some reasons to celebrate...smiley dimples and golden birthdays

hi=)

you are so cute. your sweet cheeks are filling out again and you're slowly gaining some weight back. sometimes hospitals aren't such a bad thing, huh? i think we've convinced daddy of this finally.

your next surgery is tentatively set for may 13. that will be the reanastamosis (that's a super fancy word for putting your intestines back together) and hopefully after that all will go well and you'll go home with just your trach and vent and g-tube. we've opted to keep you in the hospital until then. lots of reasons...but basically we don't have consistent nursing care at home and you going home on tpn and lipids means a lot more work plus frequent lab draws to make sure the same thing doesn't happen again. daddy and i agree that it might be a little too much right now considering i am still working full-time and planning to start school again mid-may and daddy is finishing one semester and getting ready to start another semester with clients at a new site, etc, etc...the three of us are actually able to enjoy each other more if it's somebody else's priority to take care of your gadgets. at first (for about 1.5 seconds) i felt a little guilty about all that-that we were choosing to keep you in the hospital and that meant you couldn't be in your own home and couldn't take walks with us and couldn't even get outside or look at a tree for another month...and then i realized that this way the two people who love you the most can just simply play with you and read books and sing songs and make silly faces and play peek-a-boo with your blanket and make lionel the lion shake and kiss your sweet nose. you love these things. so yes we quickly came to the conclusion that you being in the hospital did actually seem best for all three of us. i can still see you every day-i basically am just commuting from charlottesville to work 3 nights a week, and daddy has to be in richmond monday and tuesday but one of us is with you every day and night. i can't stand the thought of you being in that hospital room by yourself.

you've returned to your happy self. flirting like mad with every male who walks into your room, showing off that beautiful smile and sweet dimples up by your eyes. out of control, little lady. i kinda love it though. you're making the most fun noises-blowing raspberries still but now some other noise too i can't quite figure out. i sat there staring at your lips today while you did it trying to see what exactly you're doing. no luck so far. but it's super cute. like you're clicking in some african dialect. it's great, watching you figure out what your mouth can do. and you're back to wanting your pacifier all the time-and being perfectly pleased if we'll simply put it in your mouth for you. what was it exactly that made you hate that so much the last few weeks? i guess just general irritability as you became super scary dehydrated. i'd be grumpy too.

mommy's birthday was monday. everybody kept saying "oh i'm so sorry you have to be in the hospital for your birthday!" but it was actually pretty great. at the end of the day i sat back thinking how surprised i was that it was such a happy day and i felt so full of joy. God was very sweet to give me that. daddy was in richmond all day so we couldn't see him, but auntie shelly was still in town for most of the day so there was much fun to be had. i finally got to start sleeping in the same room as you sunday night when you finally were transferred out of the picu. so monday morning shelly brought me breakfast and we ate it by your bed and chatted with you a bit. then you fell asleep and shelly and i went walking through uva's campus. (it was a GORGEOUS day!!!!! a katie day for sure!!! do you remember what katie days are?? it's when the sky is perfectly blue-which makes it my favorite color-with no clouds anywhere) then we got tons of ice cream from the freshen's stand (reese's pieces microblast-i don't know why i think we'll want to know these details one day) and brought it back up to your room and ate it. and then we played a mad game of hang-man on your dry-erase board. answers such as free willy, bankhead bounce, papua new guinea, funky cold medina...we thought we were hilarious. you had a sweet nurse carrie who was actually the roommate of one of your nicu nurses taylor (taylor named your little elephant trunks) and carrie i think found us a little amusing. she caught me dancing like a fool when i didn't think any strangers could see me. you'll probably go through a phase at some point where you think your mama and her friends are embarassing. and then you'll get over it and join us. so then auntie shelly had to go back to chicago and it was just you and me. we read books and played and you gave me lots of sweet smiles and tried to chew on my green "uva children's hospital parent" bracelet. for some reason i love when you do that. and then lots of doctors filtered in and out all afternoon and we made plans for what we're gonna do with my little cutie. at one point dr rodgers left and then came back 5 minutes later singing happy birthday and trying to get you to join in with him. it was very cute. and then the whole pediatric surgery team came in saying happy birthday. and throughout the day lots of our favorite nicu friends came by wishing mommy happy birthday and bringing her pretty flowers. you fell asleep around 7 and i went to eat with my sweet friend kate. we ate outside on a balcony and it was still beautiful outside and that is pretty close to heaven for mommy. we got ice cream AGAIN which is an absolute necessity for birthdays. then i came back to your room and you were still sleeping like a little angel. so i decided to go to sleep too. earliest i've gone to bed in over 8 months;). all this to say: i felt very special and got to spend my golden birthday (i turned 27 on the 27th) with my favorite girl. it was a great day=)

so we're camped out in room 7146 for a few weeks. it's not so bad=)

love you sweet baby.

