day 70 in the nicu- my little weed

let me tell you about how my little 1lb 11oz baby now weighs in at 4lbs 5oz! her 13.5inches has stretched to 17! what a big girl.

june 26

august 9

i breastfed her twice today for about 20 minutes each time. she had a little spit up, but they've decided she probably doesn't have reflux. her poo is still super mustardy, watery, so the doc decided to go ahead and lose the hmf. YAY! whew... now i can sleep more soundly at night. (i hope that was the problem and that in the next few days she'll get it all out of her system and be ok.) she still continues to be restless with stooling, but she cries less while doing it. (but you should hear her when we try to change her diaper- she's miserable! there's a broken down spot on her tushy and on her labia. she's really uncomfortable most of the time. i can't imagine what diaper rash must feel like!) anyway, hopefully the absence of hmf will get her stools back to their normal seedy consistancy and lessen the aggravation to the diaper rash.

so, now for the notsogood news- she's back on cpap almost full time. last night it looked like she was retracting and she had been having short bouts of tachypnea as well. they took a blood gas and it was 60, which is a little high. her chest x-ray showed that she was expanding her lungs to 8 ribs. (9 is perfect) so, it wasn't a dire, save her life, emergency. however, it will be easier for her on the cpap for a bit longer. i was super bummed about it. but i'm starting to resign myself to this life. (what else can i do?) everytime the roller coaster comes up, it will go down. so, i've decided to just go ahead and pass on this next little bit. i'm going to exit the ride, and instead make active choices and think positively about where we're headed. the attending said that i could go ahead and feed her twice a day. she wants a few days to evaluate how wren's doing, and then she's going to determine what to do about sprints. i'm just happy she can have the cannula time when she feeds. she tolerates it just fine when she's on it. but maybe just gets tired after being on it for days at a time. (she made it about 48 hours this last time.)

her rop exam is scheduled for thursday... and next week will hopefully be picture day. :) (i found a great photographer on www.picturesofhopefoundation.org.)

august 8-9- can we keep the cannula?

this weekend wren's oxygen needs on the cpap went way up to about 50%. that is also what she was requiring on her sprints that she was doing on nasal cannula twice daily. the doctors decided on friday to leave her on cannula until she showed that she needed the support of cpap. obviously the cannula gives less support. (she won't have that high positive pressure opening her lungs.)
they said that if they are getting more support than they need the lungs can not absorb as much oxygen as they were before. (so, if she needed a setting of 4, but was getting 5, her oxygen needs could go up, even though she really needs less help.) one of the docs also explained to me that the measurement that we see isn't the "true" amount of oxygen she's receiving. on cpap 50% is really closer to 40. on cannula it's even lower. so it's better all around to have her on cannula if she can tolerate it. she's now been on the cannula for about 40 hours.... we'll see how it goes...

 

here's wren getting her (ng) tube last night. she likes it SOO much more than her oral one! (og)

 

sleeping on mommy

since thursday (day 1-breastfeeding) i've been able to feed her about 5 times. it's really not that often, but it's a start. she's still having troubles latching. it takes her about 20 minutes every time. it's like i have to talk her into it... convince her to do it! but, once she latches she does perfect! she's still pacing herself, and feeds for about 12 minutes when she's willing to feed at all. this afternoon's second feeding was a bust- only 5 minutes. (so she got half of her feeding by tube.) having the lc there really helps. at one point wren was getting too much milk and her heart rate dropped. (yes, preemies drop their heart rate while breastfeeding if they get too much. all you term mommies are so jealous right? just what a mom needs with the stress of a newly feeding baby- heart rate drops!) anyway, the lc showed me how to occlude some of the ducts to keep her from getting too much. (basically pinch your thumb and finger almost together about a half an inch from the nipple.)

