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!

hi everyone!

for those just clicking over to this site, i thank you for taking a look… i started this blog to keep my friends and family informed throughout a lot of the process (although we did use a carepages at the very beginning)

if we can help one other family out there going through even a little bit of what we’ve gone through and provide them with some hope that others have gone through it and they can do it too, then i’m serving my purpose.  we had no idea how strong we could be.  feel free to reach out to me at any time!

here’s the article!

ooh, fun news! it is reported that we are going to be the front page story in the boston globe  tomorrow. neato!  stay tuned!

oh my goodness… a moment to myself!  before midnight!  well, this doesn’t happen often… we’ve had a crazy week over here at the farrell’s (per the usual) and i have to tell you, i think we could use a vacation.  to the backyard everyone!  yeah, that’s about as far as we’re going to get this year i fear, but hey, it’s honestly been my one wish since the beginning of this ordeal… to just have the whole farrell four hanging out on a blanket in the backyard.  did i expect the temperature to be hovering close to the weather in the devil’s playground though? well no.  we’re sort of captive behind the air conditioners at this point due to the girls’ lungs… and to be honest, the air conditioning isn’t that great for them either, but it’s the lesser of two evils.  case in point:  we just got back a little while ago from (what was supposed to be) a lovely walk at a nice oceanside park in our town.  it has lovely, smooth paths and is directly on the ocean… and the parking is free.  even better!  so, we had this wonderful idea about 8:30a this morning as we figured we’d capitalize on the cooler morning and started to get packed up… oh how i wish for the days when we can say, ‘ok, let’s go,’ and we can do just that… we’ll all just jump in the car and off we’ll go.

but, of course, that’s not the case right now… which is fine… but it is a bit wearing (and i must admit i think more than twice before going out anywhere)… here was our routine…

8:00am  decide to go for a walk in the park… woo hoo!

8:05am something smells… who is that?  disarm possible explosive situation

8:15am situation neutralized… sort of… time for a quick tubby

8:20am looking for hme (also called a “nose”… it’s a little piece of complicated plastic that fits over mad’s trach and keeps her airway humidified… and also protects her airway some from tubby splashes as direct waves into her trachea isn’t such a great idea).  find hme in toybox with drool all over it.  lovely. 

8:25am mommy’s back is thrown out… dead lifting a 28 pound wriggling bundle of joy without getting any “explosion” on her takes a bit of work… and her back has just about had it.  daddy takes over tubby time and mommy continues to get our excursion underway

8:30am hmm… everyone should probably have their medicine before they go… draw up 5mL, 3.4mL, 1mL of various meds for madeline… draw up 4mL, 2mL, 1.4mL of various meds for molly… draw up flushes for both… grab inhaler for molly, finally get wrenched back onto floor with molly, realize i’ve forgotten the little connector to get the medicines from the syringes to the feeding tubes… attempt ill-fated gymnastic move to get myself up without hurting back and whack head on floor… nice!

8:35am molly gets her medicines and tries to escape at every turn… mommy decides it’s time for some fun “stationary” time in the exersaucer… not the best parenting option, but if you really knew ms. molly, then you would know that she pulled out her j-tube (an aside:  thank you to the childrens hospital interventional radiology team who had to come in specially on *july 4th* to put our darling molly’s tube back in… i’m not kidding) *and* tried to crawl out the front door within about an hour of each other last weekend.  she’s definitely our little houdini.

8:40am  tubby complete and madeline’s medicines administered.  a little cream here, a little tape there, a trach collar and sponge change and a j-tube sponge change and we’re good!  madeline gets floor privileges and commences tearing apart the pile of toys on the floor while molly looks on, pointing and yelling her special “baby” commands.  i’m not sure what they say to each other, but they’ve caught on to their own little thing in three weeks flat… we are so in for it

8:45am get feeding pumps ready.  both girls are tube fed and require the bag to be changed every morning.  gather the two different formulas, prime pumps, hook ‘em up… beep beep beep… “no flow in”  what does that mean?  reprime madeline’s pump… works fine now!

8:55am beep beep beep… “no flow out?”  what?  what does that mean?  consult manual… still don’t understand… reprime again… seems to work ok now… there is a reason they sent an instructional dvd for these things.  guess i should watch it again.

