There, I Did It

Here are some pictures from the day she was discharged. Her super fantastic dress was given to her by Peter's grandmother-- isn't it beautiful?

We grabbed a few shots of her with nothing taped to her poor little face right before we placed the NG tube. We'd give her a shot of the nasal cannula and then make her pose, over and over again. She's a real trooper for what she puts up with :)

Caleb was obviously impressed with how important this day was. He slept like this for at least an hour.

It's OK, you can say it. She looks like Peter. I know, I'm coming to terms with it.

And that's our girl.

I keep reminding her, it's OK to be pretty, but it's more important to use your head.

But honestly?

She's just so beautiful :)

Six Months

Miss Charlotte celebrated her six month birthday this weekend, and to make it official, we took her to the pediatrician for the first time today. Nothing like three shots in the leg to get a party started, right? (That's right, folks. We vaccinate. We vaccinate anything that moves. Consider yourself warned.)

Her official six month stats are:

WEIGHT:
11 pounds 1 ounce
Which means:
Official CDC Growth Chart: Less than the 5th percentile (go figure)
Premature Infant Growth Chart: 25th Percentile (woohoo!)
8.9 times her birth weight of 560 grams.

HEIGHT:
21.0 inches
Which means:
Official CDC Growth Chart: Less than the 5th percentile (surprise, surprise)
Premature Infant Growth Chart: Less than the 5th percentile (The NICU docs did say basketball was probably not in her future...)
1.75 times her birth length of 11.75 inches.

Her pediatrician has discussed Miss Charlotte with some of the doctors from the NICU and it looks like the general consensus is that CA is headed towards a gtube. PEG tubes can be placed in a semi-outpatient setting (she will have to be monitored and observed for a bit, but no lengthy hospital stay) and they are not permanent (meaning it can be removed surgically at a later date).

So we'll have a consult with the doctor down at CHOP in the next few weeks or so and go from there.

Otherwise, Charlotte Amalie is doing remarkably well. Everyone in the medical field who meets her for the first time is always commenting on how great she looks and how when they heard she was a 24 weeker, they had expected her to be so much sicker. It's great to hear how well she is doing, despite her feeding and breathing problems.

It helps to have a reality check-- sure, she might have some problems, but she's HERE! She's growing well and making progress. I love days like that.

Someday, I'll actually upload a recent picture of her. But I wouldn't hold my breath if I were you.

It's Not About Us

There have been many, many people we've met along this journey. Charlotte's ups and downs have been celebrated and anguished over by many a person, and all too often those people are some we have never actually met.

Today, Hillary and her family mark the due date of their son Shiloh, who was born to heaven at 28 weeks. He should have joined their family today. Or, he should have celebrated his due date in the NICU. There are a whole lot of "should's" that today encompasses for their family.

This day will mean different things to everyone-- but I hope one thing can unite us. I hope that we can come to understand that our experiences, our trials, our own ups and downs-- they are not about us. We, as individuals, we're not much on our own.

It's how we reach out, it's how we accept that hand; it's contributing to, and taking from, the pool of humanity-- that's what it's about.

Shiloh has moved on, in my belief, to a better place. We honor him by making this world a little more like his world; by helping his family experience a bit of his life within their own lives.

And through that, we make our individual experience so much more than a single life-- we make it a series of connections. A tapestry of lives working together to make a piece of art.

The Report

So here's the Discharge till Today report:

Tuesday Night:

Partied hard in Philly with the girls who threw me a Baby Shower (I have the best friends ever. Just sayin'). Stayed up late because we couldn't sleep. And because we were putting together a changing table. And attaching the car seat adapter to our stroller. And realizing that our super cool car seat is not compatible with our super cool stroller. And spending all night online trying to find the right car seat. We've only had six months to do all this this out, right?

