35 Weeks - Update #5 - November 18, 2024
FRIDAY (Nov 15) WAS A LOT
We had our two week follow up in Saskatoon at the Jim Pattison Children’s hospital and so much ground was covered. We got to see our sweet little sunshine again, Alyosha reminding us just how bright of a light he is in our lives.
In the ultrasound, he was squirming and swimming so much that it was hard to catch him still to do measurements! All of his markers are following along with what he has shown so far. His growth restriction today was still about 4 weeks behind. He was measuring 30 weeks 4 days, while Lily was 34 weeks 5 days. His myelomingocele (cyst) on his back was looking the same as it did in the last ultrasound. It’s hard for us to tell if it is skin covered through the ultrasound, but we will only be able to tell that once he is born. Besides that, his movements are frequent and still make his mama jump at times.
We’re still so grateful for how strong he is and to know he is still growing brings such comfort. In many instances, the placenta may have stopped providing nutrients to the baby which would completely halt growth and could cause the baby to pass. There is no question, blood flow from the placenta through the umbilical cord to Alyosha is in a normal range of pressure and is not showing strain - what an answer to prayer!
As far as pieces of news to share, the biggest one is that we have received our c-section date! Alyosha’s birthday is set to be on December 3rd at 12:30.
Please be praying for us. I (Lily) am quite nervous about the operation because I really have never had a surgery at all and know it is quite invasive. Aside from this, Chris will be facing so much so quickly while I am still in the OR. We need wisdom and ask you to pray for us specifically during this critical period during and after Alyosha’s birth. This c-section date is set for Saskatoon.
You might wonder about the reasoning for the decision to bring Alyosha early. We were concerned about him being born early because of his small size, so we did some research and did discuss monitoring him closely and trying to “keep him in” a little bit longer, but ultimately, we realized that at best, Alyosha might get a few extra ounces, and at worst, we could lose him before we get to meet him. We have received deep support from our Christian OB in Regina (who Lily saw on Thursday, November 14) regarding delivering at 37 weeks. He told me (Lily) that you have done everything you can up to this point. What you have done is pleasing in God’s sight, and now it is in His hands. I (Lily) not only have great peace with this, I feel great joy and excitement to meet our baby boy, knowing what will come is God’s will and He will work through everything that comes. We are still nervous about this early delivery, especially since it is only 18 days away! (As of the date of our appointment on November 15th)
We also had some really productive conversations with our doctors on Friday. I (Lily) had to have an iron transfusion, which takes 90 minutes! So while I was hooked up to the machine, we were visited by the neonatologist (who we previously met with regarding Alyosha’s surgery) and our palliative coordinator, whom we had only had the chance to speak with once. We had to answer some of their questions regarding specific levels of intervention and care for Alyosha at birth, and then our conversation launched into the previous one regarding how we can manage the myelomeningocele on his back.
At times, it has been very hard to advocate for something when you almost don’t know what you are asking for. It can be so easy to misunderstand someone asking for “invasive” intervention, which is how our doctors would describe this back surgery, especially because from their standpoint they do not anticipate Alyosha living for very long, and such a surgery in this situation hardly seems to be a right ordering of priorities. We have remained persistent in saying that this surgery is something we must advocate for, even if we do not end up receiving it. And today, we finally felt heard, as though these doctors realized we weren’t asking for the impossible, but instead asking them to prepare for a better scenario than they anticipate.
These doctors deserve a ton of credit! They collaborated and spoke to many specialists as well as did a bunch of research to bring to us all of the possible options of care. As we have been informing you, the main concern is the cyst on Alyosha’s back. The most ideal situation we are hoping for is that Alyosha is strong enough that he only needs non-invasive support and can receive the surgery to close the cyst.
However, because of his heart condition, our doctors informed us that while Saskatoon is equipped to provide this surgery, it is not as suited to the task as would be the Edmonton hospital, which regularly cares for babies with heart problems.
Thus, they explained that if we were to want this surgery and Alyosha was very unstable, we would not be able to airlift him from Saskatoon to Edmonton. This is especially the case if he is intubated. In this case, it would be more feasible to do the birth in Edmonton so that he is right where he needs to be for the surgery.
Finding out about the possibility of going to Edmonton threw a big obstacle into the ability to make decisions for planning around Alyosha’s care after he would be born. Up to this point, we had felt so confident about him being born in Saskatoon. We were presented with the option of having him born in Saskatoon and then if Edmonton accepts our case, having him airlifted there for the surgery once we have confirmed that he is strong enough for the procedure. At the conclusion of our appointment, this is where we thought things had landed. We concluded our meeting telling our doctors to go ahead and find out if Edmonton would accept Alyosha as their patient and told them to pursue both paths - the first being the delivery in Edmonton and the second of airlifting him there after delivery in Saskatoon.
