micropreemie mommy

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.

see the number above?  that’s the number of days madeline has been in the hospital… no joke.  i wish it were.  people have been saying to me constantly, ‘oh… how *do* you do it?’ ummm, i don’t know.  i wish i did.  i could probably make a lot of money if i could figure out how to channel some of this nervous energy toward powering cities or towns or something.  i’ve literally been running on adrenaline for four hundred and seventy four sleeps (because the five days before the girls were born weren’t a picnic either) and i think it may be starting to wear on me.  i can’t tell if it’s because madeline has been *not here* for so long, or because it’s closer to her coming home and it’s finally hitting me, or the fact that molly seems to be doing worse.  i don’t know, but i’m trying really hard to save up some good energy for when madeline comes home… and my reserve tank is being taken from each day.  it’s so frustrating.

ms. molly spent a total of four days out of seven at childrens hospital last week.  one for a regular doctor’s appointment, one for an emergency room visit, one for *another* emergency room visit (which was supposed to be a direct admit, but i digress) and another as an inpatient.  we’ve (and i say we because when she does it, i want to too) developed some pretty severe wretching/vomiting over the past week or so and it’s very concerning to me… something’s just not right.  we started the continuous j-tube feedings last month in preparation for the upcoming heart catheterization, largely because of molly’s reflux… we didn’t want to risk an aspiration pneumonia (and subsequent hospitalization) and now here we are battling possible aspiration anyways.  i’ve been told that it’s “rare” by the docs… leave it to us to be “rare” once again.  i know we’re special and all, but c’mooonnnnnnn! 

so, as the day tallies go up and up, i can’t help but think about what these past months could have been like/should have been like.  i know we’re a rare case when it comes to having a baby not be home for so long… and i think i’m just as glad to know that we’re one of the few families out there being put through so much pain.

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

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?

dear person and/or entity above the stars, please cut it!  we have had enough*… i know we *look* like strong people… heck i can bench press a few with the best of them… but seriously?  it’s time to lend us a helping hand and just give us a break… just this once… before i go outta my gourd.

k,

thanks

* i was greeted by a lovely afternoon treat… molly’s feeding tube had come out… the *big* balloon that was supposed to be inside managed to somehow come out and the whole thing was pretty much out… there was blood… there was screaming (ironically, mostly me… at my husband… so sorry babe) and me, admittedly gagging a little bit at the thought that my daughter’s stomach might fall out… so i slapped a big piece of surgical type tape over it to anchor it and off we go… n-o-t… of course there were sixteen big cushions and a giant umbrella stuffed in the car from our trip from the storage bin for our outside patio furniture… (my neighbors must really think i’m officially off my rocker.  (yelling, ‘out with you, you goddarn pieces of crap!’ and throwing stuff all over the front lawn will do that i guess) this of course followed by the longest. ride. to. boston. ever.  whoever decided to put the longwood area waaay far away from the highway (and next to freakin fenway) can kiss my big. normally polite. but starting not to be. arse.

i drew the long straw and went to see madeline and then headed home to sleep.  madeline, of course, is in a building that was built right around the landing of the pilgrims (i swear) so the heat doesn’t, like, turn, off, ever…  and the poor girl is chubby… so she’s sweating… and i’m sweating… cuz i’m chubby… fun stuff. 

… and then i came home.  and it’s quiet… and lonely…

sad face

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! 

we finally got up to molly’s hospital room around 11pm.  she was exhausted and i was exhausted… and decidedly cranky.  molly would *not* go to sleep.  she just cried and cried and cried.  i held her tight and sang and rocked… 1am, 1:30am… this kid usually goes to bed around 8pm and sleeps until 7am.  what the heck?  she finally falls asleep and i get to hit the proverbial hay (which, might i add, is the weirdest accommodations for parents ever…you literally have to sleep on piece of four-inch-thick foam on a huge windowbox right next to the ledge… try waking up and having your forehead pressed against a window 11 stories up… talk about your morning wake up call!)  she’s awake again from 3am-5am and then up at 6:30a.  the doc’s round at the crack of dawn and decide that she needs another echo to rule out pulmonary hypertension once again.  friday went a little something like this… cry, wake up, told she can’t feed, (but gave her the medicine that is supposed to *make her hungry* (hello idiots!)) crying, echo, screaming, x-ray, wailing, flipping out…

