We had a family/care team meeting, and we talked about taking Hayden home. Everything the doctors were doing for Hayden they said we could do at home. We knew he was going to die one day but they just said to take him and let him be as comfortable as we can so we set up a plan to get a hospice team and oxygen people to bring some to my parents house. The one requirement was to bring him to my parents house since dick head was not supportive and kept trying to take stuff off Hayden we all knew he would not listen or do things that needed to be done safely for Hayden or for me and having support that I needed. 

In order for this to happen we had to learn how to change his feeding tubes and do his oxygen how to prepare his foods and medicines and all that came with taking him home. We set up a day and time to learn all of this and I told dickhead what we  were doing and he came but he just slept in his car and told his family he came to learn what we had to buy he never came to learn. So they all thought we were taking him to our house but the fact that dickhead had no interest in learning and lying once again to his family just showed we were making the right call by taking him to my parents house.

I was so excited so scared. Nobody in our home town wanted to take Hayden though because they had never had a baby on hospice and I’m guessing they just were not comfortable with it but after lots of calls my parents finally found someone. Auburn Crest Hospice. They had never worked with an infant either but they still chose to help us.

The night before we got to take Hayden home mom and I finally got to sleep in the same room with him. I have never been so scared and nervous in my life. This night it was all up to us to do his care routine to give him his food, check his temperature, and so much every 3 hours at 3,5,8 and 11. I knew this was such a big step in our lives because we weren’t at a hospital where if something went wrong they could help him it would be up to us to help him and to drive him where he needed to be.

Hayden and nurse Melissa got to say goodbye to each other and saying goodbye to her was hard because she became part of our family. I will forever be so grateful for her. She was so amazing with my baby boy and our family.

That night it seemed like mom and I didn’t sleep much, not like we had got much sleep since he was born but that night seemed worse. Maybe we both were so nervous or something. Hayden’s last nurse we had was ironically the same nurse that we first met in the NICU, Amber. Amber is such a sweet lady as well and I’m so happy for all the nurses and doctors that we met with this very difficult experience.