july 16 -18- projectile poop, and catching up

isn't alliteration funny?

this poop was amazing- really! [i find it amusing that bowel movements are the topic of discussion regarding the very old and the very young. ever notice that? i would never talk about my poop...(except for on the blog, while pregnant- which doesn't count.) you probably don't talk about yours... but over 70 or under 7... it's fair game for the dinner table.] anyway, a few days ago uncle rob was changing her diaper, and bam! she shoots poo about a foot, covering the end and top of the isolette. that's my little champ... power pooper. (the nurses were not amused... but we did clean it up. :)

in other news:

breathing
her sprinting is going grand. sometimes better, sometimes worse. last night she sated fine, but needed between 70-90% to do it. not good. we decided to put her back in bed, and as soon as the nurse put her back she went to 100% and stayed there. we tried it out, and got her down to about 40% sating fine... on her belly in bed. please tell me that term babies are not so particular! i want to be held, i don't want to be held, it's too loud, it's too quiet... blah blah. so picky! :) anyway, she ended up staying on 40% for a while to finish out her sprint.
today she did fine, but required 60%. i posed the question: which is better, to be in bed sating fine on 40%? or to be held needing 60%? the RT and the nurse said it's about the same... holding is so important, and she should be much more comfortable on the cannula. i definitely feel closer to her when she's on it. she face plants into our chests and is happy as a clam. (except when she doesn't want to be held. :)
oh! and today she was sating well on 35% on her back! positioning is everything in her little world. so i'm really happy that she did well on her back. and tonight she is on 34% on her back again!

(the discoloration on her nose and upper lip are duoderm, a protective adhesive to keep her skin from breaking down.. not a mustache thadd.)

her skin gets more translucent and her eyes look bruised when her hematocrit gets low

holding her kangaroo today

big yawn!

she ALWAYS face plants on our chests. i think she likes the freedom from the cpap. "look what i can do"...

eyes
she had her ROP (retinopathy of prematurity)exam. so far so good. they said her eyes are still "premature". to which i reply, "of course they are". i thought that this meant that they still couldn't tell if she was developing ROP. (in which case it seems absurd to keep doing the exams until she gets to her due date.) but, i got a clarification today, and really, this is more of a diagnosis best stated "her eyes are premature, and we see no retinopathy yet". they fully expect that she will develop it. several of the nurses and the doctors have made that clear. according to the odds she will get some stage of it. we're hoping for stage 1, self correcting, if she has to get it.
i didn't intend on being there for the exam. (i have an aversion to eye things.) but it just happened that way. and i was going to wait until her turn, then put her down and leave. (i'd been holding her.) i just couldn't justify leaving her there alone for my own comfort. they dialated her eyes several times, and about an hour later the doctor came by. he clipped her eyes open with metal paper clip looking things, then rolled them around with a metal tool that had a round hole in the end so he could look inside. it was unhappiness. she cried the whole time. luckily they were cool with me containing her. (which apparently they pay some private to do. hehe.. poor guy seemed like a fish out of water to me. holding down babies.)

dilating her eyes

getting ready

the exam

her poor eyes


blood
her hematocrit levels are going down again. she's at 27 according to the results from last thursday. i talked to the fellow, and he said they really don't want to transfuse her again. they're hoping her bone marrow will kick in soon and she'll make her own. he said if she gets down to about 23 they'll consider it. (she was at 20 last time they did it.) there are pros and cons. apparently she'd probably need less support in the way of oxygen if she had some blood. i guess it helps. but, they'd have to back off on her feeds because the little ones can't handle so much fluid at once. so, we'll see what monday brings after her lab work.

