micropreemie mommy

i’m convinced… the hospital is a vortex.  it not only sucks time up like a big vacuum cleaner, it also just does something to your sense of reality.  now that i’ve had a chance to step away from the ’scene’ as it were for a couple of months after almost two years of constant hospitalizations i’m realizing what a bizarre existence it is.  i must admit i’m having a little panic feeling being here, but i think it’s because i used to feel truly trapped here.  heck, we were trapped.  my daughter was trapped.  she was attached to a wall by no less than 20 tubes and wires.  i used to kid with the nicu folks about why they had so much security for the nicu… it’s not like you could pick up any of the babies and actually walk away… you’d be pulling 100 lbs of equipment and possibly chunks of sheetrock with you.  not that i didn’t think about it a few times…

well, i’m now sitting here in my pj’s with some lullaby pandora on to soothe ms. madeline off to a solid sleep.  we are so blessed to have two children that are good sleepers, but she can tell something is different and is getting a real kick (no pun intended) in whacking the heck out of the siderails of the crib with her feet.  she’s a jumbled mess of monitors, ivs and tubes right now though, so i’m pretty sure she’s not running anywhere anytime soon.

this afternoon went well!  we, the farrells, were actually on time for once (hey, we’re getting better) but the hospital was running late.  surprise!  ha!  it didn’t take as long as i thought to gather madeline’s and my things (although i forgot my sneakers darnit) so i actually had about 15 minutes this morning to run an actual errand sans children.  glorious.  ok, it was to buy nail polish remover and toilet paper, but i’ll take it.

anyhow, once mad went back to the or, i actually got the ok to carry her back myself and sit until she went to ’sleep.’  i know they’ve said (and said this time too) that it can be hard for parents to do that, but i’d rather do it than not… well… my baby is a fighter.  she did *not* want to take a nap and it took a little bit to get her to breathe in the anesthetic.  they hooked it up to her trach and she kept opening her mouth and breathing it all out… in my face… i almost went to sleep too!

the whole procedure only took 45 minutes, if that.  the doctor came right over to us in the waiting room and let us know all looked good.  he even gave us pictures.  madeline’s vocal chords!  going in the baby book.    it’s amazing to think that in the womb a baby’s little molecules and cells all organize and form all of these complex systems… isn’t it just nuts?

she was immediately transferred up to the icu where they put a cap on her trach.  she was actually completely off oxygen for a awhile, but then fell into a deep sleep and needed a little whiff.  so, now with the nasal cannula, she looks even more like molly.  so amazing.

here she is before the procedure with her pink monkey…

this is me wondering why i didn’t just go to medical school…

seriously, this kid just had ’surgery’ and was under anesthesia… she is toughest and happiest kid i’ve ever met (and i’m so lucky she’s my daughter!)

they’re saying that after 24 hours of capping, out comes the trach.  i can’t freakin believe it!  stay tuned!

sheesh, another week’s gone by and no post.  that doesn’t mean nothing’s going on though!  we are busy!

the farrell four has been busy doing the typical family thing…  and that is so nice to say!  the girls continue to adjust to one another and have become a bit better at acting as a team… good for them… not so great for mom and dad, particularly in the ‘mess in the living room’ part.  our house is a bit on the ‘cozy’ side (to put it nicely), so the living room has become somewhat of a play room (i.e. colorful plastic war zone) and picking up the mess each evening is not optional… if i step on another one of those arch crushers at night, i’ll scream!

we have a couple of big, big appointments and procedures ahead.  first, ms. madeline is going to be admitted at childrens at the end of august for the possibility of decanulation (equals ‘possibly taking her trach out!’)  i must admit i am so extremely nervous, but i guess that’s a bit normal for a mom that’s seen so much.  she’s still on a pretty good amount of oxygen, so we may be going to nasal cannula if the trach is removed.  i’m not really looking forward to two nasal cannulas being repeatedly taken off, but it’s going to open us up as a family to a whole lot more options.  day trips may happen…awesome.   i won’t be driving like a completely distracted lady…yay! 

