Thursday, November 24, 2011

Happy Thanksgiving!!!! One more picture. :)

Happy Thanksgiving!!!!

Well, I updated the ride home post with some pictures.  ALSO, some really cute videos can be found on Mommy's Facebook page if you are interested.  To put it simply, we are so grateful for what we have this year.  We've been through more than we ever dreamed we could handle, but we're making it.  For now, we are just so happy to spend this day at home with Scarlett.  She's happy, healthy, and babbling away at us!  We love you sweetheart.

Wednesday, November 23, 2011

Scarlett looks great today...and she's babbling!

Again, sorry, no pictures. Will try to post a nice full update tomorrow (Thanksgiving day). We won't be joining anyone for dinner because Scarlett is still in the early stages of recovery. Thus we should have time to write a full blog entry. Thanks so much to everyone who is thinking of /supporting us. We love you too! And we love you precious Scarlett!

Tuesday, November 22, 2011

A ride home to remember.

Post update:  The only things really worth remembering about the ride home are : it was long (stop-and-go traffic on I-95), rainy, frustrating, we had a cranky baby, drivers were terrible, we were all exhausted, etc.  It was pretty much not too fun.  WE MADE IT, however, and that's what matters!

We made it, and all of us are physically OK. Will update blog with details, pics, etc sometime tomorrow I hope. Until then, goodnight. And we love you Scarlett.

Homeward Bound....

Is a really great movie about a cat named Sassy, a dog named Chance, and another dog named Shadow. Oh wait, this blog isn't about that. It's about our sweet little angel. See attached for the face of a little girl that is ready to be back in her natural environment. Mommy and Daddy's faces weren't available for photographing, but they're elated too!

Monday, November 21, 2011

Scarlett's echo update.

The attending Dr. explained to us very well what is going on. The flow across Scarlett's aortic valve looks good, the same as it did pre-op. The valve is still "mildly stenotic," which means fatter than it should be, but since the flow is good there is no concern. What sounded way more concerning to Mom and Dad was that the main part of the surgery, the connection from Superior Vena Cava to the Pulmonary Artery, was "narrowed." The Dr. explained that this can happen because it's a surgical connection, not a natural connection, etc. She said that given Scarlett's recovery and stats, this is not a cause for concern and likely will never be. After all, she says, Scarlett is the boss of us and will tell us when we need to get concerned! Daddy loved that comment. Here's a picture of her from a minute ago. We love you Scarlett!!!!!!!!!!!!!!

Scarlett got her echo, and a short visit from her attending.

Daddy occupied little baby Scarlett during the echo, mostly with her Seahorse gloworm and Dolly. She did great, and it wasn't too difficult at all! Mommy actually slept through it, which is saying a lot. Her attending Dr. just stopped by to look at her and reiterated that Oxygen weaning is really the key to getting to go home. They'd like to see her eat more, but even if she picks up a little we may still get released under the presumption that she will do much better when she's comfy at home, which Mommy and Daddy believe she will.

Scarlett looking/feeling better.

The doctors just rounded on Scarlett this morning. Everyone agrees that she looks much better than yesterday. She picked up her eating a bit last night, and got some sleep too. She's definitely more happy today and has already smiled at Mom and Dad several times. She'll get her echo today, and the doctors say she's "very close" to going home. If everything continues to look good, she may get to go home Tuesday or Wednesday. The biggest thing remaining is weaning her off the Oxygen, because they don't like to send her home on O2 if they don't have to. Both Mom and Dad are feeling good ab0ut Scarlett's status today.

Sunday, November 20, 2011

Rough afternoon/evening.

This afternoon Scarlett was really irritable, cranky, and inconsolable for no apparent reason. The nurse and doctors weren't entirely sure what was going on. They tried changing up her pain meds a bit and increasing the potency of them, which did seem to help a little. Most importantly, Scarlett has lost an ounce or two of weight and isn't eating well. She almost came off her Oxygen, however, but didn't do quite well enough without it. Please pray for peace, rest, and lots of ba-ba for our baby girl! I'm too tired to post pictures, I'll add some in the morning.

Scarlett doing OK.

This morning the Drs rounded on Scarlett and said the fluid in her chest near her lungs had decreased which is great. They also said that she looks really good and the nurse can start weaning her off her Oxygen! She gets more blood tests and an echo tomorrow, which we are hoping is the next step toward sending her home!! The doctors did mention the possibility of Scarlett having to go home with Oxygen, but hopefully that will not be the case. Our nurse Carly has been fantastic. She says that Scarlett is definitely teething, but hopefully the tylenol she's getting will help with that. Right now Mommy and Scarlett are sleeping in the room while Daddy is up in the Connelly Resource Center working on laundry.

Saturday, November 19, 2011

Scarlett had a rough patch this afternoon.

