Beauty

Is there a better example of beauty than this? I think not.

OK, maybe this... but seriously. How cute is she?!

Here's the latest.

Weight: 4140 grams, or 9 pounds 2 ounces. She has gained 33 grams/day since arriving at CHOP. That's a little more than an ounce a day. She's still on fortified breast milk, 26 calories/ounce. She's also measuring in at 19 inches long.

Lungs: We are officially off High Flow Nasal Cannula! I thought the transition to regular nasal cannula would be more exciting, but really, the only change is that her air is cooled instead of being heated. Kinda a letdown on the excitement factor, but oh well. She's on 2 liters, and her oxygen is set to about 30%, 35% while sleeping. She's starting to have periods of apnea (15 seconds or more of "forgetting" to breathe) while sleeping, which is silly, since she's supposed to be way too old for that. We're hoping she'll grow out of it.

Heart: No changes here. Everything continues to look great cardiovascular-ly. And yes, I just made that word up.

GI: Charlotte Amalie's feedings were moved into her belly today! If she does well tonight, they'll try a small amount in a bottle tomorrow. Speech will evaluate her tomorrow and we'll decide sometime this week if she still needs a swallow study, or if we can push on and try to "teach" her to orally feed. She still has a fantastic suck reflex, so we're really hoping she can figure out the swallow and breathe part of eating. She looked pretty uncomfortable when I left her today, which is kind of to be expected-- she hasn't had food in her belly in a really, really long time, and so I'm sure she feels like she just at a Thanksgiving dinner. Hopefully she'll adjust to it tonight and will be ready for a bottle tomorrow!

Eyes: No real update here. Her right pupil continues to be smaller and slower to respond to light than the left, but the general consensus is that it's scarring from her surgeries. It's hard to not know what her eye sight will be like. It sounds funny, since it's not a life-or-death thing, but her vision is one of the things I worry about the most.

Meds: And just for my record, so I can remember when I read this in the future, Charlotte is still on two different diuretics (Diuril and Aldactone), potassium chloride (discontinued and then started again this week), two different breathing treatments and a slew of vitamins.

Transport

Here are some pictures from the night Charlotte was transported from CCH to CHOP. We miss our station at Bed 6 at CCH. And we miss the pink crib. I'm thinking that we should spray paint her crib at CHOP pink...

Her home for the past five months. She always managed to scare away her roommates.

She looks so comfortable (and chunky... check her out!). Do we really need to move her?

And seriously, is a stretcher that size really necessary?

Andrea, Bobby's mom, with CA. Bobby is Charlotte's BFF. She misses him. I think we need to schedule a playdate.

A Few of Our Favorite People

I'm kicking myself for it now, but we didn't manage to get pictures of Charlotte with all her nurses and doctors.

We did get a few snapshots in. Here are some of our favorite people from Chester County Hospital:

(Dr.) Miss Laura.
Dr. Lasley was one of Charlotte's doctors at CCH. She's awesome. Just sayin'. In the past month, she's been to Africa, went to a World Cup game, went on a Safari, Saved some babies in the NICU, and oh yeah, she's also played in a benefit concert. But that's just this month...

Miss Jill.
Miss Jill spent evenings with Charlotte Amalie. She also has a pretty new yellow Mini Cooper convertible. We think Charlotte could just drive around in that instead of using the nasal cannula. Right?

Miss Lisa.
Miss Lisa is a Nurse Practitioner at CCH and had a baby a few months ago (I know, she even looks good in scrubs. Not fair.) Her baby has the BEST hair I have ever, ever seen on a baby, hands down. It's amazing.

Miss Louann.
Miss Louann is one of the unit secretaries. She's just one of those people I could listen to all day. I love her stories.

Miss Blythe.
Another one of Charlotte's nurses, Miss Blythe held down the fort on weekends. I don't think I ever saw Blythe in a bad mood. Ever.

Miss Loretta.
Can I just say, if I didn't have my own mom, I would want Miss Loretta? So kind, so gentle, so compassionate. Love. Her.

Seriously, I'm so sad I don't have more pictures with the staff there. Just know, Miss Charlotte loves and misses you all.

(And yes, Terri, she even misses the physical therapists!)

See You Monday

My younger sister is getting married on Saturday, so we'll be busy with wedding festivities all weekend (yay us!).

Just thought I would give y'all a heads up.

Before we commence radio silence, here's an update:

Weight: 3.98 kilos, or, wait for it... 8 pounds, 12 ounces.