weight/food
over the 3lb mark! yesterday she was 3lbs 2oz, and tonight she is up 20grams to 1430grams! yay! 1500 is typically clothing time... so we're super excited... or at least I am. :) clothes just make me feel like i have a more "normal" baby. the cpap may hold her back for a bit. we'll have to see what the doctors say. but she is definitely requiring less work from the isolette to maintain her temp.
(the isolette has several settings. the setting she is on now has a probe on her body that tells the isolette her temp, and it adjusts to keep her at a preset temp. the next setting is one that just has adjustable temp control for the air inside the isolette- this is the setting that they can wear clothes/be swaddled on. and the last setting has the top up with just a warmer... so it's more like an open crib, with just a little help.)
she's on 28ml every 3 hours over an hour. hopefully they'll start shortening that hour period soon.

me&thadd
my day off yesterday was SUPER productive. you'd be amazed what freedom it gives you to not get online! :) of course i came back to many messages, and emails to be returned... thank you all for your support. i didn't go up to the hospital, which i feel guilty about, but decided to take yesterday to recoup. i went for a mile jog with mady, washed myself, her, a load of dishes, 3 small loads of laundry(AND put them away! :)... wrote about 10 thank you notes, straightened up the house, washed my bottles, took out the trash, pumped twice, made up the beds, packed up some boxes to ship to friends and family... all after 1pm. (i also slept in until 1pm. :) believe it or not, that actually felt good emotionally.
we looked through max's stuff last night and had a nice time together. also, spent several hours up at the nicu with wren. we sure do wish he was here with us. looking at the pictures we can see they would have looked so much alike.

july 17- wren is doing great- more info tomorrow

i'm taking a full 24 hours of internet silence today. i wasn't sure what to do... today is max's birthday.
it's strange... i didn't even know what day it was- i've been off on my dates for about 2 weeks, i have to ask all the time. but i could feel it coming. i thought i had moved on. not that i'd forgotten him, or what we could have as a family, merely that the sadness had changed into something else. it definitely has not. it still comes and goes, but right now it's coming. with a longing i don't even know what to do with. i think about how nice it would be to have him here... and wren.. to have our kids. it just breaks my heart.
so, in honor of max, today is an internet free day. thadd and i are planning a trip to the beach this evening to watch the sunset and relax and think about him. we couldn't decide what was appropriate- but, i'm sure whatever we decide IS what's appropriate.
hug your kids today. and remember when they're throwing tantrums, making messes, waking you in the night, and generally being annoying, just how blessed you are.


maximus morris
july 17, 2008
"i shall go to him, but he will not return to me."
2 samuel 12:...23

april 19- a happy day

today wren is starting week 21. most of you know this was the week that max died. we had already found out that there were problems in week 20... and by a few days into week 21 he was gone.

as i look forward to meeting wren, and the rest of the pregnancy... i now have a confidence that i didn't have before... and a hope that maybe, just maybe, everything could turn out ok. i don't think i'll be at peace with having her until i hold her in my arms- and then, i'm sure, a whole new set of worries will be on my heart! :)

tonight we spoke in our small group about prayer, what it is, why we do it, what it can accomplish. in the end i know that god's will supersedes my own... and that whatever is supposed to happen is just exactly what happens. i pray daily for the health of my daughter, hoping that god will see to her safety (and salvation someday). what an amazing avenue we have in prayer! most importantly for me now, i realize that i can cause a change in situations through my pleas to the lord, and that i can give my worries to him. it doesn't do me a bit of good to lose sleep worrying about this little bird.... but it does give me peace to come to that understanding. only god can see to the outcome of our situation.
with that in mind i ask that you all continue in faithful prayers for our wren. (and me too i suppose) that we can make it through as long as possible without any complications. more importantly though, that we can have peace and reliance on the will of our lord.

feb 14- mini breakdown (hard to write, hard to read)

