28 June 2011

GI JANE

We had a very good appt with Lula's gastroenterologist today.  Lula is now 14 pounds 8.5 ounces and I can't remember what height but Dr. Millman actually described it as a growth spurt! She's still below the growth curve, but less below it.  She's been spitting up so much less in the past 6 weeks or so and I guess it's all gone straight to her hips.

Let me wax admiringly on Dr. Millman for a moment.  I can't imagine that too many people who spend half a million dollars on medical school are too jazzed about the idea of being glorified plumbers (she herself even says that in order to be a GI you have to love poop!) but she is so utterly brilliant and dedicated.  She had a medical student with her today who asked her what test was best to determine if a patient has dysmotility and her answer was "a really good and thorough history",  meaning the best test was to sit down and talk with the patient about their health problems in great detail, and the medical student was like "wow, I've never heard any other doctor say that before".  And honestly this is truly the difference.  We spend about an hour with her going through every detail of Lula's GI issues every six weeks or so. She emails me links to support groups, listens to me bitch about the G-tube, and humors me when I ask for organic vitamins.  She's encouraging and optimistic without sugar-coating anything.  When she disagrees with something another doctor says regarding Lula she is so articulate in explaining why and I usually think she's right.

She was actually late to our appointment today because she was up in pediatrics getting her ankle bandaged up.  When I asked her what happened to her ankle she said that all 5 foot 1 inches of her got a little carried away playing basketball yesterday and she sprained it. Somehow, that made me like her even more.

We are going to start Lula on a new food regimen over the next couple of weeks which will hopefully give us more time during the day to leave the house and will also give Lula a chance to feel hungry and therefore want to eat more by mouth.  Wish us luck!

27 June 2011

WALKING IN THE PARK

It is amazing how quickly Roan has gone from taking a few wobbly steps in the living room to tearing around the playground like a drunken sailor.
video

NO WHINING

In response to my post from yesterday, Sam wore this t-shirt:

 
Somehow I have a  feeling that this t-shirt will be making frequent appearances in the coming years. Stay tuned.

In other news, Lula, poor girl, has a rash on her neck.  We have to put cream on it which necessitates a hairstyle so unbecoming that it brings to mind Donald Trump's comb-forward coiff.  The horror!


THINK HAPPY THOUGHTS

Wow, apparently I sounded more despondent and ornery than usual in my last post because I got a slew of supportive and encouraging emails.  Thank you all! The blog is a great place for me to vent but sometimes I forget that other people are reading it! Things have already improved.  Everyone is slightly less congested and I am therefore slightly less cranky.

Yesterday Roan, Lula, and I  went with Kia, our sitter, to the Pratt campus, which is really lovely. We sat on the grass and blew bubbles. Lula practiced rolling over.  It was only about an hour but we all felt a little more human again.

Roan with stone men

Gorgeous Lula trying to roll over

26 June 2011

A BITTER PILL TO SWALLOW

Sick kids make me very cranky.  As it stands on a perfect day I hardly feel like I'm keeping it together, but as soon as anyone in this house gets sick I just want to go postal on everybody.  First off I am never the one who gets sick, so I am the defacto nursemaid. Right now Sam, Roan, and Lula are all sick and are all a spluttering, wheezing mess.  Lula sounds like a 14 year old french bulldog and Roan sounds like Bea Arthur.  Sam sounds like himself, only whinier.

Most days Lula's medical regimen is a hypochondriacs dream, but now that she's sick it's almost comical. In addition to her dismotility (3x/day) and reflux meds (2x/day), and her "spa treatment" (Atrovent nebulizer 2x/day) she is also on an antibiotic (2x/day), a steroid (1x/day), 2 topical creams, an oral cream, and an Albuterol treatment.  I literally cannot figure out how to time all of these so that there is at least half an hour between drugs.

