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!

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…

we are home and ms. molly is doing great.  she kind of looked around once we got into the house and looked at me and then gave me this big smile.  it made me happy but also sort of broke my heart.  i certainly hope we stay out of the hospital for a long time now… her heart catheterization went as well as it could… after the procedure, you would have had *no* idea that she had just been sedated and intubated.  when we went into the recovery room, there she was peering through the bars of the crib, munching on her cannula.  hello?  what are you doing?  then they told us she needed to lie “still and flat” (neither words are in her vocabulary) for a couple of hours… well *that* didn’t work.  pete climbed into the crib with her to try to get her to chill out, but then she took to trying to munch on his fleece snaps and zipper.  can you tell the girl is teething?  she now has just about three teeth on the bottom and almost four on top!  her and madeline are starting to look even more like each other.  i love it!

so, it looks like molly is going to be on oxygen long-term.  no big deal, we say.  that’s something *we* can handle.  we’re used to it (i mean, the big rocket launcher-looking tanks and twisting tubes and having to pick up two other bags (one backpack for the feeding pump and the o2 tank) when we pick her up is just sort of the way it is).  when i pick up my nephew and he’s sort of just free from all wires and tubes it’s kind of weird.  i know… but i have to say… i had better not hear anyone complain to me about their full-term baby (or babies for that matter)… you have no idea who you’re dealing with

growth and oxygen are molly’s friend as well as a course of sildenafil.  we started it last night and while we don’t see an immediate effect, we’re hopeful it will be helpful long-term.  that’s given three times a day, so between that and her medications given twice a day, and then one given four times a day and one given every other day… well, i’m organized, but it’s enough to drive someone batty!  i need to sit down and just make a schedule, but i didn’t get around to it today.  (and friends, you know me… i want to make it all pretty and creative-like with my 400 colors of sharpies so i need a day or two to get my act together…)

madeline is superwoman.  the girl has been off the vent since sunday (i still can’t believe it) and all of her tests are coming back awesome (meaning her blood gases, etc.)  we couldn’t be more excited and i cannot wait to have her home.

we got approved for some nursing hours for molly for the next couple of months, but the place is having a hard time filling the weekends… if any of you favorite former nicu people are reading this, please pass the word along (or get in touch if your interested).  i am so thankful we’ve been given this opportunity to get the house in army-tight medical fashion before madeline comes home and to help with everything molly has going on. 

i may be strong, but even strong people need a break.

a mother’s intuition… well, it’s more of a parent’s intuition i would say.  after a harrowing couple of days with our ms. molly, things came to a boiling point last night.  i found my husband in her room last night as i went to bed, sitting in her rocking chair and just staring at her.

she had a couple of those wretching/vomiting episodes yesterday that left her sweaty with her little heart pounding… she’d lay down for a minute on her side with her thumb in her mouth, but then pop up as if nothing were wrong.  so strange, right?

by last night, i could see her work-of-breathing was creeping up… i could see her chest rise and fall, the little space under her neck sucking in and out… as she lay down last night, i counted her breaths per minute… 82, 75, 80… her normal rate is high to begin with (in the low 50s) but nothing like this.  we used the rescue inhaler (combivent) and settled in for a long evening.  after much hemming and hawing, we were at 2 liters of oxygen (versus a normal 1/8L) and a girl who was asleep, but sounding like she were running a race.  we called the doctor at 11:30p and he got right back to us (b/c he’s up for sainthood… seriously) he suggested switching over to pedialyte on her feeds (instead of pediasure) two more puffs of combivent and we tucked her in… breaths per minute were 65, 60, 68… not too bad… she was saturating at about 97% on 2 liters so we left as is and went to bed.

this morning i checked in with the doctor… he’s none too pleased that things like this keep happening and feels there is an underlying cause.  long story short: molly’s catheterization is being pushed up to the early part of next week, if not tomorrow.  to compound things, her pulmonary hypertension doctor is out of town (figures), but they assure us that the team knows what they’re doing.  we have total faith.

