Wednesday, March 23, 2011

Really? Again??

Ok...this is going to be a quick post to keep everyone updated. Many of you may already know that Charlotte gave us a little scare recently. Her color has gradually gotten worse and worse over the course of the last week and yesterday when I picked her up at daycare it was about its worst. I hooked her up to the sat monitor and low and behold....64% Yikes. I texted Dr. Sami's nurse (bless her for giving me her cell!) and within an hour we had home medical people at our house setting us up with home oxygen. Her sats responded wonderfully, much to our relief, but keeping a nasal cannula on a 10 month old is no easy task!


8:30 chest xray at the hospital
9:15 appointment with Dr. Sami followed by an echo (gulp!)
11:30 appointment with our newest doctor, Dr. Will (Wilfredo Veloira), a pulmonologist

First things first, Charlotte's echo looked great. The valves that were placed in January are still intact with no identifiable leaks. There hasn't been any real growth of her right ventricle, but thats no real surprise at this point. We knew that growth would take time, and in all honesty, she has been fighting so many other bugs lately that she really hasn't had much for reserves. We were just thrilled that everything was working the way we planned! Maybe now I'll be able to sleep at night!

So now to the pulmonologist. Today was the first time that we have met Dr. Will. Nothing like adding another doctor into the mix! After Dr. Sami looked at Charlotte's chest x-ray he thought that we could benefit from his opinion. On the x-ray they see some things that lead them to believe that he lungs have never really fully recovered after being on bypass....more than likely do to the havoc that RSV had on them. There are still some areas of inflammation that we need to get settled down before we see her sats go back up. I was concerned that these might be permanent changes within the lung, but they assured me that everything should work its way back to normal given some time.

The plan? Since this seems to be something more respiratory related (so much junk still going around) we're going to do the following...

Inhaled steroids x 2 weeks
Antibiotic x 5 days (snotty nose/red ears)
Oxygen at nights for at least a week, during the day depending on her sats
Increase her diuretic to hopefully help the lungs recover more quickly
Follow up with Dr. Will in 2 weeks, Dr Sami in 2 months

Our life is NuTs as always, but we are reassured by todays visits. Hopefully the interventions above will get us on the right track and we'll have a happy, healthy little Chuck in no time! Thanks for all of the prayers! Now this mommy is going to take a nap.

Sunday, March 20, 2011

The Great Outdoors

About mid-way through our Sunday I went to let the dogs out and realized how NICE it was outside. First Charley and I went on a stroller ride, then we sat in the backyard and watched our crazy puppies burn off some energy. There is a lot to be said about FRESH AIR!

Wednesday, March 16, 2011

Show Us What You've Got, Baby Girl

Today was an eventful day for Miss Charlotte!

Adventure #1...A trip to the pediatrician! The past couple of days Charlotte has been doing a whiney sort of cry and rubbing her ears a lot. After a quick trip to the doctor with Daddy it was determined that she doesn't have an ear infection, though there was a small amount of fluid in her ear. They told us to just keep an eye on her for now, but there is no indication that she needs any treatment. GOOD NEWS...we don't need any more meds!

Adventure #2...A visit from the South Dakota Birth to 3 Program. This is a state run program that provides free screenings and services to children who are disabled or at risk for developmental delays. When we first came home from the hospital we were referred to the program. They came out when she was 2.5 months old, but at that point there wasn't much to evaluate.


Basically, a woman came out to our house and played! It was great! Charlotte was leery at first, but warmed up fairly quickly. After the evaluation we learned the following--

  • Social/emotional development is right on track. I think it melted the woman's heart when midway through the evaluation Charlotte leaned in and gave me a kiss! Ok, melted mine a bit too!
  • Verbal skills, which I thought might be behind average are also right on track for the average 9 month old (they evaluate her from her due date since she was 3 weeks early). She showed off her "dadadada" skills and her excellent lip smacking. During the next few months we're hoping to hear some other letters (hint hint mmmmmmmm) come into the picture!
  • Fine motor skills are EXCELLENT! The evaluator thought she could trip her up by offering her a itty bitty Cheerio....silly lady! Charlotte picked it right up with her thumb and pointer finger and proceeded to immediately hand it off to her other thumb and pointer.
  • Last but not least....gross motor. I was nervous about this one. We know that she's behind in this area, but just HOW behind we weren't sure. You see, between surgery and a wound vac, Charlotte spent little to no time on her belly for the first 2 months of her life. We had just gotten her comfortable with tummy time again when it was time for another surgery. Now she just flat out hates it (unless she's sleeping)! this point, Charlotte isn't considered "delayed" but is on the low end of where they would like to see kiddos her age. She isn't getting into a sitting position on her own or pulling up to a standing position, and when she does stand, she's quite wobbly.
The woman was great and gave us some pointers on things to work on and how to get her to "practice" the things she is lagging behind on. While I thought it was great, Charlotte will undoubtedly see things differently! We are going to work with her at home over the next 2-3 months and then they will come out to check on her progress. If at that point she isn't making steps in the right direction, they will make a referral for a full PT evaluation.

Something about this visit made me emotional...
Its not a sad emotional because of her delays...not at all.
Its a happy emotional. Sometimes I get so wrapped up in all of the little things that keep our life so crazy that I forget to just sit back and soak in all of Charlotte's accomplishments. She is learning so many new things and I am one PROUD mama!

Tuesday, March 15, 2011

Boxed In

Has this long cold winter left you feeling "boxed" in?

Are you tired of being trapped inside because of the germy cold and flu season?

We feel the same way. Boxed in...Literally.