We have her hooked up to a machine called a pulsox which reads her heart rate and oxygen saturation and when her O2 gets too low we have to hook her up to oxygen (I have this bizarre association between oxygen tanks and old, chain-smoking ladies in Bingo halls, which is a little disconcerting). This whole medical circus has taken over our every waking moment and none of it even addresses the longer term problems that are going on with Lula. Most of this is to treat a cold. Once I have her stable and sleeping, once she is over this cold I will still have an unknowably sick child. It leads to an endless cycle of fear and anger, fear and anger, and who can I direct all of this fear and anger at?  There is no outlet because it's no one's fault.

It's absurd, I know, but this is when I start to ask the universe "what did I do to deserve this?"  I used to work with a photographer named Brenda Ann Kenneally, who documented crack addicts, including a woman who was actually smoking crack in the hospital while in labor and her kids were born healthy.  I think this is part of why all of the doctors and the medical community are so frustrating to me. They address the "what" but generally avoid the "why". Their protocol is fix now, ask questions later (or never).  They can't ascribe meaning to any of the immense life changing decisions they are involved in for other people.  Suddenly you find yourself in your living room with half a dozen medical devices, a laundry list of medicines, and they haven't managed to address what any of this means to your life or the life of your child.

This entire thought process cycles through my mind endlessly and it's frankly exhausting.  I think we are hoping that at some point me might find a modicum of peace and acceptance within our lives.  I think we are just tired of being frightened all the time and weeks like this don't help with that. Thus the crankiness.

I just realized this post is a hopeless downer.  I have been trying to re-edit it since yesterday to have some sort of upswing but I really can't, so here it stands.  Hopefully when everyone stops sneezing on me I'll be in a better mood.

23 June 2011

MUCH BETTER

Lula is much, much better and now appears to have some sort of common cold or virus. Unfortunately, it appears that a cold or virus for Lula involves fevers, labored breathing, a low oxygen count, and heart attacks for all adults involved.  She's on a bevy of meds, more than usual, but some of them are precautionary. Fortunately, her trusty assistant is always there to lend a hand.

I heart nebulizer treatments

SPLISH SPLASH

I know I'm saying "no" but he knows I'm not really saying "no" because how could you say "no" to this??
video

TIMING IS EVERYTHING

It has been quite a week.  In one week Roan has gone from taking his first wobbly steps to toddling around like a drunken Frankenstein.  It's just obscenely cute:
video

We had a great weekend, very relaxed with a lovely Father's Day Sunday in the park and chilling in the back yard:

First bike ride!
 We were getting all geared up for my birthday on the Tuesday - our maiden voyage away from children for 24 hours - and wouldn't you know, Monday night Lula got sick. She fussed all evening, but we thought it was gas. Then we had a new night nurse - her second night on the job - who had to wake us up at 4am. Fever, labored breathing, definitely not a happy baby.

The next day I was sure we were going to have to cancel our plans.  I was too frightened about Lula being sick to truly appreciate her colossally bad timing.  I have heard this before from parents, however.  Kids will never fail to get, say, chicken pox on Thanksgiving, or the flu just as you are going on vacation.  I think it's their way of reminding you who's in charge. 

Were it not for my mom stubbornly insisting that everything was fine, that Lula was much better and everything was under control, there is no way we would have left.  But she pretty much kicked us out of our own house. It seemed so unnatural to leave my sick child to go out for the night, and when we got in the cab my stomach was tight as a drum (figuratively speaking - physically I haven't done a sit-up in two years).

First stop was sailing.  This was a belated Father's day present for Sam.  A few minutes on the Hudson and we began to ever so slightly unwind.  Sam got to do things with jibs and tillers, or whatever, and I got to sun myself.

We tried not to talk about the kids. We sailed past an amazing $200 million dollar sailboat and tried to peer in and see who owned it.  We discussed Jersey City. So far so good.

