WEDNESDAY MORNING GRIPEFEST /  by Micaela

Perhaps day 2 of gloomy fogginess already had me in a funk, but I just lost it on the woman at our medical supply company, who has yet again sent us the wrong thing.

We have a fairly endless need for medical supplies and I am repeatedly amazed at how many orders are flubbed, how often we get the wrong type, size, style, etc of whatever it is we need. I have had consistently better service with diapers.com. If only they delivered feeding bags! Seriously, anyone reading this work there?

Last week we were supposed to get a small portable oxygen tank. This is only in the case of a dire emergency, where we could give Lula oxygen while on the way to the ER. Instead we got 4 huge tanks with a wheeling stand. Really? I can just imagine the scene - Sam wrestling with a 4 ft tall oxygen tank that's tethered to Lula while we try to race to the hospital!

We also seem to get everything in quantities of 200, even if we only need, say, 5. I have enough suction catheters to clean out the airways of everyone in Fort Greene through the next cold season.

It's bad enough that my poor kid is sick and endlessly having to be suctioned, poked, prodded etc, and that our living room, despite our best efforts looks like an ER. It really, really sucks that she has a plastic tube in her tummy to eat. And worst of all that none of this looks like it's going away anytime soon. But to be treated like you are just another schmuck in line at the DMV when you are trying to manage all of the equipment that is keeping your baby alive is just another indignant reminder of how unfair life is sometimes, in the smallest of ways.

YAAAWNN /  by Micaela

I just found this video from July when the babies were only a couple of weeks old. Good God he looks like a wee naked turtle.

SPRING SWING /  by Micaela

Finally, finally, a whiff of spring here in NYC.  We took the kids out to the back yard to enjoy it asap. Lula took it all in stride...

BOYS WILL BE BOYS /  by Micaela

Sam has had a fairly eventful few days.  First, he had the brilliant idea of asking our upstairs neighbor Claire, who is 8 years old, if she would be willing to cut his hair. Would she ever!! When she was finished she declared it a triumph and left Sam looking very much like a Bird of Paradise doing the ritual mating dance that we just saw on a David Attenborough special.

Witness:

Bird of Paradise

Oh my, what was I thinking?

I tried to do a little damage control but some of it is unsalvageable. Luckily, Sam is like a Chia Pet. His hair will be down to his shoulders by next week.

Then on Sunday after delivering a job in Chinatown Sam managed to get the car towed. Third times a charm! Turned out they towed it to the Brooklyn Navy Yards which was pretty convenient (considering how inconvenient it was to be towed in the first place). Sam thought Roan might like a manly municipal garage expedition so he took him along. I was secretly hoping that my little blue-eyed boy could sweet talk us out of paying to get the car out of the pokey.  No such luck.

If fact, it also turned out that our inspection had expired so we got a ticket for that too!  Which led to another male bonding experience of Roan and Sam going to get the car inspected. 


Fun times on Fulton Street!

Up next, Roan learns how to change a flat tire!

IT TAKES A VILLAGE /  by Micaela

I knew we would need lots of help with twins, but I never really pictured myself having a staff. I have always been a serious DIY kind of girl, indignant at any photographer who expected me to run personal errands for them or fetch them coffee.  Get your own damn soy latte!  I took for granted my ability to clean my own house, buy my own groceries, do my own laundry, pay my own bills, walk my own dog, etc.

Now, however, unless I can do something at night (while pumping - one errand I can definitely not farm out) on the computer - thank you FreshDirect, Diapers.com, etc - I find I have slowly outsourced my responsibilities to others.  Which is a good thing, because as it is we are hanging on by a thread around here.  I, who used to spend 4 hours in a Joan Crawford style frenzy cleaning the bathroom because I found it oddly relaxing, now simply cannot be arsed.

I tallied up the cast of characters we have coming and going around here and I really should start selling tickets cuz it's a circus.  By my account we have 12 people total coming and going every week.  2 Night nurses - Mistura and Perpetue, 3 therapists for Lula - Paul for PT, Loreto for OT, and Lisa for feeding, 4 sitters - Kia, Sacha, Cecelia and Jemma, our cleaning lady Ana (who Roan is utterly besotted with), and our dog walker Sharon. And then of course there is my mom. 

