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

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

more pictures...

i love your eyelashes=)

pretty girl.

smiling at mommy. making her day=)

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=)

Happy Thanksgiving!

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

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

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

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=)

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

fixed video

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

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.

cutie

catherine-

hi sweet girl=) look at this! you are so precious. this was a little over a week ago when you were on nasal cannula trials. we love how curious you are=) you look so intently at us when we talk to you-like you want so badly to understand us. one day=) you're doing better sweet baby. yesterday morning they were able to take you off the ventilator and put you back on cpap. this time they let me hold you while they extubated and that kept you calm. they also had given you steroids to help decrease the swelling in your throat. all those things worked well my girl=)

you've done great back on cpap. great blood gases and breathing easily. sometimes you get super angry-it makes your daddy laugh a little-he doesn't like that you're upset, but he does like that you're showing your little temper=) it makes me sad sweet girl, to see you like that. i like that you're feisty-that's probably helping you out a little right now-but it doesn't seem like you. what seems like you is when you've got those big beautiful eyes open and you're looking all around. the truth is probably that both of those are you, but i just feel better when you're happy...either way, you are the most amazing thing i've ever known=) anyway, they worry a little when you get so upset because sometimes you get a little frantic and it's hard for you to catch your breath. we wonder if that's part of what happened last friday when they tried to extubate but were unsuccessful. it could be part of withdrawal from all the narcotic drugs you were on, or it could be because you don't feel good, or it could be because you're almost 2 months old and want to be entertained=) or it just could be because you're tired of everybody messing with you. hopefully not too much longer my girl, and we can bring you home with us. i'm so sorry last week was a rough one for you-but this one is looking up and hopefully we can keep you moving in the right direction=) i love you sweet baby-i can't wait to hold you again and kiss those warm cheeks and the corners of your pretty eyes=)

mommy

......

catherine-

hi sweet baby. this has not been your best week. they found out you became septic, and that's what caused you to quit breathing. you were just so sick. sepsis means you have an infection in your blood. yours specifically liked to eat up your platelets and basically just made you feel so horrible that you decided you didn't feel like breathing anymore. the sepsis pretty quickly responded to antibiotics, especially now that they know what exact organism was growing in there and they've picked an even better antibiotic to fight it. they have been weaning you on your ventilator for the past few days and planned to extubate you today. you were actually looking like you really wanted it out-playing with it with your tongue and pulling at the tape (probably on accident) all the time. but when they took it out this morning you started working really really hard to breathe and no matter what they tried, they couldn't calm you down. therefore, they put you back on the ventilator. your x-ray this morning actually looked pretty good, so i'm not sure what exactly is making you need the ventilator so bad. but you do need it. they'll try again maybe next week...

we talked to the doctor a couple days ago about the possibilities for you. he said that once you got back on cpap, if you still needed that pressure for your lungs after another month or so they would seriously consider giving you a tracheotomy and sending you home with that for a while (a while=6 months or a year or 18 months-whatever you need). this means that they would put a little hole through your neck into your trachea and deliver the cpap through that. i hate imagining this for you. it's so scary. daddy says you'll want us to try as hard as we can to keep this from happening because you might hate the big scar it would leave on your neck when you're older=) but we know that if that's what's best for you, we'll all be thankful we did it one day, including you-scar and all=) the doctor said that's definitely not a decision they're making right now, but he just wanted us to know there was a fairly strong chance you might need it. he said the reason for it was because once babies get to a certain age, they need more developmental stimulation that they just can't get in the hospital. if they can send you home with a trach, you'll get the positive pressure you need but also be able to grow and learn like a normal sweet baby would. it's just terrifying to think of taking you home with one of those. we hate imagining you having a hole cut in your throat. we are so sad you might have to have this. we're still praying it doesn't happen=)

so.....all of this said.....i'm finally getting angry with God. remember how mommy talked to you about that earlier? how i was afraid to be mad at Him? i hate every second of it, but i am mad at Him. i also know it makes no sense to be mad at Him, but that's how i feel. i just don't understand at all why this is happening the way it is. but i also know i should be (and am) so thankful for having you at all. i know i've always said i'm typically ok with not understanding why He does things, but looking at you and imagining how miserable you are makes this a whole different ball game. why do you have to go through this? i hate it. i am so sad for you. i also think i'm just really anxious and impatient for you to come home because mommy has to go back to work full time in november. i can't imagine not getting to see you every day. it seems like that shouldn't even be an option-going back to work full time and not seeing you, but mommy and daddy don't know what else to do. so that probably is making it worse-me getting mad at God for not speeding up your recovery. i know He's still good, and i tell Him so. i tell Him i know He loves us so much and i know He isn't neglecting us or choosing to harm us. i tell Him i love Him and i thank Him so much for you and the miracle of your little life so far. but i also tell Him that i'm mad at Him. it's a little bit therapeutic to be able to talk to Him about that. He's very sweet the way He stays constant through all of my ranting at Him. i'm so thankful He's still there and always will be. i'm so thankful He's holding you the way He is. i know in my head that He's doing that-holding you close, but i just don't feel it and i can't see it tangibly, so my heart feels cold a little bit when it comes to Him. but even writing this is helping mommy a little bit. i thank Him for listening to me. and i thank you too=) i love you sweet baby-we are right by your side.

