Update on Connor:
Connor is still in the neo-natal intensive care unit (NICU) on a ventilator, and will be for the foreseeable future. Here’s an update on what’s happening and what we think happened with him.
The history: In the process of twin-to-twin transfusion syndrome, Connor was the recipient twin. The recipient twin is usually the sicker of the two, because they start to go into heart failure due to severe fluid overload (hydrops). Connor experienced heart ‘failure’ (different than his heart stopping or heart attack) at 19 weeks due to TTTS, this was the primary reason the laser surgery was performed as an emergency procedure late at night.
Since the surgery, Katrina had done a stellar job on bedrest, and after dozens of ECG’s, monitoring, and ultrasounds, 1-3x/week over a span of 17 weeks, his heart had showed good overall improvement, with some ‘mild’ damage (per our pediatric cardiologist). Due to his history of heart problems, we expected Connor to experience some difficulty after birth, and anticipated a short NICU stay for him.
Fast forward to now: The boys were born at 36 weeks/4 days. After birth Connor started to experience difficulty breathing. He was quickly taken to the NICU, and his situation started to worsen, but in a way completely different than expected. He started to experience difficulty breathing and had to be put on a ventilator. Instead of having too many red blood cells, as anticipated, he had the exact opposite problem, he had too few red blood cells. The doctors ran a bevy of tests, trying to rule out brain damage and other problems. They finally landed on the fact that they think all of his problems are cardiac related due to his heart damage from the TTTS (twin to twin transfusion syndrome), which apparently is more severe than anticipated.
His current treatment plan: The doctors think his main problem is right ventricular hypertrophy and pulmonary hypertension. This means that the part of his heart that pumps blood to his lungs is damaged and not pumping very well. Pulmonary hypertension means that the blood pressure in the blood vessels in his lungs is too high. Because of this, he is having significant difficulty getting rid of carbon dioxide and having difficulty getting oxygen into his blood. Therefore, the doctors are trying to ‘give his body a break while his heart heals’. He is on a ventilator to assist with breathing. He has nitric oxide through his ventilator to assist with gas exchange in his lungs. He is on several medications to assist with heart function. And the one that is the toughest: he is on a heavy sedative to keep him completely relaxed while all of this is happening. They want him to be completely relaxed, so they want us to refrain from touching or talking to him, as this will stimulate him too much and his oxygen levels drop.
This will not be a quick process. He most likely will be on the ventilator for an extended period of time. We do have any idea when we will be able to hold, touch, interact with, kiss, talk to, or love on our baby boy.
Please be in continued prayer for him. This is an incredibly difficult time for our family.