As insane as it is to manage the scheduling of everyone, aren't we a lucky lot to have such major reinforcements? How on earth does anyone raise kids without an army of crafty, caring, industrious people as support?

PERSONAL ASSISTANT /  by Micaela

We had no problem snatching the pacifier away from Roan a month or so ago when we saw his interest in it waning, but Lula is another story. The girl has had it rough.

So when one of her feeding therapists said we should wean her off of it (not good for speech, development, feeding, etc) we kind of ignored her, guiltily. Then we found out from one of her many doctors that studies have shown that sucking on a pacifier actually helps with dismotility (the reason for her G-tube). So the pacifier stays, for now.

Except it doesn't always stay put.

 So sometimes she gets a little help from her big hearted PA.

A WORD ON C-SECTIONS /  by Micaela

I have seen two things online recently about the experiences of having twins via C-section and it has given me the urge to add my two cents to the universe of opinion and judgement on this heavily opined and judged subject.

First, here they are:

and

(the post from March 3 called "What it's like to have a C section")

First of all let me tell you that birthing classes - at least extensive weeks long classes like the one we took - are a waste of time because they tell you all about the perfect pregnancy and delivery. They spent maybe an hour of a 16+ hour course on C-sections and mostly discussed how to avoid one. I knew I had a 50/50 chance of getting one so I was rather more interested in the deets but they were not forthcoming.

We watched one video in class of a woman taking a hike up the side of a stream and then eating rice and beans with her fetching sculptor husband while in labor.  She gave birth in her hottub and then her whole family climbed in with her!  I knew that wasn't going to be me with twins, but honestly? How is seeing perfection supposed to prepare us for anything less?

I now laugh at myself and how much I agonized over what was to be my "birth experience".  Would I have a tub in my room?  Should I have an exercise ball to bounce on during labor?  Would I be allowed to drink water? I was in labor for two days and still had an emergency C-section and I don't regret any of it.

That's because about 30 seconds after the delivery, while I was still filleted like a salmon and staring at the white glare of the ceiling and my first baby let out a scream, and then my second baby let out nothing and was rushed off to the NICU I realized how utterly insignificant my personal "birth experience" was.

Nobody, midwives or birth class teachers, prepares you for bad news.  They never EVER discussed what would happen if your baby had a deformity, syndrome, disease, seizure, or anything else that sends you down the rabbit hole to the NICU.  There you are with all of the other terrified and bewildered parents of the other invisible "birth experiences", trying to figure out "gee, how do I put 'something neurological' on the birth announcement"? I saw my daughter with IVs and tubes and monitors stuck everywhere and realized that everything that was artificial and unnatural was keeping her alive.

I think natural birth is wonderful and is in many cases the safest and best way. But it is a luxury. It's a luxury of health, a luxury of ideals and best possible outcomes.

Ultimately, your birth experience will last a couple of days at most.  Your parenting experience will last the rest of your life and will most definitely not be what you plan for, even if you don't encounter the medical nightmares we have been through.

So if you have a less than ideal birth experience but you have a healthy mom and baby thank your lucky stars and move on.

BREATHE EASY /  by Micaela

Just had an appointment with Lula's Pulmonologist (lung doctor) Dr. Fiorino, who was amazed at how well she is doing considering how sick she was 2 weeks ago.

She felt the same as we do, which is that while the pneumonia was a horrible and terrifying experience, the upside is that we now know what signs to look for and how better to handle it. She said to keep up our chest PT, nebulizer, suctioning trifecta because it seems to be working, and that we can resume feeding therapy.

All in all lots of good news.

GOTS MA HAIR DID /  by Micaela

I bought some barrettes for Lula (about 50 for $1 on Fulton Mall). I despise those cheesy beflowered infant headbands that desperately mark any bald baby as a girl, but Lula is really growing a head of hair and it's almost in her eyes. 

Anyhow I awoke this morning to find that our wonderful night nurse Mistura had had a little fun in the hair decorating department.




SPA TREATMENT /  by Micaela

Here's Lula getting her atrovent nebulizer, which basically helps to clear up the gunk in her lungs. We also like to think that the vapors do wonders for her skin.