mommy

ps-mommy and daddy's car got broken into last night-i kind of tell you this because it makes us laugh a little bit. there's a huge cinder block with glass shattered everywhere across our front seat. i should take a picture and show you one day=)

going backwards

catherine-

hey sweet baby. so apparently you weren't quite ready for the nasal cannula...you've been mostly back on cpap for the past 2 days and then they put you back on a ventilator tonight. daddy and i had just gotten in bed when they called to tell us that after we left, you suddenly quit breathing and wouldn't respond to stimulation, so they re-intubated you. they're running all kinds of tests now to see if they can figure out why this happened. i can't begin to say how sorry i am that you have to go through all of this. it's 12:40am and i couldn't sleep after they called me so i came back to the hospital to see you, but the truth is that i'm scared to to come in and see you with a tube down your throat again. but as soon as they're done running some of their tests i'll come in and give you kisses and hold your hand and tell you that i'm here with you and that you're not alone. i tell myself that'll make you feel better but i'm sure it's more for me than you, isn't it ? i am so sad, and so scared. i want you to be comfortable and happy, but i can't imagine that's possible with everything you're having to do. i don't really know what else to say, my . i love you so much and want to cradle you up in my arms and hold your cheek scrunched up next to mine and kiss it a million times.

mommy

Sweet Catherine, yeah, yeah, yeah...

Hey Catherine, they've been letting you "trial" on the nasal cannula. This is the graduate school of ventilators. You, your mom, and I have that it common. You seem to like the cannula better than the CPAP, so if you keep doing well, they'll let you keep it. Good work, we are so proud of you. We like getting to see your face so clearly. Your mom and I are trying to decide who you look like:), now that we can see your whole face.
Dad



hi sweet babe-this is mommy=) just wanted you to know i think you still look a lot like your daddy. it's not quite as obvious as it used to be-your eyes are big like mine and your face is still expressive like me, but so far dad is winning out (but that means you look like your aunt nikki so no complaints here) =) i also wanted to tell you that you're breastfeeding like a champ. you're such a rock star. we were able to start trying when you had your first trial on nasal cannula a few nights ago, and the third time we tried you latched on and went to town, acting like you didn't spend your first month and a half of life without doing it! i'm so proud of you my sweet girl. they let you spend more time on nasal cannula each day, and once you get up to a certain duration, they just let you stay on it and never wear that yucky cpap mask again! (you hate it so much-you get very grumpy when you have to put it back on) it's been fun watching you each day and learning more of your little quirks, and coming up with our explanation for why you get fussy at a certain time of the day, or at a certain time in your feeds, or routine, etc...it's quite complex with all the little issues you have going on-fentanyl withdrawal (you're still having some trouble with that, but they say it takes at least as long to get off it as you were on it), a potentially small tummy, intestines possibly not in the exact place they were meant to be...but you can do it...you amaze me even more every day-i love you=)

ps-the name of this post is another song that daddy sings to you-he sings the song "sweet caroline-yeah yeah yeah-good times never seem so good" but he sings cather-ine to rhyme with caroline. he's goofy. i think you will like him like that-i do=)

mirror

hi sweet baby!

look what you discovered this week! yourself in the mirror! you were completely mesmerized by your own reflection. i love it=) all day yesterday you were reaching out to your face and eventually you were able to pull the mirror down closer to you to get a better look;) you are precious and we love watching you explore your little hospital crib world=)

i love you sweet girl-
mommy

=)

catherine-

hi little one=) you are better. one of your favorite nurses is back today (she was there monday for your little "episode") and she said she was pretty confident you basically just had a big wad of yuck in the back of your throat and obviously that doesn't help you breathe! you poor little thing-i am so sorry you have to deal with things like that. but you've had a great few days since monday. you've been peaceful and happy, and you've even smiled at us a few times! we are loving that. not that we know exactly what is making you smile (a good dream, gas, etc...???) but it makes us feel like you are content and that makes us so happy=) you even came off fentanyl and nitric oxide today! guess what else? the BNP (brain natriuretic peptide) test this morning came back GREAT! this is the marker that indicates heart failure (from the pulmonary hypertension)... and yours was initially 2300!!! yikes! (that is when they put you back on nitric oxide) then it came down to 800, then 200, and this morning it was 75!!! they said a few days ago they'd be very happy with it below 100, and if it was below 50 they could be pretty confident that the pulmonary hypertension had resolved for the most part. they did an echo yesterday as well to check out the pulmonary hypertension-it showed that you do still have some but it's not "raging" anymore. you're still getting oral medication to help with it, so hopefully it won't give you too much trouble from here on out. they also said your lungs are looking a little more expanded, little by little, so that was great as well. keep up the good work sweet baby=)

