The Beginning of Alyosha's Story - Update #1 - July 27th , 2024

 

Original Prayer Request sent out to friends and family.

As many of you know, we are excitedly awaiting our first baby, to come December of

this year. We have been spending the past few months doing renovations to get our

house ready for this big change. It has been a challenge, but very worth while given the

coming excitement. We were just overjoyed to have our first baby and have wanted this

for so long.

Over the past month, we have been learning of some challenges our baby currently

has, which will have a big impact on every aspect of our lives. Back in June, we

received news that our sweet baby had what our dr said was indications of spina bifida

and an omphalocele (similar to a hernia) beneath the belly button. At the time the baby

was so small (only 14 weeks), it was hard to know how serious these things could be.

Despite this, it was still a lot to take in, and a huge wave of sadness came over us,

realizing our little one might come into this world possibly needing surgeries to assist

them.

We were sent to a specialist in Regina who we expected would give us a better

understanding of what management would look like as we move toward the baby’s birth.

On our first visit, we had another ultrasound, but our appointment with the specialist

went in a different direction than we had anticipated. To put it plainly, the dr told us he

had no good news for us. Those words alone were a huge shock.

He went over the previous concerns and confirmed that the spina bifida and

omphalocele are still there, in addition to an AVSD (hole in the heart). However, despite

how serious these findings seemed on their own, there was something deeper, more

systemic that had been uncovered. The dr recognized central nervous system issues as

well. All of this together gave him indication that our baby may have a genetic disorder

called Trisomy 18. The next step for us was to try and have some genetic testing done

to give the care team enough information to help them prepare for the baby, but even

that was a risk to the baby’s life, so the testing we decided to go with wasn’t the most

reliable in the end.

That day, we felt time stop. We grappled with the reality that our sweet baby’s precious

life was so delicately in God’s hands, more than ever. We faced the possibility that this

pregnancy is a time we must cherish, because we don’t know how long we will have

with our baby, if it makes it to term. The information on babies with Trisomy 18 is really

muddled online, because so many parents decide to terminate. It is incredibly difficult to

find information on what it looks like to care for a baby with this genetic condition.

However, it is commonly accepted that an average life expectancy of a baby with this

condition is 15 days. On top of that, some babies don’t make it to term.

Right now, we are holding this baby up and letting Jesus continue to form him or her

delicately in his perfect way. For however long we get to have this sweet child in our life,

we will praise God. Our goal is to hold this baby in our arms, and anything beyond that

is a miracle. There is still hope that this baby will be ok. So many parents have come to

us and told us stories of pregnancies expected not to go well, and babies were born

healthy. So we just keep praying for God’s will, that we might watch this child grow up in

our lives.

Even if our baby has Trisomy 18, it changes nothing about how much we love him or

her. We are daily made aware of how precious this life is, feeling tiny kicks, teaching it

to know our voices, and reading scripture together. God has shown us a window into a

different world, were life itself is a gift, and we are humble bearers of something we

hardly understand. Currently there is so much ahead of us, that we don’t have a lot of

answers, but we wanted to inform our church congregation, as we might have a rocky

path ahead. We would ask that you lift up this tiny person, pray on our behalf, and ask

God for His will. Although we would love a miracle, we want only what God would have

for us. We accept that there are things we cannot understand, but we trust Him and know His way is best.