micropreemie mommy

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!

ooh, fun news! it is reported that we are going to be the front page story in the boston globe  tomorrow. neato!  stay tuned!

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.

yes, indeed… under the three feet of water that fell from the sky this week in massachusetts, spring has sprung.  the forsythia is finally blooming and my crocuses (croci?) are so purple, they’d knock your socks off…

(don’t get too happy… molly’s not off oxygen… she just refuses to keep it on… she thinks it ’s the best game *ever*)

how can something be the earliest out of the ground and be so beautiful?  we have a nice weekend planned… being a holiday and all, we are somehow guilted into the “my parents/his parents” shuffle… with visits to the hospital as usual also.  it’s insane, really, but it’s supposed to be 75 degrees and sunny, so i’m not complaining.  i bought the girls the most adorable easter dresses from carters and plan on torturing them by making them sit still for 2.2 seconds to take a picture.  i’m just so looking forward to having the whole family outside again, sitting on our blanket and swinging on the swings. 

there’s a renewed sense of optimism that comes with spring.  i’ve actually been undergoing a little bit of a renewal this spring myself, thanks to my awesome friend kristen who nominated me for a makeover (yeah, i’m to that point… i’ll admit it.  i’m a hot momma mess (and not hot as in hot-hot… hot as in ‘damn what happened to you?’ hot)… and i won!  this week i went to get my hair did… and tomorrow i go back for more hair and makeup and a professional photographer.  no joke!  if you live in the boston area, keldara is an amazing place!  first, it’s huge.  i got lost going to the bathroom.  everyone is super friendly, and best of all, my hair looks like a million bucks.  it’s totally what i needed and i can’t wait to look all fancy tomorrow.  maybe i’ll have to go out on a night on the town!

i must admit i’m most excited about having the girls together though.  what a difference a year makes.  here are the girls in their preemie dresses last easter (their actual due date):

they were about 4 pounds each here…that’s molly on the left and madeline (with her usual, ‘what the heck are you doing?’ face… it starts early i guess)

this spring means we’re getting that much closer to getting madeline home with us.  i’m ecstatic.

well, here’s wishing you and yours a happy weekend, no matter what you celebrate!

hippity hop!

people keep telling me how hard we’ve got it here over at the farrell four lately.  we must be spent, we must be exhausted…

sometimes i start to think i’m believing them…

and then i found this…

i was poking from blog to blog last night after a hard day and started reading a post or two.  an hour later i found myself sitting and sobbing… sweet jane’s story could have been my baby madeline’s… it was all so familiar, down to dr. boston (a double woot woot for that amazing guy)

and so i rocked my sweet madeline to sleep this evening for three hours… i can’t imagine a better way to spend a friday night (well, perhaps when we’re all home)

it could have been us… my blessings are becoming a bit frayed around the edges, but i continue to count and re-count…

so… i know many bloggers comment on how they feel the need to make their writings profound, make a statement, tell some sort of fantastical anectode… or whatever.  well, i said, h-e-double hockey sticks… no one would believe my darn crazy life if i told them anyhow, so i’m just going to let you in on what’s been going on in our little family unit. 

as i mentioned in our previous post, we had a little event with our molly last wednesday night.  it was alarming (although, frankly, the girls toot and i become alarmed at this point… it’s like 100% super-stress-mom-mode running full tilt for 14 months exactly today). 

thursday morning started out ok, with darling auntie k (my sis) watching ms. molly and getting the finest dose of birth control money can’t buy (gigantic poopy diaper versus inexperienced diaper changer anyone?) and as i was working upstairs (yep, did i mention i still work full time?  i’m the definition of insanity, i know) my sister mentioned she just thought molly was being ’serious.’  now, maybe for some kiddos that’s normal, but for our molly?  never… the girl stares at the kitchen faucet, waves and gives it a big smile, so for her not to be yukkin’ it up is a pretty big deal.  She was still on the 1.5L of flow (for those reading for the first time, our Molly is on 24 hour oxygen flow (typically 1/8 (as in *point* 1-2-5) with a saturation of 96-97%).  As she settled in for her five minute morning nap (no lie) I hooked her up to the monitor and there it was again… 88%, 87%, 89%.  argh.  as she has pulmonary hypertension her sats should remain above 95% (it’s a little much for me to explain right now (you can skip to the bottom if you must to read why) so you’ll have to look it up).

i gave a call to our pulmonogist (and by ‘i’ i mean my darling husband as he’s the get-er-done officianado… that and i knew what he was going to say) and he, god love the guy, was on *vacation* (the doc, not the husband)… figures.  i was glad he was taking some much-needed time with his own family, but how convenient that molly should get all funky when he’s away.  we then call her cardiologist as they’re sort of “next in line” when it comes to all of molly’s issues… they weren’t pleased with what was going on and said she should most likely be brought in for some monitoring but that she would need to be admitted for that… and they can’t do that.  awesome.