yesterday you and i got to spend some great time together. i was pretty stingy with my "holding you" time-daddy gave me a look last night when i sat down to hold you for the third time and he hadn't yet had a turn...no worries-i did eventually share;) but you were awake for much of that time and looking pretty intently at me and i was telling you about all sorts of wonderful things. what we've been doing, what your nursery looks like, different family and friends who love you. it felt like you were listening to me and taking it all in=) thank you for that=)

so now our next big goal is to get you off of cpap and onto nasal cannula. i'm not sure how long this will take, but hopefully it can be soon. you get to try to breastfeed as soon as you are on nasal cannula-that is just an extra added bonus on top of the fact that nasal cannula means your lungs are doing better! i am so proud of you my sweet one. we love you so much and cannot get enough of you=)

mommy

catherine holding her crib

hi sweet girl=) i wanted to show you the picture of you holding on to your crib. you are so cute. i love you=)



this is just another picture we liked. we think your hands look so sweet=)

i can't wait to see you tonight. you are my heart, sweet love.

mommy

hazy

catherine-

hi lovey=) it's been a confusing couple of days my girl. you were just staying pretty much the same, no real changes, until today. today was not your best day and i'm so sad we weren't there for it (mommy hates mondays when we have to be back in richmond). i want to be there and put my hand on your sweet head and kiss the corner of your eyes-that's my favorite place to kiss you. so there are a few things that are going well-you are taking full feedings of breast milk through your little tube going from your mouth to your tummy. this has enabled them to change all of your medications (except fentanyl) to the oral route, intsead of through your iv. but you're still having a tough time withdrawing from fentanyl, your narcotic pain medicine. saturday was no fun for you. you are now on methadone to help you wean from fentanyl, so they came down pretty fast on the fentanyl thinking the methadone would prevent you from having withdrawal symptoms. not true, my love. you were crying and throwing up all day. it broke our hearts and i can't even imagine how miserable that was for you. they eventually increased your fentanyl again, and you were a pretty happy girl for a couple of days. they seemed confused by you, not sure what was causing what, which action to take next, etc. it seemed like we were at a standstill and things were just a little hazy. the staff at uva has definitely been outstanding-we have no complaints, and we know that these little periods of ups and downs are part of the whole course...but it's been no fun to watch this part of your little journey. so tonight they told me that this afternoon you went through a rough patch and they changed some things with you. they suctioned your throat and then your heart rate and oxygenation dropped very low. you started working really hard to breathe and your blood gases were not quite right. they said you just didn't look well at all and they thought for a minute that they would have to re-intubate you (and you would've been back on that ventilator that uses the tube going down your throat). instead of that, they changed your cpap to the biphasic kind that gives you a rate of breaths per minute (before you were just taking breaths on your own and the machine gave you some extra pressure to hold your alveoli open....now it's making sure you breathe a certain amount of times per minute). they thought you could be septic (infection in your blood) so they drew blood cultures from you and started you back on antibiotics (which had just gotten stopped yesterday). they have checked you a few times before for sepsis, and you've never had it, so hopefully this will be the same. my heart is so sad my sweet girl-i want to be beside you so bad for you to hold my little finger. you like holding things-yesterday i walked in to see you and you were holding on to the bar of your little crib while you slept=) it was very cute and it made me think you were gonna be a snuggler like your parents=) your nurse said you were better now-sleeping peacefully with the changes they made. they had doubled your methadone dose before they decreased your fentanyl today, and they wondered if you were just "snowed" by all the pain medication that would also sedate you, and maybe this contributed to your problems today. so they've decreased the fentanyl which scares me too. you have been getting sick every time they decrease the fentanyl, but hopefully the methadone will help this time. i pray that God would save you. i pray that He would help your daddy and me continue to trust Him and patiently pray for you. i pray that He would continue to hold you so close to Him. i love you my girl. i am so sad without you.

mommy

our little elephant girl=)

hi baby!

look at this! you are now our little elephant girl! this is called a CPAP machine (continuous pulmonary airway pressure). it looks a little more intense than the ventilators that you've been on that have gone in your mouth, but it's much better for you! this is what you graduated to once you came off the conventional ventilator, and we are so proud of you! you started this yesterday, and at first you were pretty mad about it and you were working pretty hard to get your breaths. but your blood gases have all been great and today you have calmed down! this morning ms lindsay dressed you in a pretty little pink outfit (your first outfit!) and you were wide awake for us. the cpap machine makes you blow bubbles (better known as drooling on yourself;)) and we think you are the cutest drooly baby we've ever seen.