mommy

here we go again;)

ok love. short and sweet and right to the point. we went to your check-up with dr rodgers today. we told him what's been going on lately, the most important things being that you slept all day yesterday and your food wouldn't go through last night-it just kept coming out of your mucous fistula. that you hadn't gotten food since 2am. that you don't seem yourself, etc. etc. they drew some labs and immediately admitted you when they saw how crazy out of whack your electrolytes were. before dr rodgers came in to talk to us about it the nurse poked her head in and said (in a subtle, but frantic, voice) "he's gonna admit her-you just keep watching her, ok?". and i kept wondering what exactly i was supposed to be watching for. so i finally asked somebody and they said that your sodium was so low that it could cause seizures. your sodium was 105 and he said he really didn't believe that because it was so unusually low. that it must've been a diluted sample and they'd repeat the labs when you got to the picu. well it wasn't diluted sweet baby. and your sodium that low means you should've been seizing or unconscious, but you were neither. lots of thanks for that. what a strong fighter you are lovey. everyone kept saying so today when they realized your sodium really was that low and you were actually awake and aware at times. so we settled into the picu and got you some fluids and electrolyte replacements and soon your sodium was coming back up and the other lytes were evening out too. you were still so grumpy it was almost funny. not actually funny, but almost, just because as soon as you'd wake up you'd look around and start making these groany noises. sweet sweet baby. it's pretty pitiful just thinking about it actually because it's so unlike how you usually are, before this most recent saga began...

ok so here you are. back at uva in the picu with your friends coming to visit throughout the day. we love them, don't we??? i'd be ok with not seeing them quite so much though;) you'll be there for about a week. we can do it=)

love you babe-

mommy

ps-i actually asked dr rodgers, with a big smile on my face while laughing at myself, if you kind of licking a dandelion could've hurt you. he started laughing at me too=)

more easter...

(disclaimer: yes i'm fully aware that dandelions are the tinsiest bit poisonous. i was, and still am, fully confident that what you see yourself doing in these pictures wouldn't really hurt you;))

Easter pictures=)

silly mommy

hi baby=)

i just read that last letter i wrote you. i sure was feeling blue, wasn't i?? i don't really want to apologize for writing it, because that's how i was feeling and i want you to know all the truth about your tough little journey. but i AM so so sorry if any of it sounded like i was complaining about you. never ever sweet one. you are my favorite=)

mommy

ps-this is a weird letter too, huh?? mama's a goof=)

okay, okay

hi sweet babe=)

i love you very much. and i could talk about you all day long. and i do actually think about you all day long. but i have been putting off writing you this letter. i'm not sure why. probably because i've been feeling glum. i don't usually use the word glum but it seems to fit. and overwhelmed. totally consumed by the fact that i am solely responsible for noticing and alerting the important people if something could be wrong with you. scary scary.

you came home last friday. hooray=) and i feel so bad for this, and i hope you're old enough when you read this to understand my heart in saying it, but sometimes i wish you could've stayed in the hospital while we wait these 6-8 weeks to have your intestines put back together. i love the convenience of the 3 members of our little family sleeping in the same room and waking up together (even if it is 6 times a night) and being able to jump at the chance to take a walk together if the weather happens to be nice for 5 minutes. (the weather has also been "glum"). but i'm terrified every waking second, and even in my dreams sometimes, that something is going on with you and we're not noticing.

but you are incredibly delightful. you are still the greatest joy in human form i've ever known. i found out last week that a sweet girl i'm in school with delivered her precious twin boys at 22 weeks and their little bodies were not strong enough to sustain life. what a nightmare. i can't imagine how her heart is broken. i sit here staring at the computer screen after typing those 3 sentences because there are no words to make an appropriate response to what she's going through. and it reminds me that i'm the luckiest girl on earth. and of the fact that we are victorious in every little task that makes up your daily care. i have you. i could not ask for more. i pray that God would help me continue to celebrate and explode with thanks even when i'm walking out the door to go to work and overwhelmed tears are coming down my cheeks. He deserves nothing less. He deserves so much more.

