micropreemie mommy

fingers crossed here.  we’re getting ready to check out of this joint today after a visit from madeline’s otolaryngologist warranted the statement from him, ‘madeline’s not just a star… she’s a nebula.’  damn straight!

the paperwork upon leaving this place is seriously cumbersome and honestly ridiculous.  considering we’re going home with *less* stuff than we came with you’d think it would be straightforward… but apparently, no.  thank goodness for two public television stations playing some sesame street back-to-back. 

so my little m went to sleep right on time last night after a day of *no* naps… and my awesome friend kristen came to take me out of this place for a little bit for dinner.  i realized i hadn’t left the building in 3 days… sheesh.  anyhow, when i came back, i took a look at madeline and realized that the darling wasn’t wearing any oxygen!  i look to see where it is in the bed and then see it’s all wrapped up on the wall.  clearly she didn’t do that.  i go to find the nurse and she said that while i was at dinner her o2 came off and her sats were totally fine… so no more oxygen for madeline for now!  it feels totally bizarre as i’ve never had a kid not on oxygen.  is that totally weird?  i’m amazed, but must admit i did not sleep at all last night looking at the monitor. 

the whole sleeping on a 1 inch thick cushion that’s next to a window on the 10th floor doesn’t help either.

anyhow, just waiting to break out.  here’s a last look from her jail cell before the big break!

can’t wait to get home and see molly!

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!

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. 

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? 

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…

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)