33 Weeks - Update #4 - November 6, 2024
Wow! A lot has changed since our last update, it seems, and yet things are also progressing on the right course at the same time.
We have been following up with our Maternal Fetal Doctor (MFM) every two weeks in Saskatoon. So, since our last update, we have seen her twice. In our first appointment, since our last meeting, we had an incredible meeting with this doctor. She was so positive that Alyosha will easily make it to term, which at the time, we thought she meant 40 weeks. At our most recent appointment, she said he needs to come sooner, anytime after the 37 week point.
So, we want to give you some context to this, as this has hit us like a big wave and I would imagine it might be a surprise to you as well. Way back in September, Alyosha got to have a heart echo. They did this to confirm his heart condition, measure the sizes of the chambers and make sure he is doing ok in regard to how his heart is functioning in utero. After the echo, we got to meet the cardiologist. He was so helpful, laying out how the hole in Alyosha’s heart will affect him when he is born, giving us a timeline of when we will start to notice him struggling and how that will look. He told us that Alyosha will begin to experience heart failure at one month, at which point we can use medications that will lower fluid retention, a side effect of his AVSD. The cardiologist laid out for us the path to getting Alyosha heart surgery, which requires him to be at least 5 pounds. As tiny as that may seem, most trisomy boys are born at around 4 pounds, so we will have our work cut out for us when he is born. An aside to this, Alyosha has other conditions that need to be resolved before we can even begin to think about heart surgery. These conditions are at the forefront of what we are currently discussing with his doctors. More on this later.
After we had attended that appointment, we looked up the ultrasound records for the heart echo, and the report stated that Alyosha had moved up from the 1st to 6th percentile of growth! Yay!!! We were so thrilled. This was a huge encouragement because his growth is a big reflection of how well the placenta is sustaining him.
On our subsequent follow up with our MFM on October 17th, his size had gone from 6th to 3rd percentile. While this was concerning to us, our doctor reassured us that the percentage is estimated based on his measurements, and is a generalization. The positive thing is that he is still growing, she told us. At this point, Lily was just about to hit the 31 week point. This was a really big deal, because we had been warned and cautioned that the beginning of the third trimester (28-32 weeks) is very high risk for still birth. This is usually due to the placenta becoming dysfunctional and not being able to sustain growth of the baby. We went into the appointment confident our little son was well, because he was so busy, keeping his mama on her toes with all his kicking!
At this appointment, the MFM gave us a note to put me (Lily) off of work starting October 29th, so that I didn’t have to worry about needing to rest if I wasn’t feeling right. This had been a concern of mine over the last few weeks, when I would be working and could feel my belly tense up. I endured a long weekend of feeling like my belly was tightening for over a minute and going less than a minute before a new tightening began. So, as of now, I am on maternity leave. Based on how things are looking, as far as when our little man is set to arrive, and wanting to give him every chance to be his best, we were very happy about this.
AND NOW to tell you about our most recent appointments and some of the “news” on how Alyosha is doing.
Back on October 17th, we also met with a neonatologist. These are the doctors who provide immediate care to babies when they are born. Any breathing support is given by them. We know that for Alyosha this may be a concern, so we wanted to make a connection with one.
In few words, this meeting was really hard. In the moment, it felt like this doctor could not understand why we wanted to ensure Alyosha have the option of getting surgery for his spina bifida, which we learned needs to happen within the first day of his life. If it is not done, we risk him getting serious infection. We now know that it is most likely an open neural tube defect, which means that his nerves and spinal cord are exposed at the site. The neonatologist kept repeating, “I’m not sure you realize how bad this is”, “Do you want me to be blunt with you”, and then would indicate that based on Alyosha’s set of conditions, he wasn’t going to live very long.
This ran in total opposition to what we had learned from other trisomy families, whose children had received these surgeries, defying odds and ultimately living lives of meaning with their families. We tried to express this, repeating again and again that we cannot accept that we will not have this surgery as an option *IF HE IS STRONG ENOUGH* because we know that the neural tube defect must be treated if we are hoping to get his heart surgery down the road. This was likely the stopping point for the neonatologist - she couldn’t envision a scenario in which this baby was strong enough.
To her credit, many concerns have come up when considering this operation. It involves intubation and putting Alyosha under general anesthetic. The intubation is so that he can be ventilated. If he is born pink and breathing, this may interfere with his breathing abilities and trigger issues we previously had not had. This is a double edged sword - if he already has breathing issues, the surgery is less concerning, as he may already need to be on a ventilator at some point, but in that case, will he be with us long enough to warrant a surgery?
You can see how this is a series of rabbit trails and making these decisions feels impossible. However, we sustained our position, that we need to keep the door open to getting this surgery for him. What if he surprises us? What if this is his biggest issue, and we can enjoy more time with him if he can be treated for this? More on this and our thoughts regarding whether or not he actually has trisomy 18 later. Thankfully, we did leave the meeting with the neonatologist indicating she would try to orchestrate a meeting with a neurosurgeon. We are still waiting on this.
We left that appointment wondering if this is the tone toward Alyosha that we had been warned of by other families. Looking back, we ask ourselves why she didn't go through the "ins and outs" of the procedure for his back in the way the cardiologist had for his heart. Maybe the neurosurgeon would have? After that meeting, we felt very worried. We were asking ourselves what we could do to convince our doctors to let him have this surgery. Yet, also feeling conflicted, wondering if there was some level of rationality behind what they were saying. So now, here is the information that we have found, which clears up a lot of the concerns this neonatologist had, which makes it even more confusing why she didn’t tell us this herself. Maybe she didn’t even know.