she's had her primary nurses the past few days... and a really nice night nurse. everyone's been doing what they can to help her poor bottom. i'm getting the stuff to make my own wipes, (oils, viva paper towels, and velour swatches to use at home) and they're making a special cream with butt paste, colostomy powder, zinc oxide, and something else... i forget. supposedly it's so thick you can wipe it and it doesn't come off. (which logically leads to the question: how do we get it off?) her poo is like water. i think most of us know what having diarrhea for several days feels like. (and those of you that don't should really live a little... travel to a foreign country and drink the water... eat some spicy foods for goodness sakes.) i hate that she's having to go through that.... and all for that stupid hmf. they've lowered the dose from 24 cal to 22 cal. i don't know what that means other than she's getting less. if this persists i'm really going to have to say cut it out with the hmf altogether. i don't like it to begin with... and just what i was worried about has happened! so today jeanette (her primary nurse) left her little booty in the air with the oxygen mask down by it to promote healing. apparently the oxygen works really well... hopefully the night nurse will be as diligent. (some nurses don't want to do it because of the risk of a projectile poop. understandable, but what's a little poop compared to her bleeding bottom healing up?

 

i swear, she's under there. i have her on her side, diaper open, on a chucks (the blue thing), oxygen pointing to butt,  with the blanket diagonal to cover the most of her. getting her like that is a little time consuming- but hopefully will heal up the bane that is diaper rash.

this past week the stars have aligned and wren has been able to meet many new friends. i'm happy to say she likes them all. sating high with everyone. (imagine the embarrassment- "i'm sorry, you make my child stop breathing, you can't hold her anymore". gasp!)
from friday:

auntie bonnie

 

auntie jen

i want to go to there...

all snuggly

we hopefully will be able to stay at the hospital soon. the transitional period where i'll be feeding her more is quickly approaching... how exciting! i really never thought this day would come!

tonight she weighed in at 4lbs 5oz!

august 5- 2 sprints a day

wren had a trial on 2 sprints a day today. she did great! i'm so excited that she's doing well. last night she got a bath. it went well. she tanked a little at first. and, she pooped in her tub three times!
our little bird now weighs 4lbs 3oz, and is 2 months old. hard to believe.
here are some catch-up pictures...

 

this is her mobile. i don't love it, but it was one of the only ones i could find that faced downward. 

what good is a mobile that's made for me?

 

08.03.09 snuggled in for bed

this is her 2month birthday. 

not a very good picture- but the only one i took before the battery ran out.

here are some after bath and in between bath pictures. we had to start over 3 times due to poo.

 

  

  

this is another outfit from auntie jessica- super cute!!!

 

these are the best times... she's snuggled in with mommy taking a nap.

day 63- chunk

wren weighed in at 3lbs 16oz! (i know, i know... 16 oz is a pound. but grams don't convert perfectly, so it won't round up until she's over 16.)

her feedings got upped to 34ml. she's tolerating it fine on the gravity feeds.
her c02 was 54. it's a little high... but not enough to change the cpap settings back up to 6. her sprinting went really well tonight. she got down to 38%. and was doing so good the doctor said she could stay on longer! :)
today wren's social calendar was booked. :) she had 2 visitors!

what a great day!

august 2- i'd like a little less peep people

today has been a good day!

peace.

in rounds they lowered her peep (positive pressure ) to 5. it had been at 6. they're checking her c02 at 4 this morning and will be able to tell if she's expelling it when she exhales. after we get the results of that, we'll know if she can handle being without the extra pressure. (we hope so, this is a step toward weening her off the cpap altogether.)

this was going to be a picture for daddy, but mommy found it too horrifying.

this is the result of cpap prongs..

her nasal cannula sprint went AWESOME! she got down to 40% and hung out there for about an hour! she was on 30s on cpap all day. (except for a short stint where they were having a hard time getting a seal... the prongs weren't fitting properly.)

