Still Here

Peter and I packed up our things and flew across the country to look at housing in San Diego last week. Preparing for this trip was exhausting. We had to petition the insurance company to get 24 hour nursing while we were gone, notify the hospital and pediatrician that we'd be out of town, get a letter notarized saying my in-laws or my parents could sign consent for her, get her meds refilled, write a letter of medical history in case 911 had to be called {oh dear heavens, please don't let 911 need to be called when we are three thousand miles away}, write out a schedule of items that we do so that the nurses could fill in those hours that we normally cover, and oh, yeah, deal with a new GJ tube placed 24 hours before we left. In the middle of all of this we had a *slight* nursing fiasco, which, thank goodness, her nursing agency handled swiftly and very well.

And we have another child who had to be shipped off to Nana and Granpere's house in the middle of all of this.

And we got rear-ended in the middle of the tunnels in Baltimore. Oh joy.

However, once we got to San Diego, things went really well. No. We don't have a place to live, yet. But we do know a lot more about the area {like, uhh, we can't afford to live there :)} and what our list of wants vs needs are.

I want to live on Coronado on beach front property.

I need a place with a washer and dryer. We use cloth diapers, remember?

Wish Us Luck!

Charlotte goes in today for a GJ tube placement. Nothing like an appointment to Interventional Radiology for a belated birthday celebration, right?

We're hoping that Charlotte doesn't need any sedation and that things go smoothly. There's also a chance that she will lose the button and be placed with a traditional PEG tube, which is more annoying and cumbersome.

In other news, Charlotte's cardiology appointment went well on Friday. The cardiologist said he saw periods of tachycardia, bradycardia and sinus stoppage, (fast heart rate, slow heart rate, and skipped beats) all of which he expected, especially given her reflux.

He gave us the go ahead to stop seeing Pulmonary Hypertension and just keep following up with our Pulmonary doctors. We're still treating her heart rate with oxygen, but it's working and that's what matters.

Yay for victories, large and small.

Birthday Pictures

Happy Baby

Happy Baby. {Watch for the transition}

"Oh crap, there's food in front of me" Not Happy Baby

Cousins and Big Brother

Birthday Girl

Day 365

One year. One year ago we welcomed Charlotte into our lives. We welcomed milestones and set backs. We welcomed days of joy and days of agony. We welcomed a whole new world into our lives.  As a review, here's her first 26 weeks:

First Transfusion: 5 days old

First time wearing Jewelery: 11 days old

Heart Surgery: 14 days old

First time held by Dad: 17 days old

Finally above birth weight: 19 days old

First diaper change by Parental Units: 22 days old

First time held by Mom: 32 days old

First time meeting Big Brother, Caleb: 5 weeks old

Switched to SiPAP: 6 weeks, 3 days old

Off of TPN (full feeds of 15 mL every 3 hours): 6 weeks, 3 days old

First time wearing clothing: 7 weeks old

Doubled Birth Weight (2.5 pounds): 7 weeks, 4 days old

Parents Decided on a Name: 11 weeks, 2 days old

First "good" x-ray of lungs: 13 weeks old

First Eye Surgery: 16 weeks, 2 days old

First Major Break-down by Mom in the NICU: 4 months, 14 days old

First Transfer to CHOP: 4 months, 28 days old

First Time on Nasal Cannula: 5 months, 3 days old

Second Major Break-down by Mom in the NICU: 5 months, 1 week old

First Time Feeding Charlotte with a Bottle: 5 months, 17 days old

Transferred back to Chester County: 5 months, 18 days old

First day Home: 26 weeks old (more time inside the NICU than inside me)

(Of course, she just ended up heading back to the hospital 5 days later, but oh well.)

Baby Charlotte, we celebrate all of your milestones today. 

We celebrate you, and the strength that you have. We celebrate the humility you have taught us. We celebrate the kindness that you bring out in others. We celebrate your fat thighs and your perfect smile. We celebrate the moments of despair, because they were followed by moments of hope. We celebrate the nurses, doctors, physical therapists, occupational therapists, speech-language pathologists, respiratory therapists, radiology techs, and unit secretaries who have made your life possible. We celebrate the grandparents, aunt, uncles, cousins, and friends who sat by your side during this past year.

Today, we celebrate the journey. 

Year One

Phew.

It's been a year since my water broke. A year since that dinner date with Peter at the Greek restaurant. A year since I suddenly went from being half way through my pregnancy to being done with my pregnancy. A year. A solid year since I entered Chester County Hospital and left a part of me there.

Does it get better? Harder?

Do the appointments stop? Does the worry? No? That's lame.

It's alright. Deep breath.

I gave Miss Charlotte a bath tonight and her sleepy little eyes could barely stay open. Her chunky body relaxed in my arms as I wrapped her in a towel and dried her creases (there are a.lot.of.them.) She grinned at me and her bright blue eyes and uneven pupils faded as she slipped into her nightly slumber. She was happy, healthy, content.

She reminds me yet again, tomorrow will be another day.

A year and one day since everything changed. The day after that it will be a year and two days. And then a year and three days. And then two years and then three and then five and then "wait, didn't something happen on this date?"

So in those moments that I can't catch my breath, in those moments that seem to last for an eternity, in those moments that I hate the universe for the hand it dealt us, the pain it caused and the happiness it stole, in those moments, I will think about the years to come. The years that will be filled with late night baths, with tutus, with giggles and milestones, with trains and cars, and yes, even with therapy and doctor appointments.

But mostly, those years will be filled with gratitude. A little bit of pity, many a few moments of wallowing, frustration and fear. But mostly, gratitude.

Here's to those years. Here's to the last one and all that it brought us.

Oops?

No worries, Charlotte got the Synagis shot right on time. Our doctor and nurses worked everything out. Yay for them!

In other news, Charlotte accidentally was off of oxygen for about 15 hours at one point this week. It's a long story, well, no, it's not, but yeah. We thought she was getting oxygen, but she wasn't. The good news was that her lungs held out pretty well. She didn't have any significant desats! Whoa! The other news (we don't like to call it bad news, because it's not bad, it just is) is that her heart rate was significantly elevated. Sleeping, her heart rate was in the 180's-190's. Oops.

But yay for her lungs! It's great that her lungs are in a place where she can go that long without supplemental oxygen. It means that once her heart/lung pressure is in a better place, she'll be able to be weaned off the oxygen pretty quickly. She had a holter monitor placed last week and we meet with the Pulmonary Hypertension Specialist on Friday to go over the results. Hopefully we can stay where we are-- just increasing her oxygen to manage her heart rate.

Of course, we'll let you know!

Mom of the Year

Remember how Charlotte's insurance pays $1,200 a month for a shot to keep her out of the hospital with RSV?

Yeah, I would be the mom who forgot to order and schedule that shot. Here's hoping that a day late isn't too late. We've only been doing this for, what, five months now?

I can't be trusted with anything! :)