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?


clean baby pictures

doesn't she look concerned?
she really enjoyed the bath in the water better than the sponge bath. i would recommend one over the other. it really was a bit easier with her in the water as well.
funny story: i was showing these pictures to a friend who delivered her (term) baby just a week or so after i delivered wren in the same hospital. she was looking at them and then said, "wait, isn't that.....". haha! she recognized the puke bucket! :) apparently she got to use the grey bucket during her delivery. she was still amazed that we're able to bathe wren in it.

july 29- rude awakening

sorry for the delay in posting pictures. it is just a bit of a hassle for me... and i'm feeling a bit overwhelmed today.

what an adorable outfit! my favorite!
achoo! mom caught me mid-sneeze!

we had the family meeting today. (even though thadd was gone. and will be gone for roughly 2 more weeks.we'll be having these more frequently when he gets back.) apparently i was living in la la land. here are the cliff notes:

  • when can we go back up on nasal cannula sprints? ween down the cpap pressure? (from 6 to 5)
    • when they see a trend in less oxygen requirement
  • situation with lungs?
    • expect her to be in the nicu at least 2 more months... possibly need to go home on oxygen.
    • when can we start back on the non-nutritive sucking?
      • at the nurses discretion
    • is it possible to breastfeed a feeding while sprinting? (since it seems she may need the cpap for a while longer?)
      • yes. as she gets the non-nutritive sucking down, we can slowly add in a feeding while she sprints.
      • when can we give her feeds by gravity? (right now she gets them over an hour.)
        • they're going to start weening that down. she should start getting them over 30 minutes tomorrow.
      overall health-
      • why the repeated newborn screens? (the one they took today makes #4!)
        • #3 had a processing problem. nothing with wren. they're only taking them when they've drawn blood for another reason- not heel sticking just for that.
      • hematocrit issues?
        • should resolve itself. but, by giving her the transfusion yesterday, they reset her clock. delaying her own production of red blood cells by a bit more time.
      • results so far?
        • immature eyes. which we expect because she's immature- right?
        • ROP stage 2 zone 2. are you shocked? did you read my last post on this issue and remember that the doctor told me JUST "immature eyes"? because he SURE did! and then none of the other doctors felt the need to pass on that information. neither of her primary nurses knew either.
        • if her ROP gets any worse she will need laser surgery. no doubt. it needs to stay where it is or get better in order to avoid the laser.
      • deferred schedule-
        • they definitely didn't like it. and insisted that we get the shots before she leaves the NICU. i told them we had decided to wait until she got bigger. (they did confirm that the same dosage that is given to 15lb babies is given to 3lb babies. that's what the FDA and AAP recommend. so people do it.)
        • the synagis is actually an antibody, not a preserved virus. so instead of basically infecting someone, and causing their body to make antibodies, they inject the antibody to start with. we've decided, since it is an antibody, and the risk of contracting RSV is so high, and the risk of serious side effects, that we will go ahead and give it to her. it is done monthly, and has to be done throughout the whole season.
      post nicu- (this is the part i never should have asked about!)
      • wren will probably need occupational therapy (OT), physical therapy (PT), and speech therapy (ST)
      • later, the doctor mentioned her chronic lung disease (CLD). i'd never heard that she had it. one of the other attendings had said that he wouldn't say that she had it.. that was just a few weeks ago. :(
      • she's at risk for problems related to ROP, strabismus, hearing loss, cerebral palsy, and some level of mental retardation. we should know by age 3 if she's out of the woods on these issues.
      • the doctor told me outright that i shouldn't work. (not that i was going to, or want to, or considered it.) she said that having wren is going to be a full time job. between her therapy appointments (OT, PT, ST etc), and her pediatrician check-ups, and her developmental pediatrician check-ups, and her ophthalmologist/optometrist. not to mention what i will have to do with her at home in our "free" time. i can't be the diapering, feeding mom. i have to be the reading, diapering, feeding, teaching, challenging, talking, mom. she said that even children with "delays" can be bumped up by just having a strong parent involvement in therapy. (basically making our home life one big developmental playground for her.)
      • we will be enrolled in army exceptional family member program. what i know about that i learned from google here.
      • wren is eligible for state aid wherever we live due to her "special needs".
      • they're going to do all the research for our upcoming moves to coordinate with tricare and find doctors and therapists ahead of time. they're also going to coordinate getting the synagis while we're home on leave.
      so, that was my day. i broke down crying toward the end.. with all the talk of "special needs" and all the doctors and therapies... it was just too much. i don't know if i can do two more months... i just don't know.

