Saturday, August 16, 2014

It has been nearly 6 years since I have worked on a Friday.

After Mirabel came home from the hospital for the first time she still had to been seen by her doctor every week. My job at that time involved on-call shifts so I worked it out with my boss that I would take extra on-call shifts every week in exchange for only working Mon-Thurs. My co-workers had been very generous, gifting PTO to cover the weeks I took off after the birth but I had run through most of that. Being able to take Mirabel to her appointments without using my time off was invaluable.

After a few months the time between her appointments was extended but having that extra day was extremely helpful. Her regular appointments were with her cardiologist but there were still physical therapy appointments, regular pediatrician appointments, audiologist, dermatologist, dentist, neurologist…

When Mirabel was three and a half I switched jobs, no more on call and more demands on my time. But, my new boss asked if I wanted to keep that schedule and it was so much easier to get to any appointments I kept the 4 ten hours shifts. Sometimes I feel a little disconnected from my projects when something happens on a Friday without me but it's worked out pretty well overall.

As weird as it is to say (or even think) I am looking forward to working an extra day each week. As well as it has worked out for us, Friday's alone with Mirabel and now both girls has always been hard for me. I get very emotional on Fridays, sometimes really depressed. Maybe being away from work and not having an agenda like we usually do on weekends, gives me just enough space to relax and fall apart. In addition to the mental health benefits, I think it will help with work, especially considering the large projects I am starting. As a family we operate better when our routine isn't disrupted; with Mirabel starting Kindergarten next month it makes sense logistically too. Being the pick-up parent, working fewer hours each day will give us more flexibility and time to deal with picking up kids, making dinner, shopping, playing, going to the library and everything else that we try to cram into the two hours between getting home and putting the girls to bed.

I still have an email in my Drafts folder from 2011. I felt like we had hit a milestone and I wanted to update the blog. For the first time in her short life Mirabel went to bed without any tubes or bandages. She wasn't wearing footie pajamas with a hole cut in it so we could feed her overnight; she was wearing a nightgown. It was such a relief to worry less at night. I never sent that update, probably because as relieved as I was, I was still holding in so much.

With a new schedule for all of us and a new school for Mirabel it really seems like the end of an era. Some of the best things that have ever happened to me have been in this era. Cristy and I bought a house, got new jobs, had two amazing children, got two bunnies, a dog and got used to our cat peeing on things because we got a dog.

For all the great things I will not be sad to see this era end. This era has included three open-heart surgeries for Mirabel. I almost used the word "endure" here but I realized that doesn't accurately describe how Mirabel deals with her problems. It's funny because Mirabel can be very dramatic. If you'd seen her cry "I don't like using my legs!" in an attempt to avoid waking three feet to put a cup on the table you might not guess what she's capable of. I was worried that her third surgery would be very hard for her because she would be so much more aware of everything. In the end it seemed like more of an inconvenience for her. In no time she was out of bed and doing laps around the floor, the nurses counting each time we passed, Mirabel pushing a wheelchair that carried her oxygen and the suction for the tubes that were still draining fluid from her chest.

This third surgery was planned before Mirabel was even born and I always thought that would be an end of sorts. In reality, I seem to have stored up all my trauma until I knew the surgeries were done and, over the past year I've been trying to manage the flood gates of fear and anxiety. Only in the past couple months have I felt I'm getting a handle on it, through therapy, medication, managing my sleep issues and lots and lots of support from friends, work and mostly Cristy. I am writing this about me but we've both struggled. We get on each others nerves a lot over smaller stuff but somehow Cristy and I have developed a system where we can look at each other, acknowledge it's a shitty day, that we're both jerks and still know we'll try to do and feel better tomorrow.

So here we are, August 2014, with a 5 year old heading to Kindergarten and a two year old who is as delightful as she is maddening. Our next year will be filled with schedules and work and potty training and all of us crying and yelling at each other and singing Let it Go but it will also be filled with learning and biking and sleepovers and laughing and jujitsu and hopefully learning some new songs!

Wednesday, January 8, 2014

Happy New Year

I realized today (when a friend emailed me about it) that the last update to the blog was when Mirabel was in the hospital in November.

