pics to go along with caringbridge update

i couldn't get the update from caringbridge to copy, but these are the pictures to go with it.


brandon and ethan after swimming at the waterpark of america

ethan and brandon at the waterpark of america

brandon going down a water slide at the waterpark of america

ethan at the waterpark of america

brandon and ethan at the waterpark of america

ethan blowing out the candles on his birthday cake

playing games at ethan's birthday party

melanie after surgery and impedence probe placement

waking up from anesthesia, wanting a mirror to see the probe in her nose--second best thing, mom take a picture and show her

merry christmas eve!

melanie is doing better this morning. urine output and blood pressure are better. ostomy output is still down. her heart rate is also still lower than expected. she continues to drain more than usual out her g-tube. she appears to be feeling better this morning and is more like her happy self.

they each opened their present from each other this morning then melanie took a bath. then they got to open the rest of their presents. now it's lego-putting-together time. :) scott found "baby in my pocket" (similar to puppy in my pocket which melanie loves) which has been a big hit for melanie. they are tiny little babies that melanie loves to take care of. the boys have been busy putting legos together.

in case you don't notice in the pictures--the boys got their hair cut last night. this is the shortest ethan's has ever been; first time he is down to no real curls. he looks adorable. i am anxious for some curls to come back though too. :)

glad melanie is feeling better this morning; hope she continues to feel better and has a good day tomorrow at grandma and grandpa's house too.

the tree before the celebration

melanie with her babies and puppies from her brothers and baby sister

ethan and melanie showing off the baby's gifts from brandon, melanie, and ethan

melanie playing with her new puppies and babies

ethan with his police car from brandon and sisters

brandon playing the game from ethan and sisters

getting ready to open presents and stocking stuffers

melanie opening her new baby

big smiles on christmas eve

melanie christmas eve morning

ethan super excited about his lego!

ethan's first indiana jones lego set--he was super excited!

chocolate sniffing his gift

melanie opening chocolate's gift for him

chocolate with his present

melanie showing one of the baby's gifts

melanie with her new baby

the gingerbread house we will put together soon.

melanie playing with her new tiny babies

ethan putting together legos

brandon putting together legos

brandon playing legos

melanie with her babies

brandon with legos, of course!

chocolate wanting to play with his present

melanie and her new doll

chocolate carrying around his new present and whining

melanie has been doing about the same. no new major problems for which we are grateful. she has had some significant fatigue issues, but that is nothing new and considering she is still anemic it's not surprising that it would be worse.trying to figure out her fluid balance. her urine output dropped again, so increasing her iv fluids. it is still less than it was before influenza/DIC (and i am giving her MORE iv fluids now that i was then). her weight is still up with quite a bit of fluid. haven't noticed much of a difference since increasing the diuril. will be checking labs tomorrow and will see how her calcium is doing since we've added the new medication.we have been enjoying the beautiful weather. melanie has been able to go outside. i took her for a walk in her kidkart saturday and sunday which she really enjoyed. her new doll and care bear came with. :) she got to play out on the deck and in the yard. she got very tired today and laid on my bed until she went to sleep in her bed. she was also able to go to church this morning. she "helped" me teach the 4- and 5-year-olds the songs for the christmas play, although after the first song she kind of zoned out and sat in the chair.yesterday we went to a fund-raiser for a local family whose daughter has had heart surgery. it was at a local athletic club. melanie played with some balls for a few minutes but mostly sat on my lap and watched the boys play. most of the things she was not able to do. she appeared to enjoy watching them. at one point she said, "i wish i was brandon and ethan. that looks really fun." then she said, "mommy, when i get better will you bring me here so i can play too?" ugh, talk about rip mommy's heart out. she says things like that off and on, and it of course always affects me; but with being pregnant i think it tears at me emotionally even more.today at least she got to do something fun. she and the boys (and her doll and chocolate!) went for a little ride in the back of grandpa's truck up and down our street. she was very excited about that and happy that was something she got to do just like the boys!before this warm spell, chocolate has been cold and shivering. we got him a blanket, and melanie has been wrapping him up so he stays warm. i'll post a picture on the blog site.the x-ray melanie had of her stomach last week showed that the balloon of her gj tube actually looked too tight and could possibly erode her stomach and make the hole bigger than it should be--didn't look like that had happened yet though. so i loosened the disk. this doesn't explain the leaking though. she is scheduled for a barium study to see if we can see exactly what is happening with her stomach contents. we'll do that sometime this week. melanie's skin continues to look better with the addition of the new medication from about a month ago. she has one spot on each arm that is open and bloody and oozing still. today i put gauze over it and used the mepitac tape that her skin can actually tolerate to secure the gauze (making sure the tape did not get on the open skin of course). she cried some when i did it because the tape was irritating, but she was able to tolerate it. i don't know if covering it will help or hinder, but hopefully since she at least can't scratch it directly it should help some.tomorrow is the big day for finding out if we are having a boy or a girl. scott and i will find out in the morning. i'll tell the kids and then i'll post it on here when i get a chance! exciting to think this will be the last night i will not know if this little "butterfly" i feel is a boy or a girl. then onto figuring out a name! i think that is going to take a while, although the kids already have their votes:brandon: autum for a girl, eric for a boymelanie: sara for a girl (though the other day she changed it to sally), tommy for a boyethan: princess leia for a girl, luke skywalker for a boy :)