      on a good note. she is still a temperature rockstar. :) keeping her temp up in her open crib now. i'm so proud of her for doing so good with that. (if we could just get her off that stupid cpap!)
      in her big girl crib! (i promise, in the picture above, she's really under all those beanie babies!)

      we got to do the non-nutritive today. she latched! yay! she got some milk, but not much. (i pumped to "empty" beforehand.) it was the strangest feeling! for those of you nicu mommies reading this that haven't had the chance to put your baby to breast- keep pumping! it is totally worth it when they get to that point.
      her oxygen needs haven't been bad at all! this morning she was in the high 20s. last night was great too. today on cannula we got her down to about 45, and had to put her back up to 50 for the last little bit.

      please keep little wren in your prayers. i thought we were almost out of the woods... but she's got such a long road ahead.


      july 28- the real bath

      today was uneventful. as expected, wren's oxygen needs have decreased. her blood transfusion finished this morning without event. they aren't upping her feeds until wed morning at 7am. she's going to start back at 15ml. i'm sure she'll sleep like a baby with a full belly!

      the day shift didn't communicate to the night shift that it was unnecessary to give her another IV. the fellow had said it was ok to just stop her fluids and use the same IV site to administer the blood. (since it was only going over a period of 3 hours.) well, one of the IVs went out late this evening, so she would have had to have 2 anyway.

      they had a set of emergency twins born today, so our family meeting got moved to tomorrow afternoon... i really need to work on my list of questions! eeek! any ideas?

      this evening i got to give her a bath. not a sponge bath this time either! :) a fully fledged tub bath. (granted, it was in the same type of tub that i used to puke in in the labor and delivery ward...nice huh?) she really didn't seem to mind. she just seemed interested, and maybe a little concerned. we got all the cheesy yuck from behind her ears, in her neck rolls, and the creases of her legs.. this bathing thing is really complex! :)
      her sprint went awesome. again, her oxygen needs are much less. she was on her back, on the nasal cannula, on 40ish percent!

      i'll post more pictures when i wake up in the morning. they're super cute- and there are so many!


      july 27- the big V question- i'm sure to take some heat

      i have to admit, having a preemie definitely makes me re-evaluate our decision not to vaccinate. particularly with the risk of RSV. (we can get synagis for free, so luckily that's not an issue for us.) what to do, what to do?? we'll be deciding on that in the next few months.

      i think at this point, living in the US, we're pretty set on not giving any of the normal childhood vaccines. if we change our minds, we'll just take them to get current on their shots right before the school year... there's much less chance of side effects at that age, mostly because they say that they've "outgrown" several of the vaccines that have the worst effects. (the pertussis one is notorious, and i think they only give that one until 4 or something.) many of my family and friends balked when i told them. but after hearing much of the information that i learned, they were at least bearable on the subject. now, since wren is so small... i think they're actually in agreement with me whole-heartedly. (to at least let her get bigger.)

