micropreemie mommy

if cuteness and love were currency, i’d be a rich, rich, rich woman…

these girls brighten my life in ways i couldn’t have even imagined.  people say it’s a profound thing, being a parent, and you don’t fully understand what it means until it happens to you.  i thought i had everything figured out until they came along and i’m now realizing i’m starting anew in amazing ways.  they are what matters.  my family is what matters.  when the day-to-day shhhtuff gets me in the dumps, all i have to do is hear that ‘mama’ or watch my madeline clap-clap-clap and giggle at cookie monster and it’s all ok… my priorities are in line.  my life is good. 

…and it’s a darn good thing i had girls because it’s all too much fun and i’m fairly sure two little boys would not enjoy pink bows, magenta bolero sweaters and the flash of the digital camera as much as my girls do.  this is what happens when dada goes away camping for the weekend on his ‘man trip.’  leopard-print shorts, fun ponytails and posing for the camera… that’s what!

well… can i just say how thankful i am to be surrounded by such amazing (and eloquent!) people?  we have received so many wonderful thoughts and anecdotes and stories of preemie success since our article ran in the globe yesterday, i will admit it… i am officially overwhelmed (but in a good way).

the writer, bella english, captured our experience so wonderfully and i’m not sure i could have written it any better (wait, let me take that back… i *know* i couldn’t have)

things are good over with the farrell four and are so positive about our girls!

i’ll admit it.  i’m kind of a car girl… i like cars.  people would be aghast to know the thought of a minivan recently entered into my mind… at some point the chaos that is motherhood rendered me to enter the ‘function over form’ stage of life.  but alas, i/we don’t want a car payment.  we’re not at the financial stage where adding *anything* to the budget (ok, the occasional lip gloss or salad or overnight diapers (expensive but totally worth it!)) is in the cards, so alas, i get to keep my little silver bullet, my toyota camry solara.  darnit {wink}

my love affair with the camry solara began in 2003 with a commercial.  it actually doesn’t really stand out too much, other than i remember looking at it and saying, ‘ooh, i want one of those.’ … and the car was red.  of course, i had just finished grad school and had a new, fancy professional job… and was living in my parent’s basement.  yup, i had a good amount of disposable income… sooo, i went and bought one.  i financed the whole darn thing pretty much and drove it off the lot. 

since then i have loved it!  the nice curves, the sunroof, the quiet, fast ride… even the gas mileage has all been wonderful.  people are always asking me what kind of car it is and a gas station attendant even went so far as to ask me how much i wanted for it as he wanted to buy it for his girlfriend.  i feel confident in it, i feel safe.  it’s curvy enough to feel young and hip and girly, but it doesn’t dissuade my husband from driving it… although he does feel like it’s a ‘girl’ car.

toyota has gotten a bit of a bum rap lately and some would say rightfully so.  i personally never felt anything but safe in any toyotas i’ve driven in… and my family has a lot of them.  my brother drives a camry, my mom a highlander and my dad a tacoma.  we’ve found them pretty reliable and safe.

the only (one and only!) thing i’m a bit bummed about is the whole two-door thing… the big honkin’ carseats the girls are in make it a little difficult to maneuver and i’ve put them in our suv… although we did put the infant car seat in the back ofthe solara no problem.  if i could just make it a four door, well, then i’d be in perfect heaven.  well, that and always driving with michelins hitting the pavement!

until then, i’ll take my rides to target and the grocery store in style, sunroof open, music loud and stress out the window!

*i’m participating in a toyota/twittermoms campaign, which inspired this post. my opinions, thoughts and feelings are my own. as a twittermom, i’m eligible for a courtesy gift

well… two weeks down. it’s been amazing. i can’t imagine what it was like when she wasn’t here honestly. madeline loves being home and we’ve already seen so many positive changes in her. she was a happy kid before, but no she just beams… the respiratory therapist and interventionist/pulmonologist stopped by the house (i know! can you believe people still do that? they are amazing people) last week and took a look at madeline’s “setup.” (and there’s a lot of setup… it’s like being at space camp) they then checked her pressures around the trach and said she would be a great candidate for a speaking valve. this is basically a little cap that goes over the trach with a little spigot where the oxygen tubing attachs. she is able to breathe in through the trach, but then exhales out through her mouth and nose, enabling her to “speak.” … oh and how she has been speaking.  here’s a little sample of one of her concerts:

