Mark Your Calendars!

I got a call this morning from the cardiology office in Omaha...

We've been waiting to hear from them, but at the same time, were perfectly content with keeping our distance!

Little Miss Charley is scheduled for a diagnostic heart cath on December 10th at 10 AM. When they conferenced on her last Monday, it was decided that they wanted to go in and get a better look at things than they can get from an echo. They will be able to measure pressures, check the size of her right ventricle...and overall, just get a better picture of whats going on in there! From there, decisions will be made on whether we need to move ahead with her next surgery or if she can continue to hang out for a while longer. Its still 3 weeks away, but I'm sure that it will be here before we know it. Big prayers.

Charley had her first Synagis injection yesterday. This is a shot that she will get monthly from now until March. I'm sure that most of you have heard of RSV....well, if most kids get RSV, their symptoms are like a bad cold. Charley on the other hand, could get really sick because of her heart defect. Synagis doesn't necessarily prevent her from getting RSV, but is intended to help prevent her from developing any severe respiratory problems because of it. A home health nurse came out to our house to give it. I was so glad that we didn't have to drag her to a clinic and sit in a waiting room full of sick kids!. Funny thing....her nurse's name is Charlotte...and she goes by Charley!

Other than that, nothing too wild and crazy going on here. Matt had to go out of town unexpectedly on Wednesday afternoon, so it has just been us girls the past couple of days. We REALLY miss him and can't wait until he gets back tomorrow evening.

We'll continue to keep you posted!

Happy Half Birthday!

Today is a good day. A day that at one point felt unreachable. A day that marks a HUGE milestone in our house.

Happy 6 month birthday, baby girl! I have no idea where the time has gone, but I am thankful for every single minute of it. Every minute. I have learned more in the past 6 months than I have in the past 28 years and loved more than I ever imagined possible. Your grins melt our hearts. Your giggles make our day. You truly are a blessing.

Everyday is a new adventure little Charlotte. You teach us that every day. Your Daddy and I are having so much fun watching you grow and learn new things...which you seem to be doing a lot of lately!

In the past month...

-You officially graduated to a size 2 diaper! Such a little peanut.

-You LOVE trying new foods. So far your favorite seems to be carrots, but you also like sweet potatoes, peas, peaches and apples. One thing you don't like is bananas. They taste good, but don't make your tummy feel too hot!

-You started playing with your hair. Its the cutest thing, but can get a little messy at dinner time!

-Bath time is your favorite! (Maybe that's why your run your pea covered fingers through your hair...) As soon as you hear the bath water running, you are all grins and kicking legs. You just recently figured out "splashing" but don't like when the water gets in your eyes.

-You made your first late night trip to the emergency room and had your first overnight hospital stay since you were at Children's. The doctors say that you had croup, but Mommy blames the pesky bananas!

-You still love watching football with Daddy, but your new favorite is the Mickey Mouse Clubhouse. The bright colors and singing instantly grab your attention. (Between you and me, I think that your Daddy likes it too! He even does his very own "Hot Dog" dance! So silly!)

-You can sit like a big girl! In just the span of a week you went from needing LOTS of support to doing it all on your own. You have a whole new view of the world and seem to love it.

-I wish that I could say that you are a good sleeper, but I would be lying. Although, you seem to be less interested in a paci at bedtime, so that's a step in a good direction. That means no more late night trips for mommy to "plug you in." We'll get there....hopefully sooner than later!

Ok....I had totally completed my "list-making" above, but apparently I have an over-achiever on my hands who didn't think the list was long enough. I left her alone laying on the living room floor playing with some toys while I ran to the bathroom. Low and behold, I came back and she was on her belly, arms stretched out in front of her, still playing away without a care in the world! Better add it to the list...

-You learned to roll from your back to your belly! I didn't see you in action, but you got there somehow!

Melt My Heart

Crazy bed head...

Carrot stained mouth...

Sloppy drool chin...

Big beautiful eyes...

Yup, that's our girl!

Croup?? That's Bananas!

As many of you may know, Miss Charley hit a rough patch this weekend. We were enjoying a low key weekend at home and everything was going pretty smoothly. Happy baby, good eater, decent napper...all in all, nothing to complain about. I gave her a bottle around 4:30, followed by some bananas around 6:30. Charley is really starting to get a hang of the solid food thing and can't seem to get enough. Around 8:15 I tried to give her a bottle before bed and she simply wanted nothing to do with it. Rather than fight it, I decided to just lay her down...or should I say try to lay her down. She just couldn't seem to get herself comfortable and it was about an hour and a half before she actually fell asleep.