      i'm not getting my info from jenny mccarthy. and i'm not only worried about autism either. there are TONS of side effects. i'm sure most of you have experienced a baby after their shots.... not a happy camper. sickly, fussy, feverish, with a rash or swelling at the injection site. and that is not even considered an adverse reaction. that is the best of cases. here's some information that i came across in my research last year. (and most of it is not from crazy militia home schooling nutballs either...most of it. :)
      • the only active cases of polio in the last 10 years in the US have been in vaccinated people. polio was on the decline in the US approximately 5 years before the mass vaccinations started. despite the astronomical numbers of vaccinations in places declared "polio free" by WHO in the 90s, outbreaks have occurred in several.
      • in the measles outbreaks of the late 90s, 85% of the kids had been fully vaccinated (all 3 sets of mmrs), the next 10% had 2, and the next 4% had 1... only 1% of all the kids in the outbreak hadn't been vaccinated!
      • the measles and chickenpox are some of the only diseases vaccinated for that is are still active in developed countries.
      • one of my favorite things i hear, on msg boards and from some friends and family, is "you're endangering the rest of the kids by not vaccinating!" either the vaccines work and your kids can't catch chickenpox or measles or polio from mine, or they don't work, and i'm just keeping my kid a little healthier.
      • the FDA says that most vaccines are only good for 5-10 yrs. so i'm not going to let my kids get these childhood illnesses, measles ad chickenpox when they're kids like they were intended to. i'm going to make them wait and catch it as teenagers or adults when its so serious as to be life threatening in some cases. hellllloooo shingles!
      • japan had a comparable rate to the US in SIDS cases. in the 70s japan upped the starting age for their vaccines to age 2. (from the normal 2 months.) japan now has basically no instances of SIDS.(.4% per 1000 births.)
      • the vaccine adverse effects reporting system (VAERS) for the FDA reports that 1% of the reported adverse reactions are death. (most of these from the pertussis, or whooping cough vaccine. the -p in DPT) the FDA also reports that they estimate only 10% of adverse reactions are reported.
      • the CDC reports that among school age children measles outbreaks have occurred in schools with higher than 98% vaccination. some even at 100%.
      • i think it was november 2007 when the government conceded a court case that linked the 18month shots, where a little girl recieved 9 shots, 2 containing thimerosal (mercury), to her progression into autism. they said her shots aggravated a pre-existing mitochondrial disorder, which "presents as autism". as of 2008 there were about 5k cases in "vaccine court".
      anyway, i could ramble on forever! if you ask around you probably know more people that don't vaccinate than you think. we found out 6 people we knew (all from different areas of our lives, different backgrounds, and different geographical locations) all had personal negative experiences with vaccines. these ranged from bad reactions, like illness for several days to autism. we talked 2 two separate moms just where we live now that regretted vaccinating and noticed a difference in their (now teenage) kids when they did it. i've talked to many people who just vaccinated without questioning... they're more open minded about options. but some people think its all a bunch of baloney and that we should just do what the dr./FDA says no matter what some contradicting research says.
      just an aside: did you know that the FDA does no research of their own on anything? anything! they rely on research provided to them by the pharmaceutical companies selling the vaccine. the advisory boards that decide what is approved not only consists of doctors but of shareholders to pharmaceutical companies and representatives of the companies themselves. most disturbingly, frankly, there is no way to guarantee the safety of a vaccine in the human population without injecting it into large quantities of people and seeing what happens. the vaccine manufacturers are not even liable for any negative consequences of their products-damages are paid out through a fund which is maintained through a portion of proceeds paid for by consumers of vaccines.
      i guess i just always question the assumption that nature needs our help. that seems to be the common thread today in most of our thinking, especially medically. at the risk of sounding a little crunchy, i'll admit i take d-mannose for my UTI, not antibiotics. i take grapefruit seed extract for infections. i also eat handfuls of granola, and plan on wearing my baby. :) people place all their trust in doctors, hospital beds, tons of medications, formula, cribs, and fast food to get them through the day. but i'd like to think that herbs, homeopathics, breastmilk, arms and healthy foods are better choices.
      i suppose i can't get by without a caveat- since it seems i have a track record of requiring medical intervention to LIVE the past few years! haha.. i do appreciate antibiotics, blood transfusions, our doctors that work so hard to be knowledgeable... we are thankful for things like the RSV vaccine, synagis, that could lower wren's risk for illness. i know that a person could drive themselves crazy making an issue out of every little thing. (for instance, we eat brownie mix. it has partially hydrogenated oils in it. TERRIBLE for us. but it tastes good, and we have decided we're going to let it slide. and fast food ..sometimes the drive thru is just a sin of convenience.) we know that we are so amazingly blessed to have medical care, to have medical coverage, but also to have options most of the time.
      all i would say is do your research. at least know that you're making an educated decision when it comes not only to things like vaccines, but healthcare in general. do your research on foods, on toys, on cars, on cleaning supplies, on anything you can. know your options... if you are blessed enough to have them.

