jake and i had a nice long pip-filled day. we both had some work projects this afternoon, so we tried to get to b-dale a little early to cram in some good times before we go to utah this week. are you ready? here is the stunner...piper jane wasnt a total spas case. i know, right? apparently, they had been weening a little too quickly, and that was part of the reason she was being such a terror (i mean that in the nicest loving mother way possible). so, they are going to go slower. today was the best visit i've had with pipsey in over a month. she still wasn't very smiley or playful, but she also wasn't abusive or irritable. that's all right, because thankfully, i have a lot of really adorable pip smiles previously caught on camera to get by until i can get some more live action ones.

since i had a thing to go to, i couldn't risk getting formula leaked all over me (it happens. and it happens a lot) from pip's g-tube, so at first i refused to hold her. i told jake that since i could see her on tuesday, he could have her. eventually, i got jeal. it worked out because jake had to leave the room and he handed my pipsqueak over to me. by the way, let me interrupt to say that i regularly take naps in piper's crib. the thing is huge. it's really not that weird. i mean, it's not that weird to me. other people kind of make a big deal about it...not at b-dale...and one previous hospital person was like "get out". anyway, that explains these pics. back to the story, jake handed my pipsqueak over and she immediately laid down with me. something she doesn't usually do. i melted like butter on a hot skillet.

camille, if you are reading, piper likes the kitty cat a lot. the only reason i'm using it as a pillow, was because my head needed to be just a little higher. and kitty did the trick.

pip can be very snuggly, but then she always ruins it by putting her finger all the way up your nose. or by trying to pull of your eyelashes.

yay, a good day! i'm so happy! like i said, we are going to utah on wednesday, and we have started getting nervous to leave because of piper's slow recovery. today helped a little with that.

i had to post this too. mainly, because jake is a babe and piper likes to tap his huge watch.

we are back at blythedale.

piper jane is in her old bed. with her old roommates and her old nurses. exhale...

january was crazy. it was eventful, the bad kind. we are all exhausted (see pic). but all i can think of is how lucky we are. i held piper jane on monday for the first time in three weeks. i fought the tears, but couldn't for very long because she knew who i was. it's always a worry when she gets so sick, we never know what kind of permanent damage there could be. we are so thankful that her little body has healed so remarkably despite the countless setbacks she has faced.

on wednesday morning i walked in and she smiled at me. the goofy, crooked smile that i missed so much. on thursday i clapped her hands together and she kept clapping after i was done and laughed at herself. how does she remember clapping after being asleep for two weeks and sedated for a month? how does she remember us? i'm amazed.

pippy has her days and nights mixed up. she took a one hour nap last night but otherwise played until the sun came up. i was with her for four hours today and she slept the whole time. she has no idea i was even there, ha. i took advantage by snuggling and rocking her, and then clipping her witch finger nails, finally.

hi! pip is doing much better, so we hear. we are still too sick to go to the hospital. how is that for ironic? what matters is, piper is finally awake! <-and p***ed off about it. although she isn't completely stable with her vitals and such, she is well enough to start the weening process. her vent settings have been so high and her medication cocktail is likely one of the highest ever. so, hooray for lowering them. i spoke with her doctor at blythedale today, hooray for returning! we are doing all we can to avoid the same song and dance of blythedale-wannaque-picu, so hopefully we can scare people into giving us our way. i'm really just thrilled to be going back to blythedale, even though it will likely be at least a few more weeks....and we will be going to the yellow unit. yep, green unit is for two year olds and under. she only sneaked her way in staying in green because she was re-admitted a few weeks before her 2nd birthday. so we will have new nurses that we dont know! kind of sad. really, can't complain though. this pipture is from about 3 days before piper got sick. pretty crazy that it was such a good day. i would have never believed the battle we were in for that week.then these piptures are just some old ones i came across from june 2008. i can't believe how little she is! this was just after her 1st birthday! she couldn't even sit up by herself yet and she is wearing a newborn romper. so nuts. also, those are katie-kate's fat feet in the background. this was their first cousin meeting.

she really was like a little baby in my arms. now she is so big! even though it takes much longer than the average kid, it still seems to fly by. wow....that's what i say to all that piper, jake and i have been through together.

my poor little pip. no one is sure what is going on, but not only is she not getting better, but she got a little worse the last few days. her chest x-rays are continuing to be foggy with lots of lingering infection. 10 days of antibiotics and about a dozen other medications and still nothing. i think the doctors are as frustrated as we are. when you're working with a child who the medical history she has, it makes things really complicated. pippy likes to keep them on their toes by giving them all kinds of challenges.