what is causing her to be so crazed?  i thought for sure it was her hunger.  now mind you she had an iv in her hand which the nurse had so ridiculously covered with a diaper… so she couldn’t pull it out.  there are signs all over the hospital reminding staff that they are to check ivs at a *minimum* hourly… so, i thought, don’t they?  well, poor molly was going berserk-o and i decided to try and change her diaper and outfit and wash her face to feel better… i take off that diaper and i have to look twice, maybe three times.  her little hand looks like it’s been blown up by a balloon… it’s white, it’s cold… holy crap.  i run out to the nurses station and the team comes running in.  there’s craziness, i’m crying, molly’s crying, i’m told that they’re going to check for pulses.  what?  yep.  on top of everything else, now we have to deal with this.  the plastic surgeon is called in to check her hand and for the rest of the day, molly spends it with her hand up in the air covered by a big pillow and hot packs.  i’m distraught.  i should have checked it earlier.  i’m told it’s not my responsibility… but clearly it is, you see, i said to the charge nurse, as you guys can’t seem to get it right.  i think i’m becoming *that* mom… eh, i’m ok with that.

saturday brought more increased respiratory distress, less answers.  antibiotics and steroids are on board, but they don’t seem to be working.  her oxygen requirement goes up and up.  finally at 6 liters we’re told that the regular floor can no longer support her needs and she is to be moved to the icp, a sort of step-down icu.  it’s next door to the icu and she gets one-on-one (sort of) nurse monitoring.  she quickly shifts up to 8 liters, then 8 liters at 100%.  what is going on with this little girl?

sunday brings us some interesting news from madeline’s hospital room across town.  she apparently decannulated herself!  yeah, she said, i *totally* don’t need this trach anymore… let’s just. pull. it. out!  seriously? seriously…

someone once told me that god doesn’t give you any more than you can handle… who the heck does he think i am… i’m flattered, but this is getting ridiculous.

molly equals more crying, more iv sticks, no eating, more wires… poor kid.  to make matters worse, the wall in our room developed some sort of drain backup which made the room smell like absolute nastiness… and of course it’s sunday… when else does stuff like this happen?  (and only to us it seems… a stamp on my forehead that says ef with me *must* be written there somewhere)

yesterday (monday) brought us more of the same and now here i sit in the consult room of the 11th floor on tuesday with no better answers than i had five days ago.  ms. molly is on call with interventional radiology to get a picc line put in and have her tummy tube switched to a gj-tube, which hopefully will 1) eliminate the amount of iv sticks and blood draws and 2) get her feeding again and growing, not worrying about possible aspiration.

it can sometimes be a most frustrating thing to be a parent… when you’re the helpless parent of a sick child/REN it’s twenty times worse.  we are here to get the best care for molly, but the communication is sometimes so disjointed between the departments it feels like i am running up against a brick wall. 

i feel like total hooey as i’m mentally tired and my body achy (most likely from not exercising and sleeping on said windowbox (see above)).  our house is a mess, the laundry isn’t done, the dust is building up, the girls’ toys should all be sanitized, the bathroom is a mess, i never got around to changing the sheets, my hair looks like a rats nest gone awol, i have zits, i need a manicure, i need a vacation… i need a one way ticket to maui…

…and all i really want is a good piece of homemade lasagna and a big salad (because i totally have time to cook)… hmm, maybe it’s time for lunch.  my tummy just growled with me typing that.

we hope to have answers soon and we hope you’ll continue to keep molly and madeline in your thoughts and prayers.

so… i know many bloggers comment on how they feel the need to make their writings profound, make a statement, tell some sort of fantastical anectode… or whatever.  well, i said, h-e-double hockey sticks… no one would believe my darn crazy life if i told them anyhow, so i’m just going to let you in on what’s been going on in our little family unit. 

as i mentioned in our previous post, we had a little event with our molly last wednesday night.  it was alarming (although, frankly, the girls toot and i become alarmed at this point… it’s like 100% super-stress-mom-mode running full tilt for 14 months exactly today). 

thursday morning started out ok, with darling auntie k (my sis) watching ms. molly and getting the finest dose of birth control money can’t buy (gigantic poopy diaper versus inexperienced diaper changer anyone?) and as i was working upstairs (yep, did i mention i still work full time?  i’m the definition of insanity, i know) my sister mentioned she just thought molly was being ’serious.’  now, maybe for some kiddos that’s normal, but for our molly?  never… the girl stares at the kitchen faucet, waves and gives it a big smile, so for her not to be yukkin’ it up is a pretty big deal.  She was still on the 1.5L of flow (for those reading for the first time, our Molly is on 24 hour oxygen flow (typically 1/8 (as in *point* 1-2-5) with a saturation of 96-97%).  As she settled in for her five minute morning nap (no lie) I hooked her up to the monitor and there it was again… 88%, 87%, 89%.  argh.  as she has pulmonary hypertension her sats should remain above 95% (it’s a little much for me to explain right now (you can skip to the bottom if you must to read why) so you’ll have to look it up).

