Pediatric Genetic Doctor

We met with a Pediatric Genetic Doctor & a Counselor whom we were hoping could give us some guidance as to what to expect when Leah is born. Unfortunately, we were basically given the same information that we received at the first genetic counseling appointment we had. She is not expected to live long without assistance. Some babies can hold their own for a little bit while others struggle right away. It is our decision as to what kind of measures we put in place. She told us that many families opt for "comfort care" or "compassionate care" and to make sure we tell our attending doctors, nurses, etc. what our plans and wishes are so that everyone is on the same page. The Doctor also reminded us that we don't know exactly what's going to happen until she arrives and then would have to make decisions based on how she's doing. We discussed doing a c-section vs. a VBAC and she told us that we may want to consider doing the c-section because Leah's head is going to be larger because of her dwarfism and it also may cause less stress on her during the delivery. The Doctor also repeated to us that "nothing either one of us did or didn't do could have caused this to happen."

I think we are getting to the point where we just want answers, not speculation. I almost wish we had a crystal ball to predict what was going to happen so that we can do what's best for our daughter. We don't want anyone telling us what to do, but at the same time that would be nice because we are still so clueless as to what's not enough to help her and what's too much. It seems as though everyone is holding their tongue and choosing their words so carefully. We wish someone would just be blunt with us, even it it's not what we want to hear. We were referred today to speak to a Neonatologist at the hospital where we'll be delivering so that maybe they can give us some examples of what can be done and possibly what other families in similar situations have done. We want to spend as much time as possible with Leah and to do what's best for her, but we don't want to prolong the inevitable causing her pain & suffering.

I also made the phone call to Hospice today to get the ball rolling with the folks that will be able to guide us through the rest of the tough decision making. The woman on the phone was great! She was very compassionate and caring to our situation. She is going to have a Doula and a counselor call me ASAP to set up some meetings to discuss what we want to happen at the hospital (what we do & don't want as far as care for me & the baby, who we want in the room, if we want photos taken, etc.), what to expect in the delivery room, how to prepare funeral/service arrangements, and counseling services for whenever we need them. As much as we dread this, we're looking forward to getting things in place and being satisfied with our choices.

I also spoke with a wonderful lady from the organization "Now I Lay Me Down to Sleep." I read about it on another family's Blog as well as had it referred to me by a family member. This is a non-profit group of photographers who take photos free of charge for families who face similar issues such as a stillborn baby or losing a baby soon after birth. They come to the hospital whenever they are called, day or night, to capture the precious moments of the family. I spoke to Brandi, the coordinator for our area, and she was very understanding and sympathetic to our situation. She assured me that someone would be at the hospital for us and stay as long as we'd like them to. We will receive a CD of all of the photos to preserve her memory forever and ever! I also inquired about doing pregnancy photos (something we didn't do with Bryce) since we are celebrating Leah as much as we can. I told her that I would pay whatever I needed to to have these memories. She actually offered to take the photos herself and that she'd do it free of charge as well. I was blown away! She said to wait until my belly's nice & big and closer to my due date. I am very excited that we will be able to have such great remembrances of our baby girl:) Thank you, Brandi, from the bottom of my heart!