23 June 2011

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:

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.

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.


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


We all sang:


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)