BRUSHA BRUSHA BRUSHA /  by Micaela

Thanks to the suggestion of one feeding therapist, we have a nightly teeth brushing ritual that consists of all four of us squeezing into our teensy bathroom and brushing Roan and Lula's teeth while singing "Twinkle Twinkle Little Star".

To this Roan has recently added sweeping.

Lula's interest in brushing improved with the added bribery of fruity toothpaste

Current obsession: brushes

COSTCO /  by Micaela

I am sick of being in charge of inventory, so I have set up a wonderfully simple system around here, which is a chalk board in the kitchen. To wit; when we are running low on something, say size 4 diapers, all one has to do is write size 4 diapers on the board and then I know to order them.
Built by Sam (there's a spice cabinet behind the chalk board).  Who doesn't want the word "suppositories" written on their kitchen cabinet??

It's amazing how often my simple system fails and ends with me cranky because I discover that there are no more paper towels while trying to sop up a pile of vomit.  Even my mother, who suffers from a bizarre form of OCD that requires that we have no fewer than 8 rolls of toilet paper in the house at any given time constantly forgets to write on the board.  So my new system is this: I will live the American dream and buy vast quantities of everything in bulk.  Clearly, the American dream requires a basement, which luckily we have.

My friends Jason and Cecelia have a Costco membership and were fortuitously planning a mission themselves so off we went with Roan in tow.  (NB: one of the many things I love about Jason and Cecelia; extreme shopping habits.  They buy everything from either the Park Slope Food Coop or Costco.)

Westward Ho the Wagons!

We grabbed a shopping cart the size of a front end loader and headed for paper products.  For those of you who have never been, Costco is the size of an airport in a medium sized city.  They sell nearly everything.  Everything you say?  Why yes:

Nothing says "romance" like an engagement ring from Costco!

We are averaging 1-2 rolls of paper towels a day and about 20 reusable burp cloths so I bought a case each of paper towels, toilet paper, kleenex, and 36 ultra absorbent automotive cloths. Add to that a 186 ounce bottle of laundry detergent, a case of 200 trash bags and, for Sam and I, 360 Advil.

I made a classic rookie mistake and loaded up on all the cleaning products (ie heavy liquids) early and I could barely move the cart before we got to the second floor.  The second floor is food, and I was a little too overwhelmed by the sheer quantities of pasta and cereal so we ate free samples (Roan had his first ever Oreo), grabbed a 1 gallon jug of olive oil, a 56 ounce bag of Hershey's Kisses for my mom, and an impulse buy of 8 cans of baked beans, and tried to keep Roan entertained.


He was mostly mesmerized, but started getting ants in his pants after an hour or so.  By the end Jason had to push the cart for me which was clearly a sign that I had enough stuff.


I am psyched with my purchases, and giddy at the thought that I will not have to worry about running out of things to keep us washed, scrubbed, cleaned, and vomit free for quite some time.

NIGHT NURSE TAKE TWO /  by Micaela

For those of you wondering if we were able to recover from our calamitous night nurse the other night the answer is : yes.

I called the nursing agency and gave them hell the next day and they sent us one of their all-stars. The owner of the agency promised me that she would be awesome and she was.

Unfortunately my repeated good and bad experiences with nurses has made me increasingly prejudiced. I am loathe to admit such a thing but I can't help it; I like 'em young.

One would think that 30 years experience would be an asset to a profession such as nursing where the volume of knowledge needed is overwhelming.  Never mind the fact that some of my favorite nurses have loads of experience which just seems to make them better (my mom, my aunt).  But it's been the most consistent trait of the nurses that I have liked the most, they are young (by young I mean under 40) and they also tend to have small children of their own.  They are in the thick of it as much as we are and all of those mom reflexes and muscles are still in full effect.  Plus, and I know I am totally catering to stereotypes here, they learn how to use new equipment much faster.

The replacement nurse had all of these traits. She had never used the feeding pump before but she got it with a little bit of practice and reading the manual when she got stuck.  Lula slept well, but she did spit up at one point and the nurse gave her a nebulizer treatment but she didn't feel the need to wake us up.  We slept so well.

I called the agency the next day and confessed my bias.  I felt like the Hugh Hefner of night nurses, but they were totally cool with it.  I know I am going to hate myself for this one day when some 22 year old straight out of art school steals all my editing jobs and laughs at my computer skills and my complaints of lower back pain.  Both of our regular night nurses are young and have small kids and we are going to try to hang on to them for as long as we can, but when we do need a new nurse I am afraid that the senior set need not apply.