Wednesday:

Wake up, plan on heading to Babies R Us to purchase the correct car seat. Realize that they no longer carry it. Call the NICU. Tell them we're going to be late. Use the iPad to find a retail store that is still in business that sells the car seat (silly recession, you're shutting down all baby boutiques). Drive 40 minutes out of our way. Purchase car seat. Cringe a little at the price. (OK, cringe a lot). Drive hastily to the NICU. Realize we should have fed Caleb at some point. Get him food. Use the iPad to entertain him. Look over and see that he has fallen asleep. Wait for Charlotte to finish her feed. Wait for her to digest her feed. Wait for the NICU to calm down for 30 seconds so we could learn how to place the NG tube. Take a walk to the vending machine to feed Caleb more cookies. Realize that we will pay for this later. Take pictures. Place NG tube. Leave the NICU. Look at each other and say, "Umm, is this really happening?" Try to fit all of Charlotte's monitors in the car. Cause a traffic jam in front of the hospital. Ignore traffic jam, enjoy moment of family being together. Drive home. Try to bring Charlotte's stuff out of the car. Realize she has a lot of baggage-- literally. Wait for nurse to show up. Wonder why in the world they thought we were capable of this. Nurse shows up. Thank our Father in Heaven. Sleep.

Thursday:

Give Charlotte medicine. Give Charlotte food. Clean up from food and medicine. Give Charlotte more meds. Oops forgot to give her that medicine. Mix more food. Give Charlotte food. Has anyone seen Caleb? What time is the nurse coming again? 12 more hours? OK. Not OK, nurse called off. We can do this right? Leave Peter at home with both children to run errands. Come back. Save Peter. Why is she desat'ing? Why is she in the 70's? Start getting nervous. Call NICU. Realize we're not very intelligent and that Charlotte needs to actually be hooked up to the oxygen to receive any benefit from it. Hook up oxygen. Watch Charlotte pink right up. Watch her all night. Listen to alarms ALL night. Try not think about how much tomorrow will hurt after a night of no sleep. We wanted her to come home, right?

Friday:

Clean baby puke. Bathe Charlotte. Crap, she just puked again. And again. Wake up Peter. "Your turn." Wonder if the NICU takes returns. Remember that Jill specifically said, "No returns." Darn. Call NICU again. Plan to take Charlotte back to hospital. Know that she needs to poop. She won't poop at home, hasn't since before she was discharged. Peter notes that all moms pay too much attention to baby poop. Acknowledge he is correct. Take Charlotte to hospital for chest xray. Charlotte feels more comfortable. Charlotte poops. Charlotte stops puking, stops desat'ing. Peter acknowledges poop is sometimes important. Come back home. No nurse again tonight. Did you give her those meds? I need a chart. Make chart. Feel much better. Snuggle with Caleb. Put Charlotte down to bed. Smile because my kids are so flippin cute.

Start blogging.

And that brings us to this moment. So far, Charlotte: 3647, Us: 0

Pretty much everything is as to be expected.

Home

Our baby came home on Wednesday. We've been running around like crazy since then. I do plan to write a post about the day and how everything went, but that will probably happen late one night. For now, I present you with Charlotte's first picture in her home:



That about sums it up right now.

Last Time

Dear Charlotte-
I woke up this morning knowing that this was the last time I would get ready and head into the NICU. It's the last time I will have to call Chester County to see how you are doing.

It's the last time I'll be able to take a shower without checking on you, the last time I'll be able to make breakfast without feeding you first, the last time I'll wake up and not have my daughter downstairs.

Of course, we recognize that there may possibly be more hospital stays in your future. We hope not, but we know its a possibility. But when those hospital stays happen, I'll be able to tell the intake coordinator, "She lives at home."

It's the sweetest sentence that has ever been written.

This morning is the last time you won't be living at home.

I wish I could write to you to help you understand what that means to me. But, baby girl, there just are not words for this kind of emotion. Love. Excitement. Anxious. They all skirt around the bigger picture. And maybe it's because it's more about "firsts" than it is about "lasts."