This weekend, November 15th-18th was full of wrestling for us. Nothing is more painful than having to try and predict how healthy your baby will be when he is born - before he is born. Deciding his condition before his birth had always been something we advocated against, and now it felt like we were having to make this decision. Without it, we couldn’t move ahead with planning his delivery. We flipped and flopped back and forth, sometimes saying we should continue with our plan to stay in Saskatoon, other times thinking our best opportunities for Alyosha are in Edmonton, and we have to go there. Fear was a constant temptation - what if’s plaguing our thoughts, and then there was the inner turmoil when we wouldn’t be on the same page. We resolved that Chris and I needed to be of one mind and only then could we feel at peace with our decision. We spoke to our closest family and friends, and prayed.
Finally, last night we were able to come to a decision.
Contrary to where we thought we would land, Chris and I decided that having Alyosha born in Edmonton will be a safer choice. Currently we do not have confirmation that this is possible; our doctors will be getting back to us to let us know if our case has been accepted in Edmonton. However, resolving to go to Edmonton if it is possible or having him in Saskatoon if it is not, we are now able to relinquish our concerns to God. We are so tired of the inner turmoil and continuous questioning that would come with deciding not to go to Edmonton. This way, if we can go, we know God is opening this door for us.
Please pray for us as we know traveling to Edmonton will present challenges in many ways.
Getting Lily there will mean stopping regularly as you really aren’t supposed to travel long distances at this stage of pregnancy. We will be in a new city and hospital with a whole new care team as well. We have decided to go late next week in hopes of meeting doctors there and putting forth our desires for Alyosha ahead of time. We are blessed with lots of family support despite this big change in plans. We have been given a place to stay leading up to the delivery day and family is now arranging how they will make it to Edmonton. As I explained above, this is all still hypothetical as we are still waiting to hear if Edmonton will take our case. We ask you to pray for God to be speaking to us and encouraging us with whatever answer the doctors come back with. We have not asked for a specific answer from the doctors; we want to put this entirely in God’s hand.
So, coming back to already having a c-section date set in Saskatoon, we now wait to see if Edmonton will accept us.
If they do, we don’t know exactly how they will arrange the delivery in Edmonton. We have made it clear to our doctors that we want to pursue this, and things will change very quickly in the next few days depending on what we find out. Thus, to date, the c-section is still set for December 3rd in Saskatoon. Because of the recommendation of having Alyosha born shortly after the 37 week point, we anticipate Edmonton wanting to deliver him close to this date.
This is where our conversations concluded today (Nov 18) - a delivery date set, and our care team going away with some more questions to ask specialists. We left the meeting needing time to think about things, and ultimately we have decided that we will go to Edmonton if the door is open. There are still so many questions regarding what we will be facing if we do go through with Alyosha having the operation for his myelomeningocele. We are aware that he will be under general anesthetic, as well as having to be paralyzed, not only during the surgery, but in the days following to recover. Please pray specifically for the tiny body of this little person. It is incredibly hard to comprehend how someone so small and new would have to face things his parents can hardly understand, right at birth. There is a possible less invasive palliative surgery that has been discussed, which would possibly allow us to more safely take Alyosha home. However, our understanding is that this is not a common procedure, so we would be taking risks in this path as well, as it might be considered experimental. We ask you to keep praying for the path of care for Alyosha, in all of its complexities.
Our big picture dream is that somehow, we might be able to spend Christmas with Alyosha at home. We know this is a bold thing to hope for, but it is a deep desire of ours. If we get through the first few days, this is our prayer.
Here are our current prayer requests:
Praise! Thanking God for bringing Alyosha all this way with minimal growth restriction and showing us that he is a strong little boy!
We ask you to keep praying for Alyosha, that he continues to grow right up until his delivery date!
C-section - praying for Lily to feel at peace and be able to focus on how special of a day this will be, and praying for Chris as he will be on the front line of dad duty for Alyosha
Pray that an alternative surgery is possible for Alyosha that does not require intubation and will get us closer to having his cyst closed so he can come home
Pray for the care team who are supporting Lily and Chris - that an abundance of information and support be brought forth to draw upon.
Pray that contact can be made with the children’s hospital in Edmonton - that a way can be made so that Alyosha might have an opportunity to get this surgery if he is strong enough.
Pray for our support - parents, siblings, close friends and extended family who will be with us in Alyosha’s first hours - alot of praying and encouraging will be happening, but they need support too
Lastly, keep praying that somehow, Alyosha can come home.
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.