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We got some potentially good news today. I met with my OBGYN here in Wichita. He let me look over the letter KC sent him and we discussed what they told us.

He said if palliative care is all we desire, that KC won’t do anything they can’t do here. He has no concerns delivering me by C-section here.

This may seem like insignificant information to you, but to us, this is kind of huge.

We initially chose to have Logan in KC because they had told us Wesley might be overwhelmed and transfer Logan to KC, separating us. And that scared me. But my OB assured me that wouldn’t be the case. And he’s setting up an appointment with the Neuro specialist here in Wichita to confirm that.

To us, this is a huge relief. It would take so many stressors off of us. For instance, if we delivered in KC, we would only see Wyatt on the weekends. I would have to move to KC a few weeks to a month prior to my due date. And Josh would have to take unpaid time off or stay in Wichita and work.

Delivering here allows us to see Wyatt daily. I can work up until my delivery. Josh wouldn’t have to take as much time off work. My Dr here will deliver me at 37 weeks and allow me to pick my delivery date. I love my Dr here. He understands where Josh and I stand on the issues we face with Logan. And all the crazy thoughts I’ve had the last several days and even months, he understands them, even though he hasn’t been in the situation.

For now, I will pray that this one thing goes in our favor. Thank you all of for your continued support and donations. We appreciate everything you all have done for us.

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December 28, 2016

I had no idea how incredibly hard it would be to return Logan’s crib. I took it apart with no problems, loaded the car up with all his stuff to be returned. My first stop was the crib, she asked me what was wrong with it. After responding with “I no longer need it” I broke down crying. And of course no returns ever go quickly. By the time I left there was a crowd of people behind me staring at my meltdown. I feel like everyone looks at me and they automatically know. I’m not sure I will make it to the other two places I needed to go to return his things.

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.

We’ve got one week until our MRI. Josh won’t be able to go with me. So my mom is stepping in for him and I plan to FaceTime him once I meet with the Dr’s. It seems the closer we get to this appointment, I find ourselves discussing this more and more. It’s unfortunate that whatever news we get will be a couple of days before Christmas. But we’ve both agreed to put those issues on hold so that we can make Christmas great for Wyatt. This appointment carries so much weight and anticipation.

I apologize if we’ve made you feel bombarded by what’s going on in our lives. We love your support.

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December 8th, 2016

Here lately I wake up in the morning and have an overwhelming sense to cry. It’s been happening throughout the day as well. Just random moments pop up that I find myself thinking about Logan and I want to cry. This gut-wrenching ugly face breakdown cry. I’ve been holding all emotion regarding Logan’s situation in for so long now. And the closer we get to the MRI appointment, I notice the harder it is to keep this “I’m okay” face going. I keep telling myself and everyone I’m not ready to break. I’m afraid once I do, I won’t come back. Seeing pictures of newborns and people enjoying their pregnancies and finishing their nurseries are really starting to rip on my heart, when they didn’t before. I don’t want to be bitter. I want to be able to enjoy my friend’s children as much as they do and as much as I know they would enjoy Logan.

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November 27, 2016

God moment: it came clear to me this morning at church that I’ve been avoiding God; either intentional or not, I’m not sure. This was the first week we’ve made it to church since finding out about Logan. I’ve been avoiding my Bible study, I’ve been making excuses not to attend church on Sunday. And praying very minimally and being careful not to touch the topic of Logan indepthly when talking with God. And surprise surprise, church today just happens to be on the topic of patience and faith. The entire service moved me to tears, but struck me the most was when the pastor said, “God wants you to have patient and faith. He is working behind the scenes on His own time and on His terms. Be patient for what’s coming and know he hears you.” How powerful. Even when I’m avoiding him, he once again parks right in front of me. I don’t want to cry and I don’t want to be sad. So I avoid speaking emotionally about Logan. Only talking logistics. Speaking with God makes me do more than be logical, and I’m not ready for that, but I’m thankful God understands. He’ll be with me while I wait and he’ll wrap me up when I’m ready.

November 30, 2017 (GoFundMe)

We got a call from the Wichita Maternal-Fetal Specialist today with some genetic results.

When Wyatt was diagnosed with Autism, we did genetic testing from him, myself and Josh. In hopes we’d learn more about what his future would be like. However, the results came back with a duplicate gene which he obtained from me. At the time there was hardly any information about what this duplicate gene indicates. The opposite, a deletion, would be indicative of some sort of mental retardation.

They tested Logan to see if he carried the gene. It would appear he does. What it means at this point, we don’t know. They sent the results to the team in Kansas City and were hoping the genetics team will discuss it with us at our appointment next month.

It’s tough news for me specifically. It has left me feeling inadequate. I have given this unknown gene to both my children. Both whom have difficulties and one who may not survive. It’s a tough reality to swallow. I know it’s out of my hands, but that doesn’t change the way I feel.