as it is, i finally got fed up a couple of weeks ago and turned her seat around.  i know the rule is kids at least one year and at least twenty pounds… she meets those by a long shot, but the seatswe got are rated up to 35 lbs facing backwards… maybe for a typical kid, but not our girls.  i need to *see* them to make sure they’re ok. 

so, what’s up for the week:  (1) one pt appointment outside the home, (2) one developmental therapy appointment, (3) three other pt appointments, (4) two speech/feeding appointments… and a partridge in a pear tree.  i am *so* thankful we have great therapists and great nurses during the day who see them through those appointments.  i wish i could be there for every single one, but to be honest, the girls melt when i’m there, wanting me to pick them up… i *want* to pick them up, especially madeline, when she cries… it’s almost as if she’s been through much, i can’t stand to hear her crying. (and she is starting to really *know* that.  what a budding little actress she is!)

parting thought… i *need* to get back to regular, regular exercise… not three days on, 12 days off exercise.  i’m pretty annoyed at the way i feel right now (let’s just say i’ve been living with alfredo taste and a broccoli budget) and i have no one to blame but myself… i have to get out there.  i think i need some tough love. 

oh yes, my friends.  my back decided to take a long, painful vacation last night… it actually started about two or three weeks ago, about 10 days after our little madeline came home.  as i’ve explained before (and i’m really not wanting to give her a complex, but…) lifting a 28 lb child off the floor (or out of a crib that’s down on the lowest rung) without getting a little ‘oomph’ from the little babe really does take a toll.

countless people have said, ‘oh, lift with your legs…’ or ‘make sure you squat…’  listen people, i KNOW!  it’s not as if i’m bending over with my knees straight and trying to do some ’strongwoman’ thing.  i’ve been trying to stretch it out, go for a walk to limber it up, even making a valiant attempt at shedding some of these needless (and countless) extra pounds.  i’m telling you, though… nothing can prepare you for 28.25 pounds of giggle, slippery delight being lifted out of the bathtub… nothing.

so, being typical me, over the course of the past week or so, i’ve been trying to pretend it’s not really happening.  i go to bed each night, fully believing it’ll be fine when i wake up in the morning, as if i’m still 17.  i’d been being careful, trying hard not to needlessly overwork it and yesterday during our walk, I could feel it was getting a bit better.

until… (dun, dun, dun)… i took a little trip to cvs last night to pick up a couple of things.  i knew i should’ve walked down there (considering it’s so close to the house i’m actually embarrassed to say i drove).  everything was fine until i got back in the car.  as i swung my left leg in and closed the door, my back seized up to the point where i couldn’t actually lift my right elbow off the armrest to start the car… so i just sat there… in the car… with my butt off the seat, my elbow on the armrest.  it was quite comedic, you know, if it weren’t for the searing pain.  i finally got a handle on it enough to start the car and was thankful that it was only two right turns home (as turning the steering wheel was so painful i could’ve cried).

long story short, this morning started with me working on my computer on the kitchen floor and a trip to the docs and is now concluding with 800 mg of ibuprofen, one (or perhaps two) tylenol with codeine… and a muscle relaxer for later, you know for dessert.

have i mentioned how much i love my husband?  (you out there?  wink wink)  i have to get a good word in considering i may be in drooly heaven this evening and not able to be on night ‘duty.’  shucks.

goodness gracious it’s been awhile since i’ve updated here.  i’ve been meaning to catch up a couple of times and i have a bunch of drafts hanging out there, but alas, none of them made it to final.  part of me hasn’t had much to say and part of me is so overwhelmed that i have *so* much to say, i’m exhausted just thinking about it… does that even make any sense?

