Happy Halloween

Happy Halloween Everyone! The cutest pumpkins EVER hope you have a great night! We also have to wish a VERY Happy Birthday to my Grandma...the girl's GreatGrandma Zellar! She turned 90 today and is the youngest, hippest 90 year old that has ever lived! We love you GG!!!!

Reunited...and it feels so good!

The family is back together again! Reagan came back from her vacation to Kiawah and the girls were so happy to see each other! I'll update more later but...we went to the hospital yesterday and everything is looking really good! No leaking of the valve and the echocardiogram and xrays looked great. Believe it or not, we don't have to go back to the hospital for almost 2 weeks. What are we going to do with ourselves?!?!?!?

Not much new around here (ha!)

Can someone please tell this kid that she just had open heart surgery on Thursday? She doesn't seem to know.

You wouldn't believe the change in Riley today. If you didn't see her chest or the loads of meds that she has to take, you'd never even know she had any kind of surgery at all...let alone open heart. The doctors, surgeons and nurses are amazed at this little kid and so are we. We got discharged about an hour ago and she's sleeping in her swing. Yes. I said in her swing. At home. OUR HOME....she's HOME. Already. It's a miracle...amazing and the greatest day ever. Matt and I are a tad terrified that she's so fragile right now and they just turned us loose, but we have been living this now for a few days and know pretty much exactly what to do. I almost could be a nurse at this point. My parents took Reagan out to Kiawah until Wednesday to give Matt and I a chance to get settled here with just Riley (and to maybe, finally get some sleep?!?). We miss Reagan terribly already, but know that it's the best thing for everybody. We'll be back together again soon and she is going to be so excited to come home to her sister.
So...that's our scoop. We are so beyond thankful to the amazing surgeons and doctors and nurses at MUSC. They are our heroes and we love them all so much. I can't wait for Riley to go back and visit them and show them just how fabulous she's doing. (And we're going to be going A LOT....we already have an appointment on Thursday!). Thank you to the rest of you for all of your continued love and support. We are so relieved and happy it's indescribable. We never would have imagined last Thursday morning that we'd be holding her in our arms in our own home on Monday afternoon. Modern medicine is absolutely amazing. (God is too!).

5 days later-can you even believe it?

She continues to blow us away. Now if only she would start to eat...and give us some smiles! We're so excited! What a great way to start a week!!!!

Out of ICU

We're out of the PCICU!!!! WOOHOOOOOO! We have our own room now and Matt calls it the deluxe suite. It actually has a couch for us to sleep on instead of just a chair...it's not that bad at all! I slept with her last night and Matt's taking over tonight so that I can get some sleep at home. The couch is nice...but it's not very easy to sleep around here. They come in every hour to check vitals and then are in constantly with different meds and changing things around. Riley slept really well though and I'm so happy about that!!!!
She's doing so well....it's absolutely unreal. The nurses in PCICU called her the star of the unit. She is amazing everyone. We've only had a couple of very small setbacks and for the most part everything is going so smoothly. This afternoon the surgeons came in during rounds to check on her and they took out her chest tube and the last of the other tubes. We had to leave the room during that because they said we wouldn't want to see it and she would be really upset. They gave her another dose of oxycodone before they did it. She handled it pretty well (we could hear her crying down the hall which made my heart break) but she was incredibly strong and brave once again and now is resting (okay...more like she's passed out or stoned).
I finally got to hold her and it was so awesome. You SO take for granted just being able to hold and love and kiss your babies whenever you want to. I've wanted to have her back in my arms since the nurses took her Thursday morning and it finally happened. We have to hold her very carefully and have to pick her up in a very different way (it's just weird to have to think about how you pick up your kid...it's just not something I've ever really thought about). Holding her is great but she's still pretty uncomfortable so sometimes it's best to just leave her laying down in her crib and just sit next to her and hold her hand. She's much more alert (when not stoned out of her mind!) and we're reading to her and playing with her. She's not eating so well so they're watching that, but they said that now that the chest tube is out she'll likely start to eat again.
The most amazing thing is that the doctors and surgeons say she'll probably go home in a couple of days. When Matt and I first heard this we were stunned. WHAT?!?!? First of all, we were told we'd be here a lot longer, and second of all....I'm not so sure we're ready! I mean, I can't wait to have our family back together at HOME again, but she's still really fragile and sore and on drugs and I'm no nurse! I suppose I'll be terrified whenever she comes home so it might as well be sooner, rather than later. We're confident they won't send us out of here unless they know she's ready and we've already been told we'll be back here a lot for follow up stuff in the next few months.
So....all in all, this little girl is doing better than we could have ever, ever imagined she would be. We've only gotten one smile so far but we're sure more are coming soon!!! We're just praying that it continues to go smoothly and that she continues to feel little pain. (oh...and that they don't send us home too soon!!!!...stupid insurance companies!).