SAFE LANDING /  by Micaela

Sam has been religious in teaching Roan how to get down from things safely since he is so enamored with climbing up them. 

Warning: This video contains nudity!


THE LOLLIPOP GUILD /  by Micaela

I had this bright idea that since Lula can taste all she wants but can't ingest much that lollipops would be perfect for her - big on flavor and would encourage saliva production which would increase swallowing etc.

I wanted sugar free and all natural, though, and I had the hardest time finding sugar-free lollipops that weren't made with some mystery substance that was spelled with a lot of x's and y's.  I finally found all natural organic lollipops sweetened with beet extract.  Lula digs them!

NB: Please pardon Roan trying to steal Lula's thunder with a whine that sounds like a creaky door at the Last Chance Saloon.


CONCRETE JUNGLE /  by Micaela

OK, slightly cheating here. Roan did not, in fact, learn how to draw sidewalk chalk flowers just yet, but he is learning to make marks with the chalk.  Plus he loves the way it tastes.


ANOTHER SHITTY NIGHT NURSE /  by Micaela

Our beloved night nurse Mistura is away on holiday (although, since she went to Disney World with her husband and 4 children, while she has to deal with only 1 child at work I am not sure it's really a vacation) and this has filled us with dread because of our previous disastrous nursing calamities.

We were promised by the agency that this woman was an RN (as opposed to LPN) and knew how to use the feeding pump that Lula has.  When she arrived she seemed nice enough.  I spent an hour and a half explaining everything to her.  She seemed comfortable handling Lula. We told her to knock on the door if anything seemed amiss.

We got the first knock at 1:30am.  Lula spat up and was wheezing.  I gave her a nebulizer treatment and held her until she calmed down.  All seemed to be back under control, but the nurse really seemed like she had no idea what to do.  I tried to go back to sleep but no dice.  Next knock came about 2 hours later.  Lula had a fever and had been fussing the whole time.  She had vomited everywhere.  I went out to assess the damage and it looked like an OR.  There were bed clothes and burp cloths strewn around.  None of the feeding stuff had been cleaned.  There were dirty rubber gloves and soaking paper towels.  I started cleaning and as I cleaned I stomped until Sam came out too.  I was fuming.  The nurse sat there and kept saying that she couldn't put her down because she was fussing.  I was mad at Lula who always does this with a new nurse and I was mad at the nurse for being so ill equipped to handle what are routine pediatric issues that any hospital nurse wouldn't think twice about taking care of.

The last straw was at 6:30 am when we heard incessant beeping.  Sam went out to assess. The feed was an hour and a half late.  She had accidentally cleared the machine and had no idea how to reset it.  I lay in bed unable to sleep wanting to throttle this woman for being so inept.  I know it's so much information to take in but she's a nurse.  I went to art school!  I'm a mom not a nursing instructor.

Tonight I wrote out an entire manifesto of Lula's precautions, instructions, suggestions and orders.  I figure if the nurse tonight can at least read hopefully we will get a little more sleep.


CLEAN BILL OF HEALTH /  by Micaela

Roan has had his 1 year annual check-up and everything was great.  He is healthy and a good height and weight and either on target or a little ahead with his milestones (especially verbal skills.  He now says Mama, Dada, Hi, Bye, No, More, Bath, Bottle (or Ba) and, of course, Lula).  He didn't cry at all during his finger stick and just sort of watched, fascinated, at the blood oozing from his finger.  He did yelp when he got his shots though.  Otherwise he ran around the office charming everyone and rearranging everything.  They have an awesome waiting room and envious wallpaper.



RAINY DAY ACTIVITIES /  by Micaela

I think it might be from all the time I've spent in Scotland, but rainy days make me want to leave the house.  Yesterday was the rainiest day ever in New York (or since records began in 1945 anyway). It poured absolute buckets nonstop.  I got agita just thinking about being cooped up with the kids and the sitter all day, convinced that Roan would start bouncing off the walls in a matter of minutes without a morning walk.

