A little late.......but an update

So my last post was on December 16 and we went in to have another echo of Miss Finleigh's heart on Monday, December 17.  We went to the Riverton PCMC this time to help reduce my anxiety and the eeriness of "reliving" these difficult moments.  Our tech did the echo, and then Dr. Pulchalski came in to show us some specifics about her heart.  Previously, I had asked him if Finleigh was a candidate for the in utero surgery that Boston Children's performs.  After her first echo, we did not have a lot of details on her anatomy, only that she had HLHS.  So he showed me why she would not be a candidate for the surgery at BC.  Where many hypoplastic babies have severely underdeveloped parts of their heart (like Bridger), she does not even have a left ventricle or a mitral valve.  She also has pulmonary and aortic atresia, which means that there is no way of circulating oygenated blood to her lungs or her body.

While I didn't expect her echo to look different, I secretly hoped that I would be wrong.  So next we were taken to the "family conference" room so that we could discuss how we would proceed.  As you know, Danny and I feel that the best choice for our sweet girl is to bring her home and love her for as many hours or days as we are allowed.  So Dr. Pulchalski said that he would formally invite the Rainbow Kids (palliative care team) to become involved in our case.  The Rainbow Kids team will coordinate with the U of U for Finliegh's delivery and will set us up with Hospice services to bring Finleigh home with. 

We are scared for how she will die.  Being an adult hospice nurse, I watch people die and care for their remains often, but this is different, this is my baby.  I don't want her to struggle and I don't want her to be scared.  I so badly want Bridger and my grandma Jean right there waiting for her.  I want her to go from mine and Danny's arms to theirs, but I am afraid that she will have to be alone for part of the transition and I don't want her to think she is alone or has been abandoned.  I know that these are things I cannot control, but I am still terrified.  So we talked a bit to Dr. Pulchalski about our fears of her comfort and possible struggles.  He said for the most part, these babies die rather peacefully and if there is some struggle, there are medications to help with that.  I know there are medications, I tell my patient's families how to use them everyday, but for MY BABY?  All of the fears my patient's families have, creep up in me; will we feel like we are hastening her death by giving her medicine to ease the struggle?

As we talked to Dr. Pulchalski, I became angry and frustrated.  Though we knew what this appointment was for, I wanted so badly for it to be different.  Just like I always thought Bridger would ultimately defy the odds and walk through the PICU as a little boy to thank everyone for what they did, I thought maybe her heart would be healed.  I wanted to call our family and say, it grew, her heart grew!  When we left the appointment, I feel like it was even worse than the first time we heard it.  This confirmed it, her heart was not going to get better.  My baby girl is going to die.

I felt so heavy.

She is so happy and active and SAFE in my belly.  How strange that it will all change when she comes out. In the beginning, she will look and act like a healthy baby.   Then they say  that she will become more and more sleepy, eating less and then eventually she will not wake up.   Sounds peaceful enough, right?  As peaceful as your baby dying can be....

I pray that it will be peaceful for her.  I pray that she will be in the comfort of mine or Danny's arms and just feel our love pouring over her.  I pray that she knows how much we wanted her and how much we love her.  I pray that our time here on earth without our children will fly and we will be with them again soon.