it was a little scary. one of the qualifiers for continuing to wean her off the oxygen is the condition of her heart. the pulmonologist explained that when the lungs are damaged, as hers are, that it causes the heart to work extra hard to oxygenate the blood. (this is where i would normally insert the term here _________________) anyway, they had to check her heart and make sure it wasn't overly muscled up.. that it was pretty relaxed and doing it's thing without overworking.
it was the appointment of the year.. much anticipated.. and here are the results:
thought the night for a month or so now.) the next day i realized that she wasn't really napping at all...and i called the pulmonologist. they have an alternative, though it's more expensive, and often denied by insurance companies if you haven't been on albutoerol for at least 3 months unsuccessfully, or with unacceptable side effects. it's called xopenex. (thanks thebump.com preemie mommies for the recommendation!) the treatment today, we only had one, went really well, and she didn't seem to have any problems at all! yay... even went to sleep just a few minutes later.
i'll keep you posted... it seems like this will be a good alternative. i believe our insurance will cover it. i suppose we'll see what good ole tricare can do for us.
those parents are just thinking all the same things we thought. what did we do? what can we do? how is our life going to change? what is going to happen?
being a parent who can't just go around popping kids out whenever i feel like it, (or when the bc fails), i have mixed feelings about all of this. of course, i probably have mixed feelings about you too. (do you have kids? did you almost die trying to have them? have you lost more than 2? i suppose there could be a "jealousy checklist"... with varying answers ranking you differently on "charla's jealousy meter".) but, despite the fact that "we're so blessed" has become trite, kids are a blessing. really and truly. now, i just want my allotted reasonable amount.. maybe 3 or 4... but if i had to have beaucoups or none- you'd have to give me the "quiverfull".
so, whatever your thoughts on the alternative "public school classroom" sized family.. you have to try and understand what these people are going to be going through. take a moment... and try.
she is always a happy girl in the mornings
WHAT A BLESSING!
i have to say, all the docs are really shocked by this. (as i've said many times before.)
is your baby-
spitting up frequently (more than 2 times a day);
fussy often throughout the day (specifically before, during or after eating)
refusing to eat,
taking only small amounts of milk, regardless of the amount of time since the last feeding;
back arching during feedings;
choking or apnea during or after eating;
skin color turns pale or grayish during or after eating;
poor weight gain; and/or
having frequent respiratory infections.then they probably have reflux
i know it's the question on everyone's mind- and lips- "when will she be off oxygen?"
well, shortly after my last post disaster struck! wren's thrush and following poor feeding led to a bit of a supply issue with me. ugh. and here i'm always talking about how to keep supply up and whatnot. those 8 hours were TERRIBLE. particularly the overnight ones where my body was telling me to sleep,
- take care of yourself! moms, that means you need to take your pain meds, get plenty of sleep and make sure you heal up. the baby nurses don't want to have to work on adults. if you pass out in the nicu it ruins their day.
- take a break from the nicu. one nurse said:
if you're interested in making a book of your blog, you can do it here. i'll let you know how it turns out.
on the couch... zonked. that "dress" is actually the shirt
of a shirt/pants outfit, newborn size, from target. she was wearing brown bloomers- but she pooped on them. gross wren.
dear friends and family:
i am posting about a very important matter: RSV. for those of you who plan to visit us over the next few months, and even if you are not, please take a few minutes to read this.
i want to start by saying that we are experiencing the biggest challenge of our lives, and we’re lucky to be surrounded by so many family members and friends who have shown us so much love and
getting used to our new addition has been an interesting process- one that i have to say i haven't quite completed yet. here's my confession:
remember, it's hard to look at the IVs, breathing helps, hernias, procedures and sometimes it's even hard just to look at the babies... let's be honest- no one expects a 1lb 11oz baby... and finding a place for that in our minds can be troubling. but, trust me, once you get to know that little personality,
customer service- A
great job SleepPeaPod!
this of course, presents a problem for parents. what do i go by? what should i expect? all of our doctors have said to go by the adjusted age. i think this is to keep us from getting discouraged. after all, it really could take longer for her to catch up... she did so much womb growing out here in this terrible CPAP and IV world.
for wren, we're just trying to keep her challenged and at least caught up to her adjusted age. with preemies it's ever so important to keep them stimulated... they can do so much more if you constantly
we recently got a package from my sister in law, tabitha morris. she's simply amazing! here are some of her great things (please excuse the terrible lighting):
ocalifauna on etsy.com
welcome, ladies and gentlemen, to the first session of housekeeping tips for new mothers. if you're a martha stewart type of housekeeper, this column is NOT for you. however, for the rest of you, this is your chance to learn 15 secret shortcuts to good housekeeping that your mother never told you.