      july 27- our little vampire

      apparently wren has a magical trick where her blood disappears. i know, i know, it's still early for magic tricks. but this girl is just ahead of the game.
      what???!!! no food?
      so, here's the story. today she got blood transfusion number 5. (i think. i'll have to double check.) her crit was at 24 this morning. (down from 26 last monday.) the red blood cells aren't all getting caught in her liver. (she'd be jaundiced, there's no way her liver could tolerate that much coming through.) they aren't being used for infection, or sickness anywhere. (she has no symptoms.) she doesn't have any internal bleeding. (no IVH, or gut bleeds.) in short, the doctors don't know where it goes... but it sure does go! they said the effects of the transfusion, needing less oxygen to get her sats, outweigh the risks, possibly fooling her body into not making enough itself, and extra work that she would have if they didn't. they want her calories going toward breathing and lung development, not red blood cell production. (of course, having red blood cells does make oxygenation easier!) it seems like this is SO many...
      how many transfusions did your preemie need?

      you'll notice in the pictures how much more pink she looks now. today she recieved 1/2 of the total transfusion. they give it in 2 parts with a 12 hour break in between. the really super bad part is that they put her on trophic feeds again. :( and she's not sick! so she feels hungry and everything. she was crying SO much while we were there. it broke my heart! she's down from 30ml to 2ml! a HUGE jump. she's getting her fluids though. a mixture of minerals and fats etc. they're hoping she won't lose weight. she can't start going back up on her feeds until wednesday. they're hoping to get her back to 30ml fairly quickly. it's a good thing... she just roots around and keeps her mouth open all the time!

      the trophic feeding is because some research shows that there is a risk of developing NEC with transfusions if they remain on full feeds. this is not what all neonatologists think... it is the most conservative course of action. but, that's ok. as hard as it is for her, i'd rather she didn't have a risk of NEC.

      good news: she's now in the isolette with the top up... possibly moving to an open crib soon! :) she's just a temp rockstar. everyone seems really suprised... but she keeps her temp up just fine in a short sleeve onesy and a blanket. (or just a long sleeve, pants outfit.) i'm super excited. i know i've talked before about having a "normal baby". it really makes me feel good to have a baby that is dressed, wrapped up, and in a bassinet. it just seems so much more normal. (and this preemie mommy has been longing for a little bit of normal.)

      i took a new picture up there today. i found that photobucket has an editing option under edit, effects, inkstamp, that will change the picture to just black and white. the current trend in infant development is to show babies black and white. (the days of your pastel mobile are gone.) i've done some research, and it seems that this is not totally necessary... but babies do see extreme contrast (ie.black on white) much more easily than other colors or more subtle shades.

      this is the picture that we put in her isolette
      tomorrow is our family meeting. that should be interesting... my dearest will be gone... he leaves for 2 weeks tomorrow. this meeting is also when we're (i'm) going to have to tell them about our "alternative scheduling" for vaccines. (she's almost 2 months already!) i'm not sure exactly when or what we're going to give her yet. we haven't totally decided. we're definitely not giving her anything for quite some time though. (she weighs 3lbs for goodness sakes!)
      daddy and wren- the last picture of them for 2 weeks!
      she'll be talking by the time he comes back.


      july 26- 35 weeks and wearing clothes!

      nicu day 53
      that's right, today the dr. ordered that wren could be in "manual" mode in the isolette. :) i talked before about the different settings.. this is the one that is just controlled like we would control a room with a thermostat. before we know it she'll be driving away in her first car. (it's amazing that just wearing clothes makes me think about crazy things like that!)

      check out my little bird- in clothes!!! this is a preemie outfit. it is just a tiny bit big. doesn't she just look...almost...normal?

      she did great today. only really needing 30s to low 40s on the cpap. her sprint went well.. she hung out at high 40s low 50s. i'm just so happy that she's doing better than she had been. i was getting really worried there for a little bit.

      daddy's finally getting the hang of holding her while she's swaddled. but he insists that she prefers to be upright. :)

      her heel stick is on monday at about 4 am. so i'll post the results of that tomorrow. we're hoping her bone marrow kicked in and will finally give her some red blood cells! that would lower her need for oxygen by so much... we're also hoping that her gases come back good. if she's got low c02 then they could turn down the pressures on her cpap machine. (that's just one more step toward weening her off.) right now her pressure is at 6. this gives her constant pressure so that her little alveoli don't collapse when she exhales. if the gases come back good, it could mean that she needs less support. she's got such a long way to go in the next month or so- i wish she'd get started!

      she's still tolerating her feeds... and doing great with them. i did see her spit up a bit today. i have only ever seen her with reflux once before. the nurse today was really great. we talked with her and one of wren's primary nurses to try and get her feeds lessened again. they've been going over an hour on a pump for quite some time now. we're hoping that she'll tolerate half an hour, or maybe a gravity feed over 15 minutes or so. this, again, is just one step closer to going home.