This afternoon will be the first time I bring my daughter home. The first time my husband, my son and my daughter will all be under one roof.

The first time for the beginning of everything.

Little girl, have a good last morning in the NICU. Get your goodbyes in. Tell them how much you love them, how much they mean to us.

And then get ready.

Today is also your first day home.

Love,
Momma

We Have a Date

I've been rather nervous to actually put this up here, because I'm afraid of angering the NICU gods or something... but we do have a date for Charlotte to come home.

Wednesday.

This Wednesday. August the 25th. 26 weeks after she was born-- she's coming home.

We're meeting with the home care nurses today (Miss Charlotte gets nursing care for 8-10 hours a night) to plan out the best place to set her up and such. We're making our last minute runs to the store, we're stocking up on anything we can possibly stock up on, we're freaking out just a bit (well, really, I'm freaking out-- Peter is, as usual, unphased).

Can it be true?

I'll believe it when she's in the car and we're pulling away from the hospital.

But, really, truly, as long as all her monitors/NG tubing/bags/pumps/oxygen/nasal cannulas/etc arrive on time, Wednesday night, she'll be sleeping at home.

2 Months Adjusted

Charlotte--

Today you celebrate your two month adjusted birthday. You're pretty lucky in that regard, most kids would give anything to have two birthdays to celebrate. You're pretty lucky in most other regards as well.

For example:

1. You're coming home.

Soon. Hopefully before Daddy leaves for two months (he flies out on the 29th). He'd love to be there for your homecoming day, so if you could be on your best behavior next week, that'd be great. If not, we understand. It's difficult to behave all the time. Daddy will be there in spirit, with all the love a father can possibly have for a child. You have him whipped, just so you know.

2. Your big brother loves the heck outta you.

He held you today and told all the nurses how beautiful you are. He then sang you Twinkle, Twinkle Little Star (currently, his favorite) and declared that you love race cars. He must think you're A-OK if you like race cars. That puts you on the same level as Uncle Soren, and believe me, that's a pretty cushy place. Caleb talks about you every day. His favorite book to read is "I'm a Big Brother" which we read every.single.night over and over again. Yesterday he made two piles of toys. I asked him what he was doing and he replied, "Just makin' a pile for baby Charlotte. She will get all better and come home to play with me. She loves me." Seriously, girlfriend, your brother loves you lots. And believe me, as someone who knows, there's nothing like having a big brother who loves you.

3. You're doing well. Scratch that. You're doing remarkably well.

A new baby has joined the NICU. A baby who came just about as early as you did. This baby was supposed to have a sibling come into the NICU with him, but his twin was born to heaven and is watching over him. I gave his mother a "welcome to the NICU" bag today and she asked how you were doing. With tears in my eyes, I replied as honestly as I could. "She's doing great," I said. I meant it. You are thriving baby girl.

You're thriving. You are two months adjusted and you're thriving.

We're all lucky in that regard. Luckier than we'll ever really know.

With all my love,
Momma

Yumm Yumm

Peter's first time feeding Miss Charlotte.
Sunday, August 15, 2010

Weight: 4.495 kilos, or 9 pounds, 14.6 ounces

Lungs: Down to 1/8 Liter on oxygen, 100%. This is VERY VERY do-able at home. We're talking about HOME here people. Get excited!

Feedings: Miss Charlotte is taking about 30-45 mL two or three times a day from a bottle. She's wiped out after feedings, and I can't blame her-- the stuff she has to suck through a nipple is pretty darn thick. It takes a lot of work. She has been weaned down on her rocket fuel as well-- only 24 cal/ounce now, and she's off the hospital-grade fortifier (Human Milk Fortifier, HMF).

