to look at. it's very cute=) it's great for mommy to see you still exploring your little world even when you have a machine breathing for you. it's crazy too. yesterday you and i were both sitting there crying while we looked at each other-you because you were grumpy about the tube i'm sure, and me because it's so sad to have seen you breastfeeding and doing all sorts of normal baby things last week and then now you're back on a ventilator. and i seeing you upset. but we were being buddies, you and me. keeping each other company and telling each other it would be ok. that's what i imagined you were telling me, at least=)
so this obviously pushes everything back a little. you will clearly not be home in a few weeks. you will also not be transferred to chippenham next week like we originally thought. it will take maybe another month to get you there-they just want to get a good handle on what's going on with you and what the best plan is to help you. and mommy has to go back to work. i will miss you so much sweet . i'm starting to cry a little just thinking about it as i type. but we'll make it, won't we=) i love you so much sweet baby-you are my favorite little person to play with and i'll go back in the nicu now to rub your sweet head=)
mommy
ps-daddy has been missing you so much this week-he's been sick and has made himself stay away from the nicu. he'll be back soon to sing to you some more and call you buddy=)
Saturday, October 25, 2008
baby shower
hi sweet catherine=)
our church threw a baby shower for you today. daddy and i went in your place since you're still in the hospital=) these people are so incredible-i can't wait for you to meet them. they love you so much and are so invested in your amazing little life-they pray for you fervently and passionately-they are so excited about the way God is working in and through you. you are very special to them. i loved them already, but that makes me love them even more. daddy and i got to share what's been on our hearts lately-what God has been teaching us during this little journey with you-how to pray for all three of us better. they allow us to be authentic with them and we appreciate that. mommy gains so much from people letting me be vulnerable with them-that might be kind of weird, i'm not sure, but that's how i've always been. the strange thing is that, i haven't been able to be at church many sundays over the last year because of work and school, so i feel like i don't know them nearly as well as i want to. but they know us=) and i'm so thankful for that. they have dedicated themselves to intercede on our behalf faithfully and all the way through to meeting you face to face one sunday=) i can't wait for the three of us to get to know all of them better. they gave you lots of pretty and fun things. you will have fun playing with your new toys, and mommy will have fun playing dress up with you in all the new pink and frilly outfits=) there is a wonderful something about the body of Christ that strengthens us and refreshes us-the three of us (you, me, and daddy) are lucky to have them. they are waiting to welcome you with open arms=)
so guess what??? =)=)=) i came in a little early to the hospital this morning to see you before the shower and the doctors were crowded around your bed. this is called "rounds". that means they're just discussing you and what's going on with you, what the plan is, etc...and when i walked up your nurse was holding you (at which point you saw me and kept watching me stand there-i loved it even though i'm not really sure if you can actually see that far yet;)) and she had a big smile on her face. so i looked at the doctor and she basically told me that you were surprising them with how well you're doing-specifically with nasal cannula trials (they get longer every day) and with breastfeeding. and she said that they were still talking to the insurance company and with chippenham to see if it would work out to transfer you, BUT that if you continued on this trajectory that in 10 days they'd be talking about sending you home instead of just to a hospital closer to home. WHAT!!!!! we couldn't believe it. i just was trying not to cry as she told me all this and i kept looking at you with your bright eyes wide awake and touching your cheek and listening to her and trying to believe it all-it felt a little like a dream. of course there could be setbacks that change this plan, but we just pray against those and that you will continue to improve every day. so anyway you would go home on a nasal cannula with a little oxygen tank and an oxygen saturation monitor. we can handle that, can't we??? i can't even imagine really having you in your little crib. so they left and i started feeding you and looking out the window, and i started remembering a conversation i had with one of your nurses a week or two ago. we were talking about praying specifically and she was saying how she prays specifically for your lung function-your alveoli-and for your pulmonary hypertension to heal. i was talking