i was on the way to pick up thadd tonight... and for some reason the fact that i'm pregnant really hit me for the first time... and the implications of that really hit me. i began thinking about my time in the hospital (about 2 weeks) and that led me to contemplate what the most horrific part of that experience was. (i know, right? what a great train of thought!)
there were many things that were hard about that experience. i thought first about the pain of my major organs shutting down. (since that's what i felt first.) they tried to convince me that it was gas- believe me, liver failure doesn't feel like gas! that pain was like nothing i've ever felt. it felt like someone had reached into my abdomen and was wrenching my liver out. but that wasn't the worst.
after i was admitted i was on so many meds i don't even really remember the whole week following. i know many people came to visit. amy was there...betty came, and my mom, and my husband... but i couldn't really keep one day straight from the next. even the actual loss of max... it was really not something that i dealt with for another week or so. so that wasn't the most horrific experience while at the hospital. and from the time they induced me it was several days before i delivered.
the labor... now that was painful. i was on fentanyl... which is a pretty strong opioid.. so it made me tweek out a little. i was itching like crazy. so they gave me benadryl. that made me sleepy, but stopped the itching. i guess that someone decided that benadryl wasn't the best... so they gave me something else ( i have no idea what)... and that actually counter acted the fentanyl and made the pain more pronounced than if i had been on nothing at all. (thanks, right?) but even the actual labor wasn't so bad. i mean, it really hurt... but it gave me confidence that i can have natural childbirth in the future and be ok. and it was something that i knew had to happen.. and it really was a starting over point in a way. i needed to have max, in order to let him go.
the worst part of it all, hands down, was the magnesium sulphate. which is a little weird. at the time i really just muscled through it... but looking back it made me really scared. i don't want that again. maybe it just really stands out as a representation of the whole experience.. .but as i was driving i was brought to tears with fear of being in the hospital... and the feeling of being put on that stuff again. i don't know if any of you have ever been on it before...(i would love to know if you have).. but being on it (properly) isn't so bad... it's the PUTTING you on it that is the kicker. it feels like your whole body has been lit on fire from the inside... like they're pumping acid into your veins. (and no, i'm not exaggerating. it's terrible.) once your body adjusts to it you just feel really lethargic. (the first night they gave me too high of a dose- i couldn't lift my head and was drooling out of my mouth. i realized how people who have no control over their bodies feel-it was incredibly frustrating.) when on the right dosage i could still sort of move around... with a little help to roll over and such... i think the reason that this stands out in my mind is because i was taken off of it about 3 times and put back on. if i had just been on it for the whole time i think the experience would have been much easier. (because as i said, it's the initial putting you on it that is so dreadfully uncomfortable.) but every time i was taken off i would have mini- seizures or be hyperreflexive... and back on the mag-sulphate for me.
whew. so... after thinking about it rationally, i realize that a)i'm probably not going to get eclampsia again, and b) if i get pre-eclampsia, i prbably will not get hellp syndrome... and c) even if i do... i would be ok- even if they had to put me on the meds again.
that's the decision we made when we decided to have another child. so as i would never hope to lose another child, or go through any of the things we went through with max, i am ready for whatever happens. that's sort of what this life is... just being ready, and accepting the things we cannot change. i hope and pray for the health of my child and myself daily... i pray for wisdom that thadd and i might make good decisions about our future in every regard... but in the end god's will will be done, despite our decisions. (and don't forget time and chance happen to everyone- ecc. 9.11. i don't care for the view that god is micro- managing every aspect of our lives. i'm not saying he isn't, i'm just saying we have to be careful what we attribute to him since we can't know what exactly he's setting in motion and what is happening randomly.)
i get so many people that say.. "how could god let this happen"...or even christians who say "i don't know how you're so strong." maybe they're just trying to compliment me. but really when i look at it in a big picture way... i realize, maybe more in times of tragedy than in times of joy, that this life is really only for one purpose- to serve god. and all the other things that happen along the way- good or bad- are just incidental... it's how we deal with these things that makes us who we are. we can draw on a relationship with god for strength and comfort... or we can let a tragedy paralyze us. i realize that if we lose another baby it will be a devastating blow to our marriage, to our families, it will be extremely disheartening and honestly i don't know where we will go from there. but, that said, it is a possibility, and one that we have to come to terms with. i'm not especially strong... or even especially enlightened in the "big picture"... but i do realize that bad things happen to good people (and bad) everyday... that god's love isn't about me being happy and fulfilled only here on earth... this earth is about me being happy and fulfilled with only god's love. everything else is just a blessing.