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...