Then we went to The Standard.  I had casually mentioned several months ago to my friend Cecelia that I would love to stay there for the night. It's a super chic modern hotel in the Meatpacking district situated atop the Highline with amazing views.  A few weeks later I got a card from 20 of our dearest and most amazing friends who chipped in and bought us a deluxe king room for a night (I mean, seriously, how fantastic are our friends?!)


Crazy view of the west side

We called my mom about a hundred times and she kept saying everything was just fine, but I knew she wasn't being totally honest.  Aggie came over after work and stayed and held Lula all night and waited until the night nurse showed up. I called mom after dinner and she tried to sound casual when she said, "we have her on a little oxygen", which made me freak out a little inside because her doctor made me swear that if we felt we needed to put her on oxygen that we would head for the ER.  My mom was insistent, though, and told us to stop calling and enjoy ourselves.

Truthfully, we both slept terribly.  We were both too worried, but I'm glad we did it.  Between my mom and the night nurse there were two RNs there watching her. That's more than she would get in the intensive care unit. And I think it was good for us to practice being away for the night. It was much harder than I thought and not just because Lula was sick.  I missed both of them. That's the rub; when you are with them all the time you dream of getting away, but as soon as you are away you miss them.

After all our declarations that we were going to sleep until noon we were both up at 8.  But we did order room service and watch crappy tv and have a bit of a lazy morning before we headed back to reality. That was actually my favorite part- there are no lazy mornings with children.
French toast and eggs benedict

We got home and within half an hour my mom and I were in a cab with Lula on the way to the doctor.  She's on antibiotics now and already has greatly improved throughout the day.  She and my mom slept all afternoon.  I think they had worn each other out.  Had my mom made the slightest suggestion that things were not so great we would have been home in a heartbeat, but she was absolutely determined that we would get to have our night out. She single-handedly willed it to happen.

19 June 2011

DADS

Sam is a truly amazing dad, and in the best possible way he totally reminds me of my dad.  I think one thing they have in common is that they both really seem to enjoy being dads.  I don't recall ever once thinking that my dad didn't want to be a dad, although I know I gave him many opportunities to feel that way.

Sam also seems to relish his new role in life and I think in some ways it comes more naturally to him than being a mom does to me.  I think he really was born to be a dad.

HAPPY FATHERS DAY DADS!


















17 June 2011

MRI NEWS

The news is not great, but I don't really know what the news is.  Betty, Lula's pediatric nurse, called yesterday to say that the MRI was "abnormal".  Today we went to Bellevue to see her. The radiology report is a jumble of confusing terms, syndromes, congenital possibilities, etc.  but with no clarity or diagnosis.  It's being sent to other radiologists, the geneticist, and the neurologist for further analysis. Likely this will all lead to more tests.  

I was distraught, which seemed to confuse Betty a little, who said "none of this should come as a surprise to you".  I suppose it's not that it's unexpected, but that it closes the door on any hope for a normal life. I asked Betty, "how are we supposed to live with this?" and of course she had no answer.  She suggested we might get more nursing help, that I should find a support group, etc. I'm sure these things would help, I'm sure they will, but they won't change the fact that we can no longer expect things to get better. She will not outgrow this. 

On the upside I think I am becoming better at digesting bad news more quickly. Initially the tiniest setback with Lula would send me into a chasm for days.  Now I can absorb devastating news in about 24 hours.  I guess it's because really none of this changes our day to day lives for now. MRIs, pneumonias, whatever catastrophes happen to divebomb into our lives and fuck everything up now seem to come and go like the ebb and flow of a tide. There are still lunches to be made, walks to be strolled, therapy sessions to be had, naps to be taken. There are 8 feeds a day and night to keep her as healthy as we possibly can.  For now I will focus on that.

15 June 2011

ALMOST!

On his birthday Roan started taking a couple of steps on his own.  I wouldn't say it was walking, per say, so much as falling forward enthusiastically.  Since then he's been extremely eager to practice.  If I know what's good for me I should discourage walking at all costs, but its so cute to have him drunkenly stumble into my arms I can't resist. 

