Congenital Heart Walk- May 5 2012

Hi everyone! We are Walking with Mended Little Hearts and raising money to help raise awareness and research for CHD and we need your help! 1 in 100 babies is born with a CHD. CHD is also the leading cause of death among children from birth to age 15. The Congenital Heart Walk is May 5th at Geoge Mason University in Fairfax, VA.  Follow this link and it will bring you to Scarlett's donation page. The donations go to the Childrens Heart Foundation the Adlut Congenital Heart Association and the team we are walking with: Mended Little Hearts of Washington DC.
http://congenitalheartwalkdcmetro.kintera.org/faf/donorReg/donorPledge.asp?ievent=1004186&lis=1&kntae1004186=F5AD79AE40A9467CB5E3CACFD15CBA87&supId=355241133

Scarlett, I and all the children and families affected by a CHD thank you!!

Scarlett's progress



Look at those rosy cheeks!



 Just an update! Scarlett is growing like a weed and doing well! Scarlett weighed 14lbs 12oz at her last dr visits on Thursday. She is doing bolus feeds now as tolerated, she is doing OK with them, could be better. She is enjoying tummy time a little more to where she can lift up her head and look around. She is sitting on her own for about a minute, but can sit with Boppy assistance for about 10-15 minutes :) Her Cardiology visits have gone from once a week to every 2 weeks and now we are up to a month between visits. I asked if she was ok to travel and he said YES! He is not too worried about her having any issues. She just can not fly, so wherever we go we are driving. Now we just have to see what plays out with the house offer and then we can go home for a little bit!







She loved the dancing flower the Easter Bunny brought!



getting to be a BIG girl!

Scarlett is home!

YAY! Scarlett came home last Thursday! :) What stinks, however, is I think she had a tummy bug yesterday and today. But she saw her Cardiologist today and he said that the fluid in her lungs is almost completely gone, her breath sounds are clear, she is doing good on her meds and gaining weight nicely! He also said that she is a little more blue than most Glenn patients and breathing faster than she should, but it could  be because she isn't feeling well because she wasn't breathing that fast or so blue in the hospital. She may need to go back to CHOP for another Cath. Otherwise she is doing good.

Scarlett is liking it at home. She looks around and smiles, makes faces with her amazing big brother, laughs and smiles, oh and flirts with all the neighbors ;)

Slow and Steady!

Slow and steady...that is Scarlett's progress lately. The Chyelothorax was quite a scare and it hasn't completely gone away but hasn't really reaccumulated. Finally, Wednesday, after 64 days in the ICU (of all types) she made her way to the Pediatric Ward! It's nice because we can stay with her and get used to doing all of her care, but then again it's rough on Noah not being able to spend anytime as a family except for at the hospital.

Scarlett has been completely weaned off of all of her sedation medications and now just has Reglan (spelling?), Prilosec, Vitamin D, Lasix and her Lovenox Shot. YAY!! That is a huge change from when she came from CHOP, her medications list was 2 pages long!! They have been letting us give her Lovenox shot since we have to do it at home and it's not as hard as I had thought it would be. They are using much smaller needles than they did in CHOP.

They are working on getting her on a much more managable feeding schedule than the 24 hour continuous feeds and once that happens they said she can come home!  :) 

CHD Awareness Week- Wear RED to help raise awareness.

Feb. 7-14 is CHD Awareness week.

She is my reason for wearing RED!

42 Days and Counting.....

Fourty two days and three hospitals to be exact. That is how far we have been on this leg of our journey. Countless miles, countless tears and no end in sight quite yet. We are now at Walter Reed, but not sure for how long.  Scarlett has a pleural effusion, or fluid filling in the pleural cavity in her chest (the area around the lungs).  It is not uncommon for the type of surgery that she had. They have drained it once and got four ounces of fluid out.  It is not the type they were hoping it was, because the kind it was will and is coming back.  They have given her more diuretics and are going to change her formula to try and stop it. If this doesn't work then we will end up back at CHoP to get a cardiac cath and a chest tube put in to let it drain.  If that happens it takes a long time, an  estimated six to eight weeks, to heal. The good news from all of this is, it WILL heal, it could just take a while.  That is the worst case scenario and I can deal with that. Of all the reasons to be going back to CHoP, even though I would rather not go at all, I am ok with it being this.  I did tell Scarlett the next time we travel I would prefer it to be to Mexico, I'm hoping that's the case.

I want to thank everyone for thier thoughts, prayers and help that everyone has given!  I will update, hopefully with good news, soon.

The Power of Prayer!!

"Momma, did you hear what they said?!?"

Scarlett is in shock and so are we and we are thankful, excited, happy and the list goes on! Scarlett is not in need of a transplant right now. Her second surgery worked and went much better than expected! She is going to get transferred to Walter Reed sometime next week.  We are very thankful to everyone for all of the help and prayers!

She is very happy to be going back to her "home hospital"