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.

Post-Op

lksdfmadnsfpio;asdm,nasdf

That's about how I feel right now.

Charlotte's surgery on her left eye went well. She was a fighter and they had to give her more meds than they thought, but hey, what do you expect from her?

Charlotte's surgery on her right eye, not so much. "What?" you say? "I didn't know she was having surgery on her right eye, too." Yeah, neither did I.

Apparently, Charlotte's retina is beginning to retract in her right eye. This causes the center of the retina to buckle, or become detached. There is also the beginnings of edema, or swelling, under her retina. The eye surgeon saw this progression today during the surgery on her left eye and immediately laser "stapled" the retracting part of the retina (right eye) back in place. We're hoping it takes.

He'll check again on Friday.

If it works, it means eye exams one to two times a week, until discharge. If it doesn't work, it means transfer down to CHOP for an eval by CHOP eye doctors. They'll then most likely, remove the retracting part of the retina in her right eye. I won't go into detail, but I'll just tell you, eyes are yucky. Ugh. The description of the eye surgery at CHOP makes me shudder. Ugh. Thank goodness for wonderful eye doctors with stronger stomach's than mine.

I also met with the physical therapist today. She is fairly certain that we will need a swallow study before we begin oral feedings, since it's pretty obvious that Charlotte is aspirating. So yay. We'll deal with that later though.

Moral of this discombobulated post: We'll see what happens on Friday. Hopefully her eye will begin to heal and all this non-sense about going to CHOP will be in the past.

Hopefully.

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.

'Member, That One Time, When I Said...

Remember when I said her left eye definitely didn't need surgery?

Now it definitely does.

Tomorrow.

All by myself.

11:30 AM.

Awesome.

Two choices:
Fetal Position Time
Big Girl Time

Since Charlotte doesn't even know what the fetal position is,
I guess it's time to strap on some boots.

I'll be in the waiting room.
See you there.
(well, technically, I won't see you there, but, uhh, you know.)

PS-
Her vocal chords moved!! Yay for someday hearing her scream ALL.NIGHT.LONG.
However, they still haven't ruled out the need for a swallow study, so we'll get past the eye surgery and then we'll talk about what's next.

Thanks guys-- we'll chalk this win up to all of you!

Big Gulps

Today Charlotte Amalie is supposed to have a quick look down her throat. (I say "supposed to" because we all know how the medical system works-- oh, you don't? Lucky you.) So yeah, it should be today, but might be later this week.

What are they looking for?

The ENT doctor will take a peek and see if he can visualize some movement on the part of her vocal chords.

Why does that matter?

The vocal chords play a role in swallowing. Basically, they cover the respiratory track while swallowing, preventing aspiration.

Why are they looking at Charlotte Amalie?

They are looking at CA for a number of reasons.

First, and of course, LEAST likely has to do with the nerve that innervates the vocal chords. It is pleasantly placed right around the duct that had to be surgically closed way back when. One of the possible side effects of that surgery (the PDA Ligation) is vocal chord paralysis. Of course, since they know that is a side effect, the surgeon goes to extensive means to prevent that from happening, so it's doubtful that her vocal chords are severely damaged.

Second, CA just doesn't make noise. Every now and then, I hear a "ahhh" outta her, but in her four months of life, between me, the doctors and the nurses, we believe we've heard her make a noise approximately 10 times. Now, at 3 am when a new born is wailing their head off, not being able to make noise sounds great. However, we'd kinda like to go to her third grade Winter Holiday Concert and hear her sing in it.

Third, CA has a tendency to aspirate. They're trying to figure out why. Possibilities include a problem with her vocal chords, but it could also be something as simple as, oh yeah, she was born at 24 weeks. Severe prematurity can do a lot of things to you.

Fourth, CA has some nice, friendly acid reflux. Stomach acid can burn and damage the vocal chords.

So... What?

So IF they can visualize a problem, little miss CA will win herself a trip via ambulance down to CHOP for a swallow study. No worries. It won't actually be an emergency (that would be a trip via helicopter) but since she's so needy and all, an ambulance is required. A swallow study entails giving your child something semi radioactive and then taking pictures of where that stuff ends up. If it ends up in her lungs (called aspiration, or micro aspiration) we'll probably be staying at CHOP for a bit. woo. hoo. (note lack of excitement).

So... What?

If you get a chance to say a prayer, or think a positive thought, or light a candle, or help a stranger on the street, or WHATEVER it is you do to help good things happen, we sure could use a win on this one. Peter is gone for the next few months (we'll see him on a few weekends, and he comes home the beginning of November) on away rotations for medical school. Having CA transferred to CHOP, which is the finest of fine institutions, would be super, well, HARD.

Plus, like I said, those elementary school concerts pretty much rock. We'd love for her to be able to sing her little heart out one day.

Good thoughts are needed. Thanks.

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.

Report

Lungs: Charlotte is at a CPAP pressure of 6. The doctors and nurses tried to move her to a 5 today, but she made it quite clear that she was none too pleased with that move. So 6 it stays for another week, or until she shows clear evidence that she's ready to be moved down a notch. She's still on nasal cannula while we hold her, for an hour a day, as long as she tolerates it well enough. Once we hit a CPAP pressure of 5, they will start trying to "sprint" her to high flow nasal cannula FOR REALS. Awesome, eh?

Feedings: Charlotte Amalie is still rocking the ND tube. Rocking it so much that they were able to decrease her rocket fuel to plane ol' jet engine fuel. Normal breastmilk/formula is 20 calories/ounce and for the past 2 months or so, CA has been on 28 calories/ounce (they add "formula" to my breastmilk to fortify it). Yesterday, they moved her down to 26 cal/ounce. We're hoping she'll be on 24 or 22 cal/ounce by the time she comes home. CA is currently eating continuously (reason 48 why the NICU isn't such a bad place-- continuous feeds... all day, everyday. Yum, yum!) and she's taking in 18 mL/hour, which adds up to 14.6 ounces a day.

Weight: I didn't get the exact amount, but CA is weighing in at 6 pounds, 8 ounces these days (another reason to cut back on her calories-- she's getting huge!). She measured 18.5 inches this past Sunday. It's like having a baby!

Eyes: As of last Friday, CA looks as though she will not need any more surgery on her eyes. Her left eye is regressing to a point where it will definitely (I hate that word-- nothing is definite in the NICU) not need surgery. Her right eye is "stable" and the doctor thinks it will regress all on its own. We should have another update in a day or two, and he will continue to watch CA until she is discharged.

Other: Currently, CA is on track to be home at the end of July/beginning of August. But please, don't tell her. She doesn't like to know that she's getting better. :)