      in the end, she's the boss. i hope she enjoys it too... because short of running the free world as an adult, this is the only time in her life when everyone in her little world will cater to her whim. (mostly because she needs it to live i suppose. :)

      her primary is going to set up a care meeting for tomorrow. this will be an attending, resident, nurse, and us. (maybe a social worker- though i'm not sure what they even do really.) we'll discuss her progress, milestones for her to reach, and our plan to get her there. i'm really hoping it will help with continuity of care.

      lots of hoping isn't it?


      july 25- another day in the nicu

      with her mady beanie baby...mady's our dog. i can't wait until she can play with the real thing. those will be CUTE pictures!

      3bls 7oz tonight. what a heifer! up 70grams!
      really though, she pooped SO much that she'll probably be down by 50grams tomorrow. 4 times! full diapers! it was really quite comical, every time we put a new diaper on... we needed another.
      she has been on only hindmilk for a few days now though... so that, with the prolacta should help. but probably not 70grams in a few days help.

      they're a little worried about her weight gain. she's only been gaining about 10-20 grams a day since she was born. they want 15-30 grams daily. as i've said before though, thadd and i were both small babies. (he was only 5lbs or so when he was born full term.) genetics plays a part in it, so i don't think she's really having problems... she's just smallish. :) her primary nurse told me today that that could also be another reason why they dropped her sprint times by so much... that they're just trying to conserve her energy so she'll gain weight.

      they upped her feeds to 30ml/3hours over 1 hour. she tolerated the feeds fine.. just having about 1ml residuals, which is what she had before on 28ml. (residuals are what they pull back out of her stomach, through the feeding tube, after the feed is over. what the baby was unable to digest. as long as it's a small amount, they just put it back in their stomach and let them have more time to do it. residuals also have a lot of important stomach acids in them. if she had a lot of residuals it would mean she was having a problem with digestion or something.)

      her primary also said that they'd probably pick back up on the sprints on monday. she also seemed a little concerned about her need for more oxygen lately... but her labs are tomorrow night. so we'll see how they turn out. hopefully she's just being finicky the past few days.
      she hung out around the 40s today... and was in the low 40s on cpap this evening, and on about 55% during her sprint while we were there holding her. when we put her in the bed she started doing MUCH better. (little turkey!) so hopefully the nurse was able to ween her down before her sprint was over.
      check out that noggin'! that's what you call a "toaster head". (or the mad scientist gigantic brain head.) it's because preemies, particularly micro-preemies do better on their bellies. this means they're laying with their heads turned to one side or the other 24/7... it makes them have tall skinny heads. they'll usually outrgrow it between 1 and 2 years. (we hope!) but hey, she's a girl, she can wear cutesy little hats! :)


      july 24- abrupt changes

      this morning when i called to check on wren the nurse told me they changed her sprints from 3on cpap 3 off cpap, to only 3 hours a day. ugh. she also had her on cpap, on her stomach, at 55% oxygen. if you've been following the blog you know that wren has needed MUCH less! and also, that while 3on/3off may be a little bit much, she can do way more than 3 hours a day.
      i also called and checked on her about 4 am, and was told that she was doing fine. she did ok on her sprints the past few days and everything. she's needed less than 40% on her back on the cpap consistently now for days. the nurse told me that since i "come once a day" that the doctors wanted her to do her sprint while i was there. the nurse then proceeds to tell me that wren can only do her sprints while i'm there. i was balling! i don't need the added stress that my baby can only have her cannula when i'm there. something about making that my responsibility was just too much. i think i've been keeping everything bottled up. (yeah right, i know! i blog EVERY day!) but i think i just haven't cried enough recently. i haven't mourned the loss of my max, my full term pregnancy, my crisis of having a child in the hospital for months and on and on.
      the nurse she had today was a nurse that we like and everything. but i think that there was a miscommunication. i double checked with her nurse from last night, only to find that she didn't give the report exactly as it was passed on. it's really just a grown up version of the telephone game.

