Over the last few months, we have been sending emails out about Tiny to our family and friends. We decided now to post them on this blog as well. That way, this space can become a bit of a time capsule of the story God has written in our lives over the past few months.
Below you will find the third email that was sent.
Written on December 10, 2015:
Hello loved ones,
Dave and I have been in Vernon for a week away to process and pray through all that's been going on over the last couple months. Writing this email has been on the back of my mind the whole time, but we both said to each other yesterday that it's time to write it. There's a lot we still haven't begun to figure out HOW to even try and process... Writing these updates has been so helpful for me to do just that in the past, so hopefully this one will do the same.
In between the last email update we sent and our ultrasound last week (Wednesday, December 2), honestly it kinda felt like we got off scott-free. Between then and now, we were feeling super optimistic given the news that our baby likely had Down's syndrome and that the heart condition they thought they found was repairable. We heard more and more stories of people who were told of similar news and everything turned out great for their baby after surgery, or else the baby turned out not having anything wrong at delivery. We had a few weeks with no appointments about Tiny which was a total relief and welcome break from being at the hospital so often.
Over that break, things felt really hopeful, and I think honestly we just banished any thoughts of things not turning out well. We had planned to have this week away after our ultrasound just in case, but of late had planned on spending this week selecting a few important things for the baby like a crib and a changetable, etc., and starting to make plans for delivering.
I felt quite apprehensive during the couple days leading up to the ultrasound as we were told we would be there all morning (and I despise medical appointments in general), but there was nothing concrete to really worry about, so we hadn't even talked together about the possibility of bad news.
Nonetheless, bad news is what we received.
We knew it wasn't a good sign when a cardiologist, a radiologist, and the ultrasound tech were crowded around the side of the table whispering to one another and asking lots of questions ("Can you confirm that I am seeing _____?" etc.). They took 230+ photos of Tiny, who was wriggling all over and causing quite a fuss for the rather grumpy ultrasound tech who couldn't get clear photos because Tiny's arms were always moving around and getting in the way. The ultrasound itself was an hour and a half long.
Then, the waiting for the doctors to write their reports and come and talk to us. First, we talked with the cardiologist.
She confirmed that the AVSD (atrial-ventricular septal defect) which they told us about last time was definitely the case. She affirmed that if this was the only issue they were seeing, surgery would be fairly easy and quite common. However, there were several other issues with our baby's heart. I don't want to get super technical, but basically: one of the chambers of the heart (the left ventricle) is looking very small (in fact, David and I commented during the ultrasound that it looked like there were only 3 chambers when there should be 4); and several of the arteries/ducts that help take blood from the heart to the lungs are very small, and possibly may not be opening properly. This could pose serious problems after delivery when baby needs to breathe on its own. As my Mom helped us to understand, my heart is doing most of the work right now to keep Tiny alive in there and pump the blood that is oxygenated by my lungs through to Tiny's body. Once Tiny is born and no longer connected to my heart, this could pose some problems if his/her heart is having trouble functioning on its own.
The cardiologist told us that these extra complications to Tiny's heart could change the possibility of whether or not they can offer our baby any surgery to repair its heart after delivery. Some of the things they are seeing could get better between now and our next appointment, but a couple of them are definitely the way they are, and as baby continues to grow, they will need to decide whether it would do more harm than good to proceed with surgery for Tiny.
Next we saw the same OB doctor we saw at the last appointment. He informed us that the lateral ventricles in baby's brain are very large (these help distribute the cerebral spinal fluid that keep our brains and spines lubricated). Again, my Mom helped us understand that this is a problem because theses ventricles are taking up space in Tiny's head (which is a normal size) that is needed for other parts of the brain to grow and develop. They found that the cerebellum (balance centre of our brains) was very small (what they call hypoplastic) in Tiny. This only adds to the confusion of whether or not surgery to repair Tiny's heart will be possible or not.
The doctor said it is still looking most likely that Tiny has Down's syndrome; they found a short nose bone this time and short limbs which are usually indicative of Down's. However, with the issues in Tiny's brain, it's looking like our baby would have severe mental delays above and beyond the developmental delays commonly found in babies with Down's syndrome. What exactly that all entails... We're not sure. This was about 3.5 hours into the appointment when he started talking about the brain and I think we were saturated with information by that point. But, of course, when brains are involved, there are all kinds of impairments that could be possible if it does not have the space to grow properly.
The doctor urged us that they would really like us to consider doing an amniocentesis test (they put a needle through my tummy into the uterus and take some of the amniotic fluid) to determine whether the baby for sure has Down's syndrome, or one of the more serious genetic/chromosomal issues. Many of these are lethal, whereas babies with D.S. can usually survive, so this will help them decide about our next steps. So we are thinking of doing that test after our next ultrasound in mid-January. Once they have enough info to determine whether or not surgery will be possible, we will know whether we plan for delivering in Edmonton and multiple stage surgeries in the first weeks of Tiny's life or delivering in Calgary and offering palliative care to make Tiny as comfortable as possible during the short life it might live.
With that in mind, it's been helpful for us to categorize the possibilities into 3 options:
1) We lose Tiny and miscarry before the due date of April 29, which is a bit more likely than it was at the last appointment given all the complications
2) A miracle happens and things get better in Tiny's heart and brain, and they decide that they are able to offer surgery, so we deliver Tiny in Edmonton and see how the multiple operations go
3) Things stay the same or get worse, and we deliver Tiny, but they are not able to offer surgery, so we deliver in Calgary and wait on the Lord's timing to take our baby to Heaven
Options 1 and 3 are sounding most likely at this point in time, but truthfully, none of the options really leave us with much hope that Tiny will live to see many birthdays. We're of course trying to remember that miracles are possible, and we're not wanting to grow callous and assume that things are as desolate as they seem. But they are seeming desolate, yet there's no real clarity about what we can expect, so we're kind of at a loss of how to move forward.