guess what else? so you know we've already established that you look just like your daddy in female form, but we discovered something that you and i have in common! we both have very expressive faces=) it's been both a good and a bad thing for me, my girl, but mommy and daddy love that we can tell how you're feeling! it makes us so sad when you're upset-especially right now because you're hoarse from the tube touching your vocal chords and your cry doesn't make any noise-but we love when you look so content and interested in what you're doing-especially when you look at those crazy bright colored cows hanging in the mobile above your hospital bed!! ok my girl-keep up the good work. we are so proud of you=)

i love you!

mommy

a little update

hi sweet catherine!

i thought i'd give you my version of what you've been doing lately=) you went to a conventional ("regular") ventilator on your 3 week birthday! that was great news my dear! you've been doing pretty well on that-SO well, in fact, that this morning they made our day by saying the plan was to extubate tomorrow! (that means they take you off the ventilator and onto a less intense machine to help you maintain the pressures in your lungs) can you believe it! i got little tears in my eyes when they told me-it surprises us every time you take a step forward=) you had a few other changes this week as well. you went back on nitric oxide, which is a little step backwards, but that's ok. they realized your pulmonary hypertension is still pretty bad (where the blood vessels in your lungs are really tiny and it's hard to get enough blood to make them work, and in turn the right side of your heart works extra hard and it can put you into right sided heart failure...none of that is good my love). but you've been loving the nitric oxide, so it must've been a good decision=) they also started you on caffeine through your iv and a steroid inhaler through the ventilator. i guess they've been doing their job since you might get rid of that ventilator tomorrow! daddy likes to say that it's the breast milk that's been making you better;) if only that could cure your lungs...but that was another piece of good news this week! you started taking my milk through a little tube that goes through your nose into your tummy, and you've been doing great with that! it was a possible concern that your gut wouldn't wake back up like it should after surgery and after not being used for several weeks, but you're doing great! (aka: peeing and pooping like you should-it's funny how excited we now get over dirty diapers=)) we've been getting to hold you like i've wanted to for so long-with your head up by mine so i can nuzzle you with my cheeks, and i've been able to pat your little booty like i talked about while you were in me-daddy put a video of that on here so you could see it later=)

we're slowly learning to live what we've known for a long time: that this would be a long long roller-coaster of a road...that you're going to have good days and bad days, and to try not to get overly-excited about the good or too disappointed about the bad-because it's all part of it and we have to believe that we'll get to take you home as a healthy little girl before too terribly long. ("before too terribly long" could even be a few months, but in the grand scheme of things that's not so bad, is it?) i cry though when i think about the day we get to take you home, and then when we get to take you to atlanta to see all the family and friends there that love you and are rooting for you so hard...have i told you about how much you are loved? not just by us, my dear, but by people all over the country and even by people that mommy and daddy have never even met. it overwhelms me a little to even think about it. it started well before you were born, when people would read these letters to you to be kept up to date on how you were. well it's only gotten bigger my love. mommy and daddy (and you! we get mail addressed to you now! and i love it=)) get cards and letters and gifts and even anonymous checks in the mail...it's unbelievable. you got a card and a little dr. seuss book (those are mommy's favorite) in the mail last night from your friend eden who lives in texas. you also already have a proposition for a date from your friend jack who lives in georgia-he's quite the looker and he likes older women (he was born 3 days after you;)). people are loving and supporting the three of us so much and i don't know how to begin to thank them. maybe you can help me once you're bigger. needless to say, the people who love us have surrounded us in the most wonderful way since we found out you were sick, my dear, and i can't wait for you to meet them and realize how loved you are. they have paved the way for you to have such rich friendships and we want that for you so much. to know the depth of authentic love and relationships with people.

we are so thankful for you, babe, and we're so thankful for the people surrounding us in this journey with you=) i love you more than i know how to express...

mommy

Bodily fluids

Catherine,
You've had a busy few days. You recently started eating (i.e., you have tub up your nose that gravity flows pedialite or milk to your stomach) and stooling. You took a step back, needing to go on nitric oxide, which helps the vessels in your lungs relax. On the other hand, several steps forward. You are now on the regular ventilator and starting to initiate more breathing on your own. All good things. Keep at it little girl.
Dad

Katie Holds Catherine...

