august 28- a formal affair

tonight was a military intelligence ball for my husband's brigade.... i found out about it wednesday. for those of you who are counting- yes, two days ago. and of course, having newly had a baby. (ehem... well, i guess it was several months ago.) none of my gowns fit. and having my chesty problem that i've mentioned before, i usually can't just buy something off the rack. so, i'm looking at needing to get a dress, get it altered, and find accessories in the next 2 days... all while breastfeeding every 3 hours. at this point, you might be asking if my husband is still alive... yes, i thought better of killing him- though it did cross my mind. i decided to be the supportive wife, and go shopping today, find shoes that match a cocktail dress i already had, and have my make- up done at a counter in macys, spend the entire night wishing i was sleeping, and bemoaning the uncomfortable shoes i'd just bought. it was a night screaming ROMANCE! haha...
other than being the most embarassingly underdressed enlisted wife there, it was pretty much standard "army ball" fare.

daddy, back in the nicu

all that to say, while we were gone they tried to give her a bottle. she didn't do so hot. they used the nuk nipples, and she desated, dropped her heart rate, and only took 20ml. i think they just released too much milk at once for her since she's used to breastfeeding... we're trying the low flow medela nipples tomorrow.

it's so easy to say "just give her a bottle" and let me sleep!! i know why people fall into that trap. it's one of the more alluring of parental pot holes. but with my supply back on the rise, i can't really afford to be missing those baby-to-nipple times. and, of course, i have that little voice in the back of my mind that's making me feel guilty for using the nurses that i can't have when i go home.

but, in fairness, when we go home i won't have to walk 3 wards of a hospital at all hours with my hair as a tell all to my new- mommyness. you termie mommies should be SO happy.. you got to be sleep deprived, and crazy eyed, and wear your pjs for weeks in the privacy of your own home! haha.. i envy that SO much. i know when it's the middle of the day and i look like a zombie with sheet marks on my face that the people i pass by the elevators are wondering about me.. maybe i should wear a hospital gown- people in hospital gowns can get away with anything.

uncle brian got to come for a visit on monday... she was sleeping pretty soundly so we didn't wake her..

august 27- mirena-less

i had mentioned in an earlier post that my milk supply has been dwindling. (due to no fault of my own... i swear!) today i pumped and only got 20ml... she's been getting about 45 when they gavage fed her. so you can imagine that i was one frantic momma. i also started breastfeeding her every feeding! so, as happy as i was to do that, and get her one step closer to home, i knew she wasn't getting enough, so i kept asking the nurses to gavage extra milk after she fed. (of course she can't gavage when she's at home, so we have to resolve this problem quick!)

after talking to the lactation consultant we couldn't figure out what the problem was... until she asked me about birth control. when i told her i'd had the mirena placed about a week ago, she told me that was it. the progesterone released by the mirena is supposedly only localized to the uterus, but she said that some people are extra sensitive to progesterone in their bodies and have troubles anytime hormones are used. (the progesterone causes your body to produce more estrogen, which in turn blocks prolactin, which is the hormone that makes your body produce milk.) so, yes, i tried adding extra pumping sessions, taking my fenugreek, blessed thistle, drinking until i thought i might have water poisoning, pumping after feeding, putting her to breast more, sleeping (as i could), eating right.. blah blah blah. i tried it all.. but it turns out if your hormones aren't working- you just ain't gonna make milk! the lc told me that i'd probably dry up in the next few days if it had affected me so drastically already.

little bitty iud, little bitty milk supply

i went down to the walk in clinic this afternoon and had it removed. the doctor assured me that the lactation consultant, and i, are both just stark raving mad. that it "absolutely is not causing supply issues". that it "has been approved for breastfeeding women". "that galactagogues don't work" anyway. and that i should just "keep feeding her" to get my supply up. but that she "would remove it anyway if i insisted". perfect. nothing like being made to feel like an idiot when you have no sleep and are so worried about feeding your kid that you'd try just about anything. which is what i did, i had the dang thing removed. when i asked her about getting reglan for a boost (as the lc recommended) she said "it absolutely doesn't work, and studies show that it has no effect on breastmilk production", and that "none of the attending obs will prescribe it".

when i got back to the nicu, the lc heard me talking to the nurse about my experience, and she was hopping mad. she said that there are studies that support galactagogues, and reglan for that matter. and also, that many women have trouble with hormone birth control methods while bfing. she got the docs name to have the ob department "re-trained on lactation". haha... pretty hysterical.

my milk is already coming back up tonight... so much for the ob expertise. now... what do do about birth control???

august 25- my accessorized little bird

the cardiologist came by... he reviewed her early cardiac tests, and assessed her today. he said that she has an "accessory vessel" or "collateral vessel" from her aorta to her pulmonary blood supply.

i couldn't find a picture of it... so you'll have to use your imagination in the picture above.
anyway... he said that it's completely not a big deal. the murmur is "vibratory" which i assume means that's the good kind. if you have to have a kind. they also told me that this is just part of her physiology. even if she had been born full term she would have had this heart abnormality.

apparently the 5lb milestone yesterday was false. (it was about 125g bump from the day before.) today she was back to 4lb 14oz. oh well, she'll hit 5 soon enough.