We're grateful for this week away which has given us the time and space to just be together and not have to do anything/be anything for anyone else. But it's been weird/hard too, because we don't really know how to try and process this news. We are trying, but... It doesn't quite seem real yet and we also forced ourselves to suck it up and put on brave faces so we could just get through the couple days until we left for our trip. That was okay but I think possibly quite damaging, because we shut down a lot of the initial emotions and it's been very hard to retrieve them. To be honest I've barely cried all week, and I'm thinking that's really not a good sign.
Despite all the strangeness, there is one thing that truthfully brings us comfort and that is the fact that we are in the season of Advent, the season of waiting. It's very fitting that we are walking through this during the time in the Christian calendar where we are meant to pause and reflect on our desperation for a Savior. We are meant, during these days leading up to the birth of Christ, to dwell on the misery of this world and our deep yearning for Someone to step in and make things right. We are meant to be overcome with grief for the things that don't seem right or fair; because they point us to the truth that we are ALL in desperate need of Someone more powerful than our human capacities to bring newness, life, and restoration to this groaning earth. As we wait for the joy of Christmas, we are reminded to wait for the King of Kings whom God brought to us so that we could be redeemed from the evil and ugliness we see all around us in this world. We ache along with the body of Christ (the Church) in this Advent season, made keenly aware that we need Jesus to come on scene in order to give us hope for life to the fullest, despite terrible circumstances around us. The past six months have been fraught with all kinds of things that 'shouldn't' happen: a friend lost her newlywed husband in a random car accident just months after their daughter was born, another friend is going through a painful divorce, others preparing for their own little one to arrive have been struggling through unemployment. These things that feel so against the grain remind us afresh that we are indeed waiting for the Lord to come again and restore all the hurt we see around us.
In light of these insights about Advent... What a gift then, that God would give us the unique insight of carrying a child we are (just about) certain is going to die. There is remarkable comfort in realizing God has truly walked this very path we're on, only with much greater skin in the game and much deeper pain, because not only would his Son have to die, but he would have to be completely separated from his Father. In order to accomplish his purpose of restoring all us broken, messy, hurtful people to our Heavenly Father, Jesus not only had to die for us, but had to take on all our brokenness thereby separating him from his Father for a time. I resonate in some small way with the aching pain in the depths of one's being God must have felt in preparing for his baby to come to earth, knowing the path he would walk as a "man of sorrows, acquainted with deepest grief".
Our only ask at this time is just that you would continue to lift the three of us up in your prayers however the Spirit prompts you to do so.
I'll leave you with a passage I'm sure I will be re-reading frequently over the days to come as our longings for things to be made right grow deeper still as we approach Christmas Day. Here is Isaiah 53 from The Message:
"Who believes what we’ve heard and seen?
Who would have thought God’s saving power would look like this?
The servant [Jesus] grew up before God—a scrawny seedling,
a scrubby plant in a parched field.
There was nothing attractive about him,
nothing to cause us to take a second look.
He was looked down on and passed over,
a man who suffered, who knew pain firsthand.
One look at him and people turned away.
We looked down on him, thought he was scum.
But the fact is, it was our pains he carried—
our disfigurements, all the things wrong with us.
We thought he brought it on himself,
that God was punishing him for his own failures.
But it was our sins that did that to him,
that ripped and tore and crushed him—our sins!
He took the punishment, and that made us whole.
Through his bruises we get healed.
We’re all like sheep who’ve wandered off and gotten lost.
We’ve all done our own thing, gone our own way.
And God has piled all our sins, everything we’ve done wrong,
on him, on him.
He was beaten, he was tortured,
but he didn’t say a word.
Like a lamb taken to be slaughtered
and like a sheep being sheared,
he took it all in silence.
Justice miscarried, and he was led off—
and did anyone really know what was happening?
He died without a thought for his own welfare,
beaten bloody for the sins of my people.
They buried him with the wicked,
threw him in a grave with a rich man,
Even though he’d never hurt a soul
or said one word that wasn’t true.
Still, it’s what God had in mind all along,
to crush him with pain.
The plan was that he give himself as an offering for sin
so that he’d see life come from it—life, life, and more life.
And God’s plan will deeply prosper through him.
Out of that terrible travail of soul,
he’ll see that it’s worth it and be glad he did it.
Through what he experienced, my righteous one, my servant,
will make many “righteous ones,”
as he himself carries the burden of their sins.
Therefore I’ll reward him extravagantly—
the best of everything, the highest honors—
Because he looked death in the face and didn’t flinch,
because he embraced the company of the lowest.
He took on his own shoulders the sin of the many,
he took up the cause of all the black sheep."
May you know this Advent season that our beautiful Lord was chasing after you when he sent his baby boy to this earth, knowing he would die.
All our love,
Katelynn, David, and Tiny
P.S. The day after we were at the ultrasound, I was reminded of one of the hymns that was sung at our friend's husband's funeral whom I mentioned earlier. https://www.youtube.com/watch?v=deJDkU6qiGE If you click on "Show More" when you click on the video, you can follow along with the lyrics. My deepest prayer at this moment is just that the Lord would indeed, in life and in death, abide with me, and with David, and with Tiny, and with our families.
