july 30- amazing healing

so, if you read my last big post (here) then you know that wren was diagnosed with ROP, retinopathy of prematurity, stage 2, zone 2, two weeks ago. we were told that if it got any worse, we'd be looking at laser surgery.
here's some information on ROP. the diagram below shows the zones. as you can see, zones 1 & 2 have to have intervention. (whereas zone 3 can usually be left alone.)
today, the doctor said after her exam that he saw no signs of retinopathy! i'm just in shock. i know that god can do miracles. i know that god answers prayers. but to have something so...so... real happen in our lives. it was one way, now it's another... that's just... breath-taking! (of course, it could be that the doctor from the week prior wrote down the wrong information. that would be a MAJOR screw up.. but i guess it is within the realm of possibility.)

her eyes are all puffy from the exam

it seems like the past few years, the lord has definitely lowered the "hedge" around us and our families. (if you know in the book of job satan tells god that he has "put up a hedge" around job and blessed all the work of his hands- and that is why job serves him. he tells god to take that away, and that job will no longer serve him. job 1.8-10 charla standard version :)
anyway. it's just easy to feel like we've had more than our "fair" share of crap as of late. but, i'm reminded of god's answer to job, when job questioned the "justice" he was being denied. (why should bad things happen to good people...faithful people?) god answered, "where were you when i laid the earth's foundation? answer me if you understand." and "have you ever given orders to the morning? or shown the dawn its place..." "would you discredit my justice? would you condemn me to justify yourself?" job answered back "i know you can do all things, no plan of yours can be thwarted." (all that is around job 40-42ish.) wow! and that really sums up this life doesn't it? that with all the craziness that happens we can choose to take comfort in god and his plan, or blame him. either way, his will will be done.
rather than drowning in a pool of tears i've decidedly focused on the blessings that we've been given. (well, maybe i'm focusing on those things while swimming in a pool of tears.) and my, how we have been blessed! just as god has allowed us to have adversity in our lives, he has also taken care of our needs, and shown us mercy in so many ways. wren has not had NEC, IVH, she hasn't required extreme amounts of breathing helps, and now she doesn't have ROP. this isn't to say that she won't have problems, but, she's come this far without major hurdles. and that, in and of itself, is a blessing. (now she just needs to get to age 3! i guess i should start with age 0 first!) we also have been taken care of physically and financially. it seems like just when we've spent the last of our money on gas- random money comes our way!

the neonatologist over the nicu spoke with me today for quite some time about wren's development etc. she said that she can't guarantee that what we talked about yesterday won't happen... (she was in the meeting.) but she doesn't expect wren to have any of the severe issues. which at least makes me relax a little. yesterday was a trip! today was a little better. she also said that in her estimation that wren would probably go home in closer to a month. (THANK GOODNESS! but i'm not getting my hopes too high up there.) i talked to her a little more in depth about whether wren is behind. she said that the bout of infection that wren had for a week or so was really wasted time. when she was sick she wasn't developing her lungs at all. she said she's where she should be for having had that spell.

today katie was taking care of her. she did just fine. (yesterday she was having some reflux, really the first reflux of note that i've ever seen. she's also been having some issues with pooping. they think both of these could just be a reaction to being off feeds for a couple of days when she got the blood.) this evening she had a new nurse, she seems like a great lady, and was super caring to wren AND competent! what a combination! :)
wren weighed in at a whopping 3lbs 8oz last night.. she's still in the 10th percentile... but trending up!
i bought the car seat tonight. that was SOOO weird! it's the first big purchase we've made. i'm planning on picking up the co-sleeper this weekend. and finishing up her nook in our room this next week. this is the one i decided on:
i decided that i was going to carry her in a sling or wrap for a good portion of her baby time. lugging around the car seat, or dealing with the hassle of a stroller just seems like too much. especially since we're expecting that she'll be just around 5lbs when she comes home. (of course, i can kick myself later and buy either a universally adaptable stroller, or the britax one that goes with this seat.)
i also decided that i like cow print- who knew?

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.