Email 6: The Latest Tiny Update

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 sixth email that was sent.

Written February 15, 2016:

Dear loved ones,

Thanks for hanging in there as we've taken a bit more time in between updates since January. A lot has happened so I'll try to keep things as brief and concise as I can.

The awesome news we have to share:

• The issues they were concerned about with enlarged ventricles in Tiny's brain are no longer a concern! This continues to be a HUGE weight off our shoulders.
• One of the concerns with Tiny's heart back in December was that Tiny might have had a hypoplastic left heart, meaning the bottom left chamber was too small which would have lessened the chances for surgery by a long shot. But the heart chambers are looking more even now, so the pediatric cardiologist has told us she does not think this will hinder surgery from going forward. So grateful!
• The other heart concerns have not gotten any worse, so the best news is that for now, we are planning for delivery in Edmonton and the surgeries Tiny will need to keep growing into a little person who poops and pees and cries just like any other baby. The ultimate decision of whether or not surgery will 100% be happening cannot be determined until after birth, but we are feeling optimistic. We are so proud that Tiny has made it through so many battles already! And we continue to hope and trust that God will continue to sustain Tiny through the needed surgeries coming his/her way.
• This means we will be delivering in Edmonton! We are headed up to Edmonton next Monday and Tuesday, February 22-23 for our next ultrasound and detailed heart echo, and we will also be having a multidisciplinary meeting with all the departments who will be involved in making Tiny's debut in the world come to be. We're a little nervous but mostly excited for these appointments and are hoping to get better clarity around what we can expect in the coming few months. We will need to move up to Edmonton a few weeks before surgery so we're looking forward to defining a more concrete timeline and making plans around this. Thankfully we have lots of family and friends in Edmonton, and we spent a lot of time there in our early days as a dating couple, so Edmonton feels pretty homey to us. :)
• One extra blessing with being up in Edmonton is that through David's current work, he'll be able to pick up some shifts at their Edmonton location when we move up there. This will definitely help us out financially so we're really grateful for that!

Some things that are making us nervous:

• We're mindful of not losing sight of the amazing opportunity available to us through surgery. Without that possibility, we wouldn't have the same hope that Tiny can make it home with us. We are so grateful for this opportunity, but also pretty nervous for some of the implications. A few scary things with surgery include the likelihood of missing out on a lot of "regular" bonding moments with our baby. For example, Katelynn will deliver, and depending how well Tiny comes out, we may/may not be able to hold our little one for a few minutes before he/she is taken to the NICU (Neo-natal Intensive Care Unit). Tiny will be put on IV and I will not be able to breastfeed for a while. We're hoping to get some clarity around what we can expect when we have our appointments in Edmonton. But this is definitely part of the reality of surgery being offered that makes us sad and nervous.
• We found out this past week that Tiny also has something called duodenal atresia, which means that the passage between its stomach and its small intestine is very, very small or potentially closed. This is quite common for babies with Down's syndrome, and is routinely repaired with good results. But this does mean another surgery will be required post-birth, and Tiny will not be able to digest food properly until this is taken care of. So again, no normal feeding until this surgery happens and Tiny will need an NG tube so its stomach doesn't try to digest anything as well.
• The timeline for the surgeries as we know it looks something like this: In the first couple of days after birth, they will perform a surgery to take part of the artery in one of Tiny's arms and combine it with a shunt in Tiny's pulmonary artery to help widen the passageway for the blood from the heart to be oxygenated. We are not sure at what point after this Tiny will need to go for the surgery to deal with the pulmonary atresia, and no one has been able to tell us with confidence yet whether that will happen in Edmonton or Calgary. Either way, at some point we will likely be transferred to the Children's Hospital in Calgary before we can hopefully go home with Tiny. From there, we will need to wait approx. 4-6 months (or until Tiny reaches a certain weight) before we go back to Edmonton for the big heart repairs which will be an open heart surgery. We were previously not anticipating having this gap between surgeries so we've had to adjust our expectations pretty significantly. We're so thankful Tiny will be so much bigger when they do the riskier surgery, but also a bit nervous with how this will impact time off from work for David, finances, etc. Another thing we have to surrender into God's hands for perfect timing!