I put on my Wellies and Roan and I trekked out to Target to get him some new shoes, about a 20 minute walk.  Trying to maneuver a crappy stroller with the grace of a supermarket shopping cart while battling an umbrella in a gale was pretty comical, but we made it there.  Let me tell those of you who live in the the suburbs that your version of Target (or Ikea, Home Depot etc), which works perfectly fine amid a strip mall off the highway, is total chaos and insanity in the center of Brooklyn (there are 2.5 million people in Brooklyn and 3 Targets). To my dismay when we arrived the entire second floor was closed off for undisclosed reasons, so a group of about 30 customers were corralled at the base of the escalators yelling to the staff on the second floor to request various items for purchase. Ugh.  Luckily the kids shoes were on the first floor so Roan did a little catwalking until we found some comfy new kicks.

I didn't think that a trip to Target counted as a real outing, but the rain kept coming down in sheets. What to do ?  Where to go?  I found the Brooklyn Children's Museum online.  Genius!  And I am sure that the other 2.5 million people in Brooklyn aren't thinking the exact same thing!!  Our sitter Kia looked a little hesitant, and then a lot hesitant when I proposed  that we take the subway.  I have been feeling increasingly tempted to push my comfort zone with the kids. In the past 14 months we have taken nesting to the point of hibernation and I am sick of it.  Yes, it's a pain in the ass to leave and requires major amounts of gear and organization but I figure the more we do it the easier it will get.  And actually, we did great.  From the initial museum suggestion until arrival at the museum (after some serious heavy lifting of the double stroller up and down 4 flights of subway stairs) was about an hour.  Not bad!  We got there and it looked like the first day of school. A line out the door of kids and bedraggled parents.  Roan was already getting bored.  Shit!! This was a big mistake. We were funneled like so many cattle through a maze of stroller lined hallways and squeezed ourselves into the toddler section.  I wore Lula facing out and she was actually remarkably fine with it all.  Roan freaked and wanted out out out.

We stayed and Roan gradually relaxed and started getting interested in things.  True to his form he took the keenest interest in everything that was not meant to be a part of the exhibits - the locks on the cabinets, the swinging doors, the slanted hallways. Sam joined us for the last hour there and we checked out the nature exhibits and said hello to the turtles and the fish.

Today, thankfully the rain held off but the puddles persisted, so Roan broke in his new shoes at the playground.




BANGS! /  by Micaela

I remember when Sam and I first met and he found out that what the Brits call "fringe" was call "bangs".  Bangs?! Why not call them splat or kapow??  He thought is was an absurd name.

Anyhow, all that aside Lula's hair has been getting in her eyes and impervious to the grippiest of barrettes so we decided to give her a little fringe (bangs, whatever).  Cute, huh?



YOU ARE NOT ALONE /  by Micaela

If ever there was a mantra for parents coping with a sick child, actually for nearly anyone coping with anything, it's this: You are not alone.

I snagged a free reflux wedge for Lula that a fellow Fort Greene mom listed online.  It's essentially a triangular piece of foam with fabric and velcro wraps to suspend her at a 45 degree angle.  The idea is that it will help with her dysmotility and reflux because she can sleep but keep gravity on the right side of her food. It's sort of like a not-fun version of those velcro walls that were such a fad (which, btw, I'm totally getting for one of the kids birthday parties)

http://www.awholelottafun.com/assets/velcrowall_lrg.jpg

The woman, it turns out, lives in the building directly behind my house. We stood over her sons crib and talked nonstop for an hour. Her son has multiple gastric issues that she has been struggling with for the past eight months. She described so many similar worries, anxieties, and frustrations that we've had with regard to feeding. Mid-conversation she said, "God, I wish I had met you before.  I've felt so alone dealing with this." She could have leapt out of her living room window into the kiddie pool in my back yard - that is how close we live to one another - but without knowing it we were each coping with the same things in seeming isolation. 

Feeding has been the most stressful and nebulous of all of Lula's therapies.  She is actually eating the least by mouth now than she ever has.  At her swallow study a couple of week ago it was found that she is aspirating thin liquids and at risk for aspirating solids.  They recommended that she get nothing by mouth except in therapeutic sessions.  This is so hard to accept because she used to be able to drink entire bottles of milk and now we can't even feed her more than a few spoonfuls of puree.  She can "taste" whatever she wants, so I have been stocking up on organic lollipops, dried mango, and wrapping banana in cheese cloth so she can chew on it without getting too much to swallow.

