**Update Nov 25**

Unfortunately Birdie's heart valve repair isn't doing as well as expected... she is back in the severe mitral regurgitation realm as well as having severe stenosis.. this is causing the left upper and lower chambers to dilate.

We are back to every 2 week appointments with her cardiologist and he is doing a fantastic job with her medication management for her symptoms.

We are waiting to hear back from the surgical teams in Boston and at Texas Children's Hospital in Houston for their opinions on surgery. It will more than likely have to be an actual replacement of the valve this next time, rather than a repair because she had such a small amount of tissue to work with on the repair back in September. This means that she will be on an anticoagulant for the rest of her life.

She looks healthy and shes happy... you wouldn't know there was something major wrong just by looking at her. If we can keep her healthy and continue to gain weight, we are possibly looking at surgery is February or March. That will put her at 5-6 month post op and right around a year old.

Two open heart surgeries under a year old... thats insane.

I feel like Bernie Sanders campaign ads "I'm asking once again for your financial support" but I don't really want to. I am asking you once again for your prayer support, for this surgery to be one that has no complications during or after. If it does its job well, we would possibly not have another surgery for a couple of years when she has gotten too big for the valve and would need to have a bigger one put in that can grow with her for longer.

This sucks. I wish I had better news to share, but we are all doing the best we can and soaking up every minute we have right now.

***Update***

Birdie's surgery is scheduled for Sept 5th. We have to be there a few days before for pre-op on the 3rd, CT and echo under anesthesia on the 4th, and then surgery. We are lining out our flight options now and we have already found a place to stay.

Hello, our daughter Birdie has a rare congenital heart defect called parachute mitral valve with severe regurgitation. It was discovered when we were in the NICU for jaundice, which turned our stay at the hospital to an extended one. Birdie has already had 2 week long stays in the NICU and a 5 day stay at the PICU. We see the cardiologist weekly and are currently on 3 different medications to manage the symptoms of her heart condition. We had a meeting with a pediatric heart surgeon in Austin, and the news from them was pessimistic and grim, with the cardiologist saying that working on Birdie's heart would be like doing surgery on "spider legs". The surgeon suggested we look into taking her to Boston Children's Hospital because they have a surgeon team that specializes in valve repair and replacement. We worked with her cardiologist here (we love Dr. Banker) and started the process of a 2nd opinion with Boston.

I received an email with their opinion on Birdie's condition and a week later a phone call from the surgeon himself. Dr. Baird is his name, and he stated that he felt confident in being able to take Birdie on as a patient and had a few options on surgery, depending on what is needed once everything was approved and she was evaluated by his team.

Right now we are waiting for the scheduling team to call for the surgery date, but it is looking like anywhere from July-September.

I've called and spoke with the Ronald McDonald House at Boston and unfortunately they have a bit of a wait, but once we get the schedule for surgery we can be placed on the waiting list.

This is an out of state, and obviously out of network procedure being done, but this is the best option we have for Birdie and with the best team to perform it successfully in the nation.

I cant put into words the fear, anxiety, depression, despair, and sickness that we have been filled with since discovering Birdie's condition. She is such a beautiful and special girl and I wish more than anything that I could change places with her.

If you're able to donate to help with the costs of travel to Boston, lodging, and medical bills, it would be greatly appreciated. If you're not able to, please keep Birdie in your prayers and send us all the positive thoughts you can spare.

Thank you,

Hillary and Kaleb.