It’s been a few days since we’ve talked.  Many things have happened and changed in those days.  Seton is now 11 days old, still stable, and doing pretty well.

When we left you last, we were torn with a decision to either leave his feeding tube through his nose and into the stomach (actually small intestine) or sending him into surgery to have a g-tube placed in his stomach.  Both paths have pros and cons and neither are necessarily “good” options.  After much thought and question, prayer and heartache, we opted to forego surgery at this time.  We have peace about that choice for now.

We again met with Dr. Habersang on Saturday and addressed numerous questions that were still on our plate and made sure he was okay with and in-line with our decision.  As previously noted, he is not only extremely intelligent and beyond capable to handle special needs but also compassionate and insightful on a personal level.  We are so blessed to be under his guidance.

Shawna and I began “rooming-in” today.  Seton is no longer in the NICU unit under the watchful eye of the doctors and nurses.  We are camped out in a room across the hall from the NICU; just the three of us.  He is still on a monitor the fine folks across the hall can view, but we are caring for him; a pseudo-home experience to help prepare us and allow us to attend to questions before leaving.  He will be going home with a feeding machine, suction machine, oxygen, and a nebulizer.

Medically speaking, Seton is being sent home to pass away.  Shawna and I feel differently.  We are taking him home to live – no matter the time frame.  We are still hoping and believing completely that he will get better and be healed and whole.  And we have peace about that as well.  We’d really appreciate all of you continuing to stand with us in that belief.

Seton needs 24/7 care and about 12 hours of home health care each day.  Expectedly, we are beginning what feels like a battle with insurance and SSI to provide the proper level of care he needs.  If you’re able to pull any strings here, we’d love a tug J

This has been a trail full of mountains and valleys.  Some days have been challenging on a level beyond comprehension, and some days have been serene and almost void of our reality.

Thanks for praying for us, thanks for supporting us, and thanks for following us.

Zane

“Yet this I call to mind and therefore I have hope: Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, "The Lord is my portion; therefore I will wait for him." The Lord is good to those whose hope is in him, to the one who seeks him.” Lamentations 3:21-25