30 March 2011

LULA'S LASHES

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).

ROAN CAM

This is Roan, pacing back and forth like a neurotic zoo lion.  Or what we like to call "naptime".
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SAMS TATTOOS

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

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!

LITTLE GIRL BIG BED

28 March 2011

OFF AND ON

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FEEDING THERAPY

Tomorrow we are going to St. Mary's Hospital for Children to meet with them to discuss Lula's feeding therapy.  Lula has been practicing with her spoon (note: crazy hairstyle courtesy of dad) so we'll see what they say.


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27 March 2011

SUNDAY OUTING

In our attempt to return to a somewhat normal life, this afternoon the four of us ventured out to a bar in Carroll Gardens. While it was so wonderful to see our friends, it's definitely not what having a pint in a bar was intended to be.

Any trip out of our apartment involves setting up a combination M*A*S*H unit and nursery in foreign surroundings. It means an hour of packing and prep work, and improvising IV poles out of chair backs, etc etc once we get there. Its such a production to undergo for a glass of wine and we are completely exhausted afterwards.

I'm hopeful that the more we practice the better oiled this machine will become and eventually the enjoyment will outweigh the effort. Until then I'm having a glass of wine at home and watching Hoarders.

THIS IS HOW WE ROLL

This is Lula's fantastic new fully customized medical cabinet. It holds all of her various feeding and medical supplies as well as being a stand for her feeding pump. It's completely adjustable and on wheels. She has one very handy dad, doesn't she?






25 March 2011

BLUE HAIRED LADY

Here's Grandma Susan with one of her charges (circa Xmas 2010).

She is our resident nurse, bagel buyer, folder of laundry, and general shit-talker in addition to helping to feed, bathe, change, and amuse the babies.

She is here 3 days and nights a week and is no doubt the glue that holds what little sanity we have together.
 
She is certainly proving the old adage that you never stop raising your kids, even after they are grown and raising their own kids.

Thanks, Mom!

RASTAROAN

I can only tolerate so much reggae before I want to throttle someone.  So whenever I am away Sam plays reggae pretty much nonstop to get his fix.

I think he's trying to inculcate Roan into a nefarious British hippie lifestyle.



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A ROOM WITH A VIEW

If there was any upside to our week in various Peds ICUs it was that for a couple of nights Lula had a private room 6 flights above the FDR drive, overlooking Roosevelt Island and the Queensboro Bridge.

http://www.youtube.com/watch?v=FlBecfmnWMs

23 March 2011

CHOWING DOWN

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DOING BETTER

Lula is now off of oxygen and breathing room air.  They are going to take out her catheter, but they have called a surgeon to do it since it was put in via incision in her ankle.  She is taking all her feeds really well and PT and OT came and worked with her this morning. We are seeing the little Lula that we all know and love come back into her face.

To add to our collection of home hospital equipment, we are being sent home with an oxygen machine so that if something like this ever happens again (and let's hope it doesn't) we will be a bit better prepared.  If all goes well tonight she will be going home tomorrow.

The nurse today is a bit of a flake so I am having to double check everything she does, but otherwise everyone here has been great.
Lula with her monkey from Auntie Aggie

Gorgeous view of East River and Queensboro Bridge at dusk

Crazy rigged IV that Methodist had to put in (it went into her bone). Everything is impressively improvised in hospitals

Lula sans oxygen

21 March 2011

DEEP BREATHS

We are all trying to calm down after our ordeal with Lula, who is currently in the Intensive Care Unit at Cornell. She is still very sick and has pneumonia, but she is at one of the best children's hospitals in the country.  Right now we are not even taking things a day at a time, we are taking them an hour at a time. She has shown improvement today that will hopefully continue. She is one seriously tough little girl.

Lula's South facing view of the Roosevelt Island, the East River, and the FDR Drive

Lula with her ill-fitted oxygen mask

16 March 2011

WAITING FOR SPRING

Lula in the park

CHAIRMAN OF THE BOARD

Roan at his desk

I'M NOT A DOCTOR BUT I PLAY ONE IN REAL LIFE

I feel like I am completing medical school through correspondence course. And by "correspondence" I mean endless piles of paperwork, faxing, refaxing, phone calls, transfers, missed calls, and unreturned calls.

Lula has 7 doctors at 4 different hospitals, 3 therapists, a service coordinator, a social worker, and numerous night nurses.  She has therapy 5 days a week and usually 1 or 2 doctors appointments per week.

Her schedule rivals Obamas, but I can handle that.   It's the medical black hole that I regularly seem to fall into that feels like an abyss. I don't even know what I don't know.

Just when I think I have a grasp on things somebody says something like "we needed that paperwork last week - you had to fax the consent to the health management department etc etc. Now we may have to reschedule your appointment for June. Don't you have a case manager?"

Moments like that truly are devastating because I can't even protect my child from incompetent bureaucratic pencil pushers, let alone disease and illness. Exhausting.