we are getting down to the wire in bringing madeline home.  i can’t believe it.  no really… i’m so far removed from the early stages of motherhood, but yet i’m feeling all of those stages of nesting and things (but without the sleepless nights and big belly… guess maybe that’s a plus)

as madeline will have night nursing to start (and we live in such a mansion, ha!) we decided to make our former “front room” a bedroom for madeline.  that way she’ll be on the ground floor close to her equipment both day and night, the night nurse will be able to move about… and we *may* get a sliver of privacy.  i don’t know, the whole thing (having a stranger in the house at night) is plain weird but it’s the only way this is going to work… i *have* to sleep… judging from the time this is posting, you can tell i’m a bit of  a night owl to begin with … add on a baby at home with a trach (with concentrator and compressor… ah, white noise), another baby on a concentrator and feeding pump grinding and beeping away, a husband and his CPAP, a full time job… and a brain that doesn’t shut off… i need to have *some* peace of mind each night as i crawl into bed that someone will hear her ‘ding off’ if her sats are low. 

i’m confident that she’s going to do awesome and amazing when she gets to the home environment, but we all know that home will be different.  right now she sleeps through the night and on the mist and oxygen at the hospital, her secretions are stable enough through the night that she may only need suctioning once or twice… at home, things may need to be played with a bit so that she’s comfortable and happy.  it’ll be great to have the nurse there as they are supposed (that being the most important and operative word) to have experience with kids with trachs.  i hope to learn a lot from them.

i’m also thinking of going back to nursing school… i’m pretty sure i could sleep through most of the classes at this point. 

so, anyway, here is ms. madeline’s new digs.  we didn’t paint the walls (of what was supposed to be the dining room) as we are hoping to either have her back in the nursery (or MOVE!  hint, hint, dear hubby) as soon as she’s ready.  i think it’s cozy and charming.

the whole medical equipment thing… well, i guess it wasn’t in my dream picture of a nursery… in a way though, i’m delightfully calmed seeing some of the same things that help my baby in the hospital.  i actually relaxed quite a bit once the respiratory therapist came and help me set up all of the systems.

here’s the result… organized so far!

and much better than when they first showed up on friday night (and took over our kitchen!)

it’s all for this delicious ball of baby goodness and i couldn’t imagine being a happier and prouder mom ever.  she’s the strongest woman i know and she’s not even 2 yet.  keep your eye out for her in the future… she’s going to save the world.

…and not to be outdone… ms. molly deserves an update as well.  she’s officially grown out of most of her clothes, has finally moved on to the next size diapers and is starting to look more and more like mad.  she’s a little actve madwoman during the day and like to stay busy (just like her mommy)…

here she is multitasking… working on her puzzle and conversing with elmo

and, of course, molly is becoming quite the little fashionista, courtesy of auntie katelyn’s sunglasses…

here’s a small update with what’s going on with the farrell four… i’d normally go all in with the big update, but the big tired feeling (largely because of the nurse that decided to change molly’s diaper at 3am *for no reason* and then left me with a wide-awake-baby)  is taking precedent…

ok, let’s see.  well, molly has been at childrens since thursday.  her wretching and vomiting has subsided, which is fabulous, and they think that’s in large part to introducing some lasix, a diuretic… and they’re not entirely sure why her body is holding onto so much fluid… and that’s not so fabulous.  *my* initial inclination as a mom (and i by no way shape or form have a medical degree (although going through all of this might earn me an honorary one at this point, but i digress)) is that it’s a combination of the underlying lung disease she has (as she’s a micropreemie and has walked that ‘walk,’ complete with oxygen and ventilator for the first nine days of life) and something to do with increasing pulmonary hypertension.  on one hand the pulmonary hypertension cardiologists doesn’t think she’s a ‘critical’ case (as in she’s not blue and doesn’t have a distended or enlarged liver…hello, why would we wait that long) but they think she’s critical enough to push up the heart catheterization while she’s still an inpatient to this week.  we heard great news tonight and it looks like she will be put in the schedule for wednesday.  this is a pretty serious procedure, complete with sedation and intubation and i’m not going to lie and not say i’m scared to death.  please continue to keep her (and us!) in your thoughts and prayers… as we need them. (four plane tickets to hawaii would also be great, thanks.) 

