The First Smiles

Mommy and especially Daddy were able to get a few smiles out of Addy tonight! After a tumultuous week, it felt nice to see her beautiful grin again.

Another Update

Addy has been very fussy the past few days, though it didn't seem like she was in pain--just frustrated. It didn't help that she had IV lines in both hands, 1 in her neck and 1 in her right leg. She also started out with 3 chest drains and pacer wires coming out of her chest. I am happy to report that her right hand is finally free (they removed her A-line today), Addy no longer has a forehead monitor, and 1 of her chest drain tubes was removed. Last night a nurse tracked down a mobile and a bouncer for her as well. She is much more agreeable now ;) Morphine gave her belly aches so the doctor took her off of that. She is now eating well and keeping it down. Valium has helped her out too!

It has been a long and gruelling recovery, but we must remember that it has been easier and quicker than many other childrens'. Still no mention of the word "home", but we remind ourselves that she is coming along nicely. Her pressures, rhythm, eating and output are good overall.

Here's a video of her playing this morning!

Post Op

Adriana is simply amazing. It has been less than 48 hours since her open heart surgery and she no longer has any breathing aids. She was also able to kick the stomach drain and her catheter. Today Addy was even able to drink 4 ounces of pedialyte! Thank you all for your prayers and support through all of this--they've proven successful!

Dr. Kaushal was able to clean up Addy's pulmonary artery and closed the two large holes between her ventricles. He also closed the hole between her atriums. Unfortunately, because of the way her heart is situated, he was unable to see/reach a small hole at the apex (bottom) of her heart. Though it still remains open, it is small enough that it could very well close by itself or make no difference whatsoever. She will be monitored for the rest of her life.

The doctors and staff here continue to amaze us. They are truly gifts from God--especially Dr. Sunjay Kaushal and his extremely impressive talent.

Here are some photos of Addy's journey:

Tomorrow is the Big Day

Please keep Addy in your thoughts and prayers tomorrow. Surgery is at 9am :-( As you can imagine, we are scared and probably will not sleep much, if at all, tonight.

I have attached a new diagram of Addy's heart, drawn by Dr. Baker-Smith.

Preparations

Matt, the girls, and I met with Dr. Kaushal on Tuesday and he was still very confident that he would be able to get away with making Adriana's heart a 2-ventricle heart. This would mean only one surgery, and no installment of any conduits (conduit installment = Rastelli Procedure). However, Matt and I gave him consent to place the conduit if he finds that the angle of her aorta will hinder blood flow, or her pulmonary stenosis is too much to be tackled by patch-work.

It is important to know that there are risks--as with every surgery. Dr. Kaushal's track record is encouraging and he is knowledgeable. He wanted us to know that the risks (stroke, infection, death) are less than 1%.

Thank you everyone for your continued prayers,and well-wishes. Thank you to all who travel and donate money to help us out. It really means a lot. It helps to know we are surrounded by great family and friends.

Because I am asked often, here is a list of her defects. Feel free to Google:

* Dextrocardia (this will remain forever)

* Double-outlet right ventricle (Will fix by closing holes, making it a 2-ventrical heart with arteries pulling from seperate ventricles)

* Moderate to large secundum atrial septal defect with bidirectional shunting (this hole will not affect her, as it is in the atriums, so it will be left alone)

* Large subaortic ventricular septal defect with overriding aorta (Hopefully will fix with closing hole so aorta can start pulling from left ventricle)

* Additional moderate to large muscular septal defect (VSD) and additional smaller apical muscular VSD (Will close carefully)

* Bicuspid pulmonary valve with severe pulmonary valve stenosis (Hoping to fix with patch-work instead of a conduit)

* Severe supravalvar, valvar, and subvalvar pulmonary stenosis (hoping to fix with patch-work... or will have to fix with same conduit listed above)

Surgery Date

Thursday, January 24th, Adriana will have her heart surgery. Three weeks from today. To say we are terrified is an understatement... There is a silver lining. Both sets of my parents and even Matt's parents (thanks to some AMAZING family friends and Aunt Cheryl) will be able to be with us during what will be a very difficult time.

Hope Everyone Had a Merry Christmas!

The girls had a great Christmas with snow and lots of presents!

Merry Christmas from the Schoonveld Family <3

Sisterly love... followed by something gross.

A Video of Addy and Cameron:

Pre-pre-surgical Appointment

Dr. Baker-Smith met with us today and explained that the more her and Dr. Kaushal look at Addy's 3-D heart images, the more confident they become with making her heart a 2-ventrical heart. Dr. Kaushal says that he can close the ventricular septal defects, and he believes that there is enough room for adequate blood flow through her aorta. He will be looking to do some patch work in her pulmonary artery as well. This will hopefully suffice to ensure adequate blood flow to her lungs(though, as I mentioned before, until he actually goes in he will not be 100% sure). If he feels there is not adequate blood flow for each artery, he may have to do the Rastelli Procedure (placing a conduit, which will have to be replaced every 10-15 years). We are hoping that he can close the holes and be done with it. As I mentioned in my last post, there are more holes than previously thought, so it will take Dr. Kaushal 4 to 6 hours to completely fix everything. He says that Adriana is looking at 10-14 days in the hospital for recovery. We continue to pray that Dr. Baker-Smith and Dr. Kaushal's instincts are correct and that everything can be corrected with one operation. Their optimism is cautious, but comforting nonetheless. Addy measured 12 pounds, 8.8 ounces today, and 24" long... and HER OXYGEN SATURATIONS WERE 98%! That is the highest they've ever been ;)

Just a Heads Up

Adriana's next appointment will be on Thursday, December 13th, with Dr. Baker-Smith and Dr. Kaushal. We are eager to get a better understanding of Addy's heart and hopefully we will get a better idea of what to expect for surgery. The big day is still planned for the end of January, though we do not have an exact date yet.