my milk supply has been on the putz lately. there, i said it. i'm now one of "those women". i always secretly took pride in my ability to make tons of milk. if i have to have H boobs- i should at least have the milk thing going for me. i guess i'm being punished for my pride! haha... well, at least now i've seen both sides of the coin.. i can say, i definitely prefer having too much than not enough. i'm hoping with some fenugreek and blessed thistle i'll be back up to par in no time.

the nurse that we wish worked more often: amanda

the breastfriend- not just for women...

august 24- <3

today wren fed for 25 minutes! what a little feeder... i'd been backing off on her feeds to make sure that she could handle the time on the nasal cannula, but sure enough, she's doing great! still at 2 liters, but requiring only 40% or so on her oxygen.

they discovered today that she has a heart murmur. i think they're trying to give me a nervous breakdown! it can only be heard with the bell side of the stethoscope (the small side that hears lower tones) and only at the cardiac apex. (one small area.) they say this is why no one discovered it until now. upon review of her early tests, they did say that it could be caused by an extra vessel she has in her heart that was deemed "unimpressive" early on. the pediatric cardiologist should be coming this week to evaluate her situation. more to come on that front soon.

her poo is finally getting better again. (thank you hmf! for giving my poor kiddo the runs AGAIN!)and her gas is all but resolved.(it was so bad that even the docs were commenting on it.) just a sidenote: formula sucks. dairy sucks. our digestive systems tolerate it- but it is NOT good for us. neither is soy for that matter, so don't think that soy formula is going to be the end all alternative to dairy formula. soy creates a false estrogen in our body that puts development out of whack it kiddos. ok. i feel better, i just had to get that off my chest!

she had her pt session today. it was very similar to her ot session. (occupational therapy.) it's really just common sense stuff. and if i get ONE more brochure telling me how to recongnize my daughter's moods my head might explode! though i think i'll do a post for everyone, since you might not have a preemie, and therefore might not have been give 15 flyers, pamphlets and hands on training to how they're happiness is going.

she poops on me, then looks lovingly at katie-perfect. btw, that was my first time being pooped on... it was goodtimes.

all tucked in... i love a baby that can self soothe... ok, i'd probably love her anyway


august 23- will the cannula stick?

wren has now been on the cannula for 3 days. i think. i'm losing time in these hospital walls... she went down to needing only about 35% today! woo-hoo! i'm so excited. and she's still not having any troubles breathing. (obviously, since she was weaned so low.) they put in her ng tube this morning. (nasal gastric) so we're not having to take the og in and out each time she breastfeeds.
which brings me to breastfeeding. not so hot lately. i've decided that she's probably just using more energy to breathe, so she's not hanging in there to feed. she's fed for 11 minutes, 15 minutes and then 12 minutes so far today. it's really not characteristic for her to only go halfway at each feeding. she just gets pooped out and dozes off. i've tried stim on her back. (just running fingers with some pressure up and down next to her spine.) uncovering her feet, tickling her feet, and stim on her feet. rubbing her head, tickling her nose, cheeks and chin. pretty much everything but annointing her with some ice water. i'm just going to let her build her strength back up... until then, she probably needs the sleep. i'm still going to try every other feed. but i'm going to stop being disappointed when she doesn't nurse the full 20 minutes.
her poo turned to water again. grr. so the doc took the hmf out again. he said he wasn't worried about her not having it. on the off chance that she loses weight without it he said he'd add in neosure instead of the hmf they've been using. i haven't done any research on that one yet. though i'm sure it's dairy based. :/ he said they tolerate it better.
after some further research i think i'm going to have to do some further research on this head issue. (the benign extra axial fluid, or BEAF) here's one of the articles i found. please be prayerful that she can turn out ok. i'm planning on talking to the doctors more about this in the next few days.

auntie jessica finally got to meet wren yesterday!