i gave a call to our pulmonogist (and by ‘i’ i mean my darling husband as he’s the get-er-done officianado… that and i knew what he was going to say) and he, god love the guy, was on *vacation* (the doc, not the husband)… figures.  i was glad he was taking some much-needed time with his own family, but how convenient that molly should get all funky when he’s away.  we then call her cardiologist as they’re sort of “next in line” when it comes to all of molly’s issues… they weren’t pleased with what was going on and said she should most likely be brought in for some monitoring but that she would need to be admitted for that… and they can’t do that.  awesome.

they call back.  they’ve devised a fancy plan.  we are to see a colleague of our pulmonologist in their clinic and as they can ‘direct admit’ (meaning no ER… yay!) we should be on our way to recovery post haste.  … and there my friends is where my story…

*begins*

so… as they’re telling us this over the phone, mind you, i am running around the house like a crazed chicken, with my poor sister as my minion (i think she may never ever come back to visit).  i hastily throw a bag of things together and we rush in to boston, which is about 11 miles as the crow flies… but it’s boston… so it’s like 45 minutes… on a good day… in the snow.  they call us at ten of two… they ask us to be there by 2:30… we run up to the clinic and they seat us in a room right away.  sweet.  i can see things will be moving right along, i think (oh silly mommy)… as we’re sitting there i hear an unfamiliar voice in the hallway.  that must be our pulmonologist’s counterpart.  great.  then i hear him say, ‘ugh, i have to take care of this *thing* for {insert *our* doctor’s name here} and then i have my conference call… so i won’t be in there long.’  hindsight is 20/20, but boy does that sound dismissive in retrospect.

he rushes in… he checks his watch,,, he checks it again… he says something about his daughter having an italian shoe obsession… something about never letting your daughter go into a store ending in a vowel… is this guy serious?  i dropped my work (that *pays* me and frankly, pays him (hello health insurance)), i give at least three people the finger on the expressway to listen to him toot his own horn about italian leather and his lecture circuit?

he checks out my daughter, he listens to her lungs, he checks her ears… and then he says, ‘well… i don’t think she’s much different from her baseline… and she doesn’t *need* to be in the hospital. here, take my card.  i’m available anytime, except, of course when i’m lecturing.’ enough already you arsehat.  i take his card, which i’m about to ram down his throat and i sit there in disbelief wondering what to do next.  my mommy instinct is on full alert and something is *not right.*

i call the cardio team again and they are annoyed and disappointed.  they tell me that as much as they disagree, they have to stand united with another colleague’s decision (maybe b/c the other dolt was the associate chief of the dept… or maybe he’s on the committee who determines raises, i dunno)

i am now so livid there are tears in my eyes, teeth are being ground… how can someone who has never seen my daughter tell me she doesn’t look any different (when she is *12* times above her normal oxygen requirement)  call me silly, but it seems pretty darn plain as day to me that she should at least be monitored.  something is not right.

i decide to go down to the emergency department.  it won’t be swift, but our story will be listened to.  the wait was beautifully non-existent and we are in a room in about 15 minutes.  our molly had blood drawn, vitals taken and oxygen pushed up to 4L.  The attending physician there was wonderful… her first question was, “what, they didn’t get a chest x-ray?”  hallelujah.  we have a winner.  she listens, she empathizes, she makes it happen.  she quickly tells us that we did the right thing by coming to the er and we are to be admitted.

to be continued…

being part of the nicu“family” means riding the craziest rollercoaster of your life.  one of our favorite doctors referred to it as the “nicu walk,” although i’d liken it to the nicu shuffle as some days it seems we’re taking one step back instead of two steps forward.  even 421 days since the day of the girls’ birth, we just can’t let our guard down, can’t breathe those anticipated sighs of relief just yet.

we had a pretty big follow-up appointment for molly at the end of last week.  pulmonology and cardiology were on the docket and in the back of my mind, i was hoping to leave childrens hospital for the first time without tagging along an oxygen tank for my little girl.  it wasn’t to be though.  both specialists are somewhat concerned with molly’s growth (she just hit 15lbs and is 14 months actual (10 1/2 months corrected)).  the cardiologist, the amazing dr. mullen, seemed the most concerned.

