Another Kansas City appointment down, another series of decisions to make. Just when I think we know where we are going, things switch on us once again. While things haven’t necessarily changed, we did get what seemed like the first piece of good news we’ve gotten since Logan was diagnosed. I feel as if we’ve hit rock bottom. Don’t get me wrong, so many other scenarios could go wrong. The situation could play out worse. But I feel we’ve accepted that Logan will pass, and once you accept that, you can only go up from there. What is worse that loosing your child? Know what I mean? So with that in mind, we went into this appointment today with a sense of peace. Call it what you will, but I call it God.
Before I get to the news from today, I must recognize a few things first. Josh and I got to spend last night in a hotel. We chose to rent a hotel as opposed to staying with family, so that we could have so much needed alone time. We kept it low key. We spent quality time with each other, at first not discussing the issues with Logan, but just bonding with each other, and connecting. Then we got much needed time to discuss Logan. Without the worry of interruption from Wyatt, or his over-hearing ears. No worries of interruptions from life in general. For a few short hours we got to discuss things that needed to be discussed. Call it what you will, I call it a blessing.
On the way home this evening Josh and I got to have another series of discussions, deep discussions. Connecting discussions. Revelations. Ironically through this journey we’ve been on, he’s been more worried about me and vice versa. I’ve said before that God and I have not spoken intimately in some time now. I’ve maybe spoke to him directly a couple times in the last two months. Both times when I’ve broken down and just pleaded with God. Pleaded for my child’s life. Pleaded that he take Logan quickly and peacefully if he must go. But I honestly believe God and I have been operating on this frequency where He just listens to my thoughts, my stressors, concerns, etc. Through all of this I can not think of a time I was angry with God. I’ve continued to see God’s blessings in the areas that have concerned me the most throughout this process. And true to the God he is, one of my biggest concerns was Josh. Josh has been struggling in ways that are understandably painful. His struggles have been out of my reaches. I a person who likes to fix things. And I have had no solutions to help Josh deal with his journey.
Today, Josh felt God. He felt God in the hospital while we were waiting for our sonogram. He was able to see the positive in all this negativity for the first time on this journey. To hear him talk about what he was feeling this afternoon made my heart swell. So much so. Call it what you want, but that is God! We feel at peace with the decisions we’ve made thus far, and can only credit that to God. Accepting this situation is out of our hands, and having faith that God will carry us through wherever this journey takes us.
As for the appt: The presence in this room was so much more comfortable than my last visit to this room. I was thankful to have Josh with me this time. He is probably the only person who intimately knows what I feel and what concerns/questions I have. He was able to step in and ask questions we both needed answered. I honestly feel like this was one of the most productive meetings we’ve had thus far. And I accredit that my amazing supportive husband and God.
The Neurosurgeon went over the MRI again. And what he saw and interpreted. Every Dr we’ve spoken to has been unanimous in the belief that Logan will be born alive. They are also unanimous in the fact we have no idea how long exactly Logan will live after delivery. Basically the Neurosurgeon told us that doing surgery on the sac outside his skull would not change Logan’s function. The tissue outside his skull is most likely not vital. Therefore the surgery to remove the sac is almost purely cosmetic. It would essentially allow him to be able to lift his head, make it easier to breast feed, hold him, etc. He also believes that the tissue going down his spinal column isn’t an issue. He says they can remove the bone around the opening, and place a patch to widen the opening for the spinal column. That the body would adapt. He says it doesn’t appear that the brain stem is involved, but that he would have not one but two radiologists relook at the MRI and give me their opinions. He said more than 80% of Logan’s brain is inside his skull and that the encephalocele is medium size, about the middle of the back of his head, not at the base of his head like we were originally being told. He says the brain tissue inside his skull may or may not be growing normally.
They told us that they cannot give us definitive answers. The brain is a curious organ. It adapts, it does amazing things. They can’t pinpoint death, nobody can. BUT. He says that he believes we have time. They believe our plan is positive, to prepare for death, but willing to to pursue another avenue should Logan present differently at birth. He told us that he believes Logan will breath on his own, giving us 1-2 days to decide to proceed with surgery and to see if Logan can survive on his own. He told us vital movements and things to look for once he’s born. If he can’t do the basics, he won’t survive. But if he does the basics, there is a possibility he might survive. They were carefully to not be too optimistic. They didn’t want to get our hopes up, but at the same time, they were very clear on ALL things that COULD happen. I compare it to the side effects of a pharmaceutical. You may or may not get the side effects listed on the drug, but they notify you of all the possibilities. Today they were trying to give us all the possibilities in the broad spectrum. One thing they are fairly certain of, Logan will most likely be blind. Hearing is a question at this point, but they believe it will be affected by some degree. If Logan survives, he would need surgery within the first few days to drain the fluid on his brain. And he would need a series of surgeries throughout the first year of his life. The possibility of a shunt having to be placed was discussed as well.
Overall, they gave me confidence in the decision we’ve made to deliver in Wichita. They said if that ‘s what brings us the most peace, to do it. So our plan will remain the same. We will hope for the best, but plan for the worst. So cliche, but so relatable. We will plan to have our C-Section here at Wesley. Plan to provide Logan with Palliative care. But we will monitor him after he’s born and watch for these vital signs. We will send reports to Kansas City. And we will take it day by day. Decision by decision. And see how much fight this little fella has in him. We feel like we have a little glimmer of hope. That even though he will most likely have some sort of developmental delays, he may be able to have a life. I believe we’ve always had this glimmer of hope in the back of our minds. While we are realistic that this baby of ours will mostly pass away, we still hope with every sonogram that something has changed, that with delivery he will be better off than they thought or even be miraculously healed. Please don’t confuse our acceptance with giving up. We haven’t given up hope. But we take comfort in that if he passes away, He will be with Jesus, and at peace. Not suffering. He’ll be happy, and know love. What more could I ask for my child? He would know love like even I couldn’t give.
So to our prayer warriors out there. Keep forging on for us. God is listening.