**amazing farrell four news alert** hellllo, so i called over to madeline’s hospital today and she is currently going through a 24 hour mist trial… people, this is freakin amazing.  that is a whole day without the vent… do you know what this means?  this means sunshine and rainbows!  no seriously, we have been waiting almost an entire year for this point since this tracheostomy adventure began.  i’m elated and nervous and hopeful.

she’s so amazing and strong and beautiful (and quite the ham)… don’t you think?

oh… c’mon… i’ll give you one hint where molly is right now… go on, guess… it ain’t the circus or the library or the farm stand… it begins with “ch” and ends in “ildrens hospital emergency room…” no kidding…

we’ve actually had a pretty fantastic week over here at the farrell four, except, you know, the whole possible intussception thing (and seriously? i know wiki isn’t my goto reference, but i hope to goodness sake the person who wrote that made up the fifteenth word of the explanation (gag)).  my darling husband and his mom (i love our family!) went to the er with her this evening while i try to finish up some work deadlines.  my mind is of course with them… but our health insurance is with my paycheck… and life goes ’round and ’round.

ms. molly has been feeding fantastically via j-tube and she even passed the (smack) gi appointment (smack) on wednesday (smack) with flying (smack) colors… of course, our gi docs are asking me why molly isn’t feeding by mouth and i’m like, ‘hello? don’t you doctors talk to each other?’ (those smacks are me hitting my head against a brick wall)…

someone today referenced state agencies as being all different pockets of the same pair of pants…

being a parent of former preemies (or any medically challenged kids for that matter) is like being the crotch of a pair of very itchy, ill-fitting pants with all of the doctors in *zippered* pockets. none of them will care to come out of their pockets to talk to one another and they all think their pocket is better than everyone else’s (i’m generalizing here as we do have some great docs, but honestly)… it’s extremely frustrating.

i’m only glad i can take these preemie pants off in a couple of years and god willing, bid them adieu

stay tuned for a psa…

as you all know, the idea of preventing premature birth and making sure all babies are born healthy are very important to my family.  we have no definitive answer as to why the girls graced our presence so early and we may never know, but we’d like to ensure that research programs are funded and this cause is brought to the forefront with all of the various fundraising efforts going on.

even more important… my girls were given a synthetic lung surfactant that **saved their lives.**  the organization responsible for funding that research?  march of dimes.  we are forever indebted.

in that vein, we, the farrells, along with family and friends as part of ‘team farrell peanuts’ will be walking on june 27, 2010 along the cape cod canal.  it should be a wonderful day and we are totally looking forward to getting out as a family and making a difference.  will you join us?  we hope you can and madeline and molly would love to meet you.  if not, please consider making a donation to the team by clicking the icon below.  we’ve raised $585 of our $1,000 goal so thank you!

people… peeps… tweeps… i did it.  i actually got up this morning before anyone else stirred and hit the pavement. (figuratively, but almost literally as well… baby needs a new pair of kicks).  3.6miles in 45 minutes… not the best ever by far, but considering i’m carrying… oh… *TWELVE* extra bags of  5lb potatoes on my hiney (if you get what i mean… do the math) from my pregnancy, then it’s not too shabby… 

now for the compelling baby gastronomic news… my post last wednesday night gave a little insight as to where my mind was after our “let’s pull our tubes out and off” incident of 2010… i have to admit that being by myself with my baby and a *hole in her stomach* with this big bloody balloon thing hanging out brought out some sort of wild mom craziness that i’d never experienced.  i was upset that i had gotten so upset, but when i think about it i really did what i needed to do… i neutralized the situation and then went for help.  granted, there was a lot of ‘omigod’ and running around… i don’t think anyone can blame me for that.

anyhow, molly had a quick overnight stay at childrens as the gastric-jejunum tube has to be put in at interventional radiology (as they guide it in using a wire with fluoroscopy) and of course they had gone home for the evening.  she was first in line the next morning and we were home by early afternoon.  we had a big change in her eating plan *for now* until we can get the heart catheterization done on may 5th… no food by mouth.  what?  yup.  the baby that i’ve been bribing with food and bringing to feeding specialists is now being fed exclusively by j-tube (directly to the upper portion of her intestine) so that we can eliminate the possibility of aspiration and therefore, pneumonia.  it’s the hardest thing i’ve ever done… and i know that sounds completely selfish.  molly has actually been ok with it, which is a huge surprise to me… i had a small mourning period where i was losing that high chair and food flying time, but i can tell from her disposition and general ok’ness that perhaps what we were doing wasn’t working.  eating food (and the reflux that came with it) hurt her and she was fussy a lot of the time.  we have had (knock on wood) not one ‘mt. vesuvius’ vomit attack and not so much as a dribble or cringe… it’s working.  i’m breathing a sigh of relief on this one for sure.