Home: We'll meet with her doctor on Thursday to determine the details of how/when/what/YIPPEE!! of her coming home. She'll most likely be coming home on both NG (through the tube) and PO (by mouth) feedings, and she will probably require some amount of oxygen. Where we are going to fit all her accessories is beyond me. What happened to babies not needing anything but diapers? Once she comes home she'll have weekly weight checks (for a bit, not forever) and visits from Physical Therapy, Occupational Therapy and Speech Therapy once a week. She'll also follow up with the developmental clinic at Chester County Hospital, where they will teach her the wonders of being a baby: how to roll over, how to sit up, how to crawl, etc. And last, but not least, she'll follow up with the Speech Therapists at CHOP to evaluate her feeding progress.

She's gonna be a busy girl!

Transport Take 2

Something tells me they didn't have Charlotte in mind when they designed the transport crib. She's a tad bit big for it.

Thanks Y'all

I have to say thanks for everyone's support this last week. My huge emotional breakdowns are usually only something that Peter sees, so I hope you all enjoyed the show :)

As frustrating as the lack of coordinated care was at CHOP, I have to give credit where credit is due, and say that the nurses and speech team at CHOP were fantastic. It was difficult to have a different nurse every day, but each nurse was considerate and focused. But let's be honest-- they just didn't love her as much as her CCH nurses and that's hard.

And the speech team, once we were all on the same page, was great. They were focused and excited for her progress. We will be having another swallow study done in eight weeks with her speech therapist, and I'm genuinely excited to see them again.

Again, thanks for the support. This whole ordeal is getting old. Someone please tell Charlotte we're all ready for her to come home. Thanks!

quick update

Well, she is on the move again... At the family meeting today we found out that Charlotte was being transferred back to Chester County Hospital tomorrow. It is strange that we are excited that our child is leaving the top rated pediatrics hospital in the country for a very modestly sized hospital in the suburbs. Mostly we are just happy to be able to avoid the 3 hours of travel time that going to CHOP required each day.

We fed Charlotte with a bottle today for the first time, day 165 mind you. Better late than never I guess. They are really starting to talk about coming home which is pretty scary.

Tonight

Tonight, I'm Grateful.

I'm grateful for people who care, for others who understand, for those who have sacrificed so that Charlotte could receive excellent medical care.

Tonight, I'm Reliant.

I'm relying on others to watch over my daughter, to feed her a midnight snack, to tuck her into bed.

Tonight, I'm Restless.

I'm restless for answers, for goals, for nights of rocking my baby to sleep-- at home.

Tonight, I'm Weary.

I'm weary from the waiting, the worrying, the wondering.

Tonight, I'm Hopeful.

I'm hopeful that we'll have answers, that answers will turn into results, that my son and daughter will fall asleep under the same roof someday soon.

Tonight, I'm Humbled.

I'm humbled by acquaintances who act more like family, by nurses who act more like friends, by friends who act more like angels.

Swallow Study

Today was Charlotte's swallow study. There were several different factors that they wanted to test, and the combination of said factors resulted in a lot of different possibilities. So here's the run down:

*The thickness of the liquids goes from least thick to thickest

Sideline Position, Nipple Flow #2:
(Best position for Charlotte to avoid aspiration, Slowest Nipple flow)
1. Formula- Visualized Aspiration
2. Simply Thick Nectar- Visualized Aspiration
3. Simply Thick Honey- No Visualized Aspiration

Sideline Position, Nipple Flow #3:
(Best position for Charlotte to avoid aspiration, challenging her on the rate of flow)
1. Simply Thick Honey- No Visualized Aspiration

Cradle Position, Nipple Flow #2:
(Challenging position, Slowest Nipple Flow)
1. Simply Thick Honey- Visualized Aspiration

Once a "thickness" showed aspiration, it was ruled out, so all the "challenges" were done with the Simply Thick Honey.

While it's disappointing that Charlotte is aspirating while swallowing, it is encouraging that she has some starting point for orally feeding. Many, many, many 24 weekers don't have that luxury, so we're very grateful to have this chance at bottle feeding.

I'm slowly coming to grips with the fact that I'll never be able to breastfeed her (I had really been hoping that breastfeeding could be our one *normal* thing together) but again, I know of many babies born as early as Charlotte that don't orally feed at all, so I can't complain too much.

