Monday, July 22, 2013

Quick Note about Receiving Blog Updates via Email.

All, if you are reading this blog and would like to know when updates are made, click the "Join this site" button under the 'Followers' heading to the right of this post.  From there, you can use any number of methods to receive notification of blog updates (I'd recommend the Google method as the simplest).  Contact us with questions.  I just thought I would point out that if desired, one could receive email updates when posts are made and not have to check the site 'wondering' if we had made one.

Scarlett's Dad.

Update with more details

Well, we have been released from the hospital, and are only pending one final Dr. Appt. before heading all the way back to Indiana.  In the meantime, we are staying in the Columbia, MD area (where we used to live) with friends.  We are trying to take it as easy as possible, just relaxing as much as we can for Scarlett's (and ours) sake and seeing friends in the area.  Aside from how well Scarlett is recovering (she is pretty much her normal self already!!), we have already been extremely humbled in the past few days by the unexpected and highly generous outpouring of love and support we've been receiving here!  It feels like home, even though we no longer live here and we've been gone almost a year.  Words truly can't tell all of you who've supported us during this surgery experience [or really any experience since we found out about Scarlett's heart 'problem'] how much the love, prayers, and support have carried us.  We promise to continue to have faith and hope in the Lord for all things moving forward, and we do ask for continued prayers as well!  I know I've been using this verse a lot as a reference, but it's constantly on my heart: Isaiah 40:31.

The current plan: Travel back up to Philly on Wednesday for Scarlett to receive a check-up, x-ray, and echo[cardiogram] along with one [hopefully] final Dr. visit.  The Dr. will then clear Scarlett to leave the east coast for a good long while if all looks good (please pray about this)!!  Then we should be on our way home Wednesday/Thursday if all goes as planned.

Again, words can't express how precious, blessed, and amazing our daughter is to us, but I will post some pictures when I can!

Blessings to you and yours,
-Scarlett's Dad

Remember if you want to contact us, you may use this email address.


Friday, July 19, 2013

Doctors used the magic word

She is sleepy from playing today but they said she might get to go home tomorrow...praise the Lord for that! !

After pic retry

Before and after chest tube pull

Tube is out!!  It wasn't fun, but it's over.  Please continue to pray for full recovery and a one-way ticket out of here!

The before pic is the goofy grin from the anxiety drug.

Thursday, July 18, 2013

Try this youtube link to watch the video of Lovie walking!

It should work!

Lovie walking on the CHOP Cardiac Floor


Buggy with a toy xylophone. .

Dada with buggy

Daily Update

So the doctors are upping the diuretic game today, in hopes the chest drainage will cease to be an issue and the tube can come out soon (but it will not come out today).  Right now it seems like chest drainage is totally the ONLY thing keeping us in the hospital.  Scarlett is responding pretty well to less pain meds, is off her O2 completely right now, and aside from having minor difficulty walking/playing (she needs frequent breaks still), she is pretty much back to her normal self.  Please continue to pray for recovery, healing, patience, and strength for us all!  Isaiah 40:31.....

Lunch on the 6E ward!

Wednesday, July 17, 2013

On the bridge

Trying to drive!

Buggy post-nap and pre-playtime

Recovery takes time...

Scarlett is still doing OK, in fact her and Mommy are getting in a good nap right now.  She had a little fall while walking to the playroom, but nothing major as far as we could tell.  She got her first post-op echo today so the Dr's can look at heart function.  We were also told that her chest tube cannot come out today because she is still draining too much fluid.  The doctors basically told us that they can't do anything but wait for the drainage to subside, which means our stay here in the hospital will most likely extend until at least next week.  Overall, Scarlett is getting better, but still has some pain/constipation problems, so please pray for her!  Mommy and Daddy are just doing everything they can to help her feel better and better.  We love you sweetheart!

I will try to upload a picture or two later this afternoon.


Tuesday, July 16, 2013

Still fighting!

Lovie had a rude nap awakening with some constipation but with some help worked things out.  Playing again now.   Please continue to pray for speedy recovery for lovie and strength and energy for mom and dad.

Nap time

On her feet for kitchen play time

A dinosaur

This little guy said he weighs seven tons but I'm not so sure...

A little play time

Jesus Loves Me!