Feeding is such a nebulous challenge to tackle. Lula's therapist Lisa put it this way; it's so hard to artificially replicate a natural act, and because eating is the most natural act in the world when it's not working it's extremely difficult to take apart the process in order to fix it.  It's like trying to teach someone to breathe.  From the first lactation consultant in the hospital to the entire swallow study team at NYU everyone has an opinion about how to get kids to eat.  However, none of them actually goes home with you and shows you how it's done. When you sit at home with the sage voices of experts chirping in your head as you fail to achieve any measure of progress, defeated by mushed pear, their theories and ideas can make you feel even more lost. 

This is where other parents are absolute godsends.  There is an amazing resource called Feeding Tube Awareness, as well as countless yahoo groups and facebook groups.  They are a wealth of resources, tips, tricks, and techniques.  They bemoan, kvetch, rejoice, and commiserate.  Everyone is incredibly generous with their experiences, the good and the bad.   They are on the same rollercoaster as you, holding on for dear life. 

SIESTA /  by Micaela

Although my mom is convinced that Lula doesn't like her because she can never get her to sleep, I would say this photo is evidence to the contrary:


WEEKEND WARRIORS /  by Micaela

We had what felt like a real weekend for the first time in ages.  Partly this is because Sam only worked for 3 hours on Saturday and nary a sausage on Sunday.

Saturday we went to the Flea to peruse the hipster oddities, then went to the playground for the afternoon.  Lula swung happily and Roan tooled around in the sprinklers.  We did baths and bedtime and left the kids with a sitter to join our friends Forest and Jordan for dinner.

They have this magical secret garden apartment off a teeny street in Carroll Gardens.  True to the awesomeness of our awesome friends they pulled out all the stops and made filet mignon.  We played a highly addictive game called Settlers of Catan until the wee hours of 1am.

Carnivorous heaven!

On Sunday Cecelia and Jason brought us bagels for brunch and Aggie joined us for more chatting and baby fun.  Feeling ambitious we packed up the 2 diaper bags, feeding pump and accessories, swim stuff, food, clothes, car seats, stroller, etc etc and caravanned it over to Tim and Elizabeth's for an afternoon in their back yard.  Charlie (the third twin, we like to call him) was in his modestly sized rainbow swimming pool that we gave him for his birthday, which I now refer to as the gay pride pool. We chilled, we chatted, we ate, we swatted mosquitoes and stopped Roan from trying to impale himself several times.

This would have been a fairly typical weekend pre-kids but now normalcy has become a treat. Sam and I have both vowed to work harder to build weekends like this in to our lives more.  It is so easy to put off relaxing, but it's a bit like putting off sleep; you can't make up for lost time later. 

NONONONONONO /  by Micaela

We've told Roan not to touch the dog bowl so many times he actually think it's called "no". It's not his first word, but it's definitely his favorite word.


SECOND OPINION /  by Micaela

I've learned that people will forget
what you said, people will forget
what you did, but people will never forget
how you made them feel.
- Maya Angelou
(from a book my mom gave me about moms)

We went to Cornell/Columbia - Presbyterian today for a second opinion with their neurology department.  We got there early for our 10am appointment and sat down in a huge waiting room.  Since Lula is on Medicaid her appointments are all relegated to clinics. Thus, huge waiting rooms full of the poorest and the sickest being ministered to by the best and the brightest, the overachievers who want to help the world and maybe also get a BMW.  It sets up a sort of caste system that I have never felt so acutely before.

Anyhow, as we were waiting a woman sitting near us got into a heated argument with someone on her cell phone. From what I gathered she thought some of her family members were conspiring to call ACS (Administration for Children's Services) to have her children taken away from her. She became increasingly agitated and abusive, until she unleashed a stream of profanities into the receiver.  Staff members asked her to keep her voice down, and then to leave, which she completely disregarded.  All the while her little boy calmly traced a pattern from the chair, across to the magazines, over to the water cooler, then up to the chair again to stare out the window.  He was not the slightest bit upset by his mom's behavior, so I guessed that it was pretty typical.  

The worse she acted, the sweeter he behaved.  He started bringing Sam and I little plastic cups full of water, one after the other, as security was called up and the waiting room was gradually emptied of everyone but his mother, who was by then furious, humiliated and rabidly insulting everyone.  She was wildly inappropriate, but honestly I think if the right person had sat down and listened to her she would have calmed down her anger would have dissolved into fear and sadness pretty quickly. Instead she felt ganged up on by everyone.

Surprisingly no one addressed the little boy at all, and it seemed like he really needed to be given something to do. I asked for some crayons which they couldn't find, so I got a highlighter and some paper. I asked if he wanted to draw something and so he drew me and then he drew Sam.