Being an only child is not that bad of a gig

We're so lucky to have so much help while Riley is in the hospital. Our parents continue to be amazing and are making it so much easier for Matt and I. Reagan is being spoiled rotten and loving every minute of it. I went home today and put her down for 2 seconds and she had a fit. Matt and I are starting a major Baby Boot Camp for both of these ladies once Riley is all better! Just kidding (sort of!!!). Yesterday was a gorgeous day and Susan brought Reagan downtown to visit. She can't visit Riley so she visited mommy and daddy instead! We went for a walk downtown and then sat out in the courtyard at the hospital and just played. It was the BEST. She is so hilarious and made my day so much better! My dad sat outside with us and she had a ball just bouncing around. I think she's in for quite the wake up once Riley comes home and has to share mommy and daddy's attention again!

Bless her (new and improved!) heart

Well...she did it. Here we are, about 24 hours after surgery and our little peanut is doing so well. The surgery went really well and there were no surprises. The doctors were able to fix both holes and everything looks really good so far. The one big surprise was that we found out the day before surgery that Riley's left valve has only 1 muscle (all normal heart valves have 2). They didn't fix this during surgery because it just wasn't possible. However, so far, so good and her heart seems to be working okay with only one muscle at this time. We are beyond thrilled, so relieved and so grateful to God that He took (and continues to take) such amazing care of Riley. The great news so far....
This morning, Riley came off of the ventilator and is BREATHING ON HER OWN!!!!!!
She has opened her eyes a few times so far...she doesn't seem to know what in the world is going on or where she is but she has definitely responded to my voice and has even squeezed our fingers numerous times. (talk about melting my heart...it's the greatest feeling in the world!!!) She is in a lot of pain even though she's on a lot of pain meds and when she does cry it's more of a whimper (her voice is virtually gone due to the breathing tube). I got to feed her this morning and she ate so well. The head cardiologist of the pediatric icu came in this morning when I was there and did another echocardiogram and said everything is looking beautiful. No leaking at all. There won't be any big changes today...nothing else is going to come out but if all goes well today, there is a chance that she may be moved out of ICU tomorrow! The surgeon has to come to her and approve it and remove this huge tube coming out of her chest...but if that happens then she'll be moved to the 8th floor and that will be HUGE. So far though, we couldn't be more pleased with how well she's doing.
I have to say this though...we could NOT get through this without all of the love and support of our family and friends. Our parents have been so unbelievable. They haven't left our sides...and when they have it's to help us take care of Reagan, or go shopping for us or do anything else that we ask them to do. They are amazing and we feel so blessed to have such amazing parents. Our other family and friends have also been amazing. Thank you so much for all of your love, support, cards, and especially your prayers. We absolutely, 100% feel them and we know Riley does too. Reagan definitely misses her sister at home...but she is being so spoiled and while I miss her so much when I'm here at the hospital, when I get home and see that sweet smile it makes me happier than ever. She is helping Matt and I more than anything to smile through all of this....which is so needed.
Riley still has a ways to go, but we're so optimistic and can't believe how strong this little thing is. She is my hero! I will do another update after we get out of ICU.
One thing I do feel the need to say....while what we've been through has by far been the hardest thing that Matt and I have ever been through, what we've experienced since being here has been such a wake up. There are so many families here with stories like ours, and so many families here with stories that you wouldn't believe if I told you. I like to think I'm strong...but seeing some of the mommys here and what they are handling (sometimes for months at a time) give new definition to what strength and faith really are. So please, keep your prayers coming for Riley...but make sure that you thank God for all of the blessings in your life. Most of us are so beyond lucky...us included.
Riley sends her love....the pic of Riley alone I took last night before I had to leave her to go home (hardest thing I've ever done...besides handing her over to the nurses in the morning) and the pictures on here when she's with me are taken today after the vent came out. This is pretty much what we do all day. I just sit and hold her hand and talk to her. Parents and grandparents are the only visitors allowed. There isn't a lot to do when you're in there but I did read her a few articles from InStyle magazine this morning...a girl can never have too much fashion advice, right?! Seriously though...thanks again for caring so much about all of us! We feel the love for sure!