9am refill portable lquid oxygen tanks.  this scares the living bejeezus out of the whole family (as it sounds like a rocket taking off each time)

9:10am madeline to the car with her belongings:  portable oxygen tank, feeding pump, suction machine, emergency trach kit, extra oxygen tubing, speaking valve… and extra diapers, wipes and outfits for unexpected previously referenced explosions.

9:15am molly to the car:  portable oxygen tank, feeding pump, diaper bag… she’s the easy one!

9:20am wait, mommy’s still in her pajamas.  quick change.  decide pajama shirt will have to do as the laundry has been washed and folded but not put away since madeline came home (and mommy and daddy’s room could possible qualify for one of those a&e shows right now)

9:30am on the road

9:40am stop for much needed breakfast-ish sustenance for mommy and daddy

9:50am hear gagging in the backseat.  stop car and jump out.  molly (aka “the easy one”) is throwing up all over herself.  lovely.  look for napkins, find a diaper in the glove compartment (mommy has been a bit tired lately).  molly throws up all over daddy.

9:51am molly smiles.  daddy gags.  we decide to press on. 

9:55am arrival at park.  daddy runs to the bathroom to rinse off.  mommy assembles stroller.  realizes she can’t bend over to put the big, back wheels on so just stands there… (i can be such a help, i know)

10 am molly is changed into an extra madeline outfit, which is three sizes too big.  she is not modest, so does not care that it is clearly falling off.  she seems happy as a clam.

10:05am everyone, including all supplies, machines and monitors are now in the stroller… the stroller now weighs 2,309 lbs (or it feels like it anyway).

10:10am mommy and daddy realize as they start their walk that the temperature may have risen 30 degrees since they decided to go for this walk… two hours ago…

10:15am – 10:35am mommy complains about back… daddy sings ‘row, row your boat’ 50 times to keep the girls from biting each other’s toes… girls repeatedly takes hats off… mommy puts them back on… mommy is sweating… mommy is out of shape… daddy says ‘let’s go!’  the farrell four reach the last bend… molly looks at us and in ‘exorcist’ fashion throws up all over herself… nice.  daddy catches some in the palm of his hand… extra nice… the farrell four are collectively deciding that it is too hot… mommy complains, daddy sweats, madeline yells and molly vomits.

10:40am we’re back in the car on the way home. our air conditioning oasis on the hill beckons.

10:45am home.  thank goodness.

all is quiet now with everyone (except mommy) taking a much-needed nap.  hey, at least we got out of the house, right? 

what an unbelievably overwhelming week… i can’t even begin to tell you how strangely emotional it all is… it’s almost so emotional i find myself sort of disconnecting from that part of it and just concentrating on getting through the myriad of appointments and visits and parade of people and phone calls and emails.  we are so flattered and happy… and exhausted. 

i can’t believe she’s been home only a week.  it feels like she’s been here forever.  madeline is adjusting quite well and is just loving being home and rolling around on the living room floor and feeling grass for the first time and sitting in her high chair while we’re eating dinner… just being a family.  molly’s not totally sure she’s in to it yet… she was very excited the firsst few days and now i think she’s sort of wanting madeline to end her visit and get on her way.  after all, molly has been the only child for over a year and now all of a sudden there’s a new person (who happens to be much bigger than her) mouthing her toys and taking up space in mommy and daddy’s arms…

that’s not to say that they don’t love playing with each other.  for the most part they’ve taken to each other quite nicely and i certianly hope that will continue.

i have so much to say, but frankly, i need a personal secretary (and my head screwed on straight to remember all of the appointments going on)… i’ll write more in the coming days, but know that we are happy as larks and settling in so nicely at 91 hill. 

life is the way it ought to be here.

*oh*… and the local paper came to do a story on us… and then the local tv station saw it in the local paper and came to do a story on us… really?  i never considered us to be that different, but clearly we’re a human interest story.  if we can help one family that’s going through the craziness we were last year and let them know everything is going to be ok, then all of this is worth it. 

here’s the link to the local paper article (yet another picutre of me and my big open-mouth… those are usually saved for weddings with an open bar, but clearly we’ve started to diversify) 

Farrell Four in the Patriot Ledger!

Farrell Four on WBZ TV 4

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…

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!