they also changed her gavage feedings from over 30 minutes on a pump, to gravity. (just like it sounds- they just hold the syringe up, and it runs in her belly.) the bolus gives the feeling of "fullness" like a normal person has. eat, get full, stop. (rather than the pump over hours...) when we get that "full" feeling it releases all sorts of hormones and enzymes for digestion. she's tolerated this well... with no problems. she is still grunting/writhing/whining/crying/gassing A LOT. it just started about 4 days ago. i think it could be caused by the hmf. (i caved on the issue. i'm a bad mom- i know. believe me when i say i'm losing sleep.it just seems like there are already so many things that i have preferences on... i don't want to argue about that too.) i guess it also could be that she's found "her voice". in general she is much more vocal than she used to be. or maybe reflux? (though she hasn't been spitting up since a few days ago... and they attributed that bout of spit-ups to the fact that she had been on the trophic feeds for a few days when she got her blood transfusion.)
nns didn't go so well today. she's been latching about every other day so far. i attributed her apathy to doing it during/after a feed.. but today she was good and hungry... and instead of getting down to business, she just stared around at everything..completely uninterested. i bet if she get's hungry enough she'd be interested. (but i suppose that might just be cruel. :) i am thankful for her alertness. she seems to interact with her surroundings, and be interested in everything now.

you want me to do what?

she's going to have wrinkles by the time she's 6 from that "concerned" look she always gives.

she was up 115grams today. that may not actually be correct- but it could be. that puts her at 3lbs 15oz! (we'll see if she's still there tomorrow. :) but, even if she wasn't really up 115 grams... check out this weight gain:

the one on the left is from 7.17

the one on the right was taken today.

(the purple dummy is a size smaller than the green one.)

i have had the most uplifting experiences with her lately. she just makes me smile. i love reading to her... watching her sat high to the story of narnia. (we're reading the magician's nephew. tonight was the creation of narnia. she LOVED it. although, i'm not sure she understood the correlation. :) i love listening to music with her... either on my phone (joshua radin station on pandora) or her ipod (she shares an earbud with me. :)... it gets harder and harder to leave her everyday... i think within a few weeks i just won't be able to bear it! i definitely feel like a mommy now. now i can walk in and pick her up. i can untangle all her cords by myself. i know when she's ok, and when she's not. i change her clothes. i change her bedding. i do her laundry. i put her to breast (though she's not doing much there these days!) today, i got to put her mobile up in her crib. i just feel like i have a daughter... and i can't wait to nap with her on my couch!
speaking of naps... i picked up her co-sleeper yesterday! i got a great deal on it at kelsey's. they do price matching, and also pay most of the shipping themselves... so they're able to cut costs. they've got ADORABLE things there! i'm going to wait until wren's daddy is back home to set up her nook. i feel like that should be a mommy-daddy bonding time. :) (she's getting a nook in our bedroom. we only have a 2 bedroom, have all the furniture to set it up as a spare bedroom, and were planning on getting a co-sleeper at first anyway... so she doesn't get a nursery until we move next year.)

this is a picture from this evening... snuggled in her supercute bed. thanks for the adorable bedding auntie rebecca. :)

she'd been on the mask (vs.prongs) for about 6 hours at this point.

luckily her nose usually goes back to it's regular shape. usually.

also, i'd like everyone to notice that her clothes match her pink and yellow bedding.

that makes me a good parent- right?

july 23- hanging in there

our bestest, auntie katie (who also happens to be a nurse.)

one of the nurses suggested today that i separate my hind milk out to enrich my milk. apparently when a mom has a large supply it dilutes the milk more. so to beef up our little one we're going to start giving her mostly hind milk. it makes sense- right?
wren is now 3lbs 3oz! yay! and only about 20 grams away from wearing clothes. i'm so happy! i just can't wait to have that "regular baby" feeling when she's in clothes.
her breathing is going well. she's been in the low 30's on oxygen when she's on the cpap on her back. and in the 40s during the day on the cannula. (mostly because she behaves for auntie jeanette- one of her primary nurses.:) at night she's needing more oxygen on the cannula.. up to about 60. i think this may be because she's such a night baby. she wiggles and squirms around all night long! (mostly because she's trying to drive auntie katie nuts. :) i think this will resolve when she can be swaddled. she loves it SOOO much! so far the 3 on, 3 off is working out alright. cross your fingers and say your prayers!

july 22- THE bath

 

her first time being wet 

 

  

drying off her body

 

washing her head

 

drying her off

 

getting her baby lotion massage

 

  

  

snuggled in wearing her cute outfit.

july 22- first bath night

i'll post the pictures of the bath tomorrow...there are so many i have to edit them down...
in the mean time:

this is how she was when we came in tonight. the awesome nurse had her bundled and on cannula for us while she read to her. what a dearheart!

