Today we met with one of the Neonatologists at Wesley. Even though the news has not gotten any better, it also hasn’t gotten worse. What she did tell us, gave us some peace of mind.
First off, we can and plan to deliver at Wesley. Logan will come by C-Section once I hit 37 weeks. Deliver date is still pending. Hoping we will find out next week. She confirmed what Children’s Mercy has told us about his brain, however giving us more detail and more understanding. Since the Encephalocele involves his brain stem, she does not expect him to live longer than a few hours after delivery. There is so much of his brain outside of his skull that his skull and brain’s growing has slowed as has his weight. The brain protruding outside the skull is restricting the flow of the spinal and brain fluid. And since his head is not growing, there is no way to put the brain tissue outside his skull back inside. Which is why they would remove it, basically leaving Logan lifeless. We have decided to still meet with the Neurosurgery team in Kansas City just to have peace of mind that we know all the information available.
It is Josh and my’s decision to only provide Logan with palliative care after delivery. We want him to be as comfortable as possible until he passes away. This isn’t a decision we’ve made lightly and would appreciate your comments be minimized to supportive only. Unless you have been through this situation, you can not remotely imagine what we’re going through. Know that any choice we would have made, would have been difficult. We believe this is the best choice for Logan.
After delivery, the Dr assured us that Logan would stay in my room with me until he passes. We are allowed visitors, but at this time, we ask that if you would like to be there for delivery that you wait in the waiting room. Obviously you can’t come back for the C-Section. But our plan is to have our time with Logan, as parents. Then have Wyatt join us and have time as a family. We will also have a photographer who has graciously offered her services for free. She is apart of this amazing organization who helps families deal with this time of birth. We are not guaranteeing any visitations at this point. We would love for your support if you would like to be at the hospital. But we ask the you respect our wishes when it comes to seeing Logan. We aren’t saying no, we are just saying we don’t know right now. We can’t guarantee you’ll get to meet him while he’s alive. But maybe after. It’s hard to tell how we will feel individually at that moment. There’s no easy way to deal with this situation. We just know we want to get our time with Logan, since we don’t get to bring him home.
We have also considered having a wake for him. But we are still debating this. It’s hard to tell if we can handle going through a wake after watching our child die.
Again we ask for your continued prayers and whatever support you can provide. Hospital stays aren’t cheap, but we are thankful to not have to make the commutes to Kansas City. We have 7 weeks before this little fella arrives, and we hope to enjoy the last 7 weeks we have with him. I don’t have words to describe how it feels to think of my the time I have left with my child. I only get to know him for a matter of hours. The future I had dreamed of and planned all taken away.