*so* back into childrens we went today.  the doctor was able to have us direct admitted (hallelujah… after last week’s episodes, i can’t stand the ed anymore) and it looks like she’ll be monitored until such time as we can get her heart tested for real.  we don’t know if it’s increased pulmonary hypertension, the asd(s), the possible blebs (yes, it’s a word) or something more serious.  the doctor has said that she should be getting better as time goes on and she appears to be getting worse and i certainly hope we’ll find an answer… because like i said yesterday… this mommy needs some good news.

on the madeline front, all is well however (and that is *great* news).  she’s up to 16 hours of mist and has been attending play group and getting pet therapy on a constant basis.  apparently she’s been quite the ham the past couple of days and i’m wanting her home so bad i could spit.  how could the child with the trach (and is in the hospital) be the one i’m least concerned about… seriously?  it’s all a cruel joke.

buuuutttt, i continue to have faith that all will work out in the end and am constantly thinking and praying for a positive and happy resolution in the not so distant future.  won’t you join me?

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!

people keep telling me how hard we’ve got it here over at the farrell four lately.  we must be spent, we must be exhausted…

sometimes i start to think i’m believing them…

and then i found this…

i was poking from blog to blog last night after a hard day and started reading a post or two.  an hour later i found myself sitting and sobbing… sweet jane’s story could have been my baby madeline’s… it was all so familiar, down to dr. boston (a double woot woot for that amazing guy)

and so i rocked my sweet madeline to sleep this evening for three hours… i can’t imagine a better way to spend a friday night (well, perhaps when we’re all home)

it could have been us… my blessings are becoming a bit frayed around the edges, but i continue to count and re-count…

happy st. patricks day people.  the picture above is madeline just after her tracheostomy procedure in august 2009.  she clearly was months ahead of schedule in her attire, but seriously?  she just might be the cutest darn thing ever.

we moved, we moved, we moved!  ms. molly is now on the ninth floor and two floors closer to the door.  sa-weet!  her oxygen level is waay waaay down (although there’s still no solid explanation of what happened… that story is to be continued) and she seems like she’s becoming much more herself.

“herself” meaning grabbing anything not-toy-related and trying to put it in her mouth.  i’m not sure how or why she is fascinated by medical equipment, other than it’s shiny and always gets a reaction out of adults, but if i had to guess, we may just have a chief of medicine on our hands if judged by interest alone.  (for the record, i have told her time and time again that stethoscopes, monitoring wires, wrappers-of-any-kind and thermometer covers are not tasty (and do not have any caloric value) but she insists on checking it out with her bite-bite-bite.  beautiful mozart playing fun light up toy?  nnnooooo… alcohol swab left in bed? yyeeeessss…

…hmm, maybe i’m on to something there.  i should start eating things with no real caloric value.  can i slice you off a piece of newspaper?  anyone?  bueller?

so now we are battling *two* different stomach bugs in her tiny tummy.  one is the dreaded c. diff (see previous post) and the other is rotavirus… if it sounds gross, well, it is.  she’s got a double whammy it’s become less like a pooping party and more like a pooping rave.  feint of heart, skip to next paragraph…  i’ve taken to double diapering her to lessen the amount of side-blowout, although it’s not solid in any way, shape or form so you pretty much have to catch it right away.  …and it’s green… which makes my stomach turn… apparently she must have pooped while my husband was down getting breakfast this morning.  my sis walked in molly’s hospital room and he was standing in there with rubber gloves yelling, ‘mayday! mayday!’  thankfully the docs feel as i do and aren’t willing to send her home for fear she’d become quickly dehydrated. 

molly went for a modified barium swallow study yesterday and did ok… we *can* feed her by mouth, but only certain things.  no thin liquids, which also means no juicy fruits or veggies (oranges, grapes, tomatoes, etc.), no ice cream, no jell-o (not that she was really eating any of that, but i did give her the occasional orange inside one of those little net things).  so, we’re back to thickened liquids if we are to give her anything by mouth.  we have this delightful clear goop that we add to her formula… their motto is “the thickener you can’t taste!”  makes me gag just a little bit every time i see it, but if it gets her growing again, i’m all about it.  i’m definitely a little scared of feeding her in general now.  i’m planning on meeting with the nutrition team before we go home and set up a regimented schedule of food over pump versus food by mouth.  i’d almost prefer food over pump and just have by mouth for comfort at this point.  we need to get her over this proverbial hump of not growing and hypertension and what-not and if it means continuous feeding (a la madeline) then so be it. 

i just need to keep telling myself  ‘this isn’t forever, this isn’t forever’ and put one foot in front of the other.  don’t get me wrong, i love my girls more than words can even say, but i’ve pinched myself countless times over the past year and i’m still unable to wake up from this dream.