Good Day

We've had some great news in the NICU today. First and foremost, her
eyes are stable and there is currently no reason to send her down to
CHOP. The eye doctor will check her again in a week, and If all looks
Good they might even switch her to every two weeks. They said the
next few weeks is critical for her long term eye sight. Past that,
the next six years are huge and after that, her eye sight will stable
out. She'll have problems with peripheral vision, and she'll likely
have severe near-sightedness, but only time will tell.

Also, she weighed in today at 3175 grams. That's 6 pounds 15.9
ounces. Which I think should totally count as seven pounds. Way to
go!!

And, CA's time on the high flow nasal cannula has increased to four
hours, two times a day.

Thanks you all so much for your love and support. We can't say it enough.

I Love Our NICU

I haven't really had a good cry in the NICU yet. I see moms crying all the time in there, and usually, I roll my eyes at them. Mostly because it's (usually) a mom with a baby who is totally fine and will be leaving within 24 hours and I wanna scream GIVE ME A BREAK, but even just typing this, I realize what an awful, terrible, person it makes me.

Anyway....

Tonight there were some issues going on with another baby in the NICU, a baby I've really come to love and adore, and for some reason, sitting there, holding Charlotte, I felt a tear glide down my cheek. And another. And another. And then, there I was. Crying, in the NICU. We've been there for what, 18 weeks? And tonight, first tear in the NICU.

It's just that, well...

It's just not fair.

There.

I've said it.

It's not fair that a baby so tiny has to fight so hard. It's not fair that a baby as sweet as Charlotte has to experience so much. It's not fair that a laser surgery on her eye seems like no big deal. It's not fair that she'll wear glasses and have vision problems for the rest of her life. It's not fair that there are babies being intubated and there are mothers wondering when the antibiotics will finally kick in. It's not fair that we have to have crash courses in chemistry, biology and human anatomy. It's not fair how much I know about the respiratory system, the circulatory system, the digestive system... It's just not fair.

And of course, over walked Charlotte's nurse and for an evening, she was my nurse. She asked me what was going on-- she agreed that yeah, life kinda kicked Charlotte in the face. She told me to cry, to complain, to acknowledge our blessings-- and then, ever so tactfully, she talked about her siblings and her family. She laughed with me when I told her about my siblings and family, and most importantly, allowed me to move on. She acknowledged and then prevented me from wallowing. I left the NICU with a smile on my face and with a genuine peace.

Sometimes, I need a good cry. Sometimes, I need a good laugh. And I'm ever so grateful that tonight someone was there who knew how to handle both.

These Days

Charlotte weighed in at 3020 grams last night.
That's THREE kilos.
That's huge.
That's also 6 pounds, 9 ounces.

We get to see our little one one like this two hours a day.
Today, they increased it to two hours, two times a day.
Four hours total per day on nasal cannula.
You can shout, "Hurray!" We did.
And it was LOUD.

Charlotte, with her Physical Therapist, Deb.
Deb does Range of Motion, Stretching Routines,
and my personal favorite, massage therapy.
Charlotte (usually) loves Deb.
I do, too. All the time.

And this is the "Are we really still at the NICU?" expression we both have once in awhile.
OK, more like every.single.night.
We're working on it.

That's all.

My First Day Home

This is my first post about our little girl. So far, Peter has been doing all the reporting and I'm not sure what is about to be written, but it just might be a big mess of word vomit. Consider yourself warned.

I left the hospital today without a baby. Caleb asked to see the baby in my belly today and it was hard to find the right words. How do you tell a two year old that the baby is no longer in Mommy's belly, but rather is in the hospital? How much does he need to know and how much can he really understand? I'm sure these are questions we'll figure out along the way, but they're our first venture in the land of balancing a child at home and a baby in the NICU.

Originally we had intended on using Charlotte Amalie, and having her go by Amalie. Since her first name in the hospital is Charlotte, everyone there calls her Charlotte. Family still calls her Amalie (or Molly for short). So we're kinda in a limbo land as to what her name will actually be.

Her actual condition is as follows:

Charlotte Amalie weighs 550 grams today. That's only a 10 gram loss from birth.

She's on the CPAP machine, at about 40% Oxygen (room air is about 22% O2). This means that about 20 times a minute a puff of air (that is 40% O2) is pushed through the CPAP into her nose. It helps her to breathe, but it's not breathing for her. The ventilator is a tube that goes down her throat and actually breathes for her. She went off the ventilator after only a day, which is fantastic. The CPAP makes her work harder, and she doesn't have as great of "stats" on the CPAP, but she's breathing and the CPAP is much better for her long term. There are a lot of complications that come from being on the vent for too long, so every day she is not on it is a good day. She'll probably go back on it eventually, but that's just part of this roller coaster.

They also started her on some medication to close a valve in her heart today. She has what is called PDA (Patent Ductus Arteriosus). They can close this valve with medication (very fancy-- it's motrin) but sometimes it requires surgery. They'll echo her heart again in three days and see how the motrin is working and from there they will decide if they want to try another round of medication or if she needs to go in for surgery. The good news is that she's not having any physical presentations of the open duct (rapid heart rate, blood pressure changes, etc)-- they were just able to hear it on physical exam. So hopefully her body will continue to work properly and the medicine will close the PDA easily.

She started taking breast milk last night and so far she's getting 1 mL every six hours. I know, she's gonna be huge :)

Tomorrow we meet with her doctor, the nurses and a case manager in the NICU to go over her care. They'll give us a basic outline of what to expect and when and we'll be able to ask questions and get to know the team better.

That's all folks.