      the nurse tonight was another one of our favorites. she has wren all the time and knows her backwards and forwards. she said she was just being her normal self. we did the sprint this evening when we went in. she started off at 60%, hung out at 50%, and weened down to the 40s. we both got to kangaroo her too.
      her weight is at 1490!!! the nurse actually put her on the temp mode on the isolette, and snuggled her in a blanket! she's going to pass on that she should be able to start wearing clothes. :) it makes me happy. (of course her low weight gain, and still being on the cpap, could hold her back from this. we're holding out that her great temperature control will win out. )
      snuggled in... swaddled and comfy in bed. :)
      we're going to hope that they bounce her back up after she showed such stellar performance today. maybe to 3 on, 6 off? that's what the nurses have suggested. and we think she would do ok on that. we'll see what the doctors decide. (it totally depends on what doctor, what nurse, and how they feel that day...it's hard being tossed around so much.)


      july 23- so your friend is having a preemie...

      i got the idea to do this from a fellow preemie mom blogger. i think it is a fabulous idea to talk about what preemie parents need, want, and could use. i know if i had a friend or family member who had a preemie, prior to our experience, i would have had no idea where to start. here are a bunch of ideas:

      for parents
      • knowledge is comfort- as scary as it was to start reading about the things that could go wrong with wren... it also helped me to feel involved. i could ask educated questions, better understand what i was told, and make better decisions about her care. i took the advice of other moms (and the book itself) and only read what pertained to our situation. it can be overwhelming and ominous to read about all the possible things that could happen.
        • "preemies: the essential guide for premature babies". this can be found at borders, barnes and noble, amazon.com etc. it seems to be a common book and has so far been close to exhaustive for our experiences.
        • "preemies" by dr. sears. this is one that has been recommended by several moms, but i haven't actually read firsthand.
      • help with kangaroo care- it was a rather odd experience to hold wren for the first time. with the micro preemies, and perhaps some of the larger ones with certain problems, they are held skin to skin. we had to take our shirts off (and i took my bra off) and hold her to our chests. it was such an amazing time, but also a little weird. it's not what you expect holding your baby will be like. we have a few items, and want a few more, that make this experience the best it can be.
        • a soft, rather warm, robe. i have a $15 ralph lauren steal that i picked up from ross. thadd wears it too. it has enough thickness to keep her warm, but is soft on her sensitive skin. i don't know if my husband even noticed, but it really helped me to feel less like i was in a hospital to wear something of my own. (rather than a hospital gown, which they gladly give us if/when we need it.) the babies typically need extra blankets if you use a hospital gown. it's just easier and more emotionally comfortable to wear a decent robe from home.
        • a hand mirror. we still don't have one, and i wish we would have picked one up a month and a half ago. it is SO nice to be able to see her while i'm holding her. to watch her sleep. this is something that you can't do, when the baby is skin to skin on your chest, without help. i think this also would keep me from looking at the monitors so much. a nicu parent spends more time looking at the beeping screens than at their child... so it's nice to have your attention somewhere else for a change.
        • some cute receiving blankets. these are good if you do have to use a hospital gown, or if the baby has a particularly hard time keeping her temp up. i say "cute" because every picture of anyone holding her is going to be of kangaroo care. if i need a blanket, i want a cute one.
      • having a baby in the nicu is dang expensive for most people. we are SO fortunate to have our healthcare covered by the military... but there are still so many things that crop up when you have a preemie.
        • for instance, we are lucky enough to be located pretty close to our baby, and yet, spend approximately $15-20 PER DAY in gas. it is 50 miles round trip to visit the hospital. i usually go during the morning/early afternoon, and we make another trip in the evening together when thadd gets off work. that is 100 miles a day just in hospital visits. that's not including the everyday errands that a person has to make. our car gets 25-27 miles to the gallon. and gas has been $3.something out here. all that to say, it just adds up quickly. and many parents don't have the luxury of making a trip each day because their babies are too far away- they're looking at room and board, long term, hours away from home. you can help by giving them giftcards. lots and lots of giftcards. one of the most thoughtful gifts we've received is money for gas.
        • nicu parents are always needing to eat. whether you can help out by providing meals, fresh or frozen, or giftcards to restaurants in proximity to the hospital. we have many families from church who live close by, or on the way to the hospital. they have been amazing to have us over and be happy to let us eat and run. it is a HUGE support.
