Timeline of 1st Surgery
5:30 AM – MRI
6:20 AM – Begin neurological brain monitoring for clinical trial
10 AM – Surgery Begins
11:40 AM – 1st update from doctors: the first hour and a half was spent prepping him for surgery
1 PM – 2nd update from doctors: he is on heart-lung bypass machine and they have inserted a Gore-Tex shunt in his heart to supply blood flow to the lungs. It is a tiny 3mm tube. The surgeon is now inspecting the rest of the heart’s anatomy.
3 PM – 3rd update from doctors: After creating the original shunt (Blalock shunt) to supply blood to the lungs and inspecting the anatomy of the heart the surgeon has decided to change their approach to the surgery. They created a new shunt (Sano shunt) going from the pulmonary artery to the right ventricle and removing the original shunt. This was done to allow better flow of blood to the lungs.
5 PM – 4th update from doctors: Blake is off of the bypass machine and his little heart is now working on its own. They said the surgery went as well as it possibly could have. All of his vital signs are looking good.
8 PM – Final meeting with doctors: The doctor told us the results from his MRI prior to surgery came back abnormal. This might not mean anything major, but what it does mean is that by doing the clinical trial they were able to identify this and start to change their plans to try and address any abnormalities. These results allowed the surgeon to choose to do the Sano shunt. The doctor was concerned about how tiny he is. With this type of surgery, feeding is hard because there are many organs that need to cooperate. Blake rests in ICU.
The operation went as well as it could, they were able to close his chest, and although there was some bleeding, they were able to keep it under control. Post-op we got a more information about the results of the MRI. There appeared to be some white matter in the brain that is out of place (the white matter is what affects your coordination and other motor skills). The gray matter which is your thought processing is normal. Nobody know what this means for outcomes, we were told that he might be a little less coordinated, or on the opposite extreme he may have Cystic Fibrosis. This was a huge setback in morale for us because we felt we had just subjected him to an excruciating surgery for little quality of life. There was a lot of time where we had to take a step back and get perspective on the fact that we were doing everything we could, and much of the outcomes were out of our hands.
Five days post-surgery Blake’s ventilator was removed and he was breathing on his own. I got to hold him for the 1st time post surgery on Mother’s Day, 6 days after surgery. Eight-days post-surgery he was moved out of ICU and to a floor where we get to stay with him around-the-clock. It was 18 days after he was born before Blake and his sister were able to meet for the first time.
During this time he started having aspiration issues and feeding was challenging. They told us they were keeping us in the hospital until these issues resolved and they scheduled surgery for a feeding tube. The surgery was delayed and during that time (with much tenacity and thickening of milk) I was able to get Blake to take 100% of his milk from a bottle without aspiration. On May 22, we were finally able to take our little miracle home.