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