        • it's easy to get carried away at parenting, especially when your child is sick. we've had to make time and budget money for dates, because it got away from us for a while and we could see a change in our relationship. (yeah, we've been trying to kill each other lately! a big sorry to our neighbors. :) between work, housework, church, visits to the hospital, everyday life, stress, and visitors... it's SUPER easy to forget that we're a couple. a gift for the parents to remind them that they're not JUST parents might help them along. this could be giving a close friend advice, a relationship book to read together, a giftcard to a restaurant, coffee shop, or other venue... just to give them some time to themselves. i cannot stress how important it is for the parents to have that time. this should also come with a "you have to take some time for yourself to be a good parent" talk. i feel so guilty for even missing one visit... even though i know it's impossible to be there all the time.
        • offer to watch their kids, or feed their pets. these services can seriously drain the pocketbook. any help you can offer would probably be greatly appreciated by them. the older siblings will probably be allowed limited visits, depending on the nicu, but overall, it is hard to keep a child in the nicu or nicu waiting room for extended time periods, or on every visit.
        • rides to and from the hospital. if you're going that way, or need to run errands in the vicinity, offer to pick up the parent(s) and drop them off for a visit. if you have the time to stay, that is even better. which leads me to my next point...
      • please act like we have a baby. believe me when i say, i know how you feel. i would have been clueless and reacted the same way a few months ago. but having a sick child, is still having a child. i did feel a little weird when people would tell me "congratulations!" and i had my kid 13 weeks early! but it was better to hear that than nothing. so be sensitive to how your friends are feeling and remember they are parents! (i think this is especially pertinent to first time parents.)
        • ask about the baby. i think more people ask about term babies than preemies in some situations. even if i don't want to talk about it, it shows that you're concerned. ask to see pictures, but be aware of what the baby will probably look like. if you're reading this you are no doubt wise, but you have internet (and great taste in blogs.)....
        • send congrats cards, flowers, etc.
        • do your research if you can. (can anyone say "GOOGLE"?) coming into a conversation with the parents and knowing just the littlest bit of information will be a help to them. especially if these are close friends. i feel particularly aggravated when some of my family doesn't have a clue what i'm talking about.. whether it be tests, results, equipment, or just everyday nicu terms, like "de-sat". this is probably because a parent with a child in the hospital is telling the same news about 1000 times! if you're invested in these people and the child, learn a little bit about the situation. it will really mean a lot to the parents. i have a link to terms on the sidebar of this blog. here's another link as a start: about the nicu
        • throw a shower. be sure to talk to the mom about when she will feel comfortable with this. some mommies want to have it early to feel prepared and more in control. (i sure did!) some will feel very sad not being pregnant at their shower, and also not having a baby with them. some people also have concerns with germs and having a "sip and see" with a preemie. (i wouldn't have minded on those grounds, i was just wanting to get more prepared for her homecoming- 2.5 months away!)
        • don't downplay the preemie's health concerns. always comparing their child to others is a bad idea. saying "they'll be fine" is a bad idea. it always cracked me up when i was pregnant, with a very high risk pregnancy (we knew she had growth restriction and might have to have a c/s as early as 25weeks), some really sweet ladies would always ask me "can you feel her kick? well, if you can feel her kicking she'll be just fine!". :) i appreciated their positive attitude, but it really had nothing to do with kicks.. and a preemie might not be "just fine". it is a very real possibility that they could have huge side effects for years to come, or for the rest of their lives. just lend an ear and give support.
        • offer to update friends and family. this is especially important at the beginning and the end. while we were in the hospital, right after and immediately prior to my c/s the last thing i wanted to do was have to call a list of people. talking to a few family members was really helpful, and they disbursed the information. (my mom was actually updating my facebook after i got to the point that i no longer could/wanted to. it was really uplifting to get on later, after i was ready, and be able to read everyone's well wishes.)
        • offer your talents, or resources, whatever they are. be creative. can you take pictures? do you have a video camera and the family doesn't? are you a techie whiz? offer to build a blog, or post photos or videos. if the parents aren't already familiar with how to do those things, the last stress they need is to have to learn how to do them. clean their house, work on their car. whatever you can think of that will save them time/money they will appreciate. both of our parents came out and helped us with our house. (we had moved just a few weeks before i went into the hospital.) they cleaned, organized, and did some projects that we needed done. (painting, sewing, hanging curtains, installing a/c.) it was great!