Last night when asked by her Mommy who loves her, Scarlett replied "Mom, Dada, and Jesus"!!!  She never ceases to amaze us and is doing pretty well recovery-wise.  I will post pictures of her play time a little later today.  Also in the blessing arena is our friend Neil who spent time with us here in Philly-thanks so much for being here and supporting us Neil!!!

One minor setback was that Scarlett's chest tube is not coming out today, so it's possible that we may not leave the hospital this week.  We aren't sure yet, though, and judging by how well she is doing overall it's probably still possible.  We are taking it one day at a time and praising the Lord for our precious girl...she'll be 2 years old in 11 days.


Monday, July 15, 2013

Oh lovie

Step down unit stay begins.

She had to be woken for the move so is a tad grumpy,  but we made a step in the right direction.

Lovie in the playroom

Lovie doin real good!

She slept last night, shared a bed with mommy thanks to an awesome nurse,  and is acting more and more like herself.  We are feeling so blessed.   Recovery is progressing!  Mommy and daddy love you so much Scarlett.

Sunday, July 14, 2013

Wagon ride

Lovie was a little sleepy but she got out of her room, got to see the outside, and got a  high five from her favorite nurse Mike on the way!


Cultures were negative so 'quarantine' is over! Scarlett is now napping and she will get to ride across the cardiac floor in a wagon today we hope!

No step down unit just yet..

We are pending bed availability only, lovie status still ok!

Up and coloring!

Nurse says we go to step down unit today, which is good news.

Trying to nap..

Sleepy baby!

Lovie doing better this morning,  heart rate down, fever gone.   Unfortunately neither mommy nor Scarlett got much sleep last night so we are trying to let them rest now.  We are still waiting to hear back on cause of fever.

Saturday, July 13, 2013

Feeling a little better

Doctors staying on top of infection possibility and she has motrin for the now eating and drinking some too.

Infection? ?

There is a lot going on it's getting more difficult to keep up with the blog but scarletts fever has persisted they're taking cultures and they are now forcing nurses to wear mask around her and we are booted from the floor kitchen to avoid spreading of germs so...its a little tough right now please pray for her and strength for mom and dad

Lovie sitting up and feeding Madeline

We are working on getting her to sit, play,  and walk.

Back in mama's arms again

Scarlett looking better and acting less depressed already after we pulled her out of bed and gave her to mommy...while these times are very trying we know we have God and a lot of family and friends backing us up!

Rough night

Between a fever, constipation, and exhaustion, Scarlett had a very rough night.. she slept some,  but she is even starting to act a little sad and doesn't wanna get outta bed and be held by mommy so please keep us in your prayers! mommy and daddy are getting very very tired and we're at the point where we just need prayers and support!

Friday, July 12, 2013

Getting there!

Scarlett is resting now, she had arterial and intracardiac lines removed, has been in some pain but is getting some rest as well.. no food yet but she loves the apple juice!  We love her and thank Him constantly for blessing us through her.

Finally back in mama's arms

She's still hurting some, but has her mama now.  We love her so much!!

Our lovie

She's in some pain and discomfort,  but had some sleep last night and should be out of bed today and back in our arms THANK THE LORD.

Thursday, July 11, 2013

It has been an INCREDIBLY LONG day, but here we are and Scarlett is doing beautifully.  As Daddy has said surgery went well and Scarlett has been sleeping most of the day.  There have been some rough patches as she wakes up and is uncomfortable.  At one point she wanted to get up and be held.  She settled for sitting while Mommy and Daddy both snuggled in close.  This was extremely scary for Mom and Dad though, she was arching her back, crying and turning blue.  Luckily it didn't last too long and the nurses tweaked some of her meds to make her a little more comfortable.  She still wakes up every now and then, but otherwise she has been doing so well!!!  We are so proud of our strong little girl.  Again thank you to everyone for your prayers, well wishes, and support!  You are all such a blessing to us and we are overwhelmed by your loving words!  Now I'm off to try and get some much needed rest!  Goodnight and God Bless!


Lovie still dozing

Here's a pic of lovie and violet...both zonked out!  Drs remain very pleased with her status and she will likely get her milk bottle tonight.  Mommy and daddy love you sweet pea!!

She looks so good!