august 22- never say never again

today was mirena day. for those of you who don't know, and have no desire to click on the link, it's an iud. following is the whole iud experience, as well as some ramblings about whether or not we'll try again. ok, you've been forewarned.
i had to take a pregnancy test yesterday- it came back negative- whew! so i get in there and they start telling me about all the possible side effects. for starters you can bleed more days than not- for 6 months! it can perforate your uterus and migrate around your abdomen. it can cause infection sometime in the next several months. at this point in the conversation you're probably shaking in your proverbial paper blanket just like i was... thinking... is it worth it? we could just never have sex again right?(which seems like a possibility while you're sitting in a doctors office hearing terrible possibilities, but is likely to be less appealing very quickly after leaving the office.) when i told thadd about all the side effects, it crossed his mind too- marital abstinence... probably not a logical choice.
the problem is that i've just been backed into a birth control corner. with my APS i can't take anything with estrogen- cross off the pill, the ring, the patch, the implants... and i can't get pregnant for at least 18 months or i could have a ruptured uterus and maybe die or something. (that's due to the classical incision i received when they surgically removed my daughter.) so then one of the attendings comes in... she tells me all about the horrific possibilities. i'm shaking in by paper blanket- and the other doc says "oh, this is the girl they were talking about." i've had very few times in my life where having "they" talk about me is a good thing. apparently the maternal fetal medicine docs were debating on whether or not i could even have an iud because of the classical incision. (it weakens the uterus and leaves me even more open to migration.) as i sit there and weigh my options i decided that i could always take it out, but i'd have to wait another 6 weeks if i changed my mind and wanted it later.
so, feet in stirrups, with the constant "scoot down" and "please keep your knees apart" reminders.. it began. they had to measure my uterus first. they use a long straw like thing that they felt the need to show me first. WHY!?? i prompltly informed them that they'd have a much calmer patient in pain if i couldn't also visualize what was happening to my poor uterus. i imagine it's tall and skinny like a model. it makes me happier. apparently it's also axial. read: points upwards so the speculum always hurts like heck because they have to keep it at a crazy angle. ok, enough of that. anyway... as i've heard it said "the uterus is not a junkdrawer"... it does not like to be rooted around in...so true so true... the cramping began almost immediately. my body revolted. it didn't take that long.. but of course, time staring at ceilings always seems longer doesn't it?
afterwards, i had a some bleeding... and i had a lot of cramping.... and then yesterday i had so much back pain that i couldn't walk, sit, stand, pick up my daughter or lay down without a grimace and a tear. (a lady walking down the hall told me i looked like i needed a cookie, and offered me a plate full. i was actually in too much pain to eat a cookie!) the head of the neonatal/peds department called in a favor and got one of the obs in labor and delivery triage to see me right away. otherwise i would have undoubtedly been in the er for 5-10 hours.
expected wait time =normal er wait(socialized medicine)+military hospital.
she told me my strings were in place, and that it was probably just deferred pain from the cramping. like how some women have back labor. hmph. well, this morning it was a little better, and i only had to take some motrin. a measly 800mg. :) it's a good thing too, otherwise it would have been a seriously effective birthcontrol method- just put the girl in so much pain that she can barely move, i promise it works.
i asked about the method in which it works. apparently the mirena is not an abortive. it creates a mucus layer that keeps the ol boys from making it up- also less ovulation. they did a study on women that had it for a year- they checked their hcg hormone every single day. none of those women had so much as a fertilized egg. it's good for 5 years, but can be removed whenever i want with successful fertilization only a month or two away.
so, all this brings me to the crux of the matter- kids or not? as i've mentioned before my APS makes all pregnancies a shot in the dark. we don't know what will happen with each individual pregnancy until they actually happen... we could lose another child at 21 weeks, have another preemie, or have a bouncing 10 pounder at 38 weeks... we just don't know. we've been talking about it from the first day of wren's life: will we try again? will we roll the dice? could we handle another loss? or another preemie spending months in a nicu? we already decided if we got the opportunity to adopt we would do it. (immediately, without question...so ya'll spread the word.) but we haven't completely ruled out another attempt at having another baby the good old fashioned way. gasp! i'm sure our families, and some of you are falling out of your chairs! haha... i think i'd feel like a knocked up 15 year old if i got pregnant now- how sad is that? we're adults. fairly responsible, fairly sensible, fairly capable of making life altering decisions... and yet i almost feel the need to make my decision based on other people's opinions. and, to a certain extent i can see why i feel that way.. we've asked so much, and wren's stay has been emotionally and financially trying for both of our families and all of our friends. so maybe they should have a say in our decision. ok, i guess when the time comes i'll just going to have to post a poll on this blog: should we try to have another baby? yes, maybe, never.... i'll give you guys some time to think about it- my classical incision has given us at least 16 months more to decide.
speaking of that, i remember when i had that section... i swore i'd never do it again... but as wren grows and interacts with us more- I NEED to have more babies! it is just so rewarding and i can't imagine not having a herd of them running around my house. (of course when i get her home and deal with all of the challenges facing her first few years it could put a damper on my "litter instinct". :)


a post for prayers

in honor of annaleigh.

our hearts are with you.

august 21- little big head

tripler army medical center dayspa... thanks lisa for pampering our little lady!

here's some information to get you caught up on wren over the past few days.
i found out a few days ago that wren's head ultrasound didn't, in fact, come back normal. she has something called extra axial fluid. this occurs in about one percent of noggins.(i guess that number could be lower than the actual number because most termies aren't given multiple head ultrasounds.) it has no apparent side effects- other than a bigger head than normal. the doc asked if big heads ran in our families... my initial reaction was no- then i remembered that some of thadd's family (love you guys!) has to search out the bigger sized hats, and that my nephew's head (he's 2 in just a few days) is(or was) in like the 75th percentile. so, even though thadd and i have standard size noggins, our families do have some tendencies to be bigger....
i also found out that her newborn screen came back normal. for those that don't remember this was newborn screen number 4. so, after two and a half months, it's nice to know she has no genetic abnormalities or major organ function problems... right?
ok, to more recent updates... yesterday they decided to sprint her till she can't sprint no more...(which is suppose makes it more of a marathon than a sprint.) she's now at 53 hours, i think. we're hoping she can stick it out this time. so far she has no retraction (more than her usual slight pulling) no tachypnea, and breastfed well. (though i'm still doing the different schedule of just a few times a day to give her time to rest up.) the "just a few times a day" schedule works for me too because of my back pain and the roxicet they gave me- i've been feeling a little loopy. needing to take it easy more... see about the history of that here.
she has a nurse today who hasn't had her in a while- hopefully it will go well. as i've mentioned i know it's hard when they haven't had them for a while to know a change in condition worthy of a change of course. but she's really sweet and competent. shes also the nurse who does infant massage- maybe we can get some tips!

everyone in thadd's company has been coming down with the flu, so we're on germ-x lockdown mode... which means daddy gets a mask.