We ask for continued prayers. And thank you to those have shared this GoFundMe, have been praying with us and to those who’ve donated. Thank you, thank you, thank you.

The first few posts I’m going to transfer over from our GoFundMe account. So disregard the references to the GoFundMe and raising money as they are no longer relevant. As well as updates that were posted on Facebook but not synced with the GoFundMe.

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November 8, 2016

Spoke with my OB this morning. Baby has a defect on his skull where part of his brain is protruding out of the base of his skull. We weren’t given a whole lot of information today. We go into see the Specialist tomorrow for another sonogram and an amniocentesis. We were told to plan for a C-Section and to plan for baby to have surgery after he’s born. Researching the disorder was probably the last thing we should’ve done, but we did it anyway and the prognosis doesn’t look good. Continued prayers for baby, for us and guidance and patience to hear from the specialist tomorrow.

November 9, 2016

The specialist did several sonograms today as well as a blood draw and the amnio. We won’t have the results back until next week. We are waiting for a call from Children’s Mercy as the specialist referred us for an MRI. The baby has what’s called an encephalocele. It doesn’t appear to have brain tissue in the back of his head, he believes that’s what is in the sac on the outside of the skull. He wants Children’s Mercy to confirm this with an MRI. If this is the case, the baby won’t survive. The specialist does not recommend going through a C-Section. So the baby would be delivered early so he could make it through the birth canal. And the prognosis after that is not. Thank you for all your support thus far. We appreciate your thoughts and prayers.

November 11, 2016

We met with my OB again today. He spoke with MFM Specialist and the prognosis hasn’t changed. We got several questions answered. I think there’s just one question that remains. We will hopefully get the answer to that when we go to Children’s Mercy on Wednesday. Unless the MRI tells a different story, my options are to terminate the pregnancy (Which has never been a choice for us) or to carry him until 37 weeks. Legally they cannot deliver the baby before 37 weeks unless he passes away before 37 weeks or it becomes medically necessary to deliver him early. We’re still hoping and praying for the MRI to show different. But we’re also praying for support, guidance and understanding as we prepare for this road we’re about to travel. We have chosen not to tell Wyatt anything until after the MRI.  But I would ask you to pray from him for when we do have to tell him. Tentatively, until the amnio results come back, if this isn’t a genetic anomaly, there is a good prognosis for a successful pregnancy should we choose to journey that path later. In the meantime, hug your babies and be thankful God let you take them home. This is a burden no one should bear.

November 16, 2016

8 hours later, we really don’t know anything we didn’t already know. They did a 3 hour detailed ultrasound with hundreds of pictures. They did a 1.5 hour echocardiogram with just as many pictures. His heart is normal and essentially he’s perfect aside from his head. There IS brain tissue inside the sac which extremely decreases his chances of survival. We were also told his cerebellum doesn’t appear to be within his skull. The Dr believes it’s in the sac at the base of his skull. We got back in 4 weeks to have an MRI done and meet with the euro team to discuss babies prognosis after delivery. As well as another ultrasound and revise with the Dr we saw today. It is still unclear whether I have to deliver at Children’s Mercy or will be allowed to deliver at home. We meet with my regular OB and MFM in a couple weeks to go over the amnio results. And then are supposed to be with the genetics Dr in December. Of all things today, I take away the face he’s perfectly healthy in every other way. I will take the positives that I can. And to top it off, little mister has quite the personality, he gave the ultrasound techs a run for their money, he was all over the place. Thank you for continued prayers.

This was written November 23, 2016 a few days after we found out Logan’s condition. It is the starting post from our GoFundMe

As many of you know, our unborn baby Logan has a medical condition called an encephalocele. Dr’s haven’t given us much hope with his prognosis, either making it to term or after birth. We have continued hope and prayers that God will change the outcome. We have set up this GoFundMe account to help us cover the costs of medical bills that have already begun to trickle in. As well as to help cover the costs of the trips we have already taken and the many will need to take over the next several months to see the Maternal-Fetal Specialist and the Neurology team in Kansas City.
Many of our friends and family have asked us how/what they can do to help. Here is our answer, we love and appreciate your prayers and support more than words can ever express. Your outpouring of faith and support has been so beyond incredible. What we really need in the next few months on this journey is any financial support to help us stay on our feet. As we all know, medical bills can add up quickly for the smallest of things. We have already had several speciality sonograms, an amniocentesis, and an echocardiogram. Our future still holds an MRI, meetings with the Neurology Team. Several sonograms throughout the remainder of the pregnancy. Delivery at Children’s Mercy hospital in Kansas City as well as whatever surgeries Logan will need to simply survive in this world.

We are eternally greatful for whatever support you show us. We understand if donating isn’t within your grasp, we are completely happy with your continued prayers and words of encouragement. But if you are able to donate, please know there will never be anything we could do to repay the amazing sacrifice you’ve given for our son. You will forever be apart of his story.