Hi Catherine. Your mom got to hold you yesterday. Here's the video. You were wide awake. Today, they let me hold you. You lost some water weight and your head is approaching a normal size for a baby. You were a little jittery. Every now and again, you'd tremble your arms and legs, like a shiver. Probably because you are coming of your pain medicine. We love you! We'll be away till tomorrow night, but you are in good hands.
Dad

ps-hey sweet girl! this is mommy-i wanted you to know that you're not really cross-eyed=) it just looks that way for a second because you're looking at my shirt!!! no worries my girl=) i love you so much and we are missing you while we're in richmond for today!! see you tomorrow my beautiful princess!!

happy due date!

catherine-

happy due date my sweet girl! it's funny to think that today is the day you were expected to come out and see us, but you've already been through so much in your little 2 weeks and 2 days life=) as daddy has already told you, you had surgery 2 days ago and you did great! it was a tough one-the surgeon said he didn't have much diaphragm muscle to work with so the patch took longer than expected to sew in its place. you really didn't have any major complications during surgery-there was a little period of time where your heart rate got really high, but they fixed that pretty quickly. and you lost just a little bit of blood but that got replaced after you came back to the nicu. they also said your little left lung was bigger than expected-that was great news=) (i think daddy said we would now call that your "big little lung"...) you got out of surgery around 5pm, and at 2am they got to turn off your blood pressure medicine (which is considered a "life saving" medicine so being on it boosts your critical status) so that is great news! they also started weaning your other blood pressure medicine at the same time, and since then your blood pressure has been behaving! so now what we're needing to happen is for the fluid around your lungs to go away and give the lungs more room to grow and expand and do their job-just get oxygen into your body and get co2 out of your body. they're doing better, but they've got a ways to go for sure. i'm so proud of you my sweet one=) you are so strong and brave. you know what's a little funny? well, not really funny but we smile about it because what else are we gonna do? you've gotten so puffy and swollen since surgery!!! daddy kisses your head and his lips and nose leave little indentations=) he came up to your bed the first day he saw you swollen and said "hey puffy baby!" and i thought it was cute=) so now that we're talking about your daddy, let me tell you how ridiculously excited he's been since you came successfully out of surgery! he really was walking around so giddy that afternoon and yesterday-and he keeps singing all these songs about you. here's one of my favorites:

you are my catherine-shine
my only catherine-shine
you make me happy
when skies are gray...
you'll never know catherine
how much i love you
so please don't take
my catherine-shine away

you'll learn how that song really goes one day, but i like the one with your name in it better=) he's also started doing his school work beside your little bed in the nicu. we're very lucky he gets to do that here. he just looks up every now and then, and if i'm standing next to you he'll ask me to rub your head for him=) oh guess what else??? i've never seen a man get more ridiculous over a baby opening her eyes!!! i completely understand and share his sentiment, of course, but i think it's so cute how quickly he comes if i tell him you're awake and we can see your pretty little eyes=) we love you my precious girl, and we can't get enough of you. every now and then i start feeling so impatient like i just want to have you home with us, but then i quickly remember how far we've come, and how we didn't even think we'd have you this long. so then i just thank God again for how good He's been to us, and how He's blessed us with you, my love, and how i still have no idea what He's doing but i know He's smiling sweetly up there as He looks at us and He's continuing to hold us all closely. i pray that He would breathe His breath of life in and through you, and that He would continue to heal your little body. i also pray that you would bond with Jesus during this time and He would whisper sweet stories and songs in your ear...these are simple prayers, but sometimes my head feels overwhelmed thinking about what else i should pray, and i think God is ok with that. He knows our hearts, and He knows we trust Him. i hope you can feel how much He loves you.

you are our hearts' delight my sweet one=)

mommy

A Big Surgery for a Little Girl

Catherine, today was your two week B'day. It was a big day for you. The doctors put your organs back in place and built you a new diaphragm. You didn't have much muscle there, so they put in a patch and stitched it to your ribs. The surgery took about 3.5-4 hours. The doctors said your little lung was bigger than they expected (from now on, we'll call it your big little lung). This will help in the days ahead.

Before you went in for surgery, you woke up more than ever before. You were moving around and were relaxed. You found your mom and I. You were probably thinking, "that's a little blurry." I hear your eyes aren't focusing yet. But you seemed to recognize our voices and rest when we touched you on the head and hand. I wondered when we left if that would be our last memory. It was a very very sweet one. As I left, I tried to hold onto every moment (I wanted a video camera to soak up every detail). It reminds me of the way I felt the day I married your mom. It was a beautiful day, and when I stood on the altar, I tried to memorize her gaze, her smell, and her every move. Like you were today, she was stunning.

As we waited, your mom and I got icees and sat on UVA campus. We just talked about how much fun it was to interact with you. There was an unexplainable peace as we waited. A calm in the storm, of sorts. We talked about how, if you pulled through, we would bring you to the same store one day. We would take you to the bench we sat on as we waited for you.