august 19- hospital diaries

so, today i paid $15 dollars to update my blog. sheesh! haven't these people heard of wi-fi???!!! it seems like a hospital should have a hotspot here somewhere. but, alas, until that happens the updates will be intermittent at best. sorry.

so, this is day 6 or something of living out of a suitcase, sleeping on crappy sheets in an adjustable bed, and eating horrendous hospital food. for those of you that are wondering, hospital food + army dining facility= nothing edible for days. i've posted a question on my preemie mom board looking for tips on how they survived living at a hospital for weeks or months. it looks like i'll be here another month or so. sigh. i'd really hoped she'd be coming home on her due date. i had that idea in my mind. please don't ask me when she's coming home! (of course, if you read the blog then you already know... hmmm.. maybe i should just make a t-shirt or something for everyone else who doesn't read the blog. haha!) it doesn't upset me really.. just more depresses me to think about it. AND it seems absolute that she will be coming home on oxygen.
funny story: wren does qualify for SSI... a whole $60/month. i told the social worker her time was worth more than that! the paperwork is just too much of a hassle for that amount.

which brings me to the meeting i had with the social worker today. i found out tons of useful information. i never in my life thought i'd need the help of government programs... but here i am. (and they balk at me for not signing up for wic.) i just can't imagine taking those benefits when we don't absolutely need them. (though, don't get me wrong, we do QUALIFY for wic! we're not upper middle class or anything. :) so, it looks like we'll be using EI (early intervention) to get OT and PT and whatever else she needs through the state. they say that it's best if those people come to the house to do their therapy... which means i have to go through the state programs. anyway, she also said that she's worried about me moving so much. (well, for lack of a better response, duh!) as though i'm not concerned about 6 plane flights or more in the next year or less. and i've got to move my mutt and the devil cat too. so it's me, a baby on oxygen, a dog, a cat, a carryon, and a stroller and playpen... can one woman do it all? we'll see. to the point. the social worker said that wren will DEFINITELY be on oxygen when we go home end of october. she said she'd PROBABLY be on oxygen in march when we move, and MAYBE in september. that's a feakin' year away people! a year on oxygen! i'm really not ready for that. i just can't get my head around it. so, i'm going to choose to put that on the back burner until i have to deal with it, and pray she heals up quicker than that. that's a great way to deal with possible issues- ignore them until they smack you in the face. but i've decided, that's just what i'm going to do. so there.

the head ultrasound came back clear! yay for healthy brains!

she was a trooper today at her 10 am feeding- i got 18 minutes out of her! (or rather, she got 18 minutes out of me!) this feeding has been nothing but trouble for a week. i'm glad she finally decided that i'm right, and that she should in fact, eat!
i am pretty depressed about how much i'm having to miss to feed her. you term mommies are so lucky to be able to lug around your kid wherever you go. next time you think that the kid is really to heavy to be convenient, just imagine everytime they had to eat you had to go to your local hospital. that really mucks up your plans! i've missed worship for a week or so now, leaving early, coming late... and social functions as well. i'm looking to fill my social calendar.... so text me to sign up for a lunch date or something. (a big thanks to diana and randy for some dixie grill today... its nice to get away from scrubs for a bit.)

august 18- pretty in pictures

she's actually holding her dummy now and then... so i'm not sure it's totally intentional.. but hey.. we can hope!

yay! we had pictures and the head ultrasound this morning and a few successful feeds. (18-24min).
the pictures are going to be AMAZING!! the photographer, (and her portable background stand- tess :) did such a great job. i recommend them to everyone living on oahu. here's her website. you'll fall out of your chair when you see her work. lisa, a mother of a preemie herself, really worked with wren and was conscious of her temperature, temperment, and comfort...even when the head ultrasound did end up conflicting. they were so great. i can't thank her enough for participating in the pictures of hope foundation.
we don't have the results of her head ultrasound yet... though we expect it will be fine. this was the one that is done at 36 weeks. even though she's really 39ish now. (they're done at 1 week, 1 month, and upon discharge or at 36 weeks, whichever is sooner.)
they decided to do a CBC (complete blood count). sometimes the iStat-7 can be a little off because of the fluid in the feet. this is what i commonly call a heel stick. (though not the same as the "newborn heel stick" which is for genetic testing). since you're just getting blood from the capillaries sometimes it can give a diluted reading, causing the red blood cell count to be lower than it really is. whew- ok. so the CBC came back with her crit at 29 (up from 27 yesterday.) her retic (the test that shows how many immature red blood cells- how she's doing on producing her own) came back at 2%. i have no clue what that means, and i haven't had a chance to google it yet- but the doc tells me that's pretty good for where she is.
they've decided to put the hmf back into her gavage feeds (which is only a few a day now). her poo has been getting better- so we'll see if it gets worse again. she's started spitting up after most every feed- but still not acting reflux-y, and is pretty calm. i have to take a second and insert here that i am pretty much against the multi-vitamins they're giving her. i'm on great vitamins, and they make her puke every single time. seriously people- can't we just trust the good ol' milk factory the way god designed it?
tonight she weighed in at 4lb10oz. so she's almost caught up to where she was a few days ago. i asked the doc about this.. she said it could be that wren is going through a growth spurt soon. in which case her body would use the calories in different ways other than just packing on weight. (building cells for muscle, organs, blood etc.)
i'm still really struggling with the sleep issue.. but getting into more of a groove now. i'm really cursing my insensitivity to caffeine... if only a cup of coffee would work meghan! :/

this is another fabulous nurse that we're adding to our list of faves. beth is such a sweetheart!
(we'll miss her on her trip- but wren hopes she has a great time!)