some information about preemie benefits to bm:
better immunities- your breast milk passes all the protection to your little one that they can get and need. at the beginning the colostrum is a power boost to babies. so even if you only get a few drops, SAVE it! and tell them to give it to your tiny little one. even if you have to freeze it initially, which you probably will, it will be so beneficial to them. about 80% of the cells in breast milk are macrophages, cells that kill bacteria, fungi, and viruses. breastfed babies are protected in varying degrees from a number of illnesses including, pneumonia, botulism, bronchitis, staphylococcal infections, influenza, ear infections, and german measles. and mothers produce antibodies to what ever disease is present in their environment
i used the sling for the first time yesterday during church... wheeling the stroller around everywhere offends not only my ideals on how to interact with a baby, but also locomotion in general... navigating the world with a stroller is a whole new ballgame.
so, i gave the ol' diaper bag w/ pulse ox monitor, and oxygen tank in shoulder bag, and sling with baby a try. it wasn't a total bust. she LOVED it. she had been crying in the car the entire trip [insert torn rotator cuff here] and when i delicately stuffed her into the sling she immediately went to sleep and started sating 100%. it seems impossible that anyone could have good oxygen saturation with their head
pets have been the center of some controversy in my household lately. my dog went off the deep end... we moved to a new house, within a week i was in the hospital on bedrest then delivering, 3 weeks later i was out, for another 2 months we were back and forth everyday to the hospital, then the last month or so i was living there. so, needless to say, the mutt didn't adjust to the new place, and went into puppy mode. yes, i guess that's what you'd have to call coming home each day to something new being destroyed. she had a bit of a coping problem, thus daddy has had a bit of a coping problem as well. i can't count the threats that have been made to her life. he was in training for a few weeks over the course of the great pillow massacre... he asked me one night on the phone, in a tired and broken voice "do we even have any pillows left?"
in the mean time the cat went native on us. he's fixed and everything... but that didn't stop him from climbing out windows, (he's smart ok? he figured out how to push the screens out), opening doors t
You calm my raging seas
You walk with me through fire
And heal all my disease
I trust in You
I trust in You
I believe You're my healer
I believe You are all I need
I believe You're my portion
I believe You're more than enough for me
Jesus, You're all I need
-healer, kari jobe
i've written several times about the amazing things
BUT, as i'm walking to the car, pretty pleased with our little trip,
taking our first nap together was amazing! it was literally the best sleep i've ever had in my life. no more worries... i nursed her lying down, then covered her up with my skirt.. and we both dozed off.. giving daddy time to take a picture.
i will say there are logistical challenges that have nothing to do with feeding etc.. just trying to organize the
today they moved all of wren's comfort objects out of her bed, and laid it flat. then i put her in it on her back and she proceeded to cry and spit up for an hour. according to the AAP the babes are supposed to be lonely and uncomfortable. well, really i suppose that might be over dramatizing it.... wren sure felt that way though. i'm not totally sure what i think about all this... perhaps the statistics on SIDS aren't accurate... or perhaps there's another correlating cause... i just haven't done enough research to know. (don't worry- i'm sure more information will be forthcoming on the topic. check back soon. i know you're chomping at the bit for my opinion on EVERYTHING. right?)
we've made a pretty controversial decision to do what she wants. we're going home on oxygen and a monitor anyway. if the kid wants to be swaddled (arms out) then i'm going to do that to put her to sleep. i even have a sleep wedge! gasp! but it will really help with her reflux. i might even cover up her little eyes too... our monitor just came in yesterday. i suppose i won't have to use it yet... but we got the angelcare monitor. i've recommended it for several years now. i know of 3 cases where a baby stopped breathing and the monitor alarmed, saving the baby's life. i think it will definitely help me sleep at night. if i got a video monitor i'd just spend all night staring at it and running in the kids room to make sure she was still breathing. this cuts out the first step. :) anyway, this monitor also gives me confidence in our positioning decision.
wren weighed in at a whopping 5lbs 9oz today! (i wonder if i will ever type her weight without an exclamation point after it.) she is almost 18 inches long... she's creeping closer and closer to real baby size! (some are even born full term at this weight believe it or not.) she's still eating a TON! we picked up a new bottle yesterday... she'd been totally collapsing the nipple on the medela low flow. (which came highly recommended... and i wouldn't not recommend it even now.) she would pretty much occlude the flow altogether. i'd read good reviews on the adiri, and the baby store was having a sale, so we picked one up. it is AMAZING! i probably won't need a whole fleet of bottles for feeding, but even if i did i'd invest in these suckers. thadd's first response was "that's obscene!"... and the nurses have taken to calling it "the boob bottle". but hey, that's what we're really looking for isn't it? all the nurses that have seen it so far are sold. (i think one is even picking up some for her daughter.) it gives her a natural latch, and since she's taking in more than just the "nipple" part, she can't occlude the flow. she also gets NO air. to the point that she hasn't even really had a burp! so far i just can't sing the praises of this bottle enough. it ran me about $10, which is really outrageous- i realize this. but for a gassless, happy, also breastfeeding baby... who can put a price on that? (in the interest of full disclosure: 1 downside. i don't think the milk can be heated IN the bottle due to the construction and insulation of bottle. i need to investigate it a little more.)