i like that pippy isn't puffy like she was last week. she looks like her pretty self again, even though she is still sleeping most of the time. they have tried a few times to take her off the paralytic, which hasn't worked, but i was glad to snap these two photos of her cute legs crossed during the off-the-paralytic time. she sits like this often when she is not sick, so lady-like.

dont mind her bloody art-line. try to focus your attention on her adorable e.t. phone home toe.

carefree days.

outdoor activities.

non-stressed husband.

and mostly for my birdie to feel better, she is still asleep. we are really missing her so much. it seems strange considering the insane amount of time we have spent at her side. i can't wait to hold her and play with her. i'm aching for the enormous, goofy smile that she earned by belonging to me (and i earned from my dad). i miss her pipsqueaks and tapping. but again, mostly that smile. my pretty pip, hurry up so we can play again soon.

we are out of real danger. she is starting to recover. it's just taking way too long.

it's ironic that i was telling my friend about the worst weekend of my life, just 3 nights ago. January 17th, 2008 was the night that Pip's heart rate slowly dropped lower and lower, until it was in the single digits as a result of a serious bacterial infection. we held our breaths and cried. the doctor shook his head and told us it was likely the end for her. after sitting around 6 for a about a minute, her heart rate started to slowly slowly climb back up. it felt like a miracle. i could tell the doctor was shocked to see us on his next shift two days later.

i think about that night sometimes. all the machines she was hooked up to, all the different lines she had in, all the blood transfusions, the oscillating ventilator, the medically induced coma and how she was so swollen that they had to goop jelly on her eyes because her lids couldn't shut all the way. she had stretch marks from all the fluid, she looked nothing like piper jane.

almost 2 years to the date later, we're there again. sorry if that was a long round-about way of it. this sucks. she is just short of that sick, which is a good thing, but she is very sick. it started on wednesday night when we met her in the emergency room at st. joseph's, i couldn't believe when the doctor told me she had almost had a cardiac arrest. the last two or three times she has been to the ER or PICU, it has been for moderate respiratory distress. i was kind of just expecting to see her breathing hard and a little upset. i couldn't believe she had been constantly ambu bagged since her arrival. total denial. around noon she was transferred to columbia. i rode in the front of the ambulance since the fellow was in the back with pip and the other paramedic (let me mention that we know these paramedics by name, they know piper like they know the back of their hands. this was her 17th ambulance ride) so i wasn't able to see what was going on. in my head i kept thinking that things are getting better already because we are going to columbia and it is one of the best children's hospitals in the nation. then the lights came on. then the siren came on. then we were going 90. have you ever gone 90 across the gw bridge? it's impossible (literally), unless you are in an ambulance.

this is getting long. it's good to write it all down, because i tend to get flustered and upset on the phone when i try to explain the situation. also, jake is still trying to get some sleep since we came home so late, and this keeps me busy.

we sat in the waiting area while they worked on her for about 5 hours. we were both not really sure what was going on. her heart rate started to drop, and they were having difficulty in trying to control it. the wound up doing and emergency central line, that goes directly to her heart, which helps a lot. she in on nitric, but as of this morning they have been able to ween that down by half (good sign). also, through the night they were able to take her off her blood pressure medicine. she got a blood transfusion last night because her count was low. her white blood cell was 3 times the normal amount because she is fighting pneumonia. she is on a paralytic drip to keep her still. so, she is medically comatose like she has been before. it's hard to see her just laying there, but compared to the morning when she was awake and crying out, i choose this. they had to tie her arms down and she couldn't understand why. she would just pull and pull at them trying to get them free. then she would look at me confused why i wasn't helping her. the hardest thing personally about these episodes is feeling helpless. i can't make it go away, and i can't make her feel better.


i just keep thinking, i can't believe this was only one week ago. i think i left out a lot of stuff, i'm pretty sure i rambled and proof reading seems too exhausting, so go read jake's blog.

i had a good day, despite my fears of driving to Wanaque by myself and seeing pippy sick. The nurses have been telling me she is feeling better, but i convinced myself that they were lying to me because they are scared of me. i have been really mean, so i dont blame them really. when i'm concerned about the pip, i really just can't keep my emotions together.