august 16- force feeding?

this is me sitting behind the "nursing screen" burping wren.
what a piece of crap. i actually got brained by it one day when it fell on me. (don't worry, my rather sizeable bosom sheilded the baby.)this was before i turned breastfeeding expert- now i just use my wrap. (thanks katie lewis for the AWESOME nursing wrap.)

wren hasn't really been too excited about her 10am feeding. consistently for the past few days she's just fought me while i try to feed her, soothe her, feed her more. if you haven't ever tried it before- let me tell you, it's pretty hard to force breast feed a flailing infant, even if she only weighs 4lbs! really- what's the point? i can tell you without a doubt that if i had that little defiant girl at home i'd just let her sleep through.. there'd be no "waking to feed".
the doc said that sometimes there are just certain times of day that they aren't as hungry as others. (ie. i'm not a big breakfast eater...) she's only been going for about 10minutes at the 10am feeding. all of her other feedings have been going splendidly- about 20 minutes. she's now breastfeeding 6 of 8 feedings! she still desats some- bit doesn't drop her heartrate really at all. she's still 6 on 6 off with the cpap. (the way the feedings work it's really been 5 ish hours on cpap) she's tolerating it well, needing about 40 to 50 on both. i clipped her nails for the first time tonight- they were so long that shed already had several hangnails. i was afraid to cut her, but it went off without a hitch. :)

i'm totally digging the pink and green

august 15- the preemie weight loss plan

her hematocrit is 27. (down from 30 last week) her c02 is 56. (down from 62 last week. a good range is 40s-50s. so it's better.) she was down 125grams! it's really crazy, but she was only 4 lb 8oz tonight. that's less than she weighed not only yesterday, but 2 days ago! there could be lots of reasons. she's working harder on cpap and feeding- so she burns more calories. she's getting straight bm- no fortifier. and she might not be getting as much from the breast as she would get in a gavage feed. i hope the docs don't decide she needs to cut back on breast feeding. :/ we'll see what they have to say.


august 14- wren turns 0 in 15 days!

the past few days have been a little hectic. here's the update:

we started boarding yesterday... this means that we're staying at the hospital. it also means that we don't have internet access. (unless someone knows a wi-fi hotspot here that i haven't been able to find.)so the updates will be a little more sporadic unless i can get my husband to start doing them when he goes home to take care of the mutt.

we had another family care plan meeting today, this time with daddy in attendance. the head doc said that she expects us to be here until day of life 100 or so at least. (read: another month.) BUT, her feedings are going GREAT! which is just one more thing that we don't have to worry about. here are the requirements to go home:

maintain temperature-check
no apnea events for 5 days-check
feeding well-almost check
breathing well (preferably on room air, which incidentally is 21% for those that don't know.)- not even close

in an outfit from pop :)

-as lucky as we are to not have any major setbacks in the other areas, the sicknesses she faced early on, with infection and "not quite pneumonia", have set back her lung development significantly.
-it is ok for her to go home on a smidgen of oxygen... we've been told that is a real possibility for her.. but we hope she'll turn a corner and just decide to come off it altogether.
-she has never really had problems with apnea,(categorized as more than 20 seconds without breathing) only a few episodes in her whole life, so we don't expect that to be a problem. we are seeing more periodic breathing, (characterized by slow deep breaths followed by quicker breaths.) this is standard fare for even the heartiest of term babies. so it's not a concern.
- some people have mentioned steroids. the doc said at this point the risks (brain growth restriction) far outweigh the benefits (probably breathing on her own already). apparently several years ago dexamethasone was commonly given for up to 6 weeks to preemies. after following those kids, and comparing them to counterparts born at the same gestational age that didn't receive them, they discovered that it was causing in most a restriction on brain growth, affecting IQs and developmental progress. they give other steroids now, and in much smaller doses... usually inhaled (because apparently most kids that get them are on the ventilator anyway) instead of systemic, which lessens the side effects. she said if wren were to get very sick now and backslide... still being on the vent at this time.. she would go ahead and give them. but for what wren has been through where she is now is acceptable.
- where is she now? she's on cpap 6 hours, then on cannula 6 hours. and she seems to be tolerating it well!

some of you may remember that her ROP exam was yesterday. she has stage 1 zone 3 in one eye, and the other is still just immature. this is great! the doc said it's very possible that she wouldn't even have any vision problems caused by it. (if it stays where it is.) she is out of the woods as far as laser surgery at this point.(reserved for babies with stage 3 and above.) but, as an aside, preemies are very likely to need glasses due to just everyday nearsighted/farsightedness.

here she is with a headband covering her eyes after the exam... smart work jeanette!