We have a family meeting scheduled for tomorrow, and we'll discuss our options-- whether or not we'll go forward with oral feedings or not at this point, and when/if Miss Charlotte Amalie will be transferred back to Chester County Hospital.

Send some CCH vibes our way!

Open Wide

I believe she is saying,
"Feed me PLEASE!"

Weight: 4.25 kilos or 9.3 pounds

Lungs: Miss Charlotte is down to 26-32% O2. Still on 2 liters.

Feedings: Apparently, I need to have a melt down more often. Charlotte seems to respond to my hysterical rantings. Friday morning, Miss Charlotte took 22 mL from the bottle. To be fair, they had to thicken her milk significantly, and they had to try several different nipples to find one that worked, but it seems as though they have found a concoction that Charlotte can take without aspirating. Our next hurdle is helping her to get "in shape" enough so that it doesn't completely wipe her out. Currently, her milk is thickened to a "honey" consistency, so as you can imagine, it's pretty hard to suck down a bottle of it. (The thickness scale goes, breast milk, formula, nectar, honey). We have a swallow study scheduled for Wednesday afternoon, and they will try formula, nectar, and honey-- apparently straight breast milk is off the table, it's just too thin to safely try with her.

The Plan: Charlotte is doing so well, and is making such great progress. The current plan is to have a swallow study Wednesday and then not next week, but possibly the week after that, transfer her back to Chester County, where they can continue with her feeding plan until she shows that she can do it on her own. How long that will take, is the question.

Hopefully after that, her next transfer will be home :)

One of *Those* Days

Often I hear people comment, "I don't know how you do this!" or "You look like you're handling this all so well!"

Enter yesterday.

CHOP's team is decidedly much slower at things than Chester County. MUCH. SLOWER.

The Speech Pathologist at CHOP was talking yesterday about waiting another 3-4 weeks before doing the swallow study. Her concern is that we want Charlotte to have the best possible outcome from the swallow study, so we can see her real potential. If right now, she were to have a "bad" swallow study, everyone would be like, "well, that's what we expected," and not much would change. Giving her more time would allow her to {A} grow and {B} practice more with the bottle.

So I get that. However, the whole reason we were transferred down to CHOP was to have the swallow study done, like, you know, before she starts walking. Why am I taking a train into Philly every day, when she could growing and practicing at CCH?

So then, the Fellow comes in and is like, "I think we might transfer her back to Chester County. Let's do a swallow study on Wednesday and transfer her back on Thursday." To which I say, "Fantastic!" Except, of course, if she needs a surgery of some sort, then its ANOTHER transfer back to CHOP. If she is ready for a swallow study to be transferred back, why isn't she ready for a swallow study to get her on the path to coming home? Why all the transferring?

Pull yourself together here CHOP. Make a plan. DO IT.

And then of course, in true "I'm in charge here, you're just along for the ride" Charlotte-fashion, she brady-desats (Heart rate and oxygen saturation drop) while "eating" her 2-4 mLs. 2 mLs? Charlotte, seriously, time to pull yourself together here, too.

END RANT.

It was just one of those days.

So what's the plan? The current plan is to pull myself together and make a plan with the CHOP team. Is she going back to Chester County? Is she staying at CHOP? What's our goal? I'm no longer sure of what her requirements are to come home and I think that's where we need to start. I KNOW no one has a crystal ball (right? No one has one of those, right?) so we can't have a schedule-- but I think we can have a goal.

I'm hitting a wall here, and I know, this is going to happen by day one billion in the NICU (OK, more like 155 or so, but still...).

I feel as though I needed to show you how NOT put together we can be :)

So you can all stop being impressed and come over and eat chocolate with me. Much better.

See you Monday.

Where Did I Go Wrong?

When both of your children have been taped to a table at CHOP, somewhere, something went wrong.

Just sayin...

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!)