36 Weeks - Update #6 - November 21st, 2024

This past week and a half has been very hard - full of waiting, hoping and praying.

Two weeks ago, on November 15th, we had requested for our doctors to check with Edmonton about us possibly going there for Alyosha’s birth, and wanted to prepare for both that situation, and having the delivery in Saskatoon if Edmonton was not possible. Since then, we haven’t received as many affirmative responses and answers as we would hope. Last week, on the 21st, we met with our palliative doctor and neonatologist to find out what they had heard from Edmonton. The NICU team in Edmonton reviewed Alyosha’s case, and came back with this response: 100% recommendation of comfort care. This was so disheartening - yes, we know that we may need to follow a comfort care approach if there is nothing to be done for Alyosha - but we don’t know yet! We have heard from so many friends in the trisomy community not to make decisions about your baby based on ultrasound images, and this is how these recommendations are being made to us. 

Our neonatologist said, if we MUST have this surgery, she would go back to her connection at Edmonton and convey this to them. We had to correct her - it wasn’t that we must have this surgery, regardless of how Alyosha is doing when he is born, it is simply that we refuse to eliminate the possibility of him needing it and surprising us with how well he is doing. The team in Edmonton was said to be hard to get together, because there are so many busy doctors involved, and we had mixed signals on how quickly they would meet. Our doctors in Saskatoon said they would call us as soon as they heard from them, but we didn’t know if that would be on the 22nd, 25th, we really had no idea when they would call. 

We received an email on Monday telling us we have an appointment for 12 pm on the 28th, which we hope means we will be finding out about Edmonton. Our current plan is to attend our appointments in Saskatoon on Thursday this week, and if Edmonton gives us the green light, we will head there that day. 

In other news, we heard from the neurosurgeon in Saskatoon. Our conversation was very optimistic - she explained how the surgery is done for the myelomeningocele (cyst), what management looks like during recovery, and even what it is like to care for a child for the rest of their life! How wonderful. She was confident about providing the operation in Saskatoon if Alyosha did not need heart surgery before his myelo surgery, but we don’t fully know the ins and outs of the answer to this question, so we would have to hear from Edmonton before we could make that determination. We do know that because of Alyosha’s heart problems, anesthetic is a big concern, which is why we understood Edmonton would be more suitable for him. 

This surgeon is ready and willing to do the operation in Saskatoon right after Alyosha is born. She has asked us to call her as soon as we know where we will be going, so she can reschedule her day and make room for him! We are so thankful for her!

Now we wait. Tomorrow we will hopefully find out more. Please continue to pray for peace as we spend this time wrestling with every angle of the situation. We ask for God’s will to be done, knowing we might not understand fully the ‘why’ of the outcome. We can see God bringing us to greater awareness of how important it is to trust him when, from a human point of view, things look bleak and hopeless. We are so excited for how He will work, and reveal Himself to our medical team, and to us! 

Blessings to you all. 

Financial support:

Chris and Lily will not be working for part, if not all of December. They are still waiting to confirm maternity leave for Lily, and Chris will be able to receive benefits once Alyosha is born. However, this still leaves a financial concern for covering costs of utilities and home payments which will be a greater burden with their income being significantly lowered, on top of the costs of food and gas to drive to Saskatoon or Edmonton. They are currently establishing what their living accommodations will look like, but are confident this should come at no extra expense. Aside from this, the main concern will be the costs of special equipment and purchases to support Alyosha once he comes home. 
As we have previously noted, Chris and Lily have an account available to send e-transfer to. This is their preferred method of receiving financial support, as it allows them to allocate funds where it is needed most. If you would like to aid them financially, you can etransfer to babywiebe2024@gmail.com. 

Final note: 

We will be doing updates on a weekly basis now that things are picking up so quickly. We encourage you to invite others to follow along with Alyosha’s story, because we feel it impressed on our hearts that God will use his life to impact people in ways we cannot imagine and will establish a testimony that lives even after he has gone to heaven to be with Jesus. Please do not hesitate to send an email to babywiebe2024@gmail.com to let us know you want to be on the email list. You can also share the link to the blog. Thank you all for your incredible support. We feel so very loved and upheld by you, in prayer, hugs and encouragement. God's blessings to you.