i guess i could explain why i'm being so dramatic. you came home with a g-tube that's just hanging out until it can be used in another month or two. so that doesn't require much work-just clean around it with with soap and water each day and turn it so it doesn't get stuck in one position. you've also got an ileostomy that catches all your bile and stomach juices and anything you take by mouth. this is a little more time consuming. the bag gets full of all those things and gas super quick. so we empty the bag every hour or two and change the bag once a day, or sooner if it starts leaking. you've got a j-tube (it's in your jejunum, a part of your small intestine) where we feed you continuously for 20 hours each day. since you don't have bile mixing in with your food, you don't digest and absorb it as well so your poop is super runny. and you're not gaining weight right now. you've actually lost a little more=( so sad. i hate feeling your little hip bone and ribs. i have this underlying fear that people are gonna come take you away from us because you're such a skinny little thing. poor baby. and the j-tube goes into your mucous fistula which constantly leaks out mucous, hence the name, and it keeps your clothes wet and putting gauze around it doesn't seem to help much. night time is the worst because i can't keep changing you into dry clothes. therefore you have this raging yeast rash around the mucous fistula, all up and down your right side and onto that half of your back, and down onto your sweet little right bottom cheek. it's awful. we got some nystatin powder but that didn't help. then we went to the pediatrician and got some nystatin ointment which is helping a little. but i fear it's just gonna be there to some degree until you get all closed up. the runny poop means we need to change your diaper at least 2-3 times during the night or you wake up in a pool of poo. literally. up to your head. and seeing that we can't give you an actual bath for 6 more weeks, that just can't be good. the reason we can't give you a bath is because they kept your central line in just in case you lose so much weight that you need more tpn and lipids to get you calories. it's looking likely. i guess we do that at home, too. who knows. i should be thankful for that, right? that we can keep you home and do it? i guess if we had a nurse we were comfortable with and who was comfortable with you that might work better. not the case right now. so the central line needs to be flushed each day and once a week the dressing gets changed. that is an insanely sterile procedure and kind of a big deal. remember how you got septic (bad bacteria in your blood) in the nicu? it's because of the central line you had then. and then you got a little sepsis, but not as severe, this past stay in the hospital. and you also got some pneumonia. did i tell you that? that was probably why you had a fever all week.

anyway, i think that sums up what currently fills your days. you're not quite the same as before, but giving us more smiles for sure. showing those sweet little dimples up by your eyes. what a fun place for dimples. you're getting some more teeth and you're pretty grumpy about that. i'm sure that rash itches like mad and you're restless all the time, in what i'm guessing is an attempt to scratch it. you used to play so happily by yourself laying on the floor under your little rain forest jungle mat thing. the fact that we'd walk up close to you seemed like an extra bonus and you'd smile so big, but keep playing independently with your toys. now you want to be held all the time, including at night, so along with all the other things going on at night now it's safe to say there is no sleeping for your mommy who loves you more than life. you used to get fussy only when you were sleepy and we'd put your passy in your mouth and pat your head for 2 seconds and you'd happily go right to sleep. now you get mad if we put the passy in your mouth and grab it yourself and after chewing on every possible bit of surface area you finally do get it in the right way. that's actually pretty cute and making me smile right now=) but it's so sad to watch. i want to just fix it for you so bad but we can't anymore. it makes sense that a baby would get their little world rocked after 2 surgeries in a week, along with a dose of sepsis and pneumonia, etc, etc...but we just miss how happy you used to be and how "easy" it was before. that makes me laugh too=) there is one thing we're super thankful for. your respiratory status doesn't seem to have taken a hit during all this. i'm guessing that your pulmonologist will change you to cpap when he sees you next, and it seems like you'll be ready for it. that's pretty amazing=)

there's a wonderful bright spot in all the changes too. the fact that you want to be held all the time (and that you can't throw up anymore) means i scoop you up and we snuggle and snuggle so much more than before. i'm loving that. yesterday i needed to get ready for work but you were fussin' so i held you and your sweet face was so close to mine and you were studying my eyes and nose and especially my tongue-that seems to be your favorite. and you would give me these incredible smiles and reach up and touch my cheeks and squeeze my nose. and eventually you got sleepy so i patted your sweet bottom and we rocked and you fell asleep. and i could've at that point gotten ready for work. but instead i just kept rocking and patting that sweet bottom and looking at your unbelievably beautiful face. so happy in mommy's arms finally snoozing peacefully. we are so in love with you. do you know that? i am wishing i had thought of a better way to tell you about all your contraptions. i could've just plain and simple told you about them. but instead i also told you that mommy is a little weary. but again i pray you know that i wouldn't trade it for anything in the world. you are my heart's delight sweet one.

i also wanted to tell you something fun about daddy. when mommy is stressed and trying to calm you down daddy sometimes walks in and i love how he talks to you. very sweet and very calm. the most loving and vulnerable daddy-daughter talk i've ever heard. he loves you so much and he thinks you're just amazing. what a great daddy. i'm so thankful he's yours.

auntie shelly is coming in a week=) i can't possibly come up with words to express how exciting this is!!!!!!! we will have great fun, won't we???

