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