both girls were born with extremely premature lungs and as a result of being on the ventilator, sustained damage.  They now have what is considered chronic lung disease and bronchopulmonary dysplasia.  because of those issues with their lungs, it has exposed them to pulmonary hypertension.  they also were born with atrial septal defects, which surprisingly is pretty common.  the cardiologist says they often hear of pregnant women complaining of being tired… an echo later and it’s discovered that they have as undiagnosed asd that never closed.  (i *don’t* have an asd, thank goodness)

our madeline was about 6 days from coming home back in may of 2009 when she had an “episode” from the pulmonary hypertension.  the pressures reached a critical point in an emergency fashion and that’s how we ended up at the childrens hospital boston nicu for just aboout four months, complete with intubations, extubations, re-intubations, nitric oxide, cardiac catheterization, tracheostomy, g-j tube, echos and sildenafil.  months later, although madeline is still vented and trached, she has thrived on all of the treatments (a whopping 22.2 pounds as of this weekend) and is rosy, smily, chubby and all-around healthy (other than the trach and g-j tube, which, to be perfectly honest, i don’t even notice any more). 

molly is our peanut.  she has to work hard on her own for every breath, every heartbeat, every movement (and there’s a lot of that lately) and every morsel.  she’s always been a bit smaller than madeline but it is becoming markedly different.  after her pneumonia in november we decided to have a g-tube implanted so that we could (1) give her the various medications she requires without her tasting them and (2) and more importantly, give her even more food (as she sometimes is pretty darn finicky).  we were hoping the pressure would be off, offering her the bottle and putting the remaining ounces over the pump while she played and/or napped.  but she still wasn’t gaining a lot of “catch-up growth.” 

we see a feeding specialist and a nutritionist on a regular basis… and now i’m making all of her baby food, giving her higher caloric density organic choices… and then adding cream cheese, butter, cheese, polycose… or all of the above.  so basically as i munch on my weight watchers snack, i’m busy shoving cheese and butter into the blender.  ironic isn’t it?

anyhow, long story short is that our dear molly is having a bit of a hard time.  while outward signs show she’s active and giggly and the cutest molly *ever,* she’s often pale, breathing is labored, heart is beating faster than i would like… the doctor and her team recommended a cardiac catheterization for molly so they can determine exactly what is going on.  they hope to discover whether it is the asd (as they are notorious for causing failure to thrive) or the pulmonary hypertension.  they will most likely want to treat it with medicine, in particular sildenafil.  i’ll let you look up what they’re calling it on the market these days on your own.  let’s just say it’s very interesting when someone asks you what medications your infant daughters are on and you say the market name… ha!

the cardiac catheterization was the procedure that madeline had that caused her to be reliant on the ventilator and they were unable to extubate her.  granted she was much sicker than molly will ever be, but we, as parents, are terrified.  she will most likely be scheduled for this procedure within the next couple of weeks, so please include us in your prayers and thoughts and we surely need them.

this roller coaster has certainly been an interesting trip, but boy do i ever want to get off.

i don’t know when it happened… when did i get so old and fall out of touch with all of this new darn-fangled technology!  i have spent a good part of my free time (so, at least 15 minutes) trying to figure out how to get from wp.com to wp.org.  i suppose if i had a single clue what the silly instructional manual was talking about, i’d be in much better shape… i am equally acronym(ly) challenged and it’s just like trying to navigate your way through a foreign country without a translator.

the good news… my blog is so pretty!  the bad news… my blogroll took to the hills and i somehow managed to blow out *all* of my previous posts with video… awesome.  *so,* look for this week to be rife with “this page under construction” images and cursing emanating from my little shore town.

we, as a family, had a great weekend.  it was quiet and slow, with a great many hours spent in pajamas (don’t you just love that?)  both girls have decided (within hours of each other) to start wreaking havoc of the physical kind.  i have found molly munching on madeline’s trach tubes, with madeline drinking molly’s bottle (ps… the girl doesn’t eat by mouth… it was a huge surprise!)… i have found madeline with her alarms ringing from the monitors to find her having pulled off her vent tubing and “blow drying” her amazingly wavy hair with a big smile on her face.  i have found molly with her little teeny bum stuck under the coffee table (i have no idea how she got there… did i fall asleep?  bad, bad mommy)

molly had a big, big doctor’s appointment at the end of last week and we’re about to embark on a little bit of a journey to get her all better and growing strong.  i’m too tired to write about it now and will update tomorrow.  everything will be fine, but i’m still weary of this nicu walk (over 425 days later!) with its’ two steps forward and one step back.  it’s really, really getting on my nerves, even if it is making me stronger. 

alrighty, i must will myself to bed before i get sucked into some late night sunday nothingness…