Ok, so maybe this boxed in isn't so bad, but being confined to our house because of cold temperatures and trying to keep Charley healthy is officially taking its toll. I've got spring fever, Matt keeps practicing his golf swing around the house and Charley...well...Charley will actually be old enough to enjoy the weather this year! The good news?? The weather is starting to warm up and we can finally see our grass again (even though its pretty brown.) Yes, I know that we're still a ways out and bound to get one last good snow (it is South Dakota after all), but Its only a matter of time before we can officially shake that boxed in feeling!

Monday, March 14, 2011

Double Digits

TEN MONTHS??? You've got to be kidding me! It feels like just yesterday I was snapping pictures of a 9 month old on Valentine's day. I just cannot believe how quickly time is passing, and as the weather starts to warm up, I'm sure that it will continue to fly by.

Baby girl,

Happy 10 month birthday! Last year at this time we were just starting to put your nursery together...its crazy to think back how far we have come.

Its been a busy month and you continue to soak in the world around you, learning more and more every day. Daddy and I are realizing just how smart you are (not that we ever doubted it!)

This month....

-was full of the sickies--RSV and a tummy bug--but it started healthy and ended healthy so thats all that we can ask! I'm hoping that we're in the clear for the rest of winter and that warmer, virus free days are in our future.

-You are still working on standing. Its not your favorite, but its getting easier with practice ...and mean old Mom makes you practice A LOT!

-You are still toothless, but that doesn't stop you from trying new foods. You gobble up shredded cheese and go to town on graham crackers. Yum Yum!

-We convinced you that Pediasure was better for you than whole milk. Not only does it taste like yummy vanilla, but it has WAY more calories and vitamins. Your weight took a hit this month since its hard to eat when you are sick, but we're making up for lost time now! Mommy wants to eat you up with your sweet vanilla breath!

-You started to smack your lips...such a goofball! It is SOOOO cute (especially when you realize that you are being silly.)

-You kiss everything. Mommy, Daddy, Maybe the beagle, toys, Mommy's hands...quite the lover!

-You laugh all of the time! Its a silly laugh and reminds us of a combination of a monkey and a dolphin. I love my crazy "dolphkey" baby! When you're not busy laughing, you say "dadadada." While I agree that he's pretty cool, I don't think that it would hurt to throw a "mamama" in from time to time!

Your personality is now in full force and your smile is infectious. I'm grinning ear to ear just thinking about it!

We love you Bear!
~Mommy and Daddy (Maybe and Stella, too)

Saturday, March 12, 2011

Bring on the Sun

I've been a bad blogger. I realize this. And when I do blog, I feel like all I've been doing is moaning and groaning about how *ICK* things have been lately. But the truth is, we DID go through a very *ICK* couple of months. Surgery, eating struggles, RSV, stomach bug with puke puke and more I said...*ICK*.

I've been praying for a stretch of sunshine in our lives. A stretch where our little girl feels good and where Matt and I aren't stressed to our limits. A stretch of days strung together rather than a single day here and there, dotted between the *ICK* days.

Well, I think we have finally seen our sunshine. We've been *ICK* free for about 4 days now and Charley seems to be back to her old self. We are seeing more smiles and hearing more laughs (which sound like a weird dolphin/monkey hybrid noise--haha). She's gaining some weight back and eating really well. I feel like we can just sit back and enjoy...

It may be cold and gray outside, but our house is filled with sunshine.

A few days after Charley got out of the hospital--look at those purple lips!
She LOVES her green blankie (just like Mommy). Her hair is nutso because she had been "hiding" under the blanket.
New favorite thing in the world?? Daddy's hat!
Getting ready to go to dinner for Mommy's birthday.
Standing and not crying...quite the accomplishment! Haha! Look at that belly and her little chicken legs!
Bath time is excessive at our house. Lots of water, lots of bubbles, lots of splashing!

Happy early St. Patty's Day!!

Saturday, March 5, 2011

Another Year

Is it tacky to write a blog wishing myself a happy birthday?? Too late! Today I'm officially celebrating the start of my last year in my 20s. What am I doing to celebrate? Well....Matt got me breakfast and a coffee this morning before he had to hurry off to a volleyball tournament. After that I unclogged our shower drain and am doing laundry. Exciting, huh?! Might sound crazy, but I'm loving it. After spending last weekend in the hospital with Charley, all that I really wanted was to stay in sweats and enjoy being home. The plan is to go out for dinner tonight, but other than that its just a quiet weekend....and I'm loving it.

So I thought I would write a quick update on the Charley front. Last time I wrote she was still in the hospital with nasty RSV. It takes quite a bit to really scare me after all we have been through and the things we have witness in the past year, but an O2 sat of 58 and a purple little chest put me into full panic mode. Lucky for us, she responded well to steroids and oxygen and we didn't end up in the PICU. It was a long 5 days of trying to entertain a 9 month old confined to a hospital room, but I'm happy to say that she got to come home on Monday morning. She's still pretty gunky and is getting breathing treatments every 6 hours, but we're home and thats what counts! (A special thanks to Grammy Vicki for coming to help out for a few days. We totally couldn't have done it without you!) Her O2 sats are still a little lower than baseline, but they told us that due to her heart condition she might be fighting this for weeks to come.

We had a hospital follow-up and 9 month well visit with Charley's pediatrician on Thursday. All is good, and while I sometimes feel like she is a little "behind" on her gross motor skills, she is still meeting her milestones. YAY!! She was quite behind on her vaccinations due to surgeries, so *lucky* Charley got 3 big shots that day. Poor girl just can't catch a break--that afternoon she had a fever of 102 and was not happy! Hopefully now we are done picking on her for awhile.

Uh oh....I just heard my cue to cut myself off here. Charley's birthday gift to me today was a 2.5 hour nap! Looks like she finally decided to wake up. Ready for an afternoon of just us girls!

Thanks for all of the well wishes sent to us this week. They are much appreciated AS ALWAYS!