Here's a video courtesy of Aunt Aggie.  The victory was somewhat compromised when he donked his head on my teeth at the end. Ouch.

video

13 June 2011

ON TO THE NEXT ONE

Lula may have gorgeous eyes, golden hair, enviable lashes, and luscious lips, but she also has crappy veins.

She had her one year MRI today.  Another in a sequence of anesthesiologists had their ego deflated by her tiny veins, and after several failed attempts at sticking her hands and feet they had to put the IV in her neck - good times! The MRI went well, although she had some bronchospasms (I had to look them up)
http://en.wikipedia.org/wiki/Bronchospasm

The recovery room was certainly interesting. Since we were at Bellevue, a public hospital, our roommates included a guy who came with his very own corrections officer who had to handcuff him to the bed as soon as he regained consciousness!

Given that she spiked a pretty awful fever the last time she had anesthesia for her G-tube surgery they decided to keep Lula overnight (in the PICU, not with the convict), but she recovered very well and mainly was just hungry and gassy. According to Sam she fought off three nurses and managed to rip out the IV, which I think are encouraging signs of strength and coordination, don't you?

Sam is staying with her tonight and if all goes well she will be home tomorrow.

Lula and her hospital companion

1 + 1 + 1

The other day my friend Cecelia told me an old saying about raising kids, "The days are long and the years are short".  Truer words were never spoken.

Roan and Lula celebrated their first birthday with their friend Charlie yesterday.  All three bubs were due on the same day and born 3 days apart.

The day started drizzly and cool, which required some rethinking about our outdoor plans, but things were going smoothly until our Fresh Direct delivery time slot (8am-10am) came and went with no delivery.  Turns out they are neither Fresh nor Direct.

I spent most of the morning listening to hold music with their customer service reps. Finally we figured out they had delivered half of the food to a neighbor, who wasn't home, so we could see the food but not get it (The other half arrived at 5pm!). We had three helpers for the day, Miranda, Esme, and Claire, who found my phone rantings highly entertaining:


Finally things got off to a full swing.

video

Elizabeth, Charlie's mom, made the most beautiful cakes for the kids, one for the boys and one just for Lula:


We all sang:

video

It was a great day!  The kids made out like bandits with presents. Charlie, Tim, and Elizabeth totally outdid themselves and actually got us us as a present, handmade courtesy of a very clever woman on Etsy.

How friggin' adorable are these?!

To top everything off Roan and Lula got the best birthday cards ever from our neighbor Claire. Surely the word "precocious" was invented to describe this kid, who is equal parts worldly, mischievous, and sweetness.  Exhausted from the day, I got all weepy when I read these:


"This cat" refers to a photo of a cat covered in donuts on the other side of the paper


She just about says it all. Happy Birthday Roan, Lula, and Charlie!

11 June 2011

BIRTHDAY BOY AND GIRL


Roan Douglas and Lula Neave are One Year Old Today


Happy Birthday


Love


Mom

Roan and Sam

Lula and Sacha (sitter)

10 June 2011

A YEAR TO REMEMBER

A year ago I was a totally different person.  I was that person for 33 years in different permutations, phases, hair colors, jobs, and countries, but still pretty much me. Now I am someone completely new. I think it has taken me the entire year to figure out who the hell that is, but I'm getting there.

In any case I can tell you that the end of my previous life was really uncomfortable and I spent the remaining few weeks lying like a beached whale on the sofa staring at my feet, which looked like two blowfish. I wasn't necessarily ready to be a mom, but I was really ready to not be pregnant any more.