love you sweets-

mommy

grandaddy saves the day

grandaddy just got here. he kisses your legs and you smile and smile and laugh and we love it. he has saved the day=)

matthew and nathan

hi lovey love=)

so i'm feeling the slightest bit better about things. i don't necessarily regret you getting a g-tube. it was definitely what you needed. but daddy and i keep laughing (as synical as the laughter might be) because we came into the hospital almost 2 weeks ago thinking this was going to make feeding you so much easier, but we're going home with it being so much more complicated.

so after dr rodgers talked to us wednesday we had a better idea of what he found and therefore did in the or. there was a "knuckle" of bowel stuck down in your pelvis. and at first he saw just one hole in it and he thought he would just sew that back together and move on with it. but then when he pulled it out he saw 3 more holes. so he ended up cutting 8 inches out of your small intestine (that's about 10% of the whole thing-actually not too big of a deal in the long run) and pulling each cut end up to the surface of your tummy. right along the line of your original incision. i'll show you a picture soon. so now you have 3 holes up there. the one on your left side is where the original g-tube was. they'll now close that until we can use it again. the two others are called an ileostomy and a mucous fistula. these two are big and beefy red because it is plain and simple a little bit of your intestines sitting right there on your tummy. weird kinda. the one in the middle is only a few inches (on the inside, and outside) from the first one and it will now have an bag over it to catch all the yuck that comes from your stomach. it will also catch anything that you drink as we keep teaching you how to take a bottle. and then the one on the right side of your tummy will have (hopefully-they're going to try today) a new g-tube button on it and that's where we'll really feed you like we would've done through the g-tube in your stomach. you have lots of intestine below that last hole so you shouldn't have a problem absorbing what you need and growing and gaining weight like you should. but speaking of gaining weight, you've actually lost 14 ounches since you've been here. sweet skinny little face. that makes us very sad. you'll catch back up baby-no worries. all this is temporary. he said in 6-8 weeks he'll put your intestines back together. but that means another surgery. and we can't help but be pretty terrified of that now. but no use focusing on being scared.

so we're definitely a little overwhelmed at this point. we're not sure yet if we'll be able to feed you with a g-tube button through the mucous fistula....and if we can we definitely won't be able to just bolus feed you (the faster way) because there's no reservoir like you would've had if it had been in your stomach. we're hoping we can feed you most of your food through a continous feed overnight so we can still get you up and moving around and playing during the day. ugh. only 2 months. that's what i keep telling myself. and i can't believe that, a) not only do we have to start interviewing new nurses, but b) we now have to make sure she can handle all the issues that come along with these extra things on your tummy. but you're a very sweet girl. anybody worth being at our house will realize you're worth it;)

daddy is funny. he gets sad about this too but he handles it a little different than me and i like that. it's good for me and it lifts my spirits. example. we have named your two intestine nubs after two of your uncles, matthew and nathan. matthew is the one in the middle, the one that will have the ostomy bag on it. and nathan is the one where you get fed. did i tell you that you get to poop like normal? not into a bag? that's a good thing. you'll have some bile and stomach juices coming into the bag but not your poop. i realize this is again a weird topic but we're pretty happy about it=)

we're getting a few smiles. they are few and far between but they make our day every time. gigi got you smiling this morning by laughing like a crazy person. we got a picture of it:

here's another one of my favorite pictures from this hospital trip. you are the most beautiful thing=)

here are some more. i realized i have lots of favorites.

sweet face=)

ok that's all for now. love you sweets=)

mommy

when it rains it pours, apparently

you've been in surgery for an hour and a half. dr rodgers' nurse just came up to talk to us. we knew that wasn't good when he sent an actual person instead of just calling us every hour like they normally do. you had a part of your bowel that was stuck down in your pelvis, and he found four holes in it. so he cuts that part out and you get an ostomy. i can't even believe i'm writing that. that means he brings the end of your bowel where he cut up to your skin and creates a hole there and you get a bag attached to it and that's where you poop. are you kidding me? so it's temporary-the nurse said probably between 6-8 weeks. they're also going to give you another central line (an iv that goes further into your veins closer to your heart-it lasts longer) because you need TPN (total parenteral nutrition) because we still won't be able to feed you like normal or through your g-tube. i don't know how long we'll be here. i guess we find out more when he comes and talks to us.

we've found a fun little pattern with you-when we take you downstairs and you're in the room with us right before you go into surgery, you get really active and happy. remember with your diaphragm repair surgery how that's the first time you really woke up and looked at us? today you were laughing and talking so much. i got a video on my phone. we loved it. and the anesthesia resident was telling us how beautiful you are and how pretty your eyes are and rubbing your head-therefore we like him.

i'm so so sorry baby. i can't help but wish we hadn't decided to get you a g-tube. i love you.

mommy