here's wren all cleaned up with some clothes on. we went ahead and took them off before we left... but she's so cute in them!

today they moved wren to 3 hours on cpap/3 hours on cannula. she did good today. we'll see how long she can keep up that pace. i'm worried that it may be too much for her. but, she's proven me wrong so far! what a little fighter. while they're doing the sprints at 3 on 3 off they want me to hold off on the nns. :( i guess that's ok. i'm just bummed because i wanted to get that part started. i long for that interaction between mother and baby. (of course, i know there will probably come a time... 6 months down the road... when i'm grumpy about being woken to feed at 3am or something... but those days are much in the future for me now.)

i am also moderately perterbed that, yet again, a different doctor started his rotation and now we're going a different direction. you'd think i'd be used to it. oh well.

wren has had her primary nurses the past several days in a row. i'm spoiled! things have been going so great! i won't know what to do with myself when we get a crappy nurse again!

the bath was great... a success by all accounts. (she ended up less stinky, and got a little baby massage. what could be better?) she didn't mind the water so much as the washing part. (thadd says if she keeps it up she's going to be "that kid" in middle school. hehe... :) more about the bath tomorrow. there are a ton of pictures i have to upload.... but off to bed now.

july 21- no luck at latching

but she didn't choke! which is a start.
she did great on her sprint today... both times. and made it through the 4 hours this morning only needing about 40%.

check out this super cute hat that auntie elizabeth made me! it's perfect!!!

daddy almost caught me smiling!

we had our bestest this evening and went in around 10 so we could have some quiet. i pumped while she finished her feed. (still 28ml over an hour every 3 hours.) i was SO nervous to try the nns. but it went ok. i have, of course, NO IDEA what i'm doing. but it was nice just to see her in that position. she managed to suck a little... but not latch. (which is to be expected.) the general consensus is that my nipples are a little big for her. she couldn't really even get her mouth around them. especially after i pumped. they get ginormous. (yes that's how you spell it. i googled it to make sure.) maybe some of you ladies could help me with this logistical problem?(specifically preemie mommies.) i think if she was hungry instead of full and tired it might work a little better too. but my husband is convinced that it is physically impossible for her to get enough of it in her mouth to latch. not that he fully understands all that anyway. she pretty much just sucked a little and fell asleep. it's ok for now. we'll just keep practicing. i'm happy to of at least been a comfort to her. she can't start breastfeeding for a while..so we've got some time.

bath time is tomorrow! :) it was too late tonight and thadd and i both have pre-6am mornings tomorrow...er...today. he actually fell asleep while holding her. it was super cute. he did a sleep jump in front of the nurses. we all had a good laugh.. and wren didn't even desat.

i'm off to get my 4 hours of sleep!

07.20.09- she tanked

today wren got put on 4 hours twice daily on the nasal cannula. her crit is low again. down to 26 from 27. it's definitely trending downwards. hopefully she won't need another transfusion. we're crossing our fingers.

i came in this afternoon and she hadn't had her sprint for the morning... so i decided to wait until thadd could be there so we could do the nns. (they want the sprints pretty close to 12 hours apart. so if i was there at 2, she probably wouldn't be up to sprinting again at 7.)
the day was uneventful. she did fabulous on her cpap again. in the low 30s while on her back. here's a picture of her on her back snuggled in with her beanie babies.

this evening there was a miscommunication about when we were coming in, so the nurse put her on cannula at 7. (thinking we were coming in at 8.) really, we were coming in at 10! so we arrived after about 3 hours of sprinting. she was on 60% on her back. (which isn't terrible, but not great.) i pumped, got the screen out, put on my robe... and got her out... she never came back up from the desats when we got her back. in fact, she turned dusky, sated in the high 40s and had to get a breath from the bag. (the oxygen mask with the bag attached.) the nurse really gave her the benefit of the doubt too... she tried everything... but she was just too tired. she was really working hard to breathe too- you could see her little muscles going in under her ribs. i think 4 hours might be too long for her for now. i guess we'll see what happens tomorrow.. i'm going to try again- at the beginning of her sprint!

july 15- almost at 3lbs!