I keep trying to remember what I was thinking, who I was in those last few days a year ago and what I would go back and say to the old me now.  Maybe something like " This will be the hardest year of your life and mostly not fun, pretty overwhelming, exhausting, and frightening, but you will survive it and things will get better, more joyous and less terrifying.  You have the most amazing husband and family ever. Your kids are going to be incredible people, but not who you ever expected. Oh, and your feet will go back to normal."
Close to the end
Yes, that's my belly, with our little mascot reaching the summit
Oh my God, for real I look like I'm going to give birth to a full grown Sumo wrestler
Our last meal on the way to the hospital was at IHOP (International House of Pancakes for you non- Americans).  Sam's totally giving me the side eye!

08 June 2011

FINALLY

Certain things that kids do are adorable but always happen too quickly to ever capture on video.  I have tried and failed so many times, but it's like photographing lightning, it's over before it starts.

However, Lula gave me an early birthday present yesterday, a sneeze and a yawn in quick succession.  And there's an epic build up to the sneeze.

video
 Holding her is Mistura, her marvelous night nurse.

DEXTERITY

One of my favorite things so far about having kids is watching them learn.
video

BATH TIMES TWO

My sister Caitlin is back from Prague and visiting for a couple of weeks.  The two of us crammed into our tiny bathroom with the kids to give them a bath.  It felt like old times.  The apartment we grew up in had such a small bathroom, and only 1 bathroom for 4 people, that bath time felt akin to taking a shower in a subway car at rush hour.

I had the bright idea that since Lula hates baths and Roan loves baths that maybe if we gave them a bath together she would see the error of her ways and love bath time too. Um, no.

video

06 June 2011

TEETH AND NOSES

Two new developments around here in the past week or so.

Lula's top and bottom front teeth have broken through. So far it's the only thing she's beaten her brother at, and she's psyched to try them out.  Lula is having an MRI next week so we are going easy on any feeding therapy with liquids to make sure that her lungs are completely clear and in the interim she has discovered cookies.  She doesn't swallow much cookie, but she loves scraping her new teeth on them and chomping down on them.  She breaks them into little pieces, which i then have to try to fish out without being bitten myself.
Actual bite marks! Can you see em?
Cookie remnants


The other thing is that Roan has discovered his nose. Or rather his nostril. And that his finger fits so snugly in it.  We are trying to discourage it but then he goes after our nostrils, which is worse.  Apparently it's some developmental milestone (Lula's OT called it "single digit identification" or some such). It's also confusing because we are trying to teach him to identify body parts ie "Where's Roan's nose? Where's Roan's ear?" and pointing and picking are verrry similar in his view.

Doing the Seinfeld-style nose pick fake out

04 June 2011

TOP GEAR

One of the occupational hazards of being in this house is that there are prototypes everywhere.  Sam likes to test out his newest trash can design (which, by the way, is broken) or his latest idea for a mobile office unit (ahem, still not quite finished) at home.  Truly, his ingenuity cannot be overstated.  He's MacGyver and a Boy Scout rolled into one. He has a way of adapting the most mundane household items to fit a certain precision he has about almost everything.

Consequently lots of things for the kids are rigged just so.

Such as...

Lula's G-tube had a habit of popping out and spilling milk everywhere if she stretched too much so Sam took a hair clip, sawed off the ends and bent them inward.  Works a treat!


Lula's new feeding chair is attached to the base of an Ikea office chair.  Goes up and down, spins, and does wheelies.

Roan kept wanting us to hold his bottle for him. Sam looped a rubber band around the bottle and through the gate and voila!  Instant gerbil. 

01 June 2011

DOG DAYS OF SUMMER

Summer has landed like a soggy diaper on a fire pit here in NYC.  Only June 1 and it already hit almost 90ยบ today.  We took the kids to Prospect Park over the weekend and the sprinklers were on.  I kept having these bizarre deja vu moments because they are the same playgrounds I played in as a kid (in Central Park but they are all very much the same).  Fighting for the tire swings.  That slightly gross pasty sand from the sand pit.  Molten hot jungle gyms. Ice cold sprinklers that you would play in until your lips turned blue. What wonderful, messy, magical, chaotic places they are. I am so glad my kids are going to experience them too.