Mylah's Full Heart Repair

Today Mylah had her full heart repair. We have been dreading this day for months, now that it has happened, we are relieved its over, and grateful for the prayers for her. They pulled her through! She's such a fighter and an amazing little patient. All of the doctors and nurses love her!

I had to wake her up to feed her last night because she slept so good. Her last feeding had to be at 3:00 am to prep her for surgery. Because of this, I ended up waking around 6 to her fussing because of hunger. She is such a good baby and quickly calmed down enough to sleep while Neil and I took turns comforting her and holding her hand.



Around 7 they came to get her and take her down for surgery. We followed her down to the surgery floor, met with the surgeon, Dr. Ciccolo and the Anesthesiologist. Finally they took her away. We said our goodbyes, kissed her, told her we loved her and walked away. It's one of the hardest things to do, trust your daughter's life to a team of doctors and nurses, but we have learned to trust their skills and expertise.

{Waiting for Mylah to get out of surgery...we sent this picture to the kids to tell them hi!}


After 4 1/2 hours we met with Dr. Ciccolo and he explained his findings and what he was able to do to repair her heart. Upon opening her up and found that she was what he calls a challenging Tetralogy. This means that she indeed does have Tetralogy of Fallot, but a little worse than what they saw via ECHO. On top of having a VSD (hole which was the size of a nickel!!) between her lower chambers, significant stenosis (oxygen restriction) in her pulmonary artery, and tenting (pulling) of her BT Shunt, they found an ASD (hole) in the upper chambers. He fixed all the holes, and discontinued the shunt. He also said her pulmonary valve was very small at about 5.5 mm and should be around 10 mm. So he divided it and she will now need a valve replacement when she's 10-15 maybe sooner. Lastly he reconstructed her pulmonary valve to create a better flow from her heart to her lungs.

They left her chest open to reduce swelling and because she had a lot of bleeding. She is paralyzed by meds to keep her from moving too much and they have her comfortable and stabilized. Her heart sounds amazing too! Before it sounded like shoes in a washing machine. Now it is sounding just like yours and mine. Truly a miracle.

Tonight they will monitor her, watch her fluid release and keep a close eye on her open chest.

Thank you again for all of your prayers, comments, concern and love. We know that all of it pulled her through and blessed the surgeons and nurses as they worked on our precious girl.

Love to you all.

- Neil and Lara