Scarlett was a little extra fussy in spurts this afternoon, which was really hard to endure because she gets so blue when she screams and gets upset. Her tummy and head were hurting. The nurse was able to give her more oxycodone and tylenol which helped. She also got some meds to keep things moving through her system. Our sweet little baby had to have her foot IV was replaced with an IV in her right hand, which was NOT fun for her. At least the IV specialist got it in on try number 1!! Mom and Scarlett are doing their best to rest up tonight. It seems like we have a minimum of 3 days left in the hospital...what a week this has been. Mom and Dad love you so much Scarlett!

Scarlett looking good, going to step down unit...and we get our own room!

Scarlett looks so much better today. She got her bandage removed, her pulse-ox is in the high 80s (still with oxygen), and she doesn't seem to be in pain at all. The doctors noted a little fluid on one side of her lungs, but that should go away with medication and we may get to go home in a couple days. Thanks again so much to everyone who's been supporting us via thought, prayer, hugs, taking care of things for us back home, ensuring we have a place to crash, scarlett's medical expenses fund, and otherwise!!!! It truly has been overwhelming and we are SO grateful for the kindness and generosity we've been shown.

Friday, November 18, 2011

Scarlett supposed to go to step-down unit tomorrow.

Mama is holding Scarlett now, Scarlett is feeling very agitated and uncomfortable. Apparently she just had open heart surgery and is getting used to a completely different systemic blood flow! Our sweet little girl is a fighter, though. She recognizes Mommy and Daddy, despite the morphine, tylenol, and oxycodone. She loves reading "Llama Llama Red Pajama" and her and Daddy both love listening to Mommy sing "Puff the Magic Dragon." Thanks everyone for thinking of and praying for us...hopefully we'll get to go home sometime next week.

Thursday, November 17, 2011

Scarlett still resting in her CICU bed.

Scarlett is still doing well, her doctors are happy with her recovery thus far. She should still be able to get the major connections removed tomorrow which means we can hold her! She is so precious to us. We love her an unbelievable amount. We love you sweetie! -Mom and Dad.

Scarlett is in the CICU for the 2nd time in her precious little life.

She's doing pretty well. Her surgeon stopped by to see all of us, and said that Scarlett's stats look good. Scarlett is pretty well sedated and on pain meds at this time. She should be able to get her arterial line, atrial line, drainage tube, and catheter out tomorrow. We should also be able to hold her. She's also a little puffy from her nipple line upward as a result of the new blood flow from the superior vena cava directly to the pulmonary artery (pressure in the lungs greatly exceeds that of the heart for influx of blood). She's expected to be puffy and extra cranky the next few days as a result. Mom and Dad are feeling better now that the surgery is past and she's doing well. Grandma and Grandpa are very proud and Aunt Ashley and cousin Henry think Scarlett is the greatest. Unfortunately, they have to drive all the way back to the Midwest yet today. We are so glad they came to visit and support us!!

Scarlett is out of Surgery!!!

We just spoke with Dr. Fuller and Scarlett's surgery went well.  We will get to see her in about 30 minutes.

Update on surgery.

Surgery is underway, the surgeon is working on getting Scarlett ready for bypass. Everything is going well.

Scarlett is in surgery.

She was taken back around 10:15 am. We just got our first update, she has the breathing tube in and went to sleep under the influence of anesthesia "magnificently." Attached is Scarlett, Mommy, and Daddy in the pre-op waiting room.

Wednesday, November 16, 2011

Surgery Time

     I just spoke with part of the surgical team.  It seems like Scarlett will be Dr. Fuller's first surgery of the day.  The estimated time of surgery is about 8 AM, but is subject to change since the actual schedule is not out yet.  The surgery is estimated to take 3-4 hours from when Scarlett is taken back to the O.R. to when she is brought out to the CICU.  We will keep everyone updated as things progress.


Well, that was quick. Doctors gathered from the echo that there's no point in waiting for the surgery. Scarlett will visit the OR sometime tomorrow. Please pray for our sweet little angel. I will keep updating this as things progress.

The CHOP team has rounded on Scarlett.

Sorry it took me so long to post this, but I guess it's only 10 am. The doctors feel pretty confident that Scarlett is simply outgrowing her shunt. She gets an echo today and we should find out soon whether or not her surgery will be moved forward. The doctors said it's probable she'll have surgery within a day or three. She looks pretty good to us so we're not in a state of alarm (as parents) at this time. Thanks everyone for the thoughts, prayers, and support. Keep it coming. Love you all. And love you Scarlett!!!!!!! -Dad.

Tuesday, November 15, 2011

Pic of Scarlett in the ambulance transport

Scarlett, Mom, and Dad are AT CHOP

We feel so different already. Scarlett is actually asleep right now (2:22 AM), Mom and Dad are feeling so relieved that she is here. The nurse and staff that is on tonight has been so warm and welcoming to us. The feeling we have right now is that this might not be a one or two day stay. Scarlett will likely have to undergo heart catheterization to determine exactly what is going on inside her heart. We will keep updating the blog as we know more. For now, we are trying to rest before all the blood draws, doctor visits, and tests/procedures tomorrow.

Let's go to the CHOP!