today we got to up her feedings to 4 a day (every other feeding)! woo-hoo! let me tell you people... breastfeeding is WAY better than pumping. now, i'm super happy to have the ability to pump (a thank you to medela!) since i've needed it... but, man am i ever relieved that she is finally starting to feed. it is so nice and peaceful and gives a chance to connect with her in a way that nothing else can. (that i've experienced so far anyway.) and for those of you out there that told me "think of her smell", or "think of your daughter", or "think of her nursing", to help me get my milk flowing when i pump- now it works!! :) i think i had to have experienced those things to relate back to them in a way that could get my milk flowing. i still haven't had any issues regarding leakage.. but i've had several people recommend lilypadz. have you guys used those? i don't have any problems now.... did anyone get them later on? or any preemie mommies get leakage issues after starting to breastfeed? (when i'm nursing i can feel my trademark painful letdown in the opposite breast, but still no leakage.)
and, just for your amusement, i would like to relate that apparently there is an apparatus that hooks up to a man to simulate breastfeeding. (i'm on a hospital computer now, but i'll be googling this later to show a picture!) haha.. thadd decided that was my job and he'd just leave it to me!

the great poop debate-
her poo is still what the doc called "gourmet mustard". it's up from a "french's mustard"... which is good... in the right direction from "just the oil that comes out when you don't shake your mustard". just to respond to kathy's comment on a previous post i did ask her about altering my diet at this point. she recommended for now that we just continue what we've been doing since it seems to be getting better. the doc said that something (exclusive hind milk, or hmf) could have aggravated her to the point of colitis, which would take a week or two to clear up. i've stopped giving exclusive hind milk, and she obviously doesn't get it when she breastfeeds anyway. wren still gets her crack spackle every diaper change to keep the poo off her skin... she's all healed up and we want to keep it that way! we're also using gauze sponges to wipe her instead of the "washcloth/paper towels" that are standard for baby wipes. i'm making my own wipes very soon! i've already purchased the viva paper towels! :)

- head ultrasound next tuesday... just the normal check up. they're supposed to get them at 1 week, 1 month, and 36 weeks ish.
- she got her first ot consult today. the therapist said that her muscles seemed ok, and that she had good grip and range of motion. the exercises she gave us to do are all just things that seem really obvious. (move her legs up and down, same with the arms, show her things to track, let her grab our fingers.. etc.) so we'll continue to do those things.

getting her OT consult

overall... good news... but we've got such a LONG month to go... ick.
and, thadd forgot my shampoo... we've got to figure out a way to live at the hospital and still live at home as well... we welcome advice!


august 13am

i guess wordless isn't really my thing. :)

last night wren was up only 5 grams, so she's still at 4lbs 7oz. she's been taking about 2 feedings a day from me, and is a rockstar with breastfeeding. her heart-rate drops are almost completely non-existant now, and her desats are minimal. we're super lucky! i think i'm going to try and do more than 2 feedings a day soon. (she's still too tuckered out to feed twice in a row though.)you probably noticed in the picture that she had her og (oral) tube back down again. since she's on cpap she has to have the tube in her mouth. it's really a bummer too, because everytime i feed her it has to come out. it'll be much easier when it's an ng again. (nose)they use the size 8 (larger) tube in her mouth because they have to vent her stomach when she's on cpap. the machine blows a certain amount of air into her belly. after a gavage feeding, they simply open the syringe to air, and up comes the air in her stomach.

she's sprinting 6 on 6 off now! she tolerated it well yesterday, and hopefully will keep up the good work! we can't wait to have her back on cannula...in order to get her off of cannula... and get her home! her due date is quickly approaching, and it doesn't look like she's going to be coming home by or around that time after all. (maybe 2 weeks after?) luckily she's got the temperature thing down. and the feeding thing is going well... she's still having cyclical desats though, and can't seem to totally get off that cpap. i just keep telling myself she's the boss... i wish the boss would hurry up and decided to breathe!

her diaper rash is totally cleared up! we're still applying what katie endearingly calls "wren's crack spackle" at every nappy change though... since it seems she has a tendency for rashes. her poo is still runny at times, and seems more green than yellow now. i'm not sure why that is... i haven't had any green veggies in excess, or out of the ordinary. anyone have suggestions about green runny poo?
the poo is a little seedy, (for those who haven't seen breastmilk poo- seedy and yellow are good things), but still mostly runny. they asked me yesterday if i was still just pumping hind milk. i am, but i'm also feeding her twice a day, and they're also using frozen (which isn't just hindmilk). i think they were worried that it could be a fattyness overload, which could upsetting her stomach. foremilk is what you get in the first letdown, it's what's been made and stored. hindmilk is the milk that is made after the letdown, and the body grabs lots of fats to create it quickly. she's been off the hmf (fortifier) for 3 days now. so if it was that, her poo should be better today.

we're going to start trying to board at the hospital soon. they've been full so far. it would really be easier since i'm feeding her now. but especially convenient since i can't feed her twice in a row! that means i'm up there for at least 6 hours at a time, or, more likely, making multiple trips. (remember, it's 50 miles roundtrip.) i love the baby girl dearly, but i can only sit upright in a chair holding her for so long.. that time, before the disks in my back are crushed, and my tush is asleep, is about 4 hours. by the time the 6 hour mark comes i really need to defrag from all the beeping and hustle and bustle of the nicu.

i had to cancel my cowmooflage carseat! i know, it's a tragedy. but it still hadn't come in, and so i got online to check on the shipping status. target said it would be here... by september 20th! i really hope i have need for the carseat before that time! (though i may not.) i think we're just going to go to one of the stores here and see what they have. i'm actually considering a convertable. (one that grows with them) i know, mandy and eric, after all the selling i tried to do to get you to get the infant! haha... i just figure i'll be wearing her frequently, and that i don't want to lug around the infant carrier, so why not get the carseat that's really a car seat?

