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.

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

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.

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.

damn videopress… my video flew the coop during my transition but i can sum up what i was talking about in a few words:

1) stop herding all plus size women and pregnant women to the same area… next thing you know, the “woman’s world” will be next to the snack bar

2) sewing billowy, flower’d polyester together and including leggings does not constitute style

thanks for your continued support (and mind the horrid technological difficulties)

conference call hell
meeting about a meeting
WTF people

that is all…