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!

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 home and ms. molly is doing great.  she kind of looked around once we got into the house and looked at me and then gave me this big smile.  it made me happy but also sort of broke my heart.  i certainly hope we stay out of the hospital for a long time now… her heart catheterization went as well as it could… after the procedure, you would have had *no* idea that she had just been sedated and intubated.  when we went into the recovery room, there she was peering through the bars of the crib, munching on her cannula.  hello?  what are you doing?  then they told us she needed to lie “still and flat” (neither words are in her vocabulary) for a couple of hours… well *that* didn’t work.  pete climbed into the crib with her to try to get her to chill out, but then she took to trying to munch on his fleece snaps and zipper.  can you tell the girl is teething?  she now has just about three teeth on the bottom and almost four on top!  her and madeline are starting to look even more like each other.  i love it!

so, it looks like molly is going to be on oxygen long-term.  no big deal, we say.  that’s something *we* can handle.  we’re used to it (i mean, the big rocket launcher-looking tanks and twisting tubes and having to pick up two other bags (one backpack for the feeding pump and the o2 tank) when we pick her up is just sort of the way it is).  when i pick up my nephew and he’s sort of just free from all wires and tubes it’s kind of weird.  i know… but i have to say… i had better not hear anyone complain to me about their full-term baby (or babies for that matter)… you have no idea who you’re dealing with

growth and oxygen are molly’s friend as well as a course of sildenafil.  we started it last night and while we don’t see an immediate effect, we’re hopeful it will be helpful long-term.  that’s given three times a day, so between that and her medications given twice a day, and then one given four times a day and one given every other day… well, i’m organized, but it’s enough to drive someone batty!  i need to sit down and just make a schedule, but i didn’t get around to it today.  (and friends, you know me… i want to make it all pretty and creative-like with my 400 colors of sharpies so i need a day or two to get my act together…)

madeline is superwoman.  the girl has been off the vent since sunday (i still can’t believe it) and all of her tests are coming back awesome (meaning her blood gases, etc.)  we couldn’t be more excited and i cannot wait to have her home.

we got approved for some nursing hours for molly for the next couple of months, but the place is having a hard time filling the weekends… if any of you favorite former nicu people are reading this, please pass the word along (or get in touch if your interested).  i am so thankful we’ve been given this opportunity to get the house in army-tight medical fashion before madeline comes home and to help with everything molly has going on. 

i may be strong, but even strong people need a break.

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?

see the number above?  that’s the number of days madeline has been in the hospital… no joke.  i wish it were.  people have been saying to me constantly, ‘oh… how *do* you do it?’ ummm, i don’t know.  i wish i did.  i could probably make a lot of money if i could figure out how to channel some of this nervous energy toward powering cities or towns or something.  i’ve literally been running on adrenaline for four hundred and seventy four sleeps (because the five days before the girls were born weren’t a picnic either) and i think it may be starting to wear on me.  i can’t tell if it’s because madeline has been *not here* for so long, or because it’s closer to her coming home and it’s finally hitting me, or the fact that molly seems to be doing worse.  i don’t know, but i’m trying really hard to save up some good energy for when madeline comes home… and my reserve tank is being taken from each day.  it’s so frustrating.

ms. molly spent a total of four days out of seven at childrens hospital last week.  one for a regular doctor’s appointment, one for an emergency room visit, one for *another* emergency room visit (which was supposed to be a direct admit, but i digress) and another as an inpatient.  we’ve (and i say we because when she does it, i want to too) developed some pretty severe wretching/vomiting over the past week or so and it’s very concerning to me… something’s just not right.  we started the continuous j-tube feedings last month in preparation for the upcoming heart catheterization, largely because of molly’s reflux… we didn’t want to risk an aspiration pneumonia (and subsequent hospitalization) and now here we are battling possible aspiration anyways.  i’ve been told that it’s “rare” by the docs… leave it to us to be “rare” once again.  i know we’re special and all, but c’mooonnnnnnn! 

so, as the day tallies go up and up, i can’t help but think about what these past months could have been like/should have been like.  i know we’re a rare case when it comes to having a baby not be home for so long… and i think i’m just as glad to know that we’re one of the few families out there being put through so much pain.

oh… c’mon… i’ll give you one hint where molly is right now… go on, guess… it ain’t the circus or the library or the farm stand… it begins with “ch” and ends in “ildrens hospital emergency room…” no kidding…

we’ve actually had a pretty fantastic week over here at the farrell four, except, you know, the whole possible intussception thing (and seriously? i know wiki isn’t my goto reference, but i hope to goodness sake the person who wrote that made up the fifteenth word of the explanation (gag)).  my darling husband and his mom (i love our family!) went to the er with her this evening while i try to finish up some work deadlines.  my mind is of course with them… but our health insurance is with my paycheck… and life goes ’round and ’round.

ms. molly has been feeding fantastically via j-tube and she even passed the (smack) gi appointment (smack) on wednesday (smack) with flying (smack) colors… of course, our gi docs are asking me why molly isn’t feeding by mouth and i’m like, ‘hello? don’t you doctors talk to each other?’ (those smacks are me hitting my head against a brick wall)…

someone today referenced state agencies as being all different pockets of the same pair of pants…

being a parent of former preemies (or any medically challenged kids for that matter) is like being the crotch of a pair of very itchy, ill-fitting pants with all of the doctors in *zippered* pockets. none of them will care to come out of their pockets to talk to one another and they all think their pocket is better than everyone else’s (i’m generalizing here as we do have some great docs, but honestly)… it’s extremely frustrating.

i’m only glad i can take these preemie pants off in a couple of years and god willing, bid them adieu