we could use a few prayers in the insurance department. since i had to resign from mayo, our insurance is now through scott's work. they are refusing to cover some of melanie's medications, sending us wrong kinds of some medications, and now say she has reached her maximum benefit and we will have to pay full price from now on. obviously this is not impossible when just ONE of her medications cost around $3000 a month. we have not received a couple of her medications because they want full payment for them. i've made multiple calls--being disconnected twice and had to go through the whole automated system again--and have not gotten very far. i enjoyed taking a break from it this weekend but will have to start making more calls tomorrow. she ran out of one of her medications tonight and only has a week left of another one. yet another one we cannot give her because she does not absorb it--it is prilosec beads. the beads are nearly impossible to get in her j-tube to begin with, if we can get them in they clog her tube, and then--14 hours later--they came back out the tube as still-formed purple beads. she is not absorbing the beads like she should. so far they will not send us the compounded liquid form, so she has not gotten that medication for days either. the other medication they refuse to cover at all we are trying something else instead--it actually ends up putting her on two meds instead of one, but it is cheaper so they say we have to do it that way. there are some that have never been covered by insurance, so those we continue to pay as usual, but there is no way we can pay 100% out of pocket for every medication. very frustrating to take care of her when we cannot even get the medications she needs to keep her systems from deteriorating further. i am not looking forward to the hours and hours of calls i will need to make to figure this out. prayers that we could find a quick resolve would be greatly appreciated!


in the back of grandpa's pickup:

melanie giving chocolate some snuggles in her kidkart

the kids playing legos on the deck:

melanie sleeping with her new care bear, thank you carrie!

melanie got chocolate all bundled up to keep him warm

pictures from peds floor, doing better

lots of pics of melanie and her new baby . . .

hugging baby and doing neb:


feeding baby a bottle:

the next three she is actually sleeping in, various positions she was in last night:

talking to her new baby:

hugs for the new baby:

opening her gift:

doing beads. she and i meticulously filled the entire square with beads! this is after the hair was, but only about 1/3 of her hair is combed through

after getting her hair washed

snuggling with pinky her puppy

visit from dad, brothers, and chocolate

getting a platelet transfusion plus all the other ivs

saw these kinds of numbers pretty consistently for about a week, thankfully better now: heart rate 170, respirations 40 (more often was near 50), oxygen SATS 89

well, i still have no news. for some reason, they never came to draw her labs this morning. called them twice and they came at 8. got some of the electrolytes back but not the cbc (with platelets!). nurse made a bunch of calls and finally found out the blood was lost. had to call the service, they put in a request for redraw, now still waiting on labs to be redrawn. how frustrating! melanie is looking good. still blood in her stool and slightly red-tinged urine. she has some new bruising and petechiae on her right wrist/arm that weren't there before. but nothing we can do or will know until those platelet results come back! she's been playing quietly in her bed this morning. we've played with her new doll, fuse beads, read books, and now she is playing ps2. still too weak to sit up but can prop up on her elbow. anyway, we just sit and wait. ugh.her respiratory rate is a bit higher today than yesterday, not really sure why. heart rate is still down since the red blood cell transfusion.i laid down around 1 a.m. and decided to try to stay laying down as long as i could. the result was that no one made sure her g-tube was draining (the hospital beds are angled up on the sides, so you have to manually push the side of the bed down to get the tube to drain well enough), and this morning she and the bed were soaked in gastric contents, bile, and probably stool (the pressure is so high in her tummy that if it can't drain down the tube, it is just forced out around the stoma). very frustrating that as i try to take care of the baby, melanie suffers.her urine seems suspicious for enterococcus this morning, but she does not have any other symptoms so i will just keep an eye on her and culture if she develops more symptoms.i'll update if i can when the labs are back. sure hope they are back before i go to my appt!