You still have a long road ahead. We will be here when you wake up, my love.

Daddy

hi=)

catherine-

hey sweet girl=) don't you love this family picture? it was taken today when we were getting to hang out with you a little. you had just gotten turned over on your tummy (you really like that) and daddy and i were giving you a little lotion massage on your back. you were very awake during it all! you even let us see your pretty eyes for a while-we love that=) we feel like we get to connect with you more when you look at us my sweet one. your nurses are letting me do more little mommy things-i get to take your temperature and change your diaper sometimes-i actually got to pick you up for a brief second last night when we weighed you! it wasn't at all the way i'm longing to pick you up (you know, nuzzle you on my chest with your sweet little head in my neck-i will keep waiting for that), but i still got to hold you in my hands, and i'm so thankful for that=)

you have been here for 10 days now, and you've had a very busy week! let me tell you what all you've done. tuesday you came off ecmo, which is a very big deal for you! you've done well without it, my dear. so well, that you even came off nitric oxide today! that was the stuff that dilated your pulmonary vessels to make your lungs work a little better-great work my girl=) i'm so proud of you i don't even know what to say. we stand there looking at you all day long in complete amazement. i'm still terrified that we won't get to keep you, and i suppose that's still a reasonable fear, but we just are blown away by what's going on. who are we to deserve to keep you after all this? to even know you for 10 days, and hopefully so many more after?! daddy and i were driving to see you a few mornings ago and a hillsong united song was on-i looked over at him and he was crying a little (and so i started crying a little too-remember me telling you a long time ago that i would cry when he cried??). i asked him what was going on and he said that he was singing whatever praise and worship song that was to God and he started thinking about you, and how God is sharing you with us, and basically that it's so sweet of Him to do that and we're completely in awe of His goodness and the blessing that is you, my sweet one. you know what else i keep thinking? i really want to believe that we would be just as in awe of Him if He wasn't letting us know you-that we would still recognize how good and loving and miraculous and sovereign He is even if we weren't seeing this little miracle (you!), my precious girl. i want to believe that we would still praise Him, so i'll just believe it. but i sure pray we don't ever have to find out if we are really that strong.

so this coming week will be a big one for you, too. you have surgery scheduled for tuesday to put your little organs back down in your tummy and sew up your diaphragm. you can do it my girl=) i pray that you will just continue healing more and more until then, that you will do so great during surgery, and that you will recover well and quickly. and guess what else? remember how you had a narrowing in your aorta that they thought was a coarctation and would need another surgery for that??? it's not there anymore=) or at least if it is there, it's so minimal that you won't need surgery for it!!! i feel like i don't even recognize what a big deal that is. your daddy and my daddy too keep reminding me that this shouldn't be passed off just as one of those things that happen-that medicine has its flaws and maybe someone missed something or misdiagnosed something-but that everything you're doing is by a Divine Hand and that you are a little miracle living and breathing=) i love you my girl-i am amazed by you and by what God is choosing to do through you. i am so proud of you and i can't wait to tell you this story=)

see you tomorrow my love-

mommy

ps-i wanted to tell you that your daddy really did jump when he saw the video of you opening your eyes-he jumped back in his chair and his breath caught in his throat-i wish i had a video of just his reaction to show you-he is so in love with you my girl=)

you are here=)

catherine-

hi precious girl=) i'm sitting here crying as i write to you because you are in the next room doing more than we could have ever expected. it hasn't been easy for you to get here, and your little fight isn't over sweet girl. but our hearts are happy today=)

you opened your sweet little eyes for us! today was the first time we saw them, and your daddy and i are both so giddy excited we don't know what to do with ourselves. we just want to stand there staring at you, holding your little hand or cupping your head to see if you'll wake up just a tiny bit for us to get another peek=) your daddy actually does that every second he's beside you-touches your leg or arm or head-you usually will wiggle back at him or give a tiny squeeze on his finger and he loves it. they actually had to give you more "calming" medicine yesterday after he left because he got you so riled up=) he loves you so much catherine-it's the most amazing thing to watch. we are convinced you just like it when he holds your hand and that's why you start moving around-that you remember him from when he would touch your little leg when you were in my tummy, and you would always move around then too. either way, we want to keep you nice and comfy now that you're out, but we can't help ourselves sometimes and just want to give you lots of kisses and see you respond to us...you are our hearts' delight my sweet girl=)