Luckily no news really is good news. Our hospital stay was a short one and we've only been back for check ups. Our departure was dramatic though. The morning we were to be released Mirabel fell getting out of bed. So, they discharged us and then we went down stairs to the ER where we spent 8 hours having her front two teeth removed. But you know Mirabel, that didn't slow her down. She was home and jumping off things right away.

We had really nice Holidays. Thanksgiving at Cristy's brother's house, Christmas Eve at ours with the her family and then Christmas morning was just us and the girls. On New Year's Eve Cristy and I actually stayed up past midnight (barely).

We haven't changed Mirabel's medications since her last hospital stay just to be on the safe side. and we would just settle back into our regular routines but we decided life wasn't crazy enough so we are bringing home a puppy on Saturday!

Well, take care and have a great 2014.
The Stones

Friday, November 22, 2013

Better

Mirabel is feeling better.

We we're on the schedule for a chest tube insertion this morning but it's been canceled after looking at this morning's X-rays.
To give you an idea of what she's been dealing with, Mirabel has lost over 3lbs since we got here 36 hours ago, all from the area around her right lung (I know I said "left" in the other post but it turns out it was *my* left).
The plan now is to adjust her medication plan so we can go home (no IVs, obviously).
Thanks for all the prayers and well wishes, as always.

Wednesday, November 20, 2013

Ugh.

Although I'm really glad it didn't happen on her birthday (or, God forbid her birthday party) that's the only good thing I can say about being admitted to the hospital again.
Mirabel is okay but she does have another pleural effusion (fluid on her left lung), same as last time.

Tuesday, October 29, 2013

Home again, home again

Mirabel and I just walked in the door and are about to have lunch after nearly a week in the hospital.
Tomorrow I think we'll go back to normal. Mirabel has been bouncing off the walls at Children's for the past few days so we don't see any reason go keep her home from school any longer.

Sunday, October 27, 2013

Still in hospital

But doing well. In fact, look at the photo. If you look closely you'll see Mirabel has an IV in her hand, pretty much the only indication she's not at home.
The plan is to come home Tuesday. I'll let you know if anything changes.
Take care.

Friday, October 25, 2013

Back in the Hospital

As some of you know, Mirabel is back in the hospital but she's doing fine.
She's accumulated some fluid in her lungs and they want to keep a close eye on her.
She's in good spirits, especially when she's watching Jake and the Neverland Pirates or playing her new Hello Kitty Uno game.
Take care,
The Stones.

Monday, October 14, 2013

In case you're wondering...

...everything's bus pretty much back to normal. Mirabel started school last week and I (Dave) went back to work today.
Mirabel is still being followed closely, just to make sure she doesn't have any fluid build-up in her chest.
Not that you'd know it. She's just as lively as ever.
Thank you all again for the well wishes, prayers, food and general support over the past few weeks. Cristy and I have really been overwhelmed your generosity.

Monday, September 30, 2013

Another week down

We've been home just over a week and things are mostly back to normal.

We had a couple of check ups last week and on the last one Mirabel had accumulated some fluid in her chest so they changed her medication a little. We'll go back tomorrow for another x-ray to see how that's doing.

Over all her health is good but I think she's still a little emotionally fragile and she tires easily so we've got a little way to go yet.

Take care,
The Stones.

Monday, September 23, 2013

Out first day home.

It's raining, Mommy is at work, Amelia is at school and I (David) have a migraine but it's still better than being in the hospital.
Mirabel is doing great. Frustrated at us for forcing her to be less active and us trying to get her to leave her bandages on but otherwise, pretty much normal.
Before we left the hospital yesterday we spent some time talking to a family from Alaska whose 7yo son had the same surgery as Mirabel. He still has his tubes in and after seeing her go from tubes to no tubes to home he seemed determined to get up and walk laps around the floor like she did. Please send some of your thoughts and prayer his way.
Our experience at Children's was good as always. A great surgical/cardiac team and wonderful nurses, many of which we got to know from having them take care of Mirabel several days in a row.
We'll be updating this site a little less often but we've got some milestones to hit (check ups, return to school, etc.) and if I get and cute photos I'll send them this way.
Thank yo hall for caring so much for our girl(s).
Love,
The Stones

Sunday, September 22, 2013

Truncated

That last post had more to it than was posted, here's what's missing:

"Yes. That's our couch. We're home and just under the two weeks we were hoping for.