addendum to "what not to say"

if you're reading this regularly, or know me well at all, you know that i just pretty much tell it like it is. and in "telling it like it is", i am often very tongue in cheek. (admittedly, probably, going a little overboard at times.) i love you all dearly- yes, even you stranger from australia who's face i've never seen. but especially my dear friends and family... we know that your prayers have made all the difference to wren's recovery, and your kind words have been received with nothing but their intended purpose- our comfort. if you're reading this, you care enough to follow, then you've already comforted us more than you know. (thadd can't believe how many people read...)
i wrote the post "what not to say" for all the reasons i listed previously, but want to reiterate them just so we're on the same page. i compiled these from other parents. they bore their hearts to help me make this post. it's not about what has been already said, but a new approach in the future.
i get approximately 100 hits to this page in a day (30% are new), that means a lot of people are looking for information, either for themselves or for loved ones. i have that nifty feedjit tracker over to the right that shows me what people are googling to bring them here. on the message boards there are posts all the time "my brother is having a preemie, what should i say/do/get them?".i wrote this post to better let everyone who is charting new territory know at least what sort of map they're making. before we lost 2 babies early, and max late term, i didn't have a clue what to say to women who had a miscarriage. and the same goes for a preemie- the thought never crossed my mind! what an emotional rollercoaster it is... what great risks to the baby... what would i say? i have no idea! but, again, if you know me, you know i would have googled it. and hopefully found a blog like this, where someone who's been through it could share the experience and the advice.
and this preemie momma's advice is still the same: offer them an ear and a hug. they've been through a lot.

august 12- wordless wednesday

what not to say to preemie parents-

i'm a member of several message boards online... thebump.com, babycenter.com, etc. (i would recommend hooking up with these ladies if you're a new preemie mommy- they have been SUPER helpful!) anyway, on these message boards mommies often vent about things that are said to them. oftentimes things meant with love, but words that still sting. so i decided to compile a list of phrases, condolences and encouragements for all of you term-baby-experience-havers to never say to a preemie-baby-experience-haver. below is a list of all the things that the message board mommies have listed...
as a sidenote, i should point out that thadd and i have heard many of these things as well. we know we are loved and never felt hard feelings about any of these things being said to us. i know people are always trying to show compassion... hopefully this list will point people in the right direction on how to effectively do that.

1. "you're so lucky to be able to sleep through the night"- of course, it is nice to sleep... but thadd and i talked about it, and we decided not having a baby in the neonatal intensive care unit for 3 months would probably be more restful overall.

2."at least you have time to heal from your c-section"- again, all of us emergency section mommies would much rather hobble around at home to the sound of our babies crying, than convalesce in the peace and emptiness of a baby-less house in baby related pain.

3. "you'll look back at this and ______" - we don't really know what we'll think. as mommies and daddies we're so scared that something terrible could happen that in the back of our minds we're thinking "i may look back on this as one of the great tragedies of our lives".

4. "isn't it neat to watch her grow outside (rather than in the belly)?"- no. well, sort of. but i'd do it the proper way over the nicu way any day! (also, they grow much better inside.)along with this one is "you're so lucky to get to spend this extra time with her", and "he just wanted to meet you early". all said to be encouraging, but so not true.

5. "she's so tiny"- just say she's adorable, cute, amazingly charming. anything else could be construed as negative by self-conscious parents. let's face it, preemies look weird!

6. "oh, so he's not_____"- no, he's not______, and probably won't for a few more months. preemies go by an adjusted age based on their due date. developmentally they hit milestones based on the adjusted rather than the chronological age. please don't mention the fact that our little ones are "behind". even though they really aren't, it still hurts. with this comes "but, he's not a preemie anymore". even when they get on the growth chart, they're still dealing with being a preemie. it's something that doesn't go away with size.

7. "it just seems like a long time"- yes, it does. logically all parents know that 3 months (or less) isn't that long... the nicu time will end.... but preemies can face difficulties their whole lives depending on incidents they have in those first few months. that's what preemie parents are afraid of... all that time dealing with the side-effects of preemie-ness.

8. "he's going to be fine"- this was a big one... lots of mommies listed this as one of the hardest things to hear. whether it's because we can't bear to let ourselves trust it, or because it seems so presumptuous. i, personally, find this ok to hear from some people...thadd doesn't. the mommies i've talked to listed it hands down as the most common encouraging phrase they heard that didn't encourage. pretty much, if you're not a doctor, you shouldn't assure them their baby is going to be fine... because there is always the off chance that something could go wrong. it almost invalidates the fears that we have as parents to say that they're unnecessary because "everything's going to be fine". does that make sense? a close relative to that one is "____ had a preemie and they turned out perfectly healthy". my husband hears this one all the time at work. our baby is not so-and-so's baby, our experience is not theirs.

8. "you could ______ to avoid having a preemie next time"- that may be true. but we're really guilt ridden already, and possibly not thinking about next time (yet). please keep that advice to yourself.