so daddy told you a little about how you came into this world, but i wanted to give you my version as well. do you remember that last letter i wrote to you? that was around 5 in the morning last tuesday, and i had been having contractions since 1:30am. at 6:30 or so your daddy woke up and realized i hadn't been sleeping-we weren't too worried at that point. we decided to go get him breakfast at chick-fil-a and get a body pillow for me at target-that's something i wanted for the hospital. it's a very cute pillow-pink polka dots and everything-you would like it i think=) we thought about calling the doctor after that but tried to lay down instead. i was able to take little naps between contractions, and then we went to pick up your silly auntie shelly from the airport at 12 that day. i remember having to stop and sit down during contractions while i was walking into the airport to get her-it makes me laugh now looking back at it. what was i thinking?? i've decided i was completely in denial that day because i was so scared to bring you into this world-not knowing what would happen and how you would do (and my contractions were never regular-that's my other excuse;))...anyway-your daddy and shelly and i went home and turned on movies-again i took little 6-15 minute naps between contractions until about 6pm and daddy convinced me that dr lucas really should at least know what's going on. i called him and he said that he agreed with me-it sounded like it was early labor and probably i could just meet him at the hospital, get some medicine to help me sleep, and then go home. (he later told me that i was one of the few people who have ever fooled him...) well we got there around 7:30pm and the unit was so busy!! they finally were able to check and see if i was dilated at a little after 9pm, and dr lucas had the strangest look on his face...and then he said "katie-you're 8 1/2"..................all those dots represent the madness going through my head over the next few seconds-kristen my sweet nurse honestly didn't believe him. she kept saying "dr lucas-that's not funny! what are you doing!" well he was serious my girl. you came about an hour later at 10:18 that night and it was the most amazing experience. you came out and gave your attempt at a little cry and then the nicu team took over-they intubated you and were able to successfully give you breaths-that means your lungs weren't totally hypoplastic and there was a bit of hope for you my love=) they put you in my arms for a second and let me kiss you, then took you to the nicu to figure out just how much help you might need. our friends and family got here all within a couple hours of your birth-God was very sweet with that my girl-our family wasn't supposed to arrive until the next day but many of them (without knowing i was in labor) got on a plane a day early and were able to see you being taken down the hall after delivery=) i remember being surprised that i felt so happy and peaceful after you were born and they had taken you to the nicu-i don't even know what else to say about that but i think Jesus was just giving us a little gift of celebration with our friends and family. daddy and i went to see you that night and you were unbelievably gorgeous (and you've gotten only more gorgeous each day since then my little beauty=)). to speed the story up a bit, you did great for about 12-14 hours. we went to see you in the nicu-let our friends and family see you a little, and then around noon on the 20th they discovered you might have a little problem in your heart too-it's called a coarctation of the aorta, and basically that means that your big vessel that takes blood to the lower part of your body is super skinny. that, combined with the potential for you needing ecmo, got you a trip to UVA for more specialized treatment. it was a good decision my sweet one because your status just kept deteriorating all afternoon-your oxygen saturations kept decreasing and it became pretty clear you would need ecmo as soon as you got to uva. i waited till the transport team got there, watched them take you out of that nicu, then daddy and i got on our way to charlottesville to meet you. we got a phone call around 2am that night getting permission to start ecmo, and off you went on that. over the next few days daddy and i spent the night at a hotel next door to the hospital-it was a very scary but sweet time-we got to hang out with each other in the morning and at night-and we would always talk about what the scariest part of the day was and what we were most thankful for that day. i found that hope is a scary thing for me my girl. not that we were surprised by that-i think we discovered that while you were still in my belly, but it's all the more intensified now that you're out in the world.

that was our routine for 3 nights, then came the night we were to go home and just drive an hour and a half to see you in the morning. that was not fun for me my sweet girl. i didn't want to leave you. i couldn't imagine being that far away from you and it taking so long to get here if you needed us. but we made it, and after a couple nights of that, we get to today. they trialed you off of ecmo today=) that means they just give it a trial run and see if your body can oxygenate itself with only the ventilator...you did great=) i got to stand there beside you the whole time and "cheer you on" as the nurses were saying=) you were so peaceful and wonderful during the whole time-just holding your own and giving them all the numbers they wanted-your nurses keep calling you things like "pistol" and "soldier"-you are definitely a fighter my little girl and i'm so proud of you. i stand there staring at you unable to understand what all's going on. how are you really here??? it's more than we ever imagined and we have fallen madly in love with you=)

so their plan is to test a few more things tonight, and take you completely off ecmo in the morning. what! i can't even believe it as i type it=) then surgery would probably be a week later for your diaphragm and then a few weeks after that for your sweet little aorta. lots of things are playing into this plan, and i honestly can't even keep up with it sweet baby-but i'm so thankful we're where we are and i can only trust that you are in good hands-that God is holding you near as always and breathing His life into you. we were listening to praise and worship music this morning driving to charlottesville and i realized that when i closed my eyes to sing all i saw was your sweet little form on your hospital bed-like i'm seeing Jesus when i look at you and i'm so proud of you for that-and thankful to Him...i have no idea what He's doing-but it is good and i am blown away by it all. part of me was singing to God when i would sing along, and then another part of me felt like i was singing for you-that you are praising Him and glorifying Him with everything that you are doing right now-i don't understand all of this my dear but it was a great experience there in the car and i liked it=)

