Welcome Home Lexi

In the ICU we had some very tough decisions to make. We had always said that we didn't want Lexi to ever be resuscitated again or put on a ventilator that breathes for her. We knew we might have to face those things at some point during her life with how medically fragile she is. At the same time there is a lot of grief and fear over her not physically being here anymore and those are decisions no one should ever have to make.

The doctors were gracious with us in presenting our options. For the first time since Lexi was 3 days old we were given the choice to not pursue any more treatment for our daughter. Lexi was at a point that the usual step was intubation where she would be sedated round the clock while a ventilator breathed for her. We didn't feel comfortable with that but we also didn't feel comfortable doing nothing. We wanted Lexi's body to do what it was going to do without us hindering her recovery or going to extreme measures to keep her with us. The responsibility was a huge weight and I was scared out of my mind of what the future would hold with or without Lexi. I was afraid to face whatever suffering was ahead if she made it. The doctor told me that she would be different after this sickness. Every illness took it's toll on Lexi. Though we still had her physically, mentally she was a lot more checked out than before her health declined. At the same time I knew losing her would change us all.

It turned out that Lexi had a bacterial pneumonia from the flu. Lexi gets the flu every year even though she gets the flu shot. The doctor thought she had a chance of surviving as long as she didn't get any worse so we decided to continue with what we were doing and wait. She was put on the bi-pap machine 24/7 which is a non invasive ventilator to hopefully give time for the antibiotics to work. We were OK with it though because it was a gentler option, did not require surgery and it didn't breathe for her, only helped her breathe deeper.

A couple days in limbo passed before Lexi began to recover almost as quickly as she got sick. After being assured from the doctor that we could do everything at home that they were doing for her at the hospital we came home on hospice with a lot of equipment. We knew we had more time with her but we also knew that we wanted to stay out of the hospital as much as possible for whatever time we had left.

It didn't feel like a victory at first. I was traumatized by our time in the hospital, weary and sick with fear for the future. We had been through a year of battling for her life that ended in a nightmare that wouldn't end. I wanted the agony to stop. I could no longer separate her from her declining health and the intense pain of watching her suffer. I was in a very prideful head space, thinking I knew better than God. I would think thoughts of how better off she would be in heaven. It was part of the lesson of knowing my place in all this isn't to decide what should be. I have to deal with what is.

Daniel chose to look at the gift of time as a positive, a chance to make sure we have no regrets about the way we have loved Lexi. His attitude was hard for me because it was really convicting. My heart was thankful in part. I do believe Lexi brings a lot of good to our family, especially our boys. I know the 3 of them will all be better men for having her as a sister and I want them to have memories of her.

My continual prayer to God since then has been for him to show me the good He is bringing from Lexi's life. This blog and people sharing with me in response have been a huge part of that. Seeing her story helps people doesn't make her pain OK but it does reveal the beauty in it. Her life has purpose. Her experiences are hard but they are meaningful.