14 March 2011

A WORD ABOUT THE DOG

Long before these two came along there was Gracie, who was the center of the Walker/Murray universe. My parents called her their "grandpuppy" and she was showered with walks and cuddling and attention and love. Now she is a walking hazard, something to potentially trip over while holding an infant or two, as well as a rather irritating doorbell echo (we actually got a new doorbell but that didn't outsmart her for long).

Luckily she has weathered her newfound neglect pretty well and hasn't taken it out on the anyone.  Now that Roan can crawl and has become grabby she is quick to keep at least 2 feet between him and her,  but with Lula she is the opposite.  This could be that since Lula has a weak vocal chord she is the quietest one in the family, but I really actually think Gracie feels like Lula needs a bit of backup. 

Gracie's napping spot of choice

With Grandma Cam

13 March 2011

POST BATH HEAD SCRATCH

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ASAGOHAN

I believe this means "breakfast" in Japanese. Obviously Japan is on all our minds and, given recent events, I have yet again recalibrated in my mind what it means to be "lucky" or "unlucky".

This photo is of Lula's breakfast feeding therapy session, which I prepared in the way we had our breakfast at the wonderful Ryokan we stayed at in Kyoto 2 years ago, which is to say in lots of little dishes.  Lula has oatmeal, milk, pears and even a little cinnamon. The little dish is also from Kyoto.

We do twenty minutes of feeding therapy total with Lula sitting in her chair. We use a straw, a spoon, and a little cup, alternately. She is best with the spoon but the straw is growing on her.  She is still only taking about 20 mls of food by mouth (less than half an ounce) but she enjoys it and she is now happy to be fed in the chair which she wouldn't do even 2 weeks ago.

Here's to progress in tiny increments against seemingly insurmountable odds.


Lula ready for breakfast

11 March 2011

LONG NIGHTS JOURNEY INTO DAY

We had a new night nurse last night. She is about #14 and one of the worst, which was a surprise since all the other nurses from this particular agency have been great.
Sam awoke at about 3:30am to find her sitting next to Lula, completely oblivious that she was SOAKED in sweat and fussing.  Sam figured out she had given Lula six times the amount of formula she was supposed to get and didn't even know how much breastmilk she had given her in total.  This is a trained LPN (one step down from an RN).  Our 20 year old student babysitters are so much better at this. Needless to say she will not be returning.

Luckily Lula is such a trooper that despite her rotten night she was bright eyed and calm when I left her this morning. And Roan slept until 8:30!

I keep vacillating between feeling decidedly cursed and unlucky that Lula has so many problems, and feeling SO lucky that our situation isn't worse.  One of this nurses other patients is a 19 year old kid who was in a car accident at 17 and has permanent brain damage. He has a feeding tube and is non-communicative and has no hope of recovering.  His father died of a heart attack a year after from stress leaving the mom to take care of the kid by herself.

When I take Lula to Bellevue I see kids who are deformed, listless sacks of malnourished limbs being wheeled from one clinic to the next and I don't know how the parents keep going. What is there to look forward to?  How does one survive all the work when there is nothing to look forward to?

10 March 2011

INTRODUCING

Remember this?  This was our birth announcement (an email, we never got around to doing printed ones) They are so much bigger now!


introducing our wee man weighing in at 6lbs, 19" long, born June 11th 2010 at 11:37am

Roan Douglas Walker Murray
and

our little lady weighing in at 5lbs, 3oz, 18.5" long, born June 11th 2010 at 11:39am

Lula Neave Walker Murray


a brief history of their names -

Roan: an island off the north coast of Scotland where Sam's folks have a croft (scottish cottage). the picture attached shows the west side of Roan on the right with the croft in the foreground.


Douglas: Micaelas' grandfather was called Ira Douglas Odgers, Sam's father is Douglas Neil Toler Murray and his grandfather was Thomas Prain Douglas Murray.

Lula: Micaelas' great-grandmother was Tallie Lula Davis (called Lula). She lived on a farm in Mississippi and had 12 children, including triplets...

Neave: also an island near the croft. it's around the headland from Roan, smaller and has a beautiful little beach and remains of a church.

FEET

Roan's Feet
Lula's Feet        

FORTUNE COOKIE

Went to the geneticist today with Lula. He was really happy with her progress and said he had not really been expecting any improvement based on his last exam. He said she was like a different baby, particularly her eye contact and head control.

But he wants to do more tests after she has an MRI at a year old. He suspects it could be a syndrome related to slow brain growth, but he wouldn't even tell me the name of it since it's just a hunch and I am sure he knew I would google it. 

Lula sat with us at dinner, which was chinese takeout as chosen by Caity, who is visiting from Prague. Gracie sat next to Lula suddenly seemed to notice the dog for the first time and really stared at her and followed her with her eyes.

My fortune cookie read:

"The important thing is to never stop questioning".

THIS IS MY VERY FIRST POST

OK, I really should have started this blog ages ago when the tide of requests for photos and videos nearly washed me away, but I have twins so what do you expect?

Anyhow, I am going to backtrack a bit. Let's start waaay back at the very beginning, shall we?


I think these scans are from about 20 weeks or so into the pregnancy. I think you can already tell who is who here.
Baby A (later known as Roan)
Baby B (aka Lula)