Lungs: Currently on 2.5 liters of High Flow Nasal Cannula and requiring 30-40% O2. We're hoping she will be weaned to 2 liters this weekend, so that we can move forward on her feeding. The doctors don't want to push her in both respiratory AND feeding at the same time, so that if there is a set back they will know the source of the problem (either feeding OR respiratory).

Heart: Miss CA had an EKG done today and passed with flying colors. Her heart rate might be elevated, but its working just fine. (I love being able to say that).

GI: Charlotte Amalie had a salviagram done today. They basically gave her a few drops of some radioactive fluid and then watched that fluid travel down to her belly through an x-ray-like machine. The report came back: no aspiration. (I REALLY love being able to say that). This means that as soon as she is stable on respiratory support, we'll be able to aggressively start "feeding" her. They had planned on moving her ND tube (food goes into intestines, bypasses stomach) to an NG tube (food goes into stomach) yesterday, but they held off, so now it looks like by early next week she'll get some food into her belly.

Eyes: We were given a card to call an OUTPATIENT eye doctor to have her eyes checked, sometime during the week of August 23. {The doctors still are not confident that she will be an outpatient at that point, but they're hopeful, and so are we. A baby home by the end of August? That would be fantastic.} Anyway, as far as her eyes go, the right pupil is still rather constricted and slow to dilate, so we're hoping it's a side effect from the surgery. We won't know any more about her eye function until this check up, but the last eye exam showed that the ROP was regressing (love that word, too!) and so we're optimistic about her chances of having some vision in her right eye and we're fairly certain she will have full vision (but not perfect vision) in her left eye. Her peripheral vision will be "severely" impacted, but hey, we'll take it.

Any other questions? I think that's about it. Am I missing anything?

We'll see you Monday!

Yummy in my Tummy

Charlotte's feedings are being moved from ND to NG today, meaning they are going to start putting her food back into her belly. She had a milk scan yesterday, which showed reflux, but did not show signs of imminent aspiration. So we'll see.

They'll monitor her closely to make sure she's not struggling with the NG feedings, but it's a big step. The speech therapist wants to give her a day or two to get used to having food in her belly before doing a swallow study, so we're looking at sometime at the end of this week, or beginning of next week for a swallow study.

They've put off doing the brain MRI (a totally routine procedure for babies born as early as Miss CA) until she's on less oxygen support. She'll have to be sedated for the MRI and they don't want to sedated her until she's breathing better "on her own." Since the MRI is not clinically important (the results will just qualify her for therapy and such when she comes home) they don't want to push her on it.

And that's about all I know. It's hard getting used to the new NICU. We LOVE CCH (how many times can I say it?). We really felt like we were part of the team there, and at CHOP I feel a lot more like a bystander. I'm certain CHOP is where she needs to be, and I am so grateful that we have the chance to be close to such a fantastic hospital. It'll take a week or so to adjust, but we'll love the NICU at CHOP soon enough. Right? We will learn to love it, right?

I think I'm just in NICU mourning. Had you told me this five months ago, I would have laughed. But really, I love, love, love Chester County and we miss them. Who woulda thought?

CHOP

So we finally made it last night. The transport team arrived at Chester County around 11:30 and by midnight we were in our way down to CHOP. By 3:30 this morning she was all settled a I wandered aimlessly until I found a bed to sleep in.

This morning the doctors rounded on her and she is already set up to have a milk scan done this afternoon to evaluate her reflux. Her swallow study will probably be done tomorrow or the day after. We'll keep you updated on results and progress. I forgot to bring the camera adapter, so sorry, no pictures for the time being.

Thanks for all the help we've received and for the prayers.

Ok, I really need sleep now... Even I can tell I'm not making any sense.

More Important Things

I was all ready with a post dedicated to Miss Charlotte's nurses at Chester County Hospital, but there are more important things to talk about right now.

I'm asking for more help here people.

Peter's cousin, April, is pregnant with her second child. A baby girl. A baby girl who is due December 8, 2010. A baby girl who will probably make her entrance much, much sooner than that. April's little girl has a chromosomal disorder causing severe complications. The heart is underdeveloped and there is swelling around the baby's organs. Her heart rate has begun to slow down, and it doesn't look like there is much more time before this girl makes a very untimely entrance.

April and her family know that they will not spend this life with their girl. They have friends and family offering support and love, but this sweet daughter will not come home with them.

Please, say a prayer tonight. Give thanks for all that you have.

And then, ask, yet another time, for peace and comfort to be given to a family that desperately needs it. Ask for reassurance; ask that those they interact with will be kind and compassionate. Ask for peace. Ask for charity. Ask for a miracle.

Being at peace with the adversity in our life can be the biggest miracle of all.

And miracles happen. They happen everyday.