First, Alyosha’s spinal condition is not the common form of spina bifida which is skin covered and much less concerning. Instead, what Alyosha has is an open neural tube defect - which either does have nerve fibers running through it or it doesn’t - we can’t know until birth. When there are nerve fibers running through it, it is called a myelomeningocele. When there are no nerve fibers running through it, it is called a meningocele. These terms have become very familiar to us because they symbolize a massive determinant of our options when this little person comes into the world and what we can possibly do for him.
If he has a meningocele (no nerve fibers), an operation to close the cyst can be done with no consequences to mobility in his legs. This procedure still entails him being intubated and ventilated, as well as going under general anesthetic.
If he has a myelomeningocele (nerve fibers running through), the operation will cause his legs to be paralyzed. In addition to the concerns regarding breathing after the surgery, this breaks our heart to think of our little kicker losing all function to his legs. We are at the point where we have decided that making this decision is impossible until he is born. Ultimately, if he is a strong boy, he needs this surgery to survive.
This condition involving the neural tube defect is part of a group of conditions known as “neonatal surgical anomalies”. The most common condition in this group is the esophageal or intestinal disconnect - which requires that a surgery be done so that the GI tract can function properly. Without it, the baby cannot eat, or therefore survive. Alyosha’s neural tube defect is also in this group of “anomalies” which all require operation shortly after birth. Without operation, these conditions are considered “incompatible with life” and rightly so. Such a condition leaves a baby with very little chances of survival, risking either aspiration of fluids in the case of the esophageal issue, or a huge risk of infection in the case of the spinal condition.
From our reading on this spinal anomaly, which Alyosha has, we found only one example of a trisomy 18 baby who had his condition. How can you base your expectations of his survival off of only one other baby in his situation? If you give it more thought, you begin to ask yourself, if his spinal anomaly is so rare in trisomy babies, is Alyosha really a trisomy baby? We even had confirmation from our MFM that we don’t know if the abnormalities in his brain are because of the trisomy 18, or if they are all due to the open neural tube defect.
The most obvious differences are very clearly due to the pressure change in his brain (due to the neural tube defect). There is no way of proving he has no other issues in his brain until he is born and we see how he functions, but we have had a grain of excitement and hope, being able to question if maybe he isn’t trisomy 18 at all. The significance of this is that we could be dealing with specific issues rather than facing as many unknowns as we might be if he is trisomy 18. We have asked ourselves if his neural tube defect could be related to a deficiency I had when he was developing. There will be no way of proving it, but ultimately I say that there is an absolute truth which will be revealed, which no one can argue with, and that is something I want to accept. Although it would be very hard to learn, it would also bring solace to know the source of all of these troubling issues.
At the last follow up with our MFM, Alyosha’s growth had greatly declined. Previously he had a 2 week growth restriction, but now it was between 3-4 weeks behind. We were just about 33 weeks pregnant, and he was showing a gestational age of 28 weeks, 6 days, so just about 29 weeks.
We still had another wonderful conversation with the doctor, her reassuring us that he is now over 2 pounds which is a good improvement. She told us that we should be looking at delivering him the first or second week of December, as I will be reaching the 37 week point on December 1st. We have also concluded that a c-section is the best option for delivery, to reduce stress on Alyosha and get to meet him pink and breathing.
We are so grateful of how supportive our MFM is, even having looked at our birth plan with a lot of requests and still said that what we are asking for is reasonable and we will just have to wait to see what we can do until he is born.
We keep saying that things are getting very real. We have finally reached the end point of our renovations, which still leaves a lot to do, but we are taking the remaining weeks to rest and prepare our hearts and minds to meet our precious baby. We try to cherish every day of kicking and know that we might not have a lot of time when he comes. It is hard to imagine what December will be. It feels like it doesn’t exist, like time will freeze. It doesn’t feel possible that we could bring him home and have a Christmas with him, and yet, with God, all things are possible.
We want to give you a list of things to be praying about with us, and we are so thankful for how attentive and supportive you all have been through these past few months.
Please pray for the following:
That we can meet with a neurosurgeon and have some reassurance that the operation for Alyosha’s back will be possible if he is strong enough
For safe travels for everyone who will be in Saskatoon when Alyosha is born
For courage and peace on the day of delivery - especially in the OR where things will happen so fast
That Alyosha comes out pink and breathing!
That we can trust our doctors to guide us in what is best for Alyosha especially for his back surgery
Pray that there are no nerve fibers in his cyst!
Most of all, pray that God’s will be done, and that the medical team can see His mighty hand at work in Alyosha’s birth and life
Please pray that Chris and I work as a team, and can stay united when we have to make hard decisions.
Once again, thank you all for walking with us on this journey. We are blessed and supported on all sides, and we know we are not alone. Our heavenly Father truly sees us, and carries our burdens. I’m not sure we have ever felt our Saviour walking beside us as intimately as we do now, but what a light burden it is when He is there. Praise Jesus our Saviour and friend, through all the stormy trials He walks with us.
Chris and Lily are open to receiving financial support which they can put towards expenses during their stay in Saskatoon, as well as possibly needing to purchase suitable items for Alyosha to support his care. They have an account open which can automatically deposit e transfer. You can etransfer to babywiebe2024@gmail.com.
We are also aware that you may want to send them a message encouraging them or possibly sending a card by mail. You can send messages to this email as well.
If you have mail you would like to send, please email the address above and we can send you the mailing address.