Words can't express how ecstatic we are about how great she is doing, how thankful to the Lord we are, and how much we love our daughter.  Thanks again for all the prayer and love!

Hospital staff are very pleased with her progress.

More details later tonight we hope.

Scarlett out of surgery. .surgeon had no concerns!!!

Not much more to say, praise the Lord for His grace...Dr. said she can even have a bottle later!  We are overjoyed.  No complications!

Scarlett coming out of OR momentarily!

Nurse said lovie is being closed up and we should be seeing her soon after we talk to her surgeon..  Everything gone well so far.  We are so humbled, blessed,  and uplifted today.  God has truly granted us a peace that can only come from Him.  Praise Him!  Will post more as we can.

Major part of surgery over!

Nurse said Scarlett is doing well, major reconstruction is complete, and that the warming process is underway; this means surgery is almost over!!! We should get to see her within the hour after hearing the report from her surgeon.  Thanks everyone so much for the prayers, support, and emails...keep them coming!  We have a week or two of recovery here in Philadelphia, and the surgeon did mention we may want to plan to hang around the area after we leave the hospital, but a more concrete plan for that will come later.  When we have more time, we will post pics later tonight.

If you want to contact us or check out the fundraiser, links below:

1030 update ok

Nurse said things going as planned. ..main reconstruction occurring now.  Lord watch over our baby!

Lovie in surgery

She's asleep for the procedure and in His update around 1030.

Wednesday, July 10, 2013

July 10, 2013, MRI/ Cath Day...

Today we got some GREAT news!!!  We had gone to the hospital this morning prepared for a heart MRI and Cath.  When we got there they prepped Scarlett and took her back for the MRI.  During the MRI we talked to the Cardiologist that would be doing her cath and he informed us that depending on the pictures they got during the MRI she may not need the cath.  We didn't really see that as a possibility and just prepared ourselves for the cath.  About an hour and a half after they took Scarlett back our nurse came to inform us that the MRI was done and the doctors didn't see any reason to do the cath!  They had gotten all of the images necessary with the MRI and the echo that was done yesterday!  We are THRILLED!!!  This also means that since she didn't need the cath she gets to come home for the night, instead of staying in the hospital for the night!  With all of that good news today was the hardest by far for me (Mommy) watching my little girl go under anesthesia was EXTREMELY hard!  What an amazingly strong little girl we have!

We would like to thank EVERYONE that is praying for us, your prayers are obviously being heard!      

Here is a picture of Scarlett Pre MRI!


Tuesday, July 9, 2013

Our trip to Philly


Our road trip to Philly begins!  The weather was gloomy and there was a long road ahead of us, very much like our emotional state at the time!  We had decided to stay at a hotel about 75% of the way to rest for the night.  Scarlett LOVED the hotel!  We had some pizza and went to bed.  The sleep didn't last long, Scarlett woke up about 1:00 AM and was wide awake! 


After four hours of laying around we decided to hop in the car and head to CHOP.  We arrived at CHOP about an hour and a half early and checked in.  We saw all the doctors and were released for the day. This visit was just a regular visit for them to check her development.  When we stepped out of the Cardiac Center into the lobby Grammy and Grampi were there to greet us.  We then went to unpack some of our things at the apartment where Daddy, Grammy and Grampi will stay, and went to get some dinner.  After dinner we parted ways with Grammi and Grampi and went to stay with Mrs. Cindy for the night.  THANK YOU CINDY!!!!!  We pretty much went to sleep right away, we were all exhausted from our LONG day!


After a restful night of sleep we woke up to get ready to head back to CHOP.  We were scheduled for Scarlett's pre-surgery visit.  During this visit we saw a nurse practitioner that explained the MRI and Catheterization that is scheduled for Wednesday, had and EKG, Echo, Chest X-ray, and had to get some blood drawn.  Scarlett did very well during her visit!  It is amazing to me how much one little girl can take!  She is one tough cookie! 
Now we are resting and gearing up for another long day at the hospital tomorrow.  Tomorrow we will get to the hospital nice and early to prep for her heart MRI and Cath.  Once she is done with the Cath. she will remain in the hospital until they discharge her after surgery.  Here are some pics of our sweet little "Lovie"!   

Scarlett in the recycle bin at the apartment!

Scarlett and her Ice Cream face at the hospital today!