august 6- a little breastfeeding baby

today i went in early to see if the lactation consultant (lc) could give me some pointers. wren had latched just a few times... but mostly was uninterested in the breast. i was seriously beginning to think that the dummy had ruined her! but, with just a few positioning pointers she latched right away. not only did she latch, but the nns turned ns! she was definitely getting nutrition. i feel a letdown periodically. (i have a painful one.) but i've never felt a letdown with pumping. i didn't feel one with nursing either, but luckily the lc was there, along with the nurses, to tell me she was actually getting lots of milk. here's what i learned:

1. her hips, shoulders, head should be in alignment. (at an angle so that her nose can get air.)
2. i should hold the breast from underneath, squeezing it to properly align with her mouth
3. the pillow should be tilted upward, placed just under the breasts to support the baby. (i had it down close to my waist, angled straight.)
4. she also taught me how to know when she's sucking and when she's actually feeding. when she feeds, she takes in more of the breast than just the nipple. she sucks quickly and lightly, and then when the milk comes, she slows down and takes big long sucks. (this made me understand the settings on my pump!)
5. the crossover works well for preemie mommies. large boobs as well as small. (best choice for large because it leaves the hand free close to the breast for positioning and helping the baby latch.) the football is ok, but you have to come from the side if you have gigantic h's. otherwise the weight of the breast can hinder the feeding. the lc said that feeding a preemie is actually harder position-wise because of their size. luckily, i have freakishly long arms to hold her. :)
6. AND no fear mommas- ever worried about your nipples pointing downwards? well, it turns out that is more natural for feeding! we may not win a hawaiian tropic contest, but we can feed our babies more easily- and what is more important? (come on, the bikini wouldn't hide the stretch marks anyway right?)
7. as far as nursing pillows go, the breast friend is head and shoulders above the boppy. although, the boppy has many other uses. (prop for belly time, prop for back time, prop for seat, prop for nap.) just in my short time with nns, and a few feeds today, for just feeding/holding i'd use the bf pillow over the boppy when i could.

so, with those helps, she latched on, and fed for 12 minutes! they were all so impressed with her feeding that they held that gavage feed. they ordered that she be put on a sliding feeding, based on how long she nurses. less than 5 minutes is 3/4 of her feed. 5-10 is half, and more than 10 minutes and they hold the feed completely. i'm sooo excited! since she's doing the cannula twice a day for 3 hours, i should be able to cover 4 feedings. :) this evening she fed for another 12 minutes. the lc told me that a feeding can range anywhere from 8-20 minutes, depending on the baby and mommy. 12 is apparently her magic number so far.

her eyes got a little puffy today. (you can see in the picture below.) they said that sometimes their ducts around their eyes can get stopped up. so the nurse showed me how to massage along the brow line to clear it up.

happy mommy and little bird

after the first time she nursed. she was smiling SO much. this is the closest i came to getting a picture.

snuggled into bed. she held it all by herself!

what an exciting day! last night she weighed in at 3lbs 4 oz. all the nurses who haven't had her for a while are amazed when they see her. she's such a little chunk now. triple chins. she was down 15grams tonight, but with her overall gain i'm not too worried about it.

i bought 7th generation wipes 2 days ago. at the nicu they use really hard paper towel/napkiny cloths just wet with water. (remember how the "baths" in the nicu were the puke buckets in l&d? well, the "baby wipes" in the nicu are the washcloths for showering in the labor and delivery wing.) i thought the 7th generation would be easy on her bum, and wouldn't have the harsh chemicals of regular wipes. i had always understood that her diaper rash was caused by the harshness of rubbing her bum with the rough paper towely sheets. upon doing some research online i found that most often diaper rash is caused by a change in ph. (not sitting in a dirty diaper necessarily.) this is especially common in preemies because of their sensitive skin. it breaks down very easily. i even found a school of thought that says you should only use wipes when there is poo... that a wet diaper doesn't change the ph, and will do no harm. (whereas wiping the pee away will change the ph in the skin, drying it out and irritating it.) i did this research because wren just developed a pretty gnarly diaper rash. almost to the point of bleeding. this is only her second one. her primary was on today and she said it could be caused by the wipes, but also could be caused by her loose stool. (it hasn't been as cottage cheesy lately.) i'm thinking of making my own wipes. anyone have a recipe they've used successfully?