they call back.  they’ve devised a fancy plan.  we are to see a colleague of our pulmonologist in their clinic and as they can ‘direct admit’ (meaning no ER… yay!) we should be on our way to recovery post haste.  … and there my friends is where my story…

*begins*

so… as they’re telling us this over the phone, mind you, i am running around the house like a crazed chicken, with my poor sister as my minion (i think she may never ever come back to visit).  i hastily throw a bag of things together and we rush in to boston, which is about 11 miles as the crow flies… but it’s boston… so it’s like 45 minutes… on a good day… in the snow.  they call us at ten of two… they ask us to be there by 2:30… we run up to the clinic and they seat us in a room right away.  sweet.  i can see things will be moving right along, i think (oh silly mommy)… as we’re sitting there i hear an unfamiliar voice in the hallway.  that must be our pulmonologist’s counterpart.  great.  then i hear him say, ‘ugh, i have to take care of this *thing* for {insert *our* doctor’s name here} and then i have my conference call… so i won’t be in there long.’  hindsight is 20/20, but boy does that sound dismissive in retrospect.

he rushes in… he checks his watch,,, he checks it again… he says something about his daughter having an italian shoe obsession… something about never letting your daughter go into a store ending in a vowel… is this guy serious?  i dropped my work (that *pays* me and frankly, pays him (hello health insurance)), i give at least three people the finger on the expressway to listen to him toot his own horn about italian leather and his lecture circuit?

he checks out my daughter, he listens to her lungs, he checks her ears… and then he says, ‘well… i don’t think she’s much different from her baseline… and she doesn’t *need* to be in the hospital. here, take my card.  i’m available anytime, except, of course when i’m lecturing.’ enough already you arsehat.  i take his card, which i’m about to ram down his throat and i sit there in disbelief wondering what to do next.  my mommy instinct is on full alert and something is *not right.*

i call the cardio team again and they are annoyed and disappointed.  they tell me that as much as they disagree, they have to stand united with another colleague’s decision (maybe b/c the other dolt was the associate chief of the dept… or maybe he’s on the committee who determines raises, i dunno)

i am now so livid there are tears in my eyes, teeth are being ground… how can someone who has never seen my daughter tell me she doesn’t look any different (when she is *12* times above her normal oxygen requirement)  call me silly, but it seems pretty darn plain as day to me that she should at least be monitored.  something is not right.

i decide to go down to the emergency department.  it won’t be swift, but our story will be listened to.  the wait was beautifully non-existent and we are in a room in about 15 minutes.  our molly had blood drawn, vitals taken and oxygen pushed up to 4L.  The attending physician there was wonderful… her first question was, “what, they didn’t get a chest x-ray?”  hallelujah.  we have a winner.  she listens, she empathizes, she makes it happen.  she quickly tells us that we did the right thing by coming to the er and we are to be admitted.

to be continued…

it’s amazing to think about.  breathe in, breathe out.  breathe in, breathe out.  betch’ya don’t even really think about it much.  i try once a day to focus on my breathing as i’ve always found it relaxing.  it’s turning out to be a panicky feeling however when dealing with the girls’ breathing…

for obvious reasons, ms. madeline’s breathing is the source of the makings of an anxiety attack.  as i’ve mentioned before, she was given a tracheostomy in july of 2009 after months of being intubated, then extubated again, then re-intubated… five times over… the trach, while a pretty scary thing, is actually much more fair to madeline (and us as watching your baby be paralyzed time and time again to keep her still is beyond ridiculous) and is more developmentally appropriate.  she is able to be awake and move around and has become quite crafty at gnawing, lifting, pulling and twisting her vent tubes… she particularly enjoys pulling the whole darn thing off… that really gets mom’s panic-juices flowing.  those alarms would drive anyone batty (and i’m sure it’s going to be interesting for her once she’s off the vent and at home in relative quiet)

molly’s breathing… since her arrival at home on may 15th, i have watched her breathe… i have listened to her breathe.  i have felt her breathe.  i count her breaths and then i count them again.  i adjust her cannula, i attach her cannula… she detaches her cannula, waves it in defiance and giggles… i reattach cannula… repeat… repeat again…  per her pulmonologist we are to count her breaths per minute each day and make sure they’re within a certain range (and i’m not going to throw any number out there and make other micropreemie mommies concerned with what their rate is… each kid is different with varying degrees of CLD/BPD and weight, etc.).  it’s tough.

i’m sure parents of “normal” kids have watched their baby breathe… but you have no idea.  it scares me when she flares her nostrils or retracts just under her neck… or retracts under her rib cage.  it means she’s working too hard and often it’s only when she plays with blocks or baby dolls.  is it her lungs?  is it her heart?  is she sick?  how am i going to feel when she’s pirouetting in ballet or running the field in soccer?  i need to live in the moment and not think too far ahead.  i’ve always been a planner, but man, it’s making my head feel like it’s going to explode.