Madeline “speaking” 6/27/10

we’re treated to that (with a smile and a lot of arm waving) at least a couple of hours each day, ending with a three act “opera” just before bedtime. 

there’s so much going on here it’s hard to even remember it all.  i actually went into staples the other day and asked one of their peoples where i could find the biggest calendar they have…  and it’s really big… which is good… because there has been a couple of times over the past weeks that people have been knocking on the door for one reason or another and i can’t remember who they are or why they’re at my house. 

in order to keep things straight in my head i’ve started monitoring every last thing on that calendar… appointments made and cancelled, which nurse when, who pooped when (just madeline and molly thankfully…), where mommy and daddy are, what my name is…

i’ve had less than an adequate amount of sleep… part of that is nervousness (we started with night nursing when mad came home and i’m still a little wary about having a stranger sitting at the kitchen table when i go to sleep) and part of it is the following:  the farrell house recently became the ‘house of ick.’ (i will use ‘ick’ for boogers, snot, etc.)  let’s just say we’re full of it.  the girls sneeze and things fly.  we’ve gone through a bj’s size kleenex pack and i’m becoming fast friends with a eucalyptus nasal spray.  i was up with molly no less than 5 hours last night and 4 hours the night before.  did i mention i returned to work this week?  it’s been a challenge, but i think my brain is becoming rewired for less sleep and more action.  if only it could be rewired for more jogging and less chocolate.  oh well, one can dream.

we had a wonderful time at our march for babies this weekend on the cape cod canal.  it was a lovely day and we are so thankful to have such supportive family and friends.  there are a couple of pictures of the girls below (thanks kristen!)  ms. molly is clearly giving her attitude a bit of exercise in the picture, but she had a lot of fun!  madeline of course was enjoying the scenery and giving everyone a concert with her ‘la la la.’  thanks again to those who participated and donated.  we raised over $3,500!

micropreemie mommy is happy…

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!

yes, indeed… under the three feet of water that fell from the sky this week in massachusetts, spring has sprung.  the forsythia is finally blooming and my crocuses (croci?) are so purple, they’d knock your socks off…

(don’t get too happy… molly’s not off oxygen… she just refuses to keep it on… she thinks it ’s the best game *ever*)

how can something be the earliest out of the ground and be so beautiful?  we have a nice weekend planned… being a holiday and all, we are somehow guilted into the “my parents/his parents” shuffle… with visits to the hospital as usual also.  it’s insane, really, but it’s supposed to be 75 degrees and sunny, so i’m not complaining.  i bought the girls the most adorable easter dresses from carters and plan on torturing them by making them sit still for 2.2 seconds to take a picture.  i’m just so looking forward to having the whole family outside again, sitting on our blanket and swinging on the swings. 

there’s a renewed sense of optimism that comes with spring.  i’ve actually been undergoing a little bit of a renewal this spring myself, thanks to my awesome friend kristen who nominated me for a makeover (yeah, i’m to that point… i’ll admit it.  i’m a hot momma mess (and not hot as in hot-hot… hot as in ‘damn what happened to you?’ hot)… and i won!  this week i went to get my hair did… and tomorrow i go back for more hair and makeup and a professional photographer.  no joke!  if you live in the boston area, keldara is an amazing place!  first, it’s huge.  i got lost going to the bathroom.  everyone is super friendly, and best of all, my hair looks like a million bucks.  it’s totally what i needed and i can’t wait to look all fancy tomorrow.  maybe i’ll have to go out on a night on the town!

i must admit i’m most excited about having the girls together though.  what a difference a year makes.  here are the girls in their preemie dresses last easter (their actual due date):

they were about 4 pounds each here…that’s molly on the left and madeline (with her usual, ‘what the heck are you doing?’ face… it starts early i guess)

this spring means we’re getting that much closer to getting madeline home with us.  i’m ecstatic.

well, here’s wishing you and yours a happy weekend, no matter what you celebrate!

hippity hop!

