Bella's Open Heart Surgery Campaign

When she was in utero, Bella was diagnosed with a Congenital Heart Defect (CHD). I found out when she was born that the severity of the CHD was much greater than we had initially anticipated. When she was born, I ended up having a seizure due to my body's reaction to the epidural. I woke up out of the seizure, only to find that a cardiologist was telling me that my baby would have to be placed in palliative care. If I took her home, she wouldn't live past 2 weeks old. 
At this point, I was already under a great deal of stress, due to anesthetic drugs in my system, and I took the news very hard. 
The next day, the cardiologists and the heart surgeon had a meeting about her, and the heart surgeon decided to try and operate. He performed a modified procedure similar to the Yasui Procedure, helping to repair part of her heart. I remember that day. She was 6 days old, after spending the previous 5 days in the NICU at INOVA Fairfax Hospital. I went with my parents out to eat because I could not stomach being in the hospital and the thoughts that were going through my head.
She came out of the surgery almost 10 hours later, with the cardiac surgeon holding her, rocking with her in the chair, and even falling asleep with her. It was a very precious sight, and great to see how much they cared. She was placed in the Cardiac Corner of the PICU, with an attending nurse at all times. However, withing a week she had her chest opened back up again due to blood leaking into the chest cavity and pushing on her heart from the outside. It was an unforseen circumstance that none of us had predicted.
Because of this, again, they took her back and opened her chest up. They drained the blood and fixed the chest cavity. About three hours later they brought her back to the Cardiac Corner. 
She also had initial blood clots and an NG tube (which she later pulled out at a doctor's appointment with the Hematologist). Many of the blood clots have now dissolved, however there is still a stagnant clot in one of her legs.  

The best news that I can give is that she pulled through. 

At 10 months we had her evaluated as well due to some noticeable delays, and they told us that physically, she was about 4 months. This was very hard to hear, but gave us the chance to get physical therapy for her that has helped immensely in the long run. 
She now receives speech therapy and per agreement with her physical therapist, does gymnastics once a week as a way to do physical therapy as well as social building.

I do wish that I could say that we haven't been back to the hospital since that first month, but it isn't so. We have been to the emergency room many times since. Many times for breathing issues, for seizures (5 so far), for discoloration (turning blue) around the face, and more. 
She has had two vulvoplasties previously as well to help enlarge the catheter in her heart, as well as a replacement of the stent.
We ended up back in Fairfax earlier this year due to a large mess of problems. What started out as a high fever for the weekend, turned into a seizure, breathing complications, rapid heart beat, blood pressure issues, ear infection, and possible blood infection. 


However, as many times as she's been to the hospital, none of it has slowed her down. She seems to always be up and running around. She goes to school, plays with her friends there. She loves to play with her cousin, and see her Grandma and Papa. 

This summer, she will be receiving another open heart surgery. There will be a replacement of the conduit, stent, and catheter, and an enlarging of the heart. 
For her, this procedure will take her off her feet for about a month, at least. There will also be major regression, causing her to go through more physical therapy and possible occupational therapy as well. Many of the activities that she loves will be put on hiatus to help keep her safe, and to ensure that she doesn't rip her chest open. 

We are asking for your help and support in this time of need. 
A portion of the profits will be going to the Fairfax CHD group, Tenderhearts as well. 
Please, help us raise awareness of the number one birth defect in this country, and help us mend the broken hearts! 

 
We have our next cardiology appointment on the 7th of April, right after the campaign ends. We will be sending each person who bought a shirt a card (email or hard copy), as well as an update on our progress. Thank you again!!