Our decision

The last few days have been a whirlwind of meetings, social workers and hard decisions. We have been very supported and loved. I can't say how much I appreciate all the love and prayers sent our way.

Abby is waking more today, but seems to be in more pain. We are going to try the fentanyl patch to see if it offers more consistent relief. She can also go up significantly on zofran and ativan for nausea.

Jeff and I have decided to bring her home Monday on TPN. If we are able to get her pain under control and she can have some awake time each day when she feels good, then we will leave her like that for a while. If she can have some quality time with her sisters and family, we want the opportunity to offer her that. If we are able to control her pain and she doesn't develop respiratory issues, she could potentially have a few months, although that is unlikely. Eventually, she will develop breathing issues from the amount of pain medicine she needs.

If we get her home and find that she is sedated or in pain all the time, we will stop TPN and spend our last few days holding her. There were a lot of "ifs" in that, but that is where we leave it in God's hands. He will decide which "if" is ours.

Her GI system is not functioning, so we can not use it for nutrition. She will never be able to support her own life and is suffering in pain. We are running feeds at 5 simply to keep the bowel from dying--which is very painful.

We will probably be evaluating her on a daily basis. Based on how she's been here, our goal is a few weeks at home with her before it becomes simply unfair to continue to artificially support her. We want time with her, and a chance to say good bye, but not at the expense of her comfort.

We feel confidant that we will know when to stop. We know that God will give us the peace we will need in that moment.

We know that this is the right decision for our family and we are so thankful for all of you praying us through this time.

What does not last will be dressed with what lasts forever. What dies will be dressed with what does not die. Then what is written will come true. It says, "Death has been swallowed up. It has lost the battle."—1 Corinthians 15:54