9. "so, are you thinking about trying again?" or "are you going to try to have another?"... this is usually said with a look of uncomfortable interest. this is a really hard subject for most preemie parents. one that they are honestly probably not consciously thinking about if they're currently going through a nicu experience, or dealing with a little preemie. as this question bounces back and forth in our minds, it's one that we weigh with great care and terrible distress. (most of us anyway.) we'll decide about this, and let you know when we think we can deal with it.

10. "he doesn't look that small"- preemies are going to be small, they just are. (remember that "they grow better inside" comment above?) they have feeding, and weight gaining issues for the first several years of life at least. saying they aren't doesn't make them bigger, it makes the parents feel like you think they're crazy. (they might be, but it's rude to rub it in. :)

11. "your c-section was easier than _____"- please don't make light of our experiences in childbearing. i know that i didn't want to have a section- in a perfect world i would have delivered a term baby in a tub with a midwife and some olive oil. :) but that plan, and my hopes and expectations of bringing a child into the world were cut away in the vertical incision on my uterus. (now i can never have kiddos the good old fashioned way- if i choose to try again, that is.) most of the mommies i've met, online or in person, were definitely not planning on having a c-section. now that i've had one, i can say hands down i would never choose one over vaginal birth. the pain was excruciating. i remember, and i think i blogged about, the first day i could shower without sobbing. SOBBING. that is some pain folks. anyway, in some ways it is easier, but debating the merits of c-section vs. vaginal birth are best left for mommies who had a choice in the matter.

12. "things could always be worse"- this is one that i don't need reminding of. maybe that's why it's on the list. i definitely know how much worse it could be for our little bird...and know that we are so blessed that things have gone as well as they have. but unless you're a doctor a comparison of 'how well baby is doing' to 'how well baby could be doing' is probably not going to be well received. there's also the chance that perhaps the effects of what the baby has been through are not known to you, or even the parents. for instance, do you know the effects of a grade 4 IVH? (that is what wren's attending would call a "wicked brain bleed".) be sure you know what exactly is going on if you're going to risk the "it could be worse" talk.

13. "he'll eat if he gets hungry enough"- preemies often have severe reflux issues and food aversions (not to mention failure to thrive issues, and other general feeding problems.). several of the mommies commented on unsolicited feeding advice. again, so few people understand about preemie issues enough to even give advice on the issue. related to this was "she's big enough to____" and "he's probably just not hungry", or "try feeding him_____".

so, in order to be productive below is a list of things that you should say to preemie parents that will comfort them:

well i suppose i'm being a little overdramatic. but, the best thing to do is lend a hand and offer an ear. we go through so much that there's really no right thing to say, or soothing words to be had. when we're in the midst of the stress and hurt it's often too hard to explain what we're going through... or step out of the situation and think about it logically. don't try to relate, don't try to "one up" the situation, and you don't need to come up with anything profound to comfort us.... just listen. ask us how we're doing and just listen.

thank you to everyone who reads this. i hope that it will help in knowing what to say should you be faced with parents in this situation. if you're a preemie parent feel free to add to either list. we'd love to know what was said to you during your nicu time or the following years.


august 11- continuity of care

i know it must be frustrating for nurses... coming in, having a baby that you've never cared for before... and having to deal with that baby's overbearing, know-it-all parents!

today wren had a new nurse... when i called to check on her the nurse had her at 57% oxygen! she said that she had her at that level so that she wouldn't have desats. she always desats (and self-recovers without intervention). and she'll pretty much take whatever level of oxygen she's put on. it takes a great nurse with lots of patience to wean her down to where she really should be.

so, tonight katie helped me write a note "all about wren". the note categorizes her preferences and tendencies... in the hopes that a new nurse could come in a step ahead of the game. this, in
addition to having primary nurses, is really the only way to try to have any sort of continuity whatsoever. we've also started having family care plan meetings. (as in, we've had 1... and are planning one later this week.) the care meetings help to get the doctors on the same page, and to give us an overall plan for what to expect- notsogood for the day to day care. i would recommend these things for any nicu mommies out there. (or mommies with kids in the hospital for an extended time.)

wren getting her mouth cleaned... 
it's a sponge on a stick- also used for developmental therapy in kids with oral aversions.
getting a bath with daddy for the first time!
she loves the bath.
katie's helping




august 10-dear dad

back on cpap
a note for daddy...(katie is just the best kind of person.)
and, she's getting her butt aired by oxygen to help with healing.
daddy's first time seeing her at her whopping 4lb 5.13oz! he's in shock.

first time being burped by dad... after feeding for 24 minutes!

this is lisa- one of our favorites!
she's still on the cpap most of the time. she's been needing between 40-55% oxygen. she gets to come off the cpap to breastfeed twice a day. she's been getting better and better at latching. oddly enough she prefers a different hold on either side. i think we're both getting the hang of it. she still drops her heartrate a little, but it's not a real brady. (in order to be considered a true bradycardia it has to be under 80 beats/minute.) she drops to about 110/minute. she desats to around 88... but always paces herself to come back up.


more pictures

apparently i lost my mind last night and forgot to add in the rest of the pictures. these are from yesterday.

she really is smiling here. the perspective and color are weird because she's still under the nursing wrap. this was after a 20minute feed.

this is while she's getting weighed. she looks concerned because she's naked... she doesn't like it anymore. :)

snuggled in... her doggy is covering her eyes from the light. she's sensitve to it... i think it's just a personal thing... not necessarily a side effect of her preemie-ness. (i'm the same way.)

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!