So, when i got there, pippy smiled a massive smile to welcome me. then we played and played. Piper Jane was herself. her spunky, silly, smiley, hyper-piper and throat grabbing self. i could do without the throat grabbing, but a minor con to so many pros. plus my throat is so grabbable.

her feeding tube disconnected and leaked all over my jeans so i went to the bathroom to clean myself off. i kind of felt like i shouldn't have left her like this, but it was so cute to look from the bathroom and see her standing there all alone and curious.

you can tell she is wondering if she is going to get in trouble for being alone. yeah right....pip in trouble.

when my parents were in town, birdie had a complete heyday with my dad's glasses, so i decided i'd wear some. the first thing she did was pull them off and then poke me in the eye immediately with no warning. and then she laughed at herself.

i might frame this one of the big chucks/little chucks. it was an accident that we matched, i was all "pippy, you and mama match!'' and she was like '' squeak squeak". and then she threw her Dora on the floor. She always does that.

Merry Christmas! We hope it's magical!

forgive me for nearly copying jake's post word for word. I wanted to use different pictures, but i like these the best!

To make a long story short, Pip was supposed to move this week, but didn't. Having Piper Jane at Blythedale for Christmas is really all I need for a present. and a handbag...

So, you guessed it! Piper Jane met santa. She LOVED him. It was so sweet. A bunch of volunteers came in to help take pictures and assemble the toys. Can you think of anything more Christmas-y than volunteering at a childrens hospital? Doing all you can to make sick children smile? It was one of the most special moments that I have witnessed. They came to serve sick children, while giving us the opportunity to have an experience normal parents have, since we can't take our babe to the santa at macy's. It was awesome. Jake and I later swapped stories of holding back tears during various points of the visit.

so so so sweet how gentle they were with piper. this is where she figured out that this present is for her. and that all the weirdness of the day was worth it.

I love it! I do! When santa left the room, Piper's eyes followed him all the way out the door.

after the elves put the princess shopping cart together, Piper couldn't wait to get her hands on it. I love that it is filled with Princess groceries.

cee-ute!

today i will put her in her real halloween costume, the one i slaved over for ever. this court jester is cute too. i felt bad for not bringing her costume yesterday (i wanted to save it for when jake could come, he has never been able to see her in her costume) because they had all the kids parading around and all the nurses were dressed up. so debbie gave us this little costume that they had laying around. for one of the cheaper, store bought costumes, i thought it was pretty cute.

piper jane was so confused when i put her in it. she looked around, looked at her hands, covered her face.....didn't really know what to do.

so she pretended like nothing was weird and got back to playing.

i could tell she was a little embarrassed to be dressed so ridiculous when her newest crush, john had come to see her.

i mean, i can't even look at these pictures, or type without laughing.

John was a little uncomfortable with it too. i wonder what it is like for a little kid. they were just playing and suddenly Piper was dressed like this. with no explanation.

"your funeral" was what kelly had to say when i told her i wanted her to drop her kids off with me while she was coming to town for a girls trip. i was so excited to spend two days with these girls. i had all kinds of fun stuff planned out that had to be rearranged because of the rainy saturday we had. but as you can see, we wound up playing in the rain anyway. i never met a puddle that i didn't like.

i wish my hair would just stay like this all the time.

little katie-kate the sweet. i feel kind of like satan after what i put kate through. i'm pretty sure she thought she was kidnapped and had a small handful of melt-downs whenever it was time to sleep. i think sleep time is where she knows that it is for sure weird that mom isn't around. i tried everything...i was all "kate you can see her tomorrow. kate, i'll give you some sugar if you stop crying for mama." and my final plea was "if you don't stop crying she will never come back". ok, bs on that last one.

for ser's though, seeing such a little scared person cry is heart breaking. i felt like satan i tell you...

the good news, she didn't miss her mom at all during the day. in fact, a few times she loved me and jake. she would run up to us with a big smile and hug our legs...especially to jake. when i was a nanny, the wee tot i watched (one of the four) was kate's age, and there is a BIG difference in their behavior. kate is very happy, loving and not spoiled at all.

seeing the pip: if kate would have allowed it, pipsey would have pulled her hair and poked her eyes all day. but kate didn't. here is proof that piper jane is totally guilty.

meg is a very good older cousin. she was SO excited to see piper jane. she kept asking me when we were going to see her. when we got there, she was gentle and interested in everything going on. meg is a very special girl to me. when i lived in atlanta, i got to babysit her a few times a week and we really bonded. she doesn't call me "mae mae" anymore, and she now calls her favorite movie "sleeping beauty" instead of "sleeping Judy", it's a little sad to see her getting so big, so fast.