Support Team

Yesterday feels surreal. I wanted to write yesterday to provide everyone with an update but didn't feel ready to write. I don't feel ready right now. Writing more details of why we had to meet and what we had to discuss makes everything more real.

So many thoughts and feelings are swirling inside of my head and my heart.

Again, CHOP was amazingly supportive, caring, responsive and thorough.  

I had my fluid checked and it actually has dropped a little which I am so grateful for. I am so glad I don't need a reduction. My fluid is still above average but no need for a reduction yet! Hooray for not needing a long needle stuck into my abdomen!!

We met with the neonatologist, case worker, and psychologist. This team is experienced in dealing with cases just like ours where the baby is unlikely to survive long past birth. The neonatologist talked to us for a while about how things will run medically when Alexander is born. He assured us that palliative care is the right option given Alexander’s measurements. This is very comforting because the decision between palliative and intensive care feels like one that would be unbelievably difficult to make. He also explained what the birth will look like and what we can do to make Alexander more comfortable after he is born.

We then talked to the psychologist. She empowered us to make the decisions that feel best to us. She was very warm and kind and said she was in charge of helping our heads and hearts. :) I really really liked her and was happy to hear she will be meeting with us every week when are at CHOP and that she'll be present in the OR for Alexander's birth. She asked us how we are doing and complimented us on our current outlook and attitude towards what we are going through. She said that it usually takes her weeks or months to get couple to where we are now (able to talk about it, thinking through details and making decisions on what is best for our family.) For some reason it was very comforting to know that she is happy with our progress of dealing with this situation. Before she became and psychologist and started working at CHOP she used to be a doula. I absolutely love that and I'm glad she's here to support us.

After meeting with this team, we met with the child life specialist. This is the person who works directly with siblings, makes sure everything runs smoothly and helps us figure out detail of how to make our time with Alexander as special and meaningful as possible. She coordinates any keepsakes and has done many things in the past for families. Things we can do include making a mold of Alexander’s hands/feet, taking hand/foot prints, taking pictures, etc.

I could not feel better about being at CHOP, we are being so well taken care of.