her crit is up to 32- still climbing. it's up from 31 last week. from what i've found the normal for a female is about 36-45. though i think what i've found is referring to adults. her c02 is down again as well. from 62 to 59. this is GREAT! since we've been slowly weaning her flow down and down it's important that she's able to rid herself of the c02. they told me last week that because of her cld they expect that her c02 will be higher anyway. so, her norms are higher than what they would usually expect.
speaking of oxygen flow requirements... i was a little worried that she'd hit a wall in her weaning- but tonight while i was with her she got weaned down to .10liters or 100milliliters. she's still got a long way to go to get to 0... but i'm giving myself a little more hope, each time that she's weaned, that she'll be off of it by the time we move. we've talked about maybe even postponing our move by a week or so to give her extra time to get off the tank. we'll see.
so, big week this week. tomorrow my husband is spending the day cleaning up our house. i went home for an hour or so yesterday to do some laundry and it doesn't look like much has been getting done. (one of my plants is just shy of impending demise.) i've also got a few other honeydo's like setting up the cosleeper... making sure the stroller is in one piece. we ended up going with the maclaren easy traveller due to the basket size on the bottom. most of the other universal strollers had smaller baskets... and we were worried that the oxygen and monitor might not fit. (which is the whole purpose of the stroller. if you remember, i wasn't even going to get one- being a fan of wearing my baby- but that is not really an option now that she comes with so many accessories. ) we went with the universal to have a cheaper alternative to the peg. this way, if the airline demolishes it next month, we haven't lost an arm and a leg.
i'll still be here. hanging out. doing my breastfeeding thing... waiting on the oxygen to arrive on tuesday. i assume they'll have some sort of rigorous training for me. i guess we'll see. i'm only moderately nervous about it. maybe i should be more nervous. any oxygen toting mommies have any advice?
i'm working on a sign to hang on the stroller/carseat... any ideas on the wording?
"you're cute too- but i don't get in your face"... or maybe, "thanks for the handshake, now i have the flu"... no... how about "please de-gross yourself before getting in my space".... i think all this will be so much easier when i can just pop the kiddo in a sling. as it is i'm not sure the size of the oxygen tank/monitor so i don't want to doom myself to days of wearing a baby on front, and all the gear on the back. i was talking about this to some friends yesterday and they brought up the point that it's taboo to invade the space of another adult- that's why slings are so awesome! but kids space? that's for everyone! wooo- free space people... jsut take it for yourself. i'm not totally neurotic you know.. i have a baby on oxygen. now that i'm writing about it it's freaking me out a little more than i'd realized. oh well, i'm definitely not the type of person to hide in my house for a year. i just can't do it. so, we'll have to be on guard with the purell and the hands off responses.
Zoe is my first child and I don't have anything to compare the process by which I felt bonded to her to. I would say it took many many months and was never a sudden feeling. In all honesty the process is still happening now."
reglan's the monkey i'm talking about.... reglan! of all things to have a problem with.
i (stupidly, and unnecessarily) started taking it 3 days ago to boost my supply. it's an off label use for the anti-gas/heartburn medicine... and boy does it work. i went up from my normal 120ml+ to 200ml+ each pumping. and having to pump after i fed her to feel empty. take that ob/gyn that wouldn't prescribe it to me.
the Rx said to start it with 1/day, then 2/day, then 3/day, take 3 for a few days then taper off... 3/day, then 2/day then 1/day for a few days then none.
today i didn't take any at all- ugh. let me tell you, that was STUPID! you really should follow the instructions on the bottle people. i knew it had a possible side effect of depression, so i thought i'd just try to keep good tabs on my temperament and mood. i realized my supply was more than adequate, and not wanting the negative side effects, decided to stop taking it.
so, by 11am this morning i was reaaaaaallly feeling it. nausea, headache, lethargic, just overall sickly. i felt like i just might die. (ok, that may be an exaggeration) i asked the doc in the nicu if the reglan could cause all that. (knowing that i had been a naughty girl and not followed the Rx.) shocker: yes, it could. apparently reglan is a dopamine blocker. AND, after doing some research i found this. perfect!
verdict: it REALLY works to boost supply. but only use it as a last resort... and be sure to follow the instructions folks.
intro to infant cpr- one step is actually to pat the baby on the foot and say "are you ok? hey, are you ok?". no, i'm not kidding.
preemie video- telling me what i already learned in 3 months of nicu life. ie. don't overstimulate them. be aware of their needs. aren't preemies neat. wow, you have a preemie.