you know what's funny? i'm starting to love the "hospital smell" because it is your smell right now. when i lean down to kiss what has become my favorite little knee in all the world, i smell that smell=) and when i'm home and using the breast pump to prepare food for you to eat one day-i smell that smell then too=) yesterday they gave us a blanket that had been in your bed for a couple days-it doesn't quite have that smell but i just want to rub my face all in it=) you are the most precious thing and we love you more than i know how to explain. your daddy is getting antsy because he wants to go see you again, so i'll wrap this up and go join him=)

keep fighting my sweet girl=)

mommy

My Blue Eyed Girl

Hey Daughter,
They say that they eyes are the windows of the soul. So, we saw each other's souls today. I love you. My heart jumped for joy just watching this video. Your mom took it before I arrived. Later, you opened the shades and gave me a live show.
Dad.

Your Birthday

Catherine,

This is from your father. Your mom is preparing your meals for you. I’m sitting in the waiting room of the NICU at the University of Virginia. It’s a light green color, like my office. They say light green is a calming color. That’s probably why they picked it. There’s a beautiful painting of Charlottesville on the wall. It is quiet for now. This afternoon the Davis and Torrance clans will fill the waiting room.

Right now you are on ECMO, a machine that serves as your lungs. It takes your blood, puts oxygen in it, warms it, and then sends it back into your body. You are on a blood thinner that keeps you from clotting, but this procedure has risks because if you were to start bleeding, particularly in your brain, there would be little the doctors could do to help you stop. You are stable, a lovely pink color. The plan is to let you build strength. We want you to be able to sustain yourself. Then the doctors will rebuild your diaphragm. After you recover some from this surgery, the doctors need to repair your heart (this is actually why we brought you to UVA). Your aortic arch is too narrow in one spot. So, my dear, you have a long road ahead. So, what do you say we take things one day at a time. Really all you need to do is keep doing your thang. I have also noticed that your nurses like to work with you. You were a little high maintenance at first, but you are very beautiful and beauty does warm people’s hearts.

Your mom may want to fill in the details, but I figured I’d tell you about your birthday. On Tuesday, your mom started experiencing stronger contractions. They were not consistently strong and seemed to vary in frequency. However, she did not sleep much Monday night. We wondered if you were ready to go. I don’t think she was quite ready to turn you loose on the world. It is a scary thing for a Mom to let her child go from a safe place to a unknown territory. I’ve seen the phenomena at other transitions, but had never really thought about birth in this way. We bought her a giant, polka dotted body pillow. For the remainder of the afternoon, we watched movies. Actually, I was trying to finish up my list of things to do before everyone came into town. The contractions were less frequent, but more painful, so we decided to go to the hospital to check in with Dr. Lucas. We also hoped he would give something to help your momma sleep.

When your mom and I (and you too) got to the hospital, it was bustling. Dr. Lucas was busy with something else, so we waited. Then we waited. Then we waited a little more. After an hour, he came to check your mom’s cervix. Although generally a cool cat, he did show a little shock on his face over the next few seconds. This part was bit of a blur, but among other things, he said resolutely “you are 8 and ½ cm dilated.” That means you were coming soon.

Your mom was shocked at this news. As much as we planned everything, you had a different plan. She cried and became very anxious for a minute or two, but Dr. Lucas was good and talked her down. Originally, your mom wanted to have you without medication for pain, but the day's events (what she thought were pre-labor contractions) changed her mind. However, at this point, much of the work of labor was done. You and your mother are currently tied for the most courageous women I have ever met (well, I can think of one other). She brought you into the world without a drop of pain medication. I’ll let you ask your mom about labor. I just stood beside her and told her I loved her. I let her squeeze my hand if she wanted. I was excited the whole time to see you. I was nervous, wondering if you would be able to stay alive. Sure enough, about an hour later (at 10:18 pm) you arrived. The other doctors worked on you. They let mom hold you for a moment and then swept you off to the NICU to see how you were doing.

Of all the guests planning to come, only Shelly was here to see zero hour. However, not long after, my family (Kelly, Misty, Keith, Elaine, Nikki, and Dad), Katie’s parents, Katie’s other best friends, and some of my friends from school arrived. We waited around with them for several hours to hear from Dr. Farhi, your neonatologist. You needed a lot of help from the ventilator, but you were stable. The plan was to wait to see how you would respond to the next few hours and days. When everyone left, around 2:00am, your mom and I were both exhausted. So, we went to bed. That was your birthday my dear daughter. We’ll tell more of your story later.

Dad