about how i still pray a "bold" prayer-you know-one of those that would seriously take an absolute miracle to happen-that you would be able to come home by the time i had to go back to work even though at the time it looked absolutely nothing like that could possibly happen. i just wanted to keep praying it. and sitting there feeding you looking out the window i suddenly realized that God might be answering that prayer. so then i started crying a little=) He is so sweet to us. even if that doesn't happen sweet -even if there is another setback or two and you're here longer than we hope-He is still good. i've been a little bothered lately by how i feel "close" to God when things are going well with you-i feel happy with Him and warm and fuzzy and cozy. but when you get septic or have a bad day, i feel cold with Him and further away and mad. i that. what is that anyway? He doesn't change at all when you have good or bad days. i feel like those things indicate a very immature relationship with Him, and i don't want that. i suppose it's fairly human to feel like that sometimes. i am so thankful that i've been able to at least acknowledge that He's still ultimately the best good we could ever have or dream of and that He is taking such good care of us-and that He loves you even more than daddy or i ever will. but i'm a little embarassed sometimes at how my "feelings" for Him wax and wane according to what kind of day you're having. i hope that changes. or maybe it's ok for it not to change. i don't know=) mommy is quite a "feely" person-very driven by emotions-(again-not a great trait to have!) but i'm thinking that has a lot to do with this tug-of-war with God lately. i feel Him smiling on us and i'm so thankful for that. He smiles at me even when i am boggly in my head. i can't wait for Him to show these things to you sweet love=)
when we got back to you tonight i couldn't quit staring at you. you look so peaceful in your little crib there with your jungle buddies flying around in a circle above your head to the tune of bach or beethoven (whatever the mobile is playing at the time...) you're absolutely beautiful and i just sat there in the chair taking you in. you are our heart pretty baby=)
i love you-
mommy
our church threw a baby shower for you today. daddy and i went in your place since you're still in the hospital=) these people are so incredible-i can't wait for you to meet them. they love you so much and are so invested in your amazing little life-they pray for you fervently and passionately-they are so excited about the way God is working in and through you. you are very special to them. i loved them already, but that makes me love them even more. daddy and i got to share what's been on our hearts lately-what God has been teaching us during this little journey with you-how to pray for all three of us better. they allow us to be authentic with them and we appreciate that. mommy gains so much from people letting me be vulnerable with them-that might be kind of weird, i'm not sure, but that's how i've always been. the strange thing is that, i haven't been able to be at church many sundays over the last year because of work and school, so i feel like i don't know them nearly as well as i want to. but they know us=) and i'm so thankful for that. they have dedicated themselves to intercede on our behalf faithfully and all the way through to meeting you face to face one sunday=) i can't wait for the three of us to get to know all of them better. they gave you lots of pretty and fun things. you will have fun playing with your new toys, and mommy will have fun playing dress up with you in all the new pink and frilly outfits=) there is a wonderful something about the body of Christ that strengthens us and refreshes us-the three of us (you, me, and daddy) are lucky to have them. they are waiting to welcome you with open arms=)
so guess what??? =)=)=) i came in a little early to the hospital this morning to see you before the shower and the doctors were crowded around your bed. this is called "rounds". that means they're just discussing you and what's going on with you, what the plan is, etc...and when i walked up your nurse was holding you (at which point you saw me and kept watching me stand there-i loved it even though i'm not really sure if you can actually see that far yet;)) and she had a big smile on her face. so i looked at the doctor and she basically told me that you were surprising them with how well you're doing-specifically with nasal cannula trials (they get longer every day) and with breastfeeding. and she said that they were still talking to the insurance company and with chippenham to see if it would work out to transfer you, BUT that if you continued on this trajectory that in 10 days they'd be talking about sending you home instead of just to a hospital closer to home. WHAT!!!!! we couldn't believe it. i just was trying not to cry as she told me all this and i kept looking at you with your bright eyes wide awake and touching your cheek and listening