PURPLE video- this is the new, trendy name for the still terrible condition better known as colic. (i wonder what colic really is. how much of this is caused by formula? diet? environment? or some sort of undiagnosed health issue?)
p- peak of crying
u- unexpected onset
r- resistant to soothing
p- pain like face
l- long crying bouts
why don't they just call it colic? if your baby has it, believe me you'll know.
some tips to help parents not lose their mind-
just trying to comfort the baby can actually lessen crying by up to 50% (imagine how bad it COULD be!)
also, my sister used baby's bliss gripe water methodically when my nephew had colic. i would, and i'm positive she would, recommend it highly.
carry them more, walk and talk.
it's ok to be frustrated.
it's ok to walk away.
which brings me to the "don't shake your baby" video. really? do people need this? it seems like no amount of talking about it will prevent it from happening... am i right? maybe i'm not. but if i get one more pamphlet or reminder not to shake her, i might shake the person telling me.
they also said that half of all preemies will be readmitted in the first year of life. ick. let's hope not. i'm posting a poll on that. please take the time to fill it out.
[poll discontinued] 60% of you said that your preemie was not readmitted.
i can't stay away from her now. it's strange.. now that i know she's coming home i feel like she's really mine. it's almost like i feel they gave me my daughter- now she's mine and i can barely leave her to sleep. i actually walked down just to hold her a little bit ago, i roused her just to hold her.. i haven't done that in a long while.
she's been taking around 100ml at each bottle feeding! i think that they may have been underfeeding her for the past month at least. when she was still getting some feeds gavaged they had her at only 45ml. she's taken more than that for the past few weeks from day 1 of being on an ad lib schedule. (ad lib means they feed her as much as she wants, whenever she wants. or, they call me whenever she wants to nurse for as long as she wants. :) right away she was taking at least 80ml by bottle. she now weighs 5lb 7oz! and has been gaining weight like the champ that she is. or heifer that she is. that's my little pet name for you wren- heifer... though i suppose little bird is a bit more endearing.
i'll be rooming in on tuesday night with the oxygen equipment just to make sure that i'm confident with it. then wednesday, it's off to the nest!
i think this was the first time dad realized we were going to be taking our little girl home.
everyone seemed surprised- but i knew she could do it. of course this assurance of her amazingness in a car seat didn't stop me from having to leave the nicu while she did the test. it was the longest 7 minutes of my life! (and there were 83 left.... i had to go.)
to pass she couldn't have any desats, bradys or apnea while in the car seat for 90 minutes. she also shouldn't require more on her oxygen. it's fairly common that when the little ones get hunched over in the seats they require more help.
against the advice of the certified car seat expert on staff at the hospital... i decided to go with the peg perego primo viaggio. it's good from 5-30lbs, great in crash testing... and with the money we saved by not having a nursery- what the heck? i went with the papaya color so it would work with our next one too... boy or girl.
also, i'm not sure if you noticed... but i'm a great mom... did you see that her outfit matches her car seat? things like that are just way undervalued in our society today.
here's the plan:
today: discharge meeting, carseat test
tomorrow: discharge class
saturday: hearing test
wednesday: oxygen gets delivered to the hospital
thursday: ROP exam
friday: day 100!!!
somewhere in between wed and Friday we're going home!!! :) and it could not come soon enough for this nicu mommy!
i've had enough of being told when i should and shouldn't give a bottle (a different doctor again??!!!) to being told what car seat i shouldn't buy due to cost (who is this lady anyway??!!!) i've had just about enough of micromanagement of my parenting (why is this nurse torturing me??!!!) i also had conversation number 8 regarding vaccination.(did i stutter??!!!) which, surprise, we're still not doing... big shocker.
it will be so great to be able to parent amongst ourselves, asking for advice when we want it- without being pressed to compromise our stand or change our minds.
the discharge meeting went ok. they actually said there's a decent chance that she could be off oxygen before we move! woot! we're not getting our hopes up- but we're holding a little teeny tiny bit of hope in the very back of our minds that she could be off soon.
we went over some of the logistics of traveling with oxygen... ugh. what a crappy trip that will be. but at least they're setting it all up for us ahead of time.
i'll send more of the play by play in the days to come.
love to you all.