Thursday, January 31, 2013

HOME!

Addy was discharged from UMMC at 0930 this morning! She was sent home with 3 temporary prescriptions and a smile on her face. It's obvious that Addy is excited to be home and as you can imagine, Mommy & Daddy are very relieved. Thank you to all who have helped us, prayed for us, and wished us well! It means a lot!

Tateum, Cameron, Gramma, and Grandpa decorated the house for Adriana's homecoming :-)





Tuesday, January 29, 2013

No More Chest Drains or Wires

This morning Adriana had all her chest drains and her pacer wires removed! She also no longer has any IVs through her hands. Though she still has her central line (in her neck) she is not receiving any meds through it anymore. Tomorrow it will probably be taken out. Most importantly: she has taken a bottle TWICE already today. That's a big step because during the past couple of days, she had refused formula.

Addy is doing very well, and we hope to continue down this path.

P.S. I typed this post with one hand... I am holding our baby with the other :-)



Monday, January 28, 2013

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!



Saturday, January 26, 2013

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:






Wednesday, January 23, 2013

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.



Thursday, January 17, 2013

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)


Thursday, January 3, 2013

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.