but still such a small little bird in daddy's arms!

she is doing good on her sprints. her blood work is still coming back a-ok. not much new going on. she's up to 26ml over an hour every 3 hours. her cpap pressure is still at 6 from when the nurse changed it back a few days ago. her weight is now 2lbs 15oz. we expect her to cross the 3lb threshold tomorrow. it seems like such a stupid thing. but 3lbs seems so big!(i'm sure you term mommies that are reading this are falling out of your chair at that statement.)
i got to hold her for a little over an hour while she was on nasal cannula. she didn't do as well tonight, but she was pooping the whole time. that girl sure does poop a lot! she only got down to the 40s.(this morning she got lower than that.) i tried rocking her more. she LOVES it. and standing and swaying. thadd was a little shocked... but i think it's just a universal baby thing. and when she's not hooked to a wall, or any electronic devices, i plan on rocking her quite a bit in the comfort of our home.


some questions:

i have read that if their poop turns green it means that they aren't getting enough hind milk. is this true? is it ok? right now she's eating what i pumped over a month ago... and she's only had 1 green diaper at this point. i assume that they would tell me if it was a problem... but you know what happens when you assume!

can i put my medela parts/bottles in the dishwasher? has anyone had adverse results? and how do i get the water out of the tubing when i sanitize it? (by boil, or microwave bag) i've tried hanging it over the sink, and spinning it, luckily i have room.it terrifies the pets and really, where is the water being flicked to?

does anyone else's let down feel like pins and needles, or a million pinches? it is extremely painful for me. every time i get it it takes my breath away. it's been that way since day 1. and i don't see any of my breast feeding friends wincing in pain frequently while just standing there, minding their own business... i was just wondering if this happens to anyone else?

any ideas on something nice to do for the labor and delivery ward? when we lost max last year they took such great care of me. i wrote several individual notes, as well as one for everyone... and also brought 2 cookie bouquets. (one for days, one for nights.) this time they did an amazing job too. i wanted to think of something more creative if i could. (i am planning a week by week flip book to be delivered when wren gets out.)

july 14- grandad and mim go back home...

bye grandad!

see you soon mim!


wren did great today. nothing new. all the same stuff. her sprinting went awesome! the nurse started her at 100% and was able to get her down to 30s-40s. i think it was a little harder for her to be in the blanket rather than kangaroo'd... but obviously not too much harder! grandad and i both held her, and then she spent the last little bit on the cannula back in her isolette. i think grandad's humming and singing were what kept her sats up. :)
tonight, i was pumping (*sigh*), and thadd was going to hold her while she sprinted. then we (us and the nurse) decided that we would go ahead and wait for her sprint at 10 or 1 since she had had the last one at 1pm. they apparently like to keep them 12 hours apart- which makes total sense! (we'd just not heard it before.)we were happy to oblige... her nurse tonight is awesome. well, while i was gone, thadd got all ready to hold her, and the nurse set up her gavage feed, and it started going in, and thadd mentioned that she had been going on the pump over an hour. she hadn't been told that in her report. thadd thought that maybe they changed it. (they have been lowering the times.) she stopped it immediately to check. she's still supposed to be on the pump over an hour, and definitely DID NOT LIKE the bolus feed. (bolus is rapidly given as it drips in using gravity.)
she desated all the way to the 50s at one point, though she didn't have any bradys or apnea. the nurse said sometimes the full belly can push up to the lungs... so it was a huge deal with bagging her and everything! (i, of course, am oblivious while pumping.) when i got back she was sating high on 30%. when she came back she decided to do it right!
i called a few hours ago and she was doing fine. back to about high 30s-low 40s.
it's funny... but because i like and trust this nurse i wasn't even worried or upset at the mishap. if it had been one of the ones i don't like i would be livid right now. i suppose I'M pretty subjective about their care for my daughter too! i'm working on trying to be more positive, and not get so upset.

also, last night she weighed 2lbs 14oz! yay. we'll break 3 soon! oh, and last sunday she measured 15". this sunday it was recorded at she was 38". we decided that that was probably a mistake. :) so we'll wait until next sunday to see what length she's gettting to.