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