A GOOD DAY /  by Micaela

Today was a good day. I got to sleep in (until 9am woo hoo!) We had a new night nurse last night named Perpetue (!) who seems to be both competent at her job and really sweet and good with Lula.

Lula had occupational therapy with Loreto, who is awesome. Our sitter Kia, who we love and is effortlessly good at everything with the kids, got Roan to take a 2 hour nap. Lula gnawed on a carrot and had a bit of sweet potato (not back to full on feeding therapy until she is 100% well). I did a bunch of chest PT on her and used the suction machine to Hoover a bunch of gunk out of her nose, which is both gross and extremely satisfying.

I put Roan in a ridiculous getup of 1970s overall bloomers and stripey shirt. I tried wearing Lula in the me tai carrier and she totally dug it which is great since the girl tends to hate all forms of transport except for my arms. We all went for a walk in which Lula only mildly freaked out every time there was a gust of wind.

Sam managed to get some work done in the studio and when he came back we skyped with Sam's mom and sister and then skyped with my sister. Sam stayed with Lula for another tube feeding and Roan and I went to the park and swung on the swings and slid down the slide. Lula crashed and has been sleeping for hours and Roan has just fallen asleep and its only 7:15.

All in all everything went perfectly, the schedule was kept, the medicines were administered, the breast milk was pumped, the poops were changed, there were absolutely no meltdowns, panics, major vomits, minor fevers, or anything else.

And yet even on this easiest of days I only managed to leave the house for about an hour in total, and I just realized that I never brushed my teeth.

FILM FORUM /  by Micaela

My usual taste in movies runs to the serious and depressing, but when I am down to my very last nerve of sanity after a full day of twins, or a full week in the ICU with a pneumonic baby, I need something light and escapist.
However, I hate, hate, hate crappy movies, so I have compiled a list of movies that are perfect for forgetting that, say, your daughter has a mysterious genetic syndrome if only for 90 minutes or so, without rotting your brain.

Keep these in mind for your next personal crisis:

The Odd Couple  - I actually watched this in the ICU at Cornell and it is perfect, literally the perfect comedy
Kung Fu Hustle - Crouching Tiger meets Wyle E. Coyote
Withnail and I - Very, very British cult classic with a hilariously drunk Richard E. Grant
Little Miss Sunshine - Alan Arkin as a hysterically inappropriate Grandpa 
Sleeper - Woody Allen's absurd futuristic comedy where he runs around with a giant stalk of celery
SOB - Blake Edwards orgy filled ode to 1980's Hollywood excesses
The Big Lebowski - Coen brothers, bowling, and The Dude
Dirth Rotten Scoundrels - Plot is a bit cheesy but it's worth seeing just for Ruprecht
Joan Rivers: A Piece of Work - She is really something
The Producers (not the musical) - Zero Mostel and his little old ladies
Best in Show - Dog shows are so far removed from my real life (our dog is lucky if she gets a walk)

Movies to Avoid

Terms of Endearment
Lorenzo's Oil
The Sweet Hereafter
Anything where anyone gets sick or dies

LULA'S LASHES /  by Micaela

Zuzu had her petals, and Lula has her lashes.

I have been trying for months to take a photo that adequately captures how obscenely long and dark Lula's eyelashes are, and I may have finally done it (click on the photo to enlarge).

SAMS TATTOOS /  by Micaela

After 35 years of virgin skin, Sam finally got a tattoo. Two, in fact, and surprised us all by arriving home one day with his new ink.  They are on the insides of his arms, right where he holds the babies. Roan on the right, Lula on the left.

QUEENS, BOROUGH OF DREAMS /  by Micaela

We took Lula to St. Mary's Hospital for Children, which is waaayyy the hell up in Queens, for a consultation for their feeding program. The program is 2 months of intensive feeding therapy 5 days a week from 8am-2pm.  It went great and she is now on the waiting list, which is so long she won't even get to the top until the end of the fall. 

Her problem isn't really eating per se, it's her digestive system, which processes food very, very slowly.  They are hoping that as she gets bigger and stronger she will outgrow the dismotility and low muscle tone and this will allow her to eat more and more by mouth.

She may not even need the program by then but if she does she will have a place there.  This is great, except it's so far away we may all have to move to Queens!