I had my MRI on Monday in Kansas City. Tuesday I had another ultrasound and met with the Genetic Counselor, Social Worker, Radiologist, Pediatric Neurologist and Neonatologist.
We sat around a table and I had Josh on FaceTime. The Radiologist explained what was on the MRI. The Genetic counselor went over the Micro-Ray results. The Pediatric Neurologist discussed what life after birth would be like. And the Neonatologist discussed the birthing process and possible repairs. We did not meet with the Neurosurgery team, we will meet with them next month as well as a Palliative Team.
Typing this update is sure to be one of the many hards updates I’m going to have to give over the next several weeks. I have been in a stage of denial and avoiding what’s really going on with Logan. I would only deal with the logistics of the situation and not face the emotional. I haven’t spoken one on one with God in several weeks, for fear that opening up to him would open a door to this wall I had created to avoid what I knew I would have to deal with eventually. Let me clarify that, I have not lost my faith in God, I know he’s been listening to my thoughts and knows my pain I’m hiding. He’s answered some of issues even though I’ve not out right asked him.
Tuesday was hard. Several weeks of avoidance and denial came barreling at me on that meeting. I didn’t get a chance to say many things I had wanted because I was so overcome with grief and emotion my words wouldn’t form. I was overtaken with tears and physically shaking from anxiety.
As the Neonatologist said, we have many decisions to make ahead of us. We’ve made two so far. We’ve decided to deliver Logan in Kansas City by C-Section. Originally we had wanted to deliver in Wichita if Logan wasn’t going to make it. But the exact amount of time Logan will be alive is unknown until he’s born. The concern with delivering in Wichita is whether Wesley would be overwhelmed by the Palliative Care of Logan and transfer him to Kansas City and separate us from him. We do not want to waste anytime we have with Logan. Secondly the method of delivery was up for debate. They believe Logan could be delivered vaginally, however their concern is that the contractions could cause stress he cannot handle or that the size of the encephalocele would make travel through the birth canal difficult. Both resulting in him dying during labor. Originally the concern was for damage to the sac going through the canal. At this point we’re being told the sac and tissue could be damaged in a C-Section too. But a C-Section is a less stressful situation for Logan. I don’t want him to suffer, so as much as I don’t want a C-Section, I’m okay with this decision.
So for the results of our visit:
-They believe Logan will make it to term.
– His encephalocele will be the size of a softball at birth
– The parts of his brain controlling his breathing and his heart beating appear to be inside the skull undamaged
– His cerebellum and occipital are sitting partly inside his skull, partly in the sac, and partly protruding down the spinal column
– His brain is measuring small for his gestational age
– There is a spot on his kidneys, but they aren’t sure its of concern at this time
– The Genetic Counselor does not believe the duplicate gene has any association with this encephalocele. She believes it’s just an throw away gene
-It may take several surgeries to remove the encephalocele and close the opening in his skull
-He will have vision problems, motor skill problems, hearing and eating problems
-It would appear the only functions Logan would have is breathing and his heart beating
-They said they may be able to let us take him home to die
As of now this is the information we have. Pretty much everything else comes after birth. There is so much unknown. But Josh and I have both agreed that we know we won’t have Logan long term.
As a mother I have so many emotions going through me right now. I’m not sure how to deal with this. I cry a lot. I’m angry. I’m hurt. I’m sad. I feel like I’ve failed my child because I can’t protect him. I find myself asking why? I can’t help but feel like I’m being punished. Why do drug users and dead beat parents get to have children they abandon and abuse. But I can’t have my baby.
How am I supposed to spend the next 8 weeks knowing that my child is going to die. Every kick I feel, every tumble in my belly. This vivacious baby in my stomach, that I only get to meet for a short time. I won’t get to watch him grow up. Play with his brother. Make memories with him.
How am I supposed to prepare Wyatt? He knows something is wrong. He’s been acting off the last couple days. Attached to my side. Talking about death. Including Logan in his imaginative play.
How do I walk away from the hospital without this baby I’ve carried for 9 months and bonded with? It’s unnatural. It goes against everything in my being. I keep wanting to tell myself he’s coming home. I get to have this life I’ve dreamed of with him. And then it all crashes in on me, and I break. I’m breaking. I break several times a day.
I appreciate your prayers through this process. I’m sorry if this update is more than you bargained for. I needed an outlet. And my fingers just keep typing. I ask for prayers for the upcoming decisions we have to make. For comfort during this grieving process. If we don’t respond your texts, calls or messages, please don’t feel like we are ignoring you. At this time, we just can’t handle being around people. We don’t want to really discuss it. We’re trying to stay strong to make it through Christmas for Wyatt. So please bare with us.