to her and trying to believe it all-it felt a little like a dream. of course there could be setbacks that change this plan, but we just pray against those and that you will continue to improve every day. so anyway you would go home on a nasal cannula with a little oxygen tank and an oxygen saturation monitor. we can handle that, can't we??? i can't even imagine really having you in your little crib. so they left and i started feeding you and looking out the window, and i started remembering a conversation i had with one of your nurses a week or two ago. we were talking about praying specifically and she was saying how she prays specifically for your lung function-your alveoli-and for your pulmonary hypertension to heal. i was talking about how i still pray a "bold" prayer-you know-one of those that would seriously take an absolute miracle to happen-that you would be able to come home by the time i had to go back to work even though at the time it looked absolutely nothing like that could possibly happen. i just wanted to keep praying it. and sitting there feeding you looking out the window i suddenly realized that God might be answering that prayer. so then i started crying a little=) He is so sweet to us. even if that doesn't happen sweet -even if there is another setback or two and you're here longer than we hope-He is still good. i've been a little bothered lately by how i feel "close" to God when things are going well with you-i feel happy with Him and warm and fuzzy and cozy. but when you get septic or have a bad day, i feel cold with Him and further away and mad. i that. what is that anyway? He doesn't change at all when you have good or bad days. i feel like those things indicate a very immature relationship with Him, and i don't want that. i suppose it's fairly human to feel like that sometimes. i am so thankful that i've been able to at least acknowledge that He's still ultimately the best good we could ever have or dream of and that He is taking such good care of us-and that He loves you even more than daddy or i ever will. but i'm a little embarassed sometimes at how my "feelings" for Him wax and wane according to what kind of day you're having. i hope that changes. or maybe it's ok for it not to change. i don't know=) mommy is quite a "feely" person-very driven by emotions-(again-not a great trait to have!) but i'm thinking that has a lot to do with this tug-of-war with God lately. i feel Him smiling on us and i'm so thankful for that. He smiles at me even when i am boggly in my head. i can't wait for Him to show these things to you sweet love=)
when we got back to you tonight i couldn't quit staring at you. you look so peaceful in your little crib there with your jungle buddies flying around in a circle above your head to the tune of bach or beethoven (whatever the mobile is playing at the time...) you're absolutely beautiful and i just sat there in the chair taking you in. you are our heart pretty baby=)
i love you-
mommy
Monday, October 20, 2008
Sunday, October 19, 2008
2 months=)
catherine-
happy 2 month birthday sweet girl! you now weigh 9 pounds and 5 ounces. growing and growing, just like you should=) today was one of the sweetest days i've had with you so far. we hung out with you all day and you were awake and alert and content for almost all of it! you took your little naps here and there, but for the most part you just looked at us and we talked to you and told you all about our day and what's been going on around you in the nicu. daddy even carried you over to the window next to your bed and showed you what it looks like outside. it was beautiful out there with the leaves changing colors. it's what i call a "katie day" which means the sky was bright blue with absolutely no clouds. we'll have fun playing together on those kinds of days. we'll also have fun stomping in big puddles when it rains=) lately you've been smiling a lot in your sleep, and we have fun speculating what's making you do that...angel kisses, sweet dreams...all of your nurses have different opinions=) but guess what you did today! it was the first time you smiled at me on purpose while you were awake and alert and looking back at me! i loved it. i started crying a little. it was the most precious moment. we took lots of pictures of you to celebrate your 2 month birthday. i got some developed and brought them back to the hospital to show your nurses and they all loved them so much. they smiled and laughed and said "aaaaaw" a lot when they were looking at the pictures. so many people comment on your facial expressions-you make a lot of them and they make us so happy!!! you put one eyebrow up and stare intently at whoever is talking to you. or sometimes you look so concerned about something or another (i wish you could tell us!). and sometimes you just wiggle your arms and legs around and look up at us while we're talking to you with bright happy eyes and your mouth open like you want to talk back so bad! i can't wait till you can and you can tell us all about everything.