so tonight i fed her the usual dinner of squashed and mashed bits mixed with cheese and other things… (she really seems to like the baby yogurt best) and as we were eating dinner, i decided to indulge her in something that the *GI PEOPLE SAID WOULD BE OK*… argh… i should listen to my mommy instincts… i gave the teeniest bit of vanilla ice cream…

let’s just say the aftermath involved a tubby, a special laundry, a shower, and a highchair now rinsed off and drying in the tub… yup, gross.  after that, she fell asleep, but her breathing was labored, looking pale, little heart beating a million miles a minute.  i immediately put the pulse ox on… 87, 86, 85… oh man, not good.  i gave her an extra two puffs of combivent and we’ve gone to 1 liter from 1/8 liter.  It’s a big jump, but she’s now peacefully asleep, at 96, 97 percent and heart rate down and comfy… we’ve had an aspiration pneumonia before and it makes me worried.  let’s hope and pray she recovers from this little blip.

sigh… and be happy you can…

being part of the nicu“family” means riding the craziest rollercoaster of your life.  one of our favorite doctors referred to it as the “nicu walk,” although i’d liken it to the nicu shuffle as some days it seems we’re taking one step back instead of two steps forward.  even 421 days since the day of the girls’ birth, we just can’t let our guard down, can’t breathe those anticipated sighs of relief just yet.

we had a pretty big follow-up appointment for molly at the end of last week.  pulmonology and cardiology were on the docket and in the back of my mind, i was hoping to leave childrens hospital for the first time without tagging along an oxygen tank for my little girl.  it wasn’t to be though.  both specialists are somewhat concerned with molly’s growth (she just hit 15lbs and is 14 months actual (10 1/2 months corrected)).  the cardiologist, the amazing dr. mullen, seemed the most concerned.

both girls were born with extremely premature lungs and as a result of being on the ventilator, sustained damage.  They now have what is considered chronic lung disease and bronchopulmonary dysplasia.  because of those issues with their lungs, it has exposed them to pulmonary hypertension.  they also were born with atrial septal defects, which surprisingly is pretty common.  the cardiologist says they often hear of pregnant women complaining of being tired… an echo later and it’s discovered that they have as undiagnosed asd that never closed.  (i *don’t* have an asd, thank goodness)

our madeline was about 6 days from coming home back in may of 2009 when she had an “episode” from the pulmonary hypertension.  the pressures reached a critical point in an emergency fashion and that’s how we ended up at the childrens hospital boston nicu for just aboout four months, complete with intubations, extubations, re-intubations, nitric oxide, cardiac catheterization, tracheostomy, g-j tube, echos and sildenafil.  months later, although madeline is still vented and trached, she has thrived on all of the treatments (a whopping 22.2 pounds as of this weekend) and is rosy, smily, chubby and all-around healthy (other than the trach and g-j tube, which, to be perfectly honest, i don’t even notice any more). 

molly is our peanut.  she has to work hard on her own for every breath, every heartbeat, every movement (and there’s a lot of that lately) and every morsel.  she’s always been a bit smaller than madeline but it is becoming markedly different.  after her pneumonia in november we decided to have a g-tube implanted so that we could (1) give her the various medications she requires without her tasting them and (2) and more importantly, give her even more food (as she sometimes is pretty darn finicky).  we were hoping the pressure would be off, offering her the bottle and putting the remaining ounces over the pump while she played and/or napped.  but she still wasn’t gaining a lot of “catch-up growth.” 

we see a feeding specialist and a nutritionist on a regular basis… and now i’m making all of her baby food, giving her higher caloric density organic choices… and then adding cream cheese, butter, cheese, polycose… or all of the above.  so basically as i munch on my weight watchers snack, i’m busy shoving cheese and butter into the blender.  ironic isn’t it?

anyhow, long story short is that our dear molly is having a bit of a hard time.  while outward signs show she’s active and giggly and the cutest molly *ever,* she’s often pale, breathing is labored, heart is beating faster than i would like… the doctor and her team recommended a cardiac catheterization for molly so they can determine exactly what is going on.  they hope to discover whether it is the asd (as they are notorious for causing failure to thrive) or the pulmonary hypertension.  they will most likely want to treat it with medicine, in particular sildenafil.  i’ll let you look up what they’re calling it on the market these days on your own.  let’s just say it’s very interesting when someone asks you what medications your infant daughters are on and you say the market name… ha!

the cardiac catheterization was the procedure that madeline had that caused her to be reliant on the ventilator and they were unable to extubate her.  granted she was much sicker than molly will ever be, but we, as parents, are terrified.  she will most likely be scheduled for this procedure within the next couple of weeks, so please include us in your prayers and thoughts and we surely need them.

this roller coaster has certainly been an interesting trip, but boy do i ever want to get off.