We are on our way! I will update this further when we arrive at CHOP.

Transport arriving any minute!

CHOP has sent their team down to get Scarlett and Mama via ambulance. Once they arrive, Scarlett and Mama will go with them; Daddy will be driving separately. When we get settled in at CHOP I will update the blog again. I will likely update it again once we are on the way....Scarlett's current status is still about the same. Her stats aren't fantastic, but she looks OK. She is also extremely over-tired. We're hoping she'll sleep on the way.

Update on the transport

Well, we just received word that Hopkins and CHOP won't even be looking at our case again until 7 pm this evening. That means that we may not get there tonight. We are all very tired, worn out, and exhausted. This has been a pretty rough 30-hour stretch.

On another note, if you feel led to support Scarlett's family financially, and I know many folks already have, there is now an official fundraising site to support Scarlett and her parents for offsetting medical costs, travel-related costs incurred due to Scarlett's time spent at CHOP, and the like:

One step closer to that transport!

Hopkins announced about an hour ago that CHOP has received the go-ahead from insurance. So we are just now waiting for the CHOP transport team to get their stuff together, take care of whoever is more critical than Scarlett, and then come for Scarlett. No word yet on an actual time frame. Scarlett is now on Oxygen...

Still waiting for that transport...

Scarlett is handling things pretty well, but Mom and Daddy are a teeny tinesy very little bit frustrated with the fact that the transport process has taken so long.  Apparently CHOP is waiting for a pre-auth from insurance, but insurance says everything's good and no one has contacted them.  What a mess.  Will update further when I know more.

Monday, November 14, 2011

Scarlett "stable," will transfer to CHOP 15 Nov in the A.M.

The current plan is for Scarlett to be transferred up to CHOP from Hopkins in the morning.  Doctors still aren't quite sure what the problem is, and her O2 stats still aren't fantastic, so the current plan is still to have her be further evaluated in Philly.

Scarlett's been admitted to Hopkins.

Today around lunch time Scarlett's O2 stats were in the 60s so Mama decided  (in conjunction with the doctors) that we needed to go to the hospital.  We ended up getting admitted to Hopkins, which honestly has been quite frustrating (she's in an ICU with other kids who may or may not be sick, they stuck her 3 times without getting the IV in, she's not as calm in that type of environment, etc).  The doctors say that everything looks OK, but her O2 stats haven't really stabilized to a "normal" range.  Mommy and Daddy are pushing hard for her to get transferred to CHOP if necessary, but that won't happen until the morning.  The biggest issue right now is that no one knows "what the problem is."  We will update this as soon as we know more.  -Dad.

Nov. 7- Nov. 14, 2011

     This week Mon.- Thurs. weren't too exciting.  We did our normal doctor visit (this week we visited the pediatrician) and our normal errands.  Other than that we stayed home and read our books and played.  On Thursday night though Uncle Joe and Aunt Rebekah came to meet Scarlett for the first time!  Scarlett loved meeting her Aunt and Uncle and had a great time with them!  On Saturday we all ventured out to the Maryland State Cross Country meet, in which Aaron's Uncle Dan's team was running.  It was a beautiful day and Uncle Dan's team ended up winning first place!  After the meet we all went and had some pizza at Aaron's cousin's house.  Scarlett enjoyed watching the kids run around.  It won't be long until Scarlett can run and play too!!!

Tuesday, November 8, 2011

Plumb- "In My Arms"

    I love this song, and can't help but think of my beautiful little girl when I hear it!  Mommy and Daddy love you so much Scarlett!!!!!

In My Arms Lyrics

Your baby blues
So full of wonder
Your curly cues
Your contagious smile
And as I watch
You start to grow up
All I can do is hold you tight

Knowing clouds will rage
And storms will race in
But you will be safe in my arms
Rains will pour down
Waves will crash all around
But you will be safe in my arms

Story books full of fairy tales
Of kings and queens and the bluest skies
My heart is torn just in knowing
You'll someday see the truth from lies

When the clouds will rage
And storms will race in
But you will be safe in my arms
Rains will pour down
Waves will crash all around
But you will be safe in my arms

Castles they might crumble
Dreams may not come true
But you are never all alone
Because I will always
Always love you

Clouds will rage
And storms will race in
But you will be safe in my arms
Rains will pour down
Waves will crash all around
But you will be safe in my arms

Sunday, November 6, 2011

Oct. 31- Nov. 6 2011

     This week wasn't too exciting.  Except for our Dr. visit and Thursday Scarlett and I hung out around the house.  Thursday, I took Scarlett to meet a new friend, Godric.  Godric was born about two months after Scarlett.  Both Scarlett and Godric slept through the visit, but she had a good time on her first "play date".    Another first we had this week was Church.  We went to church for the first time since Scarlett has been on the scene.  She wore an adorable jean dress! (pictured below).  Scarlett really enjoyed all the sights and sounds church had to offer.  

      Here is Scarlett with her dolly.  She loves to talk and snuggle!