you started nasal cannula trials again a few days ago. you've been doing great sweet girl=) you've been slowly getting back into breastfeeding and improving little by little each day. we've been talking to your doctors about you being transferred back to chippenham (the hospital where you were born and where mommy works) because mommy has to go back to work full time in a few weeks. i can't have you here in charlottesville and me there in richmond half the week! that would be no good for either of us. but mommy's a little nervous about sending you back. i am fully confident you will get great care-the nicu nurses and doctors there are fantastic and it will obviously be so great for you to be so close while i'm at work (and at home-we live 7 minutes away from the hospital!). but here's a secret-mommy's a little anxious by nature and i just get nervous about moving you and changing things and people not knowing all your little quirks. we will also miss all our new friends at uva, won't we? no worries sweet one-we'll come back and visit. and i think you will like it at chippenham. these people have loved you for a while now-some before you even came out of my tummy, and sometimes they ask me when you're coming back to them=) you can do it my sweet girl. it's just a little change, and you are tough and resilient and i know you'll be just fine.
here are some of the pictures we took. you get more and more beautiful each day. we sit there and stare at you while you're sleeping and we just can't get enough of you. you are our joy precious girl=)
i love you-
mommy
happy 2 month birthday sweet girl! you now weigh 9 pounds and 5 ounces. growing and growing, just like you should=) today was one of the sweetest days i've had with you so far. we hung out with you all day and you were awake and alert and content for almost all of it! you took your little naps here and there, but for the most part you just looked at us and we talked to you and told you all about our day and what's been going on around you in the nicu. daddy even carried you over to the window next to your bed and showed you what it looks like outside. it was beautiful out there with the leaves changing colors. it's what i call a "katie day" which means the sky was bright blue with absolutely no clouds. we'll have fun playing together on those kinds of days. we'll also have fun stomping in big puddles when it rains=) lately you've been smiling a lot in your sleep, and we have fun speculating what's making you do that...angel kisses, sweet dreams...all of your nurses have different opinions=) but guess what you did today! it was the first time you smiled at me on purpose while you were awake and alert and looking back at me! i loved it. i started crying a little. it was the most precious moment. we took lots of pictures of you to celebrate your 2 month birthday. i got some developed and brought them back to the hospital to show your nurses and they all loved them so much. they smiled and laughed and said "aaaaaw" a lot when they were looking at the pictures. so many people comment on your facial expressions-you make a lot of them and they make us so happy!!! you put one eyebrow up and stare intently at whoever is talking to you. or sometimes you look so concerned about something or another (i wish you could tell us!). and sometimes you just wiggle your arms and legs around and look up at us while we're talking to you with bright happy eyes and your mouth open like you want to talk back so bad! i can't wait till you can and you can tell us all about everything.
you started nasal cannula trials again a few days ago. you've been doing great sweet girl=) you've been slowly getting back into breastfeeding and improving little by little each day. we've been talking to your doctors about you being transferred back to chippenham (the hospital where you were born and where mommy works) because mommy has to go back to work full time in a few weeks. i can't have you here in charlottesville and me there in richmond half the week! that would be no good for either of us. but mommy's a little nervous about sending you back. i am fully confident you will get great care-the nicu nurses and doctors there are fantastic and it will obviously be so great for you to be so close while i'm at work (and at home-we live 7 minutes away from the hospital!). but here's a secret-mommy's a little anxious by nature and i just get nervous about moving you and changing things and people not knowing all your little quirks. we will also miss all our new friends at uva, won't we? no worries sweet one-we'll come back and visit. and i think you will like it at chippenham. these people have loved you for a while now-some before you even came out of my tummy, and sometimes they ask me when you're coming back to them=) you can do it my sweet girl. it's just a little change, and you are tough and resilient and i know you'll be just fine.
here are some of the pictures we took. you get more and more beautiful each day. we sit there and stare at you while you're sleeping and we just can't get enough of you. you are our joy precious girl=)
i love you-
mommy
sweet catherine=)
inquisitive...this is what you do with your eyebrow...you look skeptical=)
sleepy girl
this one was taken a few days ago...you were smiling in your sleep=) i love it.
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