Dr. Li first took Ripley's O2 measurement and it is still at 100% when he is calm. Then he weighed Ripley, who is now 8 lbs, 2 oz! At his pediatrician appointment on Tuesday, he was 7 lbs, 12 oz and at the mothers' support group yesterday, he was 8 lbs even. He really has been growing quickly, just like his big sister. No wonder why he is so eager to nurse frequently.
The main reason for the appointment was to check his heart development with an echocardiogram. This scan found that the pressure gradient under Ripley's pulmonary valve has increased dramatically. On August 12, it was ~35 mmHg and today, it was ~70 mmHg. This is very likely the reason he has had tet spells start so early on. Dr. Li said that because of this quick increase, his recommendation is for Ripley to have his open heart surgery in the "next few weeks" as opposed to waiting for two to three months. He said that on Tuesday, when the cardiology team meets, he would bring up Ripley's case for discussion of scheduling surgery. The surgeon, Dr. Reddy, is world renowned and very very skilled so his schedule fills up quickly. We will have to see when they determine is both a good time and an available time. Ripley has also been prescribed propranolol, a beta blocker to help keep his heart rate down and assist with blood flow to prevent tet spells from happening.
Dr. Reddy is such a skilled surgeon that he has successfully operated on very premature babies and doesn't have concerns about operating on babies based on their age or weight. This reassures me since some other surgeons at smaller hospitals require their patients to be a certain weight before surgery can be scheduled. Also, our family's lives have been put on hold in some ways while we wait for Ripley's surgery. Madison is not in daycare so that she won't get sick and transmit illness to him, which is a contraindication for surgery. We always have at least one grandma with us to help with her. We also have hired one of my mom's friends to help around the house and with cooking. I remain on edge and anxious most of the time. Hayes has to take time off of work for our numerous appointments. We are not resentful of having to do these things, but are just trying to be prepared and survive this difficult period.
Nonetheless, it will be scary to have a surgery date scheduled. There are so many questions that come up when your child has to go through such an invasive procedure, ranging from how long the recovery period will be to whether they will survive. This will definitely become a time that I have to learn to let go and trust that everything will go according to plan and that my son will demonstrate what a fighter he is.