Here we are:

Micaela by Damien

Sam by Damien

I am certainly no art therapist, but he began furiously drawing circles and I couldn't help but see it as a release of anxiety.  He was very attentive to drawing our eyebrows too. He had such a sweet, sad little face I wanted to take him home with me. Thankfully the police showed up and were somehow able to calm Damien's mom down and persuade her to leave.

We were finally seen by neurology, who want to admit Lula to Cornell at some point in the next few weeks to do more tests.  We explained why we were so unhappy with our other neurologist and they seemed to get it, but we'll see. No matter what tests they do they need to see Lula as a person first and foremost.  I think everyone deserves that.

Goofing off in the neurologists office

STAYCATION /  by Micaela

Filed under Things that are currently pissing me off about other people: It's August and everyone is going on vacation.

Lula's pediatrician, OT, PT, and social worker are all gone at some point in August, not to mention the myriad of friends and family who are heading for distant lands. Despite the whole myth about American's not taking vacations, when you really really can't take a vacation, this place looks like Paris in August.

Sam's family just returned from their croft on the north coast of Scotland. It is a place so dear to us that the kids are named after two islands up there, Roan and Neave. Normally we would be with them, going for walks to Slettle to pick mussels, out in the boat to catch mackerel or check the lobster pots, or visiting Bella and Uisdean, their neighbors of 50 years, for whiskey, tea, and biscuits.

The Croft at sunset

Hiking up Ben Hope

Me fishing. Yes, this is summer.

Otherwise we would be up at my dads house an hour north of NYC in the Hudson Valley. Until he sold the house last year it was the perfect weekend escape, close enough to barrel up to at the last minute, but light years in atmosphere from the city. It was a log cabin on a lake, where we would paddle out in a canoe to a floating dock with a picnic and an ecstatically happy terrier swimming ahead.

We took the kids there twice last summer, before g-tubes and night nurses and ER visits and oxygen tanks, when we knew there was something wrong but still hopeful that everything would sort itself out. I think of that time as miraculously casual and simple even though we were still up all night with two fussy babies. It was how we imagined things would be when we had kids.

Sam, Cecelia, Jason, and Lupa at the house

Cecelia and Roan at Dia Beacon

Sam and Lula at Dia Beacon

The kids on the deck at night

Our biggest, most consistent dream for years was to buy a house in the country. We were big on acreage, maybe even lakefront, and the house could be almost anything worth a carpenter's time and energy. We squandered countless Sunday afternoons perusing real estate listings. We even went on road trips to sad little towns near New Paltz, poking through rusty cabins with artificial ponds. Nothing was right yet, but we knew our escape was eminent.

Truthfully we won't be going anywhere for more than a few hours for a very long time. Questions of weekend getaways have been superseded by questions of wheelchair accessibility and proximity to a major hospital. And even if we could somehow get it together to go anywhere with Lula she is easily overwhelmed by travel, so it could be putting her through misery for only our benefit. But I don't want to go anywhere without her either. It makes me feel trapped, the four of us tethered to this disease or condition that no one asked for. It leads to envy, which leads to anger, which leads to sadness and it's a cycle I want to try to interrupt.

Sam already has a jump on this. He's reading a book, called How to Be Sick: A Buddhist Inspired Guide for the Chronically Ill and Their Caregivers. It talks about how to be happy for other people who can do things you can't. The author is actually housebound, which gave me pause, because at least we manage to leave the house with Lula every day.

Not exactly a bedtime story

When you can't dream of, say, a week on the north coast of Scotland or even upstate New York you have to summon things to look forward to in your own back yard.

With a park two blocks away, a grocery, two pharmacies, and a myriad of playgrounds, cafes, restaurants and shops within a few blocks (not to mention the pool across the street and the tennis courts in the park) our neighborhood definitely qualifies as a gilded prison. It's a small but very civilized world. We have the farmers market and the Brooklyn Flea on Saturdays, Music in the Park on Wednesday's, and "Beer and Babies" at a local beer garden when it gets cold. It's not vacation but momentary escape is possible if for only a few minutes at a time.

Gracie and Roan at the monument with all the exercise fanatics at 7am

The gorgeous Pratt campus

So any of you who are headed somewhere beyond Brooklyn please send us a postcard, and when you get back please pay us a visit and tell us about your travels.