So if you'd like to visit let us know, it's a much shorter drive than it was yesterday for many of you."

New room

We've been lucky through our hospital stay to only have had to move rooms once and that was from the ICU to the surgical floor. This morning, however, we were told we'd have to move all our stuff. Here's a picture of Mirabel in the new room.

Saturday, September 21, 2013

No tubes is good tubes

Mirabel had her last two chest tubes removed this morning. I don't want to make any projections but I thought you'd like to know.

Thursday, September 19, 2013

No news ain't bad news

Sorry it's been a little while since I've updated.
Things are going well. After a few days of Mirabel's chest drainage going up, it has gone down today.
Mostly we're just hanging out and waiting. Working out the complex logistics to ensure I'm home with Amelia on Saturday morning so she can watch the Ohio State game.
Today I bribed Mirabel with television to get more laps out of her on our walk and I don't feel bad about it at all.
Cristy and I are beginning to loathe the drive between the hospital and home but otherwise we're doing fine with the help of so e very generous friends.
Take care.

Monday, September 16, 2013

One week

Mirabel had a great weekend. Lots of visitors (a grandma, a grandpa, two aunties, an uncle, friends and teachers from school, friends from the neighborhood and her little sister, of course), walking laps and to the playroom and of course feeling much better.
She still has two tubes but we'll just keep at it and we'll be home in no time.

Saturday, September 14, 2013

Up and about

Mirabel got some exercise this morning circling the floor 10 times, high-fiving nurses and yelling the occasional "watch your butt" as we squeezed by doctors.

Friday, September 13, 2013

One down, two to go

So we took out the mediastinal chest tube today - hooray! Mirabel's been a real trouper although she's starting to keep a close eye on anyone who comes in the room wearing scrubs.

We also had a great visit with a school friend (thanks, Mimi!), two walks around the floor and a quick catch-up visit with Aunt Beth and Grandma Arlene. M stayed awake all day, so let's hope that the current "zzzz"s she's catching will last all night long. Come to think of it, sleeping sounds like a great idea .... Night night!

Thursday, September 12, 2013

Feeling good

Not only is Mirabel feeling good enough to eat chocolate ice cream, she's feeling good enough to share with her sister!!!

Wednesday, September 11, 2013

On the floor.

We are no longer in the ICU!

We are on River 6 for anyone that would like to visit.

Just a heads-up; Mirabel has three tubes coming out of her chest with"reddish" liquid draining. If that is something that might upset you let us know before you come and we'll see if we can get her to put a gown on.

More for whatever today is...

As long as they have beds on the surgical floor Mirabel will definitely move out of the ICU today. She seems pretty normal this morning but her tummy isn't quite up to eating yet and she'll still have the tubes (3) draining her chest for the foreseeable future. 
We're still planning on two weeks in the hospital. One of us will probably stay at home tonight with Amelia (special thanks to our friends that have been so good to us and Amelia).
Once we're on "the floor" we'll confirm when she's ready for visitors. 

Wednesday

We all got some sleep last night. I woke up at 7:30a to Mirabel sitting up in bed and chatting with her nurses, looking and sounding completely normal so sure we'll be heading out of the ICU this morning.

Tuesday, September 10, 2013

Another night in the ICU

So we'll be in the ICU again tonight and honestly that's just fine with us. Mirabel has her own nurse and there's plenty of room for a of us.
M is doing well. Not thrilled by all the tubes coming out of her but she's strong.
More tomorrow.

Good morning

Mirabel is still a little groggy this morning but she's waking up, eating Popsicles and watching cartoons.
The goal for today is to move to a regular room when she wakes up a little more.

Monday, September 9, 2013

Extubated!!!

They just took the tube out and she's breathing just fine. Hopefully she'll have a restful night.
Again, thanks to everyone for all the love.

CICU

Mirabel is in her room in the Cardiac ICU and we are with her now. Still intubated but they try to get her breathing on her own as soon as possible.

Side note: the new CICU at Children's is beautiful with plenty of room for Cristy and I to comfortably stay with her as long as we need to.