ms. madeline is up to twelve hours of mist today… that’s 1/2 the day off the vent.  that is *huge* for those that aren’t down with the whole vent lingo.  we have a big family meeting scheduled tomorrow to get a trajectory of where this is going and even a potential ***discharge date.*** get your musical instruments and your floats and your kazoos, costumes and circus acts ready.  we are going to have a freakin parade.

i can’t even begin to explain what it feels like to have your daughter be 15 months old and have never been home.  she hasn’t played on the living room floor, laughed in the backyard, slept in her own crib… in laymen’s terms, it stinks.   i sincerely hope that if nothing else we can help in the future to bring light to the needs of these kids in hospitals such as franciscans… madeline is so lucky to have family… to have friends…. to have hugs… to have a home to come to.  it brings me to tears just thinking about it.

anyhoo, things are looking up for the farrell four.  sweet!

couch to 5k? try ouch to 5k… well, whatever it is, i gotta start doing something active again. 

*every* *single* *day* i find an appropriate excuse (i can’t because of the *baaaaby*, i can’t because it’s cold, i can’t because it’s hot, i can’t find my sports bra, i can’t because i don’t want to… you get the idea) and each day i also get irked that i’m *not* doing something to get my arse in gear (namely when trying to get dressed… in *anything* in my closet that does not contain spandex)

i know, i know… people keep telling me that i need to cut myself some slack and the stttrrreeesssss of having two sick babies is excuse enough… for what? for being fat?  for having my car just veer into taco bell? for having the chair in my office (swear to god) *sigh* whenever i sit in it?  no sweethearts, i think it’s making things worse. 

i get panic attacks thinking of how i’m going to push a 100 lb stroller with two cherubs, two oxygen tanks, two feeding pumps, an HME, emergency trach care kit, suction machine, diaper bag and purse… i certainly can’t save two kiddos from running into the street if my *arse* can’t fit out the door!  i can’t go to disney world if my arse doesn’t fit through the turnstile!  i’ll need a dreaded minivan just to fit my badonkadonk!

yes, clearly something has to be done… my plan is to run at least one 5k this summer (run being used *very* loosely here)…

 care to join and/or help me along?

one of the hardest things (in all of this) that we’ve had to deal with at home is ms. molly’s oxygen tubes… we are either tripping on it or it’s getting tangled or molly just wants to play with it… i guess if i had 25 feet of flexible tubing that i could teethe on i’d be all about it too. sometimes we find her in the morning with it ripped off of her face and around her neck, other times it’s so tangled she looks as though she were performing some houdini trick. it’s always put down the back of her onesie or shirt and thredded through her pant leg, but now that she’s mobile, it’s becoming a big problem… and i have absolutely no idea what to do about it.

when the girls were first in the nicu, i had a valuable book entitled “PREEMIES.” (so original on the name, don’t you think?) it was really a great resource and highly recommended for anyone going through the process however. anyway, i remember reading about the part where they talk of home oxygen, specifically because they had told us very early that madeline would be coming home on oxygen due to her past ventilator experience (because of PIE).

i distinctly remember looking at this picture below and thinking, ‘well, that looks easy…’

*except*

here is what molly looks like on any given day:

… liars liars pants on fire(s)…

i first thought molly would be off oxygen by the end of the summer *last year,* then the fall, then the holidays… now i’m just resigned to the fact that it is what it is… but how am i supposed to explain to her that she can only run in a 157 foot circle?  (booya, being a former math tutor pays off… 2 x pi x r baby!)

i leave you with four minutes of our sunday morning together… one of her scooting and just about crawling… and the other three munching on her oxygen tube.  argh!