Meeting the Palliative Care Team

Trying to Prepare Ourselves

Since anything can happen at any time of this pregnancy, Mark and I decided that we are going to try to be prepared as possible. Of course, we will never be able to fully prepare for what is to come over the next several months, but we are going to do our best. So, yesterday we met with a couple people from the Palliative Care Team at BWH. It consisted of Dr. Manning, who is a neonatal doctor, and a social worker with the NICU. I would say the meeting went pretty well considering the circumstances that it was under. Dr. Manning was wonderful and seemed very genuine, which made us feel much more comfortable. He had a notepad out that he had already taken some notes down about us, and asked us several questions about our general background to start everything off. He asked us what we both do for jobs, where we live, and about our family. He also wrote down Adalyn's name and double underlined it, which meant a lot to us that he wanted to remember her name.


Over the next hour Dr. Manning educated us on what his team does and what they can do for us when it comes time. He told us that we have the option of delivering Adalyn in the NICU or on the regular care floor, and that it was wherever we feel the most comfortable. That was their main concern: making sure we are as comfortable as possible. Dr. Manning told us some things to expect when it comes time to delivery, such as the fact that Adalyn may not make it through the delivery process, and that infants with T-13 typically live 3-14 days after birth. When we showed him the ultrasound notes, he did say that if she really does have the hypoplastic left heart, that once she has to start pumping blood on her own it does not look good. He said that heart problems are typical in T-13, but the hypoplastic left heart is not typical. The thing that was the hardest thing to hear is that there really is not anything to do to "fix" the problems that come with this abnormality, and that their goal is to make sure that there is no suffering. Mark and I have already decided that we do not want to prolong any suffering, and that our main wish is to get to spend even just a couple hours with our sweet angel. Dr. Manning said that he will make sure that the nurses in our room are aware of this, and they will make sure that we get as much quality time with her as possible, which really means a lot to us. 


It was extremely hard having a meeting like this, discussing what is to come in the next few months, and even talking about funeral arrangements. This topic has come up a few times with the two of us, and we are still not sure exactly what we want to do, but as Pastor Cynthia told us, we will know when the time comes. My heart hurts at the thought that we are already "preparing" funeral arrangements for our baby girl, but it is what we have been dealt with, and we are going to stay positive and strong through this. We both know that our time here on earth will not be very long, and that we will be reunited with our little angel one day. Hopefully she will have brothers and sisters to meet her too, and we will all be reunited. She will have lots of people to take care of her while she is waiting, such as "Mamaw" and her Great Grandpa Bill. She will be in good hands.. and that is what keeps us going. Our hope is that we can use this as a witness to others, and that people will know that they should cherish life. Maybe Adalyn's story will bring others to know the Lord, and that at least one person may be saved because of our sweet angel.