Palliative Care Visit

Early this morning we had our second CHOP visit. This visit consisted of a quick ultrasound and a meeting with the perinatal palliative team.

We started off the appointment with the ultrasound. It was a quick ultrasound, checking position and growth. Her heart rate is 133 BPM. Waverly weighs 1.3 pounds which is pretty low for her gestational age (30+3 weeks). Her long bones continue to measure behind. Her bones are measuring anywhere from 8-11 weeks behind. The good news is that her bones are still growing, they didn’t stop. However, they will remain measuring anywhere from 5-15 weeks behind. Nothing else really has changed since last ultrasound. She remains in the breech position and my amniotic fluid levels remain normal. 

Jim and I also had blood work done for a research study on birth defects. The study really has no benefit to us, but it may help answer some questions for future cases.

We then met with the perinatal palliative team. The team that we met with consisted of a neonatologist, general physician, psychologist, social worker and a student social worker. I’m not going to lie, the meeting was tough at some parts. Jim and I have known of the terrible news for almost 14 weeks now so we have had time to prepare for certain conversations, but it doesn’t mean that hearing somethings is easy. The neonatologist started off the meeting. He went over what to expect before/during/after delivery. What our expectations and wishes are. He used Waverly’s name during the whole conversation which was really beautiful to hear. He talked about the c-section process since (due to Waverly’s position) is what we will most likely be doing. He asked about interventions we wanted, which is simply to keep her comfortable. He did mention that there is a rare, but still possible chance that Waverly does much better than expected and can live for days.. so we would have to think about what to do in that situation (NICU, medical interventions, etc). But he said that would be discussed when the time sees fit. 

After he answered any questions we had, everyone left the room and we talked to the psychologist. She was amazing. She asked us the typical psychologist questions. Wanted to know how we have been holding up mentally, things of that nature. She also asked us how we envisioned the labor and delivery process. What is most important to us? Who do we want to visit? Did we have a funeral home? She will be writing up our birth plan which we will finalize next appointment. We explained that memory making, photos, intimate family time (only Jim, myself, Waverly and Maverick for bonding) followed by extended family is most important. We want her baptized as soon as possible. After she passes, she can stay in our room for however long we wanted. So if we end up having a cesarean, that would be a three day stay. If we were comfortable, we could keep Waverly with us until discharge. She answered any questions we had and then we met with our social worker.

She asked us typical social work type questions. Explained relocation (staying at a hotel close to CHOP around the 36 week mark). We told her that we don’t live that far, and if anything will stay a night beforehand. She asked about our support system and things of that nature. She will help us with the funeral planning aspect. 

We have our next appointment on July 17th. We will do our tour, finalize plans, have another look at Waverly and schedule either a c-section or induction date.