        • put together goody bags/care packages periodically for their long hours at the nicu. especially when the parents are staying at the hospital full time. if they live close by, this may only be at the beginning and toward the end of the time their baby is there. if not, then they could be "living out of a suitcase" for up to months. magazines, books, snacks, crossword puzzles, a portable dvd player (loaner maybe?), drinks etc. maybe a pillow or other personal items, depending on what the situation at the hospital is. (my husband slept on a pull out chair with only a hospital blanket for about a week. this was partially his fault because he never thought to bring a pillow/blanket from home.)
      • pumping comes with it's own set of trials and needs. most nicu moms will be pumping. breastmilk is really important for preemies, and if other nicus are like ours, they pretty much didn't give me a choice... they just wheeled the pump in!
        • if the mommy doesn't already have a pump. try to make sure she has her own. i know that some hospitals will allow you to rent theirs, but i have experienced no difference in the "hospital grade" and my medela pump in style. it is super convenient to just be able to take it with me in a handy backpack wherever i go! (i inherited mine for free- what a blessing it has been! but i would say it is definitely worth it to buy one if they have to.)
        • parts. a close friend was SO thoughtful to bring me extra parts for my pump when i was in the hospital. i never would have thought to send my husband to get them, or even ask for them... but it was helpful and stress relieving to not have to wash and dry a single set between each pumping session! ( i have 5 sets now. i think everyone pumping full time needs at least that many. a set dirty in the sink, a backup set in the pumping bag, a set i plan to use in the bag, maybe a bottle or two with milk in them at the nicu, and a set or two in the cupboard clean.) if you've been reading for a while you know that i have size XL boobs. (it's a curse.) so i have to use an uncommon size in the "horns". i live on oahu, and there is very limited options for buying pumping parts. we ran around to every store on the island that sells the different parts, and buying horns here, connectors there, bottles at a different place. my parents were coming for a visit at that time and brought some of these with them. who needs the stress of hunting something down when they've got so many other things to worry about!?
        • me want FOOOOOD! as a milk producing woman, i can understand why the cows eat so much. i am hungry, like eat a full meal hungry, almost 24 hours a day. and thirsty! a bag of healthy-ish snacks, and maybe a nice bph free water bottle would be a great thing to have.
        • most nursing covers aren't wide or long enough to successfully cover a pumping mommy's goodies. if she's actually wanting to be covered she's going to need more than the average "nursing wrap". most covers are made to only cover baby's head, and one breast at a time. i got a handmade one from a lady at church for my shower. it's one of the only things i can use now and i am THRILLED to have it! (i sometimes pump in the car- yes it's hard- and like to be covered. or, if i'm in at someones house in a room and am afraid someone might walk in.) i don't use it often, but when i need it i am SO glad to have it! to see if the wrap will fit, cup your breasts from underneath and hold them up...add about 3 inches from that to accommodate the horns, and connecting apparatus. adjust for the mommy's breast size. bigger means she'll need more length.
        • breatmilk bags. i go through these things almost like i go through water! and they get expensive! for full time pumpers i would recommend lansinoh bags. they're cheaper, and freeze flat. but the measurement is completely off, and they don't stand on their own. generally lower quality. for periodic pumpers who also get to nurse, i would recommend the medela. you can pump directly into them, the measurements are accurate, and they stand on their own in the fridge. it is very important in my situation that the bags freeze flat though. a mommy who will be in the nicu for months to come is going to have LOTS of milk and need something that is a logical use of space.
        • lansinoh cream. i rarely use it, but am glad to have it when i need it!
        • pumping full time, and never having nursed, is totally different from nursing. i get my let downs when i hear beeping for goodness sakes! i think physiologically the body just responds differently to pumping than to breastfeeding. all the tips of "think about your baby".. etc.. that doesn't work if you've never had your baby to breast. and "smell something of theirs"... that doesn't work in the beginning either because baby doesn't smell like baby. (after about a month that worked a little better for me, when i started to identify what her smell was. thadd says it's "isolette smell". hehe..)
      whew. i know that was a lot! and i feel like i'm forgetting some things as well. if you're a mommy, especially a preemie mommy, let me know your thoughts on these things. here's the link to the other mommy's blog that gave me the idea- taking on the world with our boy
      click here for "what to get a nicu baby"

      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!