micropreemie mommy

c’mon, it’s really the end of august?  it certainly hasn’t felt like it, that’s for sure.  we got about six inches of rain here over he past four days or so, which is ridiculous.  i mean, we needed rain, but a little too late big man above!

it’s not like we’re a super-mobile family and head outdoors for adventure a ton yet… after all, we’re a bit limited by medical limitations at this point. but when you’re feeling like your forced inside and don’t have the options to take the girls for a walk to see the horses or chickens before work?  well, that just makes me feel insane and claustrophobic… and gave me a bit of a peek into our rsv season (known by more “normal” people as w-i-n-t-e-r)…  i’m not sure how much elmo’s world a child should watch, but i’m pretty sure the girls are at maximum capacity this week.

molly finally ventured out away from the sofa and took her first real steps across the room this week.  it’s almost surreal… we have been blessed in some strange, odd way to have a full 19 months or so of babyhood.  to start to have the issues that a typical mom has is oddly strange for me.  i do know that our ms. molly has a little twinkle in her eye, especially when doing something she knows she shouldn’t and then looking back at me with this little smile.  once she figures out what those little legs can do, god’s big weight loss plan should kick into action.  i will officially never sit down again!

we headed to childrens this afternoon for madeline’s pre-op appointment today… in the worst. rain. ever.  i hate driving. i hate rain, i hate highways… and i’m really bad at driving in the rain on a highway.  45 minutes late for our appointment and i’m still confounded how childrens’ entrance can be such a nightmare.  it’s crazy there.

she’ll undergo a full bronchoscopy and laryngoscopy under sedation and then will head to the icu.  depending on the outcome of those scopes, she *may* be a candidate for decannulation!  personally, i’m not getting my hopes up… i’m almost a bit nervous about the whole thing and how she’ll be.  it’s almost like the day i brought her home.  people were like,’ oh, you must be so relieved’ when i was actually terrified.  i do know that my darling husband is wondering why i’m going to want to be at the hospital with her all day every day… i’m saying it’s for her… but i think it may be for me.  i just couldn’t stand to leave her there, especially after i feel like i just got her home.

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. 

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? 

we are having a terrific week over here at the farrells… nothing in particular, but no news is good news!  madeline continues to win hearts and kick butt.  we have a big team/family meeting tomorrow to discuss possible discharge dates for june, so keep your fingers crossed, your minds praying… and get your instrument tuned up for the coming-home parade. 

molly is starting to look more and more like her sister and getting bigger by the day.  we are still continuing her constant j-tube feedings and the results are becoming, um, noticeable (she takes after her mama, what can i say?)  the oxygen, the growth and the medication are what’s going to get her over this hump and of preemie-hood… and we are determined to do whatever we can to help make that happen.  (although i must say if she wakes up one more time with her cannula as a headband and her feeding tube in her mouth i may scream… kids will be kids!) 

i went to stride rite the other day to get her first pair of walking shoes… i still can’t believe she’s old enough to walk, but she’s letting us know otherwise and someone told me where to find the cute little shoes like i used to have as a kid… somehow i don’t think my parents paid $40 for mine though… i figure at $20 a shoe and about 3 months worth of wear before she grows out of them, that’s about $0.21 a day… per shoe.  start walking girrrrl.

we are approaching the six week mark until our ‘march for babies’ walk, which is held 6/27 down at the cape cod canal.  if you’re considering walking or making a donation, now would be an awesome time to do so… i’m not competitive or anything, but we’re in third place for fundraising…

here’s the email that was sent:

“Hello Cape Cod Canal MFB Team Captains!
The other 4 spring walks have already happened between Springfield and Boston, and I am excited to keep the momentum high as we look toward the Cape Cod Canal March for Babies!  Your event is about 6 weeks away, and now is the perfect time to start your fundraising if you haven’t done so yet.  J  From this point on, I’m going to be sending out bi-weekly updates for the Cape Cod Family Team Captains, which will include a list of the Top 5* Family Teams for the Cape Cod Canal MFB! 

Congrats to this week’s Top 5:

1)      Team Moore                                      $2135.50

2)      Picard Family                                     $919

3)      The Farrell Peanuts                        $705

4)      Team Saza                                           $680

5)      Madilyn’s Family & Friends        $610

As always, don’t hesitate to contact me directly with questions, etc.  Have a great day, and HAPPY FUNDRAISING!!!!!

Alison Graham

Family Team Specialist”

woohoo!  we are amazed at everyone’s generosity so far and continue to be so thankful for the support that everyone around us has provided us.  truly amazing.

on a lighter (and very fancy note)… my darling husband told me that we’re going out on thursday night and that i have to dress up.  do you know how exciting that it is?  does this mean i have to take off the old navy yoga pants?  does anyone know where i’m going? (he said it was a surprise)

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

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!