micropreemie mommy

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.

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? 

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

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…

a mother’s intuition… well, it’s more of a parent’s intuition i would say.  after a harrowing couple of days with our ms. molly, things came to a boiling point last night.  i found my husband in her room last night as i went to bed, sitting in her rocking chair and just staring at her.

she had a couple of those wretching/vomiting episodes yesterday that left her sweaty with her little heart pounding… she’d lay down for a minute on her side with her thumb in her mouth, but then pop up as if nothing were wrong.  so strange, right?

by last night, i could see her work-of-breathing was creeping up… i could see her chest rise and fall, the little space under her neck sucking in and out… as she lay down last night, i counted her breaths per minute… 82, 75, 80… her normal rate is high to begin with (in the low 50s) but nothing like this.  we used the rescue inhaler (combivent) and settled in for a long evening.  after much hemming and hawing, we were at 2 liters of oxygen (versus a normal 1/8L) and a girl who was asleep, but sounding like she were running a race.  we called the doctor at 11:30p and he got right back to us (b/c he’s up for sainthood… seriously) he suggested switching over to pedialyte on her feeds (instead of pediasure) two more puffs of combivent and we tucked her in… breaths per minute were 65, 60, 68… not too bad… she was saturating at about 97% on 2 liters so we left as is and went to bed.

this morning i checked in with the doctor… he’s none too pleased that things like this keep happening and feels there is an underlying cause.  long story short: molly’s catheterization is being pushed up to the early part of next week, if not tomorrow.  to compound things, her pulmonary hypertension doctor is out of town (figures), but they assure us that the team knows what they’re doing.  we have total faith.

*so* back into childrens we went today.  the doctor was able to have us direct admitted (hallelujah… after last week’s episodes, i can’t stand the ed anymore) and it looks like she’ll be monitored until such time as we can get her heart tested for real.  we don’t know if it’s increased pulmonary hypertension, the asd(s), the possible blebs (yes, it’s a word) or something more serious.  the doctor has said that she should be getting better as time goes on and she appears to be getting worse and i certainly hope we’ll find an answer… because like i said yesterday… this mommy needs some good news.

on the madeline front, all is well however (and that is *great* news).  she’s up to 16 hours of mist and has been attending play group and getting pet therapy on a constant basis.  apparently she’s been quite the ham the past couple of days and i’m wanting her home so bad i could spit.  how could the child with the trach (and is in the hospital) be the one i’m least concerned about… seriously?  it’s all a cruel joke.

buuuutttt, i continue to have faith that all will work out in the end and am constantly thinking and praying for a positive and happy resolution in the not so distant future.  won’t you join me?

congrats to trish!

 **a big, huge thank you to all who participated and an even bigger thank you to flowerspot.com!

*****************************************************************************************************************************

it’s a giveaway!  a little different from most posts as of late, but a giveaway nonetheless.  i’m so thankful for the support i’ve been given over the past 16 months or so being a new mom (in not the easiest circumstances) and now i have the opportunity to pay it forward to another mom!  flowerspot.com has been kind enough to offer one winner a $50 gift card, just in time for mother’s day!  if you have a mom (and i know you do!) then this is perfect… or if you *are* a mom, then gift yourself… i must admit i did.  as part of this project i selected the ‘fancy flight’ bouquet and i was pretty darn excited to receive flowers (even if i did order them for myself… hey a girl’s gotta do what she’s gotta do!)  it is even more beautiful than the website said, with extra butterflies (which my girls love!) and just full of great colors (and the picture will be up just as soon as i can get my memory card dislodged from my camera… have i mentioned how much i love technology?)  trust me it’s even better than this picture!

alrighty, so here’s the entry part… follow along.  i’m getting the hang of this.

what’s the prize? 

flower arrangement (value up to $50) from flowerspot.com.  the one i chose wasn’t even $50, so just think of what you could get… i’m personally impressed with the prices (versus some of the other bigger companies out there)

 rules:

1. contest starts today, saturday, april 17, 2010 at 11 est and ends on wednesday, april 21st 2010 at 11 est.
2. contest is open to u.s. residents only unless otherwise specified.
3. winner will be given 48 hours to reply with a mailing address and then another winner will be chosen.
4. winner will be chosen via random.org’s random integer function

how on earth do i enter?

well, there’s one sure fire way to enter and then a whole bunch of bonus ways.  take a looksy:

mandatory entry: go to the  flowerspot.com mother’s day site and choose the bouquet you like the best.  (if you win you’ll be able to choose whichever bouquet you want up to $50 but you can tell me which one you like here regardless of the price). 

bonus entries:

1. 5 extra entries will be awarded for subscribing to micropreemie mommy via blogfrog

2. 5 extra entries will be awarded for subsribing to micropreemie mommy via networked blogs or google friend connect.

2. 5 extra entries will be awarded for posting about this contest on your blog.  please leave a comment with the link to the exact url of your post. 

3. 1 entry will be awarded for following me on twitter @alfmom22 . if you already follow me, leave your twitter name in the comments and i’ll follow you back!

4. 2 entries will be awarded for for following flowerspotweets on Twitter. 

5. 1 entry each for tweeting about this contest with @alfmom22, @flowerspotweets and the link to this contest in your tweet. You can do this a maximum of 5 times a day. 

make sure and come back and leave me a comment for each extra entry you do so i can keep track.

fine print: micropreemie mommy did receive a gift of the fancy flight flowers as part of this contest.  it is the responsibility of flowerspot.com to ultimately deliver said prize, but contact me in the event you win and don’t receive within a couple of weeks.  you must be 18 to enter, a u.s. resident and follow giveaway rules for your area.

thanks so much everyone for your support and i look forward to getting a winner and putting a smile on a mom’s face!