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!

sheesh, another week’s gone by and no post.  that doesn’t mean nothing’s going on though!  we are busy!

the farrell four has been busy doing the typical family thing…  and that is so nice to say!  the girls continue to adjust to one another and have become a bit better at acting as a team… good for them… not so great for mom and dad, particularly in the ‘mess in the living room’ part.  our house is a bit on the ‘cozy’ side (to put it nicely), so the living room has become somewhat of a play room (i.e. colorful plastic war zone) and picking up the mess each evening is not optional… if i step on another one of those arch crushers at night, i’ll scream!

we have a couple of big, big appointments and procedures ahead.  first, ms. madeline is going to be admitted at childrens at the end of august for the possibility of decanulation (equals ‘possibly taking her trach out!’)  i must admit i am so extremely nervous, but i guess that’s a bit normal for a mom that’s seen so much.  she’s still on a pretty good amount of oxygen, so we may be going to nasal cannula if the trach is removed.  i’m not really looking forward to two nasal cannulas being repeatedly taken off, but it’s going to open us up as a family to a whole lot more options.  day trips may happen…awesome.   i won’t be driving like a completely distracted lady…yay! 

as it is, i finally got fed up a couple of weeks ago and turned her seat around.  i know the rule is kids at least one year and at least twenty pounds… she meets those by a long shot, but the seatswe got are rated up to 35 lbs facing backwards… maybe for a typical kid, but not our girls.  i need to *see* them to make sure they’re ok. 

so, what’s up for the week:  (1) one pt appointment outside the home, (2) one developmental therapy appointment, (3) three other pt appointments, (4) two speech/feeding appointments… and a partridge in a pear tree.  i am *so* thankful we have great therapists and great nurses during the day who see them through those appointments.  i wish i could be there for every single one, but to be honest, the girls melt when i’m there, wanting me to pick them up… i *want* to pick them up, especially madeline, when she cries… it’s almost as if she’s been through much, i can’t stand to hear her crying. (and she is starting to really *know* that.  what a budding little actress she is!)

parting thought… i *need* to get back to regular, regular exercise… not three days on, 12 days off exercise.  i’m pretty annoyed at the way i feel right now (let’s just say i’ve been living with alfredo taste and a broccoli budget) and i have no one to blame but myself… i have to get out there.  i think i need some tough love. 

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!

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!

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? 

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…

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…

i am so excited to have received the email below… we are the #5 ranking team in fundraising for the march for babies along the cape cod canal!  how ’bout that?  if you’ve been waiting to donate, please consider doing so soon and we thank you once again for helping to fund research (like the surfactant that saved our little girls’ lives the first days of life)!  any teeny bit helps…

“Hello Cape Cod Canal Family Team Captains!

Your March for Babies event is exactly 2 months from today.  I’m really pleased that so many of you are not only registered, but already fundraising!!!!  There is a lot of work left to do between now and Sunday, June 27^th, and so I want to encourage and motivate you by posting the Top 5* Cape Cod Family Teams in the weekly update from now on.  (Drum-roll, please….)

1.       Team Moore                      $1965.50

2.       Picard Family                     $894.00

3.       Team Saza                           $580

4.       Our Little Monkeys         $570

5.       The Farrell Peanuts        $550

Congrats to each team who made this week’s list!  Great work!!!

*Please note that all totals reflect monies raised on OFT, and what has been turned into the office.  These totals do not reflect any offline donations collected, but not turned in.  If you have cash/checks that have been collected offline, you are more than welcome to mail them to the office, along with your team name and the name of the member of your team who raised the money (so we can credit it appropriately).  The address of the office can be found in my signature below!  Feel free to get those checks in, especially if it’ll help you make the list of Top 5 Teams (this will be updated weekly!).

As always, if you have any questions, don’t hesitate to contact me or your Family Team Committee member, with any questions!  HAPPY FUNDRAISING!!!!

Alison

p.s.  i set up a cafepress website with our little logo on it in case anyone was interested, but it’s really so i can buy little baby t-shirts for the girls with the logo on it.  check it out!  http://www.cafepress.com/farrellpeanuts

here’s a small update with what’s going on with the farrell four… i’d normally go all in with the big update, but the big tired feeling (largely because of the nurse that decided to change molly’s diaper at 3am *for no reason* and then left me with a wide-awake-baby)  is taking precedent…

ok, let’s see.  well, molly has been at childrens since thursday.  her wretching and vomiting has subsided, which is fabulous, and they think that’s in large part to introducing some lasix, a diuretic… and they’re not entirely sure why her body is holding onto so much fluid… and that’s not so fabulous.  *my* initial inclination as a mom (and i by no way shape or form have a medical degree (although going through all of this might earn me an honorary one at this point, but i digress)) is that it’s a combination of the underlying lung disease she has (as she’s a micropreemie and has walked that ‘walk,’ complete with oxygen and ventilator for the first nine days of life) and something to do with increasing pulmonary hypertension.  on one hand the pulmonary hypertension cardiologists doesn’t think she’s a ‘critical’ case (as in she’s not blue and doesn’t have a distended or enlarged liver…hello, why would we wait that long) but they think she’s critical enough to push up the heart catheterization while she’s still an inpatient to this week.  we heard great news tonight and it looks like she will be put in the schedule for wednesday.  this is a pretty serious procedure, complete with sedation and intubation and i’m not going to lie and not say i’m scared to death.  please continue to keep her (and us!) in your thoughts and prayers… as we need them. (four plane tickets to hawaii would also be great, thanks.) 

**amazing farrell four news alert** hellllo, so i called over to madeline’s hospital today and she is currently going through a 24 hour mist trial… people, this is freakin amazing.  that is a whole day without the vent… do you know what this means?  this means sunshine and rainbows!  no seriously, we have been waiting almost an entire year for this point since this tracheostomy adventure began.  i’m elated and nervous and hopeful.

she’s so amazing and strong and beautiful (and quite the ham)… don’t you think?