Fast forward to about 11:00...I woke up to a crying Charley and figured that she had to be hungry. After all, she hadn't had a bottle since 4:30. I tried to feed her and that just made things worse. It was then that I noticed that she was really breathing strangely. Even after I got her settled, she was really wheezy on inhalation. My initial thought was that she was just really worked up from crying and I didn't really think twice about it. However, because I'm paranoid, I brought her in to bed with us so that I could keep a closer eye on her. Well, the breathing just got worse...almost like she was gasping for air. We knew something was wrong, so we packed up and headed to the ER.

Let me tell you, if you want quick service in an ER just tell them that you have a baby with a heart condition in respiratory distress! We were whisked away to a room and Charley was stripped from her jammies and surrounded by people in no time!

I'll spare the details, but they gave her some steroids and a breathing treatment in the ER and then admitted us to the PICU overnight for observation. It was a LONG night. First off, Charley sleeps on her left side at night...same arm that they started her IV line it. Add that to the fact that she was hooked up for full cardiac monitoring with what felt like 100 wires, and you had one uncomfortable little lady. I think that she got maybe 3-4 hours of sleep total that night, with mom and dad only getting 1 or 2. Final diagnosis??? Croup.

Now, at the risk of sounding kinda crazy, I'll share my diagnosis. Hear me out.

Like I mentioned in the beginning of this post, Charley is LOVING solid foods. About a week ago we started experimenting with bananas. Around that same time I told Matt that her poopy diapers really looked like they did with the whole SOY debacle. I didn't really give it a second thought though and we moved on to sweet potatoes the following week with no issues. Saturday night was the first time that she has had bananas since.

She was totally asymptomatic until after the bananas.

She didn't have a "barky cough" that is croup by definition.

I totally think that she had an allergic reaction to bananas that caused her throat to swell. I'm even more convinced of this because ever since we came home she has been dealing with the same "detox"-like symptoms that she had with milk and soy. Her tummy churns. She cries when she poops. She just seems uncomfortable.

They can call it croup if they like, but I'm pretty sure that Charley won't be getting bananas again for a LONG LONG time.

She is doing much better today. I stayed home from work as I knew she would just be a terror at daycare (not to mention my need to catch up on sleep!) We had a rough start to the day, but she's napping now and seems to be feeling a little better. I even managed to get a big grin out of her. Hopefully we continue in this direction.

A game of numbers

5 weeks

+

21 days

+

13 POUNDS

=

1 SITTING BABY!!

Pictures Galore

I don't have a whole lot to update on, so I thought that I would just share some pictures instead!

Charlotte is grand baby #6 on the Goeser side. No offense to the Rockows or Musils, but we think that her outfit today pretty much sums things up! (Thanks NamNam!)

While we're showing off gifts from NamNam...

Here are some more pictures from her "photo shoot" last weekend. Our neighbors had a nice little fall set-up, so Grandma Debbie and I teamed up to get some good shots.

We got that flower in 8 different colors...LOVE IT!

This isn't a great picture, but it shows what we were dealing with! Charley isn't 100% stable at this point. It was better when she fell to this side, because when she went to the other side she got a face full of dirt!

Still "patiently" waiting for Monday to come and go. Part of me can't wait to hear what the Omaha group has to say, the other part dreads it! We'll keep you updated as we hear anything.

Echo echo echo....

I hate echo days. It's all that I can think about.

Will Charlotte sit still long enough for them to get a good look at things? What will they see? Will the right side of her heart have grown any? Will her shunt still be working well? Can we hold off even longer for surgery? Will something be wrong?

UGH.

Well, at 12:45 today I got my answers.

Yes, Charlotte was really good for the most part. I gave her a bottle right before hand and that seemed to hold her over. She got a little restless at times, but it was pretty easy to distract her so that they could get pictures of everything they needed.

As for her heart. It was another good report. Things still seem to be holding up well from her first surgeries. The echo did show that she is starting to grow out of her shunt....which we kind of expected since she is double the size that she was at the time of surgery. Luckily, she does have some blood flowing out of her right ventricle, so her O2 sats have stayed really good to this point. Dr. Sami did say that it doesn't appear that the ventricle has grown any since her last echo 2 months ago. This isn't bad news...but for some reason it feels like it. After our last visit when he DID see growth, I felt like I was on top of the world. I just KNEW that this time it would be the same...that we would be even closer to them telling us that Charlotte could in fact have a whole functioning heart. And again, as many times as I tell myself not to get my hopes up, I still do.

So the plan is for Dr. Sami to present Charlotte's most recent echo to the surgeons and cardiologists at Children's next Monday to see how they want to proceed. They could decide that they want to do a heart cath to get a better feel for what's going on inside that crazy heart of hers. They could decide to let her keep hanging out since her sats are still good. We'll just have to wait and see. Needless to say, its going to be a long week of waiting.

Big prayers....