(am i that crunchy? really?)

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

today has been a good day!

peace.

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

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

this is the result of cpap prongs..

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

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

you want me to do what?

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

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

the one on the left is from 7.17

the one on the right was taken today.

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

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

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

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

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

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

that makes me a good parent- right?

july 31- up 25 grams

my little girl is getting to be a fatty! weighing in at 3lbs 8oz... she is starting to fill out. i thought she'd have skinny legs and arms forever!

today while i was visiting her heart rate shot up over 200. that rarely happens. i started messing with her (which is what i do when she seems upset, mess with her until she calms down) and unswaddled her to find her bright pink and hot. she was 37.5 celsius (99.5 farenheit)! that was in a short sleeve onesie and a thin blanket! i don't know why people doubt her. :)

this evening i tried the nns twice. the first time was about 20 minutes into a feed. she is definitely to lazy to try and work for it when it's already coming in! haha.. i think someone told her we're going to feed her either way. :) the second time was about 15 minutes before her next feeding. that time she latched again.. and she loved it! i'm so glad she's taking to this pretty well. let's hope we don't have feeding issues once we get to the point that we can start trying to feed her.

wren LOVES music. she started out dancing in my belly anytime she heard it. now, she sats high every time she hears music. (of course, she's on the picky side.) most all classical, some earthy soothing stuff, and the joshua radin station on pandora. :) that's pretty much all she's listened to so far. i got her down to 42% on the cannula while we were listening to music. (of course, then she pooped, threw a fit, and desated to 64!

this should be an ad campaign

wren will only be missing her daddy for about a week more. then he comes back home to all of our craziness. yesterday we got the most thoughtful care package from wren's great grandma! it included homemade cookies, snacks, books, and a mirror for kangaroo care! she definitely knows what preemie parents need!

 

a note to daddy

 

check out how long that hair is!

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:

breathing-

• 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.

feeds-

• 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.

eyes-

• 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.

vaccination-

• 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 21- no luck at latching

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

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

daddy almost caught me smiling!

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

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

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

07.20.09- she tanked

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

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

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

july 19- sucking soon (what a strange title)

this was day 47 in the nicu. sigh.

but she's making serious progress! she's been doing well laying on her back for a few days now.. only requiring about 35% on her oxygen. and even on the cannula... needing about 40%.
this evening she was on 60%, but on 1.25liter flow. (this is the volume pushed through... from what i understand. similar to the pressure on the cpap... but much less. it doesn't actually inflate her lungs from what i understand.) she has been on 2liter flow since she started. so it's a big step to go down to 1.25. and that was while we were holding her too.
today we got a look at the preemie growth chart. wren is small even for a preemie. some of you may have noticed that she was only 1lb 11oz and some babies are born at 25 weeks weighing that. well, that's true... she's a little one. but her weight is trending up. she's in the 10-15 percentile for her length, weight, and head size. but, that's ok. she's still gaining and genetics does have something to do with it. i think we're definitely going to need more preemie clothes! (we have the outfits from wal-mart about 3 times over now. it's one of the only places to buy them and we have several sets now. no worries, they're super cute! we just need to find another outlet to buy them... if she keeps this up she'll be 6 months old before she's in newborn!)
feeds are still the same. no other changes really...EXCEPT...
she gets to start "non-nutritive" sucking tomorrow! :) (i feel weird saying sucking. it seems strange, so i'm just going to call this nns. k?) this means she gets to basically practice breastfeeding! i have to pump first, then she gets to go for it. i feel like i should take pictures or something! of course, that would be an awkward one for the brag book... "and here she is, the first time she got to suckle..." eeeehhh... i guess i'll forgo that one. (but i am going to wait until thadd's there.) i just feel like it's sorta a big deal. i can't wait until she can actually feed... what a day that will be! she's upped to 3 hours twice a day on her cannula now... so she can do the nns during that time.
our bestest nurse (we love you!) is going to let us do her first bath this week! and a fashion show sometime soon as well. (have no doubt- there WILL be pictures.)

uncle rob holding her for the first time