In general, we have been in a place of waiting for these upcoming appointments in Edmonton. I think it's a combo of God giving us the grace we need to sustain us through all of the uncertainty, and also a resignation to just accept that we're not going to get concrete answers right now. There are a lot of "It's looking like...." and "If _______ then ________" types of conversations when we see the doctors lately, so we've had to adjust to rolling with unknowns... This is definitely not an easy place to be for someone like me who gets a thrill out of making plans and scheduling things weeks in advance!

We're mostly optimistic and hopeful, but we definitely have days where the reality of all that is coming down the pipe for us and for Tiny in the next few weeks overwhelms us. We're now at 29 weeks so it is definitely beginning to kinda sorta feel real that we are actually going to be parents and walk this incredibly new journey with a living, breathing Tiny in our lives. We have definitely had several moments of panic, but we're trying to balance them with intentional moments of enjoying being a twosome while we can. :)

The other more vulnerable moments of heartache come from the reality that sometimes: a) people have not followed through on things they've said they would do to support us and b) we've also failed to be intentional in some areas where we could have been more purposeful in cultivating community around us. While the fault doesn't lie solely with any one party, the honest truth is that this journey has been extremely isolating in many ways, and people who show their love and care in both words AND action have been few and far between. The hurt can be very real, but the good news is that it reminds us that Jesus is the only one who truly satisfies our needs for intimate care; plus, the times when we are thoughtfully cared for by people in our lives have had much deeper impact.

With all of the above in mind, here are some specific things you can be praying for:

• We're praying that the duodenal atresia will miraculously clear up; one less hurdle for Tiny to overcome would be wonderful!
• With the duodenal atresia as it stands, there is a possibility that the amniotic fluid Tiny is currently recycling (did you know babies drink that stuff and pee it out?) will build up in Katelynn's uterus if Tiny can't digest it properly. This is not ideal for several reasons, but chiefly it could put us at risk for early labor. This would mean being off work sooner and having to rearrange plans and likely move to Edmonton sooner than anticipated so we'd be in the right place if anything were to happen. Early labor is definitely something we want to avoid, as it would mean that Tiny could miss critical days/weeks of development in utero. Please pray that no matter what, Tiny will stay in there as long as possible to keep growing! And that Katelynn will be able to finish up work at the expected time.
• For our upcoming appointments in Edmonton next week: please pray for safe travels, good communication with the medical staff, and skilled ultrasound techs and nurses. Our past couple experiences in Calgary at the maternal-fetal medicine clinic have been sorely lacking which makes the appointments that much more stressful. Katelynn's mom Nadine will be joining us for the multidisciplinary meeting in Edmonton to be an extra set of ears (and nurse ears at that!!) so please pray for safe travels for her as well.
• Thank you to those of you who have been intentionally praying for our parents and families. This journey has not been easy on them either so your continued prayers for them means a lot as well.
• With a lot of the hurt we've felt from seemingly forgotten promises of support, it's hard to not become bitter. We'd very much love your specific prayers for us to use these tough moments as a catalyst to intentionally love others who are in the midst of suffering, rather than using them as an excuse to blame others and further isolate ourselves.
• Wisdom in knowing how much time and money to spend on preparations for Tiny with so many unknowns around hospital stays, etc. 
• Comfort and peace for the increasingly palpable reality that we are going to be parents after so many months of fairly cautious excitement about this.

Thanks for making it through this long email and for your continued love, prayers, and support. We'll plan to send out a brief update next week once we've finished our appointments in Edmonton.

All our love,

Katelynn, David, and Tiny <3

P.S. We attached a picture of Tiny's face... So special! Boy or girl???

Email 5: Amnio Results

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 fifth email that was sent.
Written December 31, 2015:

Hi again,

We didn't expect to be able to get the news so soon, but wanted to let you know that we got the call yesterday with the results from the amnio... And we now know for sure that our Tiny does indeed have Down Syndrome (also referred to as Trisomy 21). &#X1f60a

While it may be weird for some to understand, we are feeling grateful and relieved. This is the news we were hoping for and we are so thankful God has answered another one of our prayers! This definitely improves the likelihood of surgery being possible for Tiny, but it still depends on how things have developed since the last ultrasound. Until we have our next ultrasound and heart echo on January 20th, we won't know how things have progressed with Tiny's heart and brain or whether surgery is looking likely or not, but we are feeling a renewed sense of hope and are resting in the knowledge that God is watching over Tiny's life more than we ever could.