so i got this email from bzzagent yesterday… if you don’t know what it is, you should check it out.  i’ve been participating since about 7 b.d. (that’s before diapers) so i’m always getting things from them… this one really intrigued me though.  check out the trailer for the new feature movie ‘babies’ below.  looks cute!

does anyone out there know of a simple baby sign language learning system that works?  between both girls, i definitely need to learn some non-verbal vocabulary… first, obviously, is madeline… being trached (and on a vent a lot of the time) means no use of her vocal cords… i haven’t heard her “voice” since may 2009.  think of *that* the next time you ask your child to be quiet…

she’ll eventually get a speaking valve, which is basically a piece that fits over her trach that allows air to pass over the cords when she exhales.  we haven’t tried it yet and not all kids tolerate it, so i definitely need to get going with other types of communication.

molly, on the other hand, is very vocal… but not anything that i can understand… it’s mostly a frustrating “ahh!  ahh!” a lot of the time and often leads to her crying as i don’t know what she needs.  kind of like this…

…but not so happy…

she’s definitely reached a cognitive stage where i believe she’d benefit from some non-verbal communication, but i need something tried and true.

any ideas?

it’s been a couple of days.  i needed a break.  sometimes i feel like when i write things, they often hit me harder… it’s almost as if writing them for the world to see makes it all a little too real.  i don’t know.  i do know that being in the hospital with your child is very lonely.  i turned to the computer, to this blog when i sat there staring out the window and wishing we were all in our own beds.  i didn’t even want to turn my computer on this weekend after all of that… so i didn’t!

things were much improved for the farrell four this past weekend.  ms. molly got to come home from the hospital, only after acquiring two hospital-borne infections, with both making her trip the poop fantastic.  of course, the medicine they gave her to treat the infection *also* causes this same affliction… needless to say, but we have been going through a lot of diapers over here (hint to you moms out there… it sounds ridiculous, but double-diapering really does work… seriously)

we once again came home without really knowing what is going on with our little peanut.  it’s as if the pulmonary team is pointing a finger at the cardiac team and the cardiac team turns around and points back at the pulm team.  it’s extremely frustrating as a parent at a teaching hospital in general.  it seems as though every fifteen minutes there is someone coming in the room to poke and prod and listen.  they show up in throngs, like no-see-ums (you know, those super annoying bugs of summer), with their yellow gowns and rubber gloves and stethoscopes.  half the time i have to ask them to introduce themselves, as if they walk to every other room and just start poking other children without their parents speaking up… i just find the whole environment so strange… like a space ship i guess. 

there is once again a cardiac catheterization scheduled for early may for little molly.  we now have to wait at least four to six weeks for whatever it was that she had to go away fully.  they obviously want a solid baseline study and if you’re sick, it throws your whole system out of whack.  your heart rate increases, your breathing rate increases, your blood flow can change to an almost combat mode, your heart pressures can change.  i’m seriously hoping and praying that things will miraculously just fix themselves… it’d be a nice miracle and (frankly) i think we deserve it.  the one thing that can really improve the hypertension is to have her gain some weight.  more meat on her bones means bigger lungs which means less pressure in the heart…

sheesh… every thing always comes down to eating in the farrell family… for me, it’s stop eating… for madeline, it’s start eating by mouth… for molly, it’s eating more… for pete, well, i’ll let him weigh in on that one (no pun intended… i’m in a very fragile glass house lest no stones thrown here) …as i sit here munching (dammmmn you dove with your smooth delicious chocolate)

so, as you know the past weekend was gorgeous and i hope that you and yours got out and enjoyed it… we did (woo hoo).  ms. *madeline* went outside for the first time in 2010 (literally) and got to have a picnic “lunch” and a first swing on the swings **ever** … of course mom’s camera died.  everyone was generally happy to be in the sunshine and we had a wonderful, almost normal day (aside from the portable suction machine, extra trach, two oxygen tanks, suction catheters, cannulas… oh, and a “release of responsibility” from the hospital… ugh, i hate that)

thank you once again from the bottom of our hearts to everyone that has been so unbelievably supportive of us during this entire ordeal… it’s pretty trying for us but knowing we have such amazing support from family and friends is what is keeping us afloat.  we are truly grateful.