Tiny has an extra 21st chromosome that will certainly create some challenges for him/her and for us, but more than that, we see Tiny with all the love and potential we would see in a 'typical' child. We know for sure Tiny is going to teach us and all our loved ones so much about life and joy and love. We know for sure that Tiny is going to be SO adorable. We know for sure we love Tiny so, so much and we know for sure that God loves him/her too. We know that because of Tiny's brain and heart, he/she will still likely spend many of its first days in a hospital, but we also know that God will continue to give us the love, grace, and hope we need to be the best parents we can possibly be to Tiny for however long or short that might get to be. 

We are grateful to know there are so many resources out there for parents with children with Down Syndrome, and we are waiting to hear from the genetics clinic again for an appointment to talk specifically about Trisomy 21, what we can expect, and what supports are available in Calgary. The doctor told us Calgary is a great place to be with all the resources available here, so we are grateful God has kept us in this city while we walk this journey. 

We will definitely keep you updated once we've had the next echo & ultrasound. Until then, we would love you to join us in praying specifically for Tiny's brain and heart to be restored and healed. We are encouraged by the fact that the nuchal fluid which the doctors told us at our 1st appointment was not likely to go down, did go down. We are encouraged that Tiny has the best shot now because he/she has Down's Syndrome and not something lethal. So we are hoping and trusting that Tiny's heart and brain will also be restored to a point where surgery, and ultimately life beyond that, will be possible. And we are trusting that even if that is not the case, we can celebrate that Emmanuel: God is with us through it all.

We wish you a very Happy New Year and look forward to what God will do in your lives and in ours in 2016!

All our love, 

Katelynn, David, and Tiny

Email 4: Prayers for Katelynn & Tiny on Tuesday Please!

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 fourth email that was sent.

Written on December 27, 2015:

Hi everyone, Merry Christmas!

This is just a short update to let you know that we are scheduled for an amniocentesis test at 1 PM this Tuesday (Dec. 29). This procedure is fairly common, but also does slightly increase the chance of miscarriage as they put a very long needle through the stomach and into the uterus to draw some of the amniotic fluid (the risk is that it could cause uterine contractions after the needle goes through those muscles).  We have decided it would be best to do the test, which will tell us what is happening genetically/chromosomally with the baby (i.e., does it have Down's syndrome or something more severe), and this information will be very helpful for next time we see the doctors after our next ultrasound (on January 20). Please pray for Tiny, that invading its little home with this procedure would not cause him/her any harm, and for peace for Katelynn as she does the test and attends a class at the hospital in the morning about the procedure. And please pray too that this will not induce an early labor and that Tiny can keep growing inside of mama.

We should know the initial results within 3 days if it is Down's, Turner's, or Edward's syndrome, and if it's not one of those the results take about 2 weeks. Please pray with us for peace while we wait on the results, and in our heart of hearts, that baby would either be found normal, or indeed have Down's syndrome and nothing more severe (many of the other genetic abnormalities are lethal).

We love you, and we hope you are able to enjoy much time spent amongst family and friends this Christmas Season,

Katelynn, David, and Tiny

Email 3: An Update on Tiny + Reflections on Advent

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. 

Email 2: A (Big) Tiny Update (Clever title brought to you by David!)

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 second email that was sent.

Written November 10, 2015:

Dear ones,

I'm sorry I've kept you all in waiting for the next update. I had plans to write this email Friday evening, but then my Dad ended up back in the hospital with some complications from his surgery (earlier in October he had a quading accident and sustained internal injuries which they had to repair with surgery a few weeks ago). He ended up in emergency over the weekend and getting admitted so they could keep an eye on a few things, which fortunately sorted themselves out. So needless to say, not much about the past few days has gone according to plan for us or for my side of the family. You can add my sweet Momma and resilient Daddy to your prayers. It's mind boggling to me how family emergencies like this just wipe you out... If pregnancy alone doesn't make you feel like a walking zombie, all this 'extra' has only added to it and I'm oh so tired. Not dangerously tired yet... But definitely monitoring myself for it. We have mostly good news about Tiny, but this emotional and spiritual journey, the appointments, the explaining to strangers, etc.... It all just takes its toll. So I'll just start by saying that you can please pray for me, for David, for Tiny, and for my Mom, Dad, brothers, and extended family too, as we all navigate recovering from October with all of this uncertainty and trips to the hospital and moments where we all just need a big ol' hug. We're all going through our own stuff based on the past few weeks and it's been rough. Dad went home from the hospital Monday afternoon and hopefully things will be a bit more stable going forward.

Now... Here's the part you've been waiting for. The first prayer God answered when we saw the doctors on Wednesday morning was that the nuchal fluid at the back of Tiny's neck has not grown. YES!! I believe that is a miracle in itself since all the doctors told us it was not likely to decrease. However the doctor we saw most recently said that it has gone down compared to the size of the baby. This means there is a much smaller chance we could lose the baby before our next appointment at 18 weeks. We were of course thrilled to hear this!!

The second prayer God answered begins with a young girl around the age of 13 or 14. This young gal was at home alone one day watching TV. Out of the blue, a commercial promoting Down's syndrome awareness came on and all of a sudden she found herself crying, unexpectedly drawn towards what she was seeing with more than just sympathy or compassion... but with submission. Doesn't that seem such a funny word for such an occasion?! But yes, submission. She hadn't really had many encounters with people like this, but she knew about Down's syndrome and some of its characteristics. However seeing this commercial, she knew something had shifted in her, something that couldn't be unseen. She was being pulled towards this, but there was willingness.  It was heartbreaking at her tender age but it was beautiful; and I believe it was God's special way of preparing this young girl for what might lie ahead.

You may have guessed by now, but that young lady... Well, it was me. Some might speculate and say that was just a coincidence or a projection I was making in a hormonal teenage moment, but I believe that it was the Holy Spirit. The best way I can describe it to you is that I felt God gently place a burden, a willingness, a desire even, to be a mother to a special child with Down's syndrome one day. It felt like He was preparing my heart for a journey I wouldn't walk for quite some time, but He planted a seed--a dream really--and I've hung onto it in the back of my mind ever since.  I remember feeling terrified, excited, confused, and blessed all at once. It was just a special moment between me and God and I didn't tell a soul at the time because I sensed it was to be protected from the well-meaning rationalism of adults. It was too precious to be shared and potentially shattered. David was the first and only person I ever told before our journey with Tiny, and that was years ago. But now that our circumstances seem to illuminate the revelation I received that day, I believe it's time for the story to be shared.

So, back to the news we got. The context for what we were told at our ultrasound last Wednesday is that, at our first appointment where they told us about the issues with Tiny, Down's syndrome was the least likely issue they mentioned because our baby has a pronounced nose bone (which babies with Down's often do not). We were told that it was more likely to be a different chromosomal issue, and these other ones are typically fatal--even if the baby is born, it will often only live for a couple weeks at most. So that is what we were preparing ourselves for. But deep down, my most deep-seated prayer, birthed in the willingness God had planted years earlier, was for our child to have Down's syndrome and not something fatal.

On Wednesday, they took a preliminary look at Tiny's heart and the doctor told us that they detected signs of a large atrial ventricular septal defect (AVSD) which is most often consistent with Down's syndrome. It was the absolute earliest they could take a look at the baby's heart, so there are no guarantees, but we will have a full morning of appointments with an ultrasound, heart echo, and visit with a cardiologist on Wednesday, December 2.

When the doctor told us that it is looking like our baby has Down's syndrome at this point, I loved that my wonderful husband exclaimed "Awesome". I think that's kind of difficult for some people to understand, but when you're preparing yourself for death, and you are told that life is more likely instead, it's truly quite the feeling. We sobbed happy tears of relief that afternoon and felt blessed beyond belief that God had answered those hard, weird prayers for Down's syndrome. Now, it is not for sure Down's syndrome (there is still the possibility of other chromosomal abnormalities), and we might not know for sure until the baby is born, but we feel grateful God has given us this hope to hang on to until we know more.

So in terms of the news, we are doing really well. We're really really excited about Tiny, albeit nervous too, as this heart defect would require surgery/surgeries once the baby is born to repair its heart. These are fairly common procedures for babies with this defect, but as we have learned this past month, we know that all the hospital time and waiting and wondering will be difficult. And we're once again trying to find that balance between preparing ourselves for different expectations for life with Tiny, and still keeping all our hopes and dreams for this little one alive. What we do know is that, Down's syndrome or not, Tiny is going to change our lives for the better. In fact, Tiny has already affected so many people in big and small ways, and we are amazed at how this little life has already changed the world we know without even trying. But we are excited, thrilled, and honoured that if things keep down this track, God might have chosen us to be the parents to someone so special. I love that although people with Down's syndrome have challenges, just like the rest of us (only theirs are a little different), God allows these little ones to survive. Even with that extra genetic material, God allows them to live and enjoy life and bring the sweetest gift of their simplicity to those of us who get to know them... You know, the normal risk for someone my age of having a baby with Down's syndrome is 1 in 1000. I count myself blessed that the possibility of something so precious and rare might be growing inside of me.

The things that have been hard lately include the following: 1) Eating out a bunch (which we don't really have $ for) or eating not so healthily and on the fly because we're just too plain wiped to cook or we've been rushing to the hospital after work or just needing to be away from our house which is often a disaster zone more frequently these days. 2) One of my very best friends in the whole world is in Thailand right now, and if I had a fairy godmother, 100% my first wish would be for even 1 hour to hug, cry, and drink tea with this dear woman who is such a kindred spirit to me (you know who you are, and boy do I miss you). What's a girl to do when life is just crazy and your bestie is a million miles away? Thankfully she is as intentional as ever (huge part of why I love her so much) in reaching out and letting me know she's there but it's still really, really hard to walk through a personal crisis without your favourite girlfriend there to laugh, cry, and be puzzled and frustrated about life with, all in the sequence of an evening. 3) It's sucked that once in a while, people who we try to be real with about what we're going through, skip the listening and go straight to blabbing on and on about how "doctors don't know what they're talking about"  and "don't you know everything's going to be fine" and (though perhaps unintentionally) totally just shame us for not being zealous optimists. 4) Getting up and out the door has been hard for both of us lately. We're in this weird place of both being excited about things that are happening in our lives at work and with friends, but when push comes to shove, it feels like there's barely enough energy to get from the house to the train station in the morning, never mind having the energy to fully engage in executing our parts in these new and exciting developments. That feels super discouraging and frustrating. We're asking ourselves if we need to take time away from our responsibilities and so far there's not a lot of clarity cause gosh darnit, we can't just fly to Hawaii to pretend life isn't as exhausting as it is while sitting on a warm beach. What would we even do if we took a couple weeks to just press pause? Would it even be helpful, how do we carefully construct a plan for an actual healthy break, or would we default to watching Netflix, sleeping on the couch, eating junk, and then feeling absolutely miserable afterwards. So that's the other big prayer request, for clarity around this weird question that's constantly on our minds: do we need to take a break from life and if so, what does that look like?

Then there are wonderful things, songs that speak to us and quiet times in the morning where we receive a verse to carry us through the day, or we get to hang out with some of the people who just make our lives better. There are people who are wonderful, who email us, message us, call us, send us home with lasagna, or who give a warm blanket and a cozy chair to sit in and vent. We thank God for you people. We need you, now more than ever before. Please, oh please, keep at it.

You see, the last thing we want to include in this email is the part that we really need you to hear: Please keep reaching out. We may not have responded to your emails or texts, but we can tell you they meant the world to us that you sent them. We may not take your call cause we're eating dinner or in the middle of taking a moment for self care, but we need you to keep calling, keep emailing, keep texting, keep offering for us to join you for dinner or spend time with you. Please, please, don't stop. If we don't answer immediately, we might be in the middle of something and will call you back or return your email when we're ready. But please don't worry or fret about whether or not we actually want to hear from you... We do. We really, really do. <3

We love you all and appreciate you following along with us and Tiny!

XOXO,

Davelynn + Tiny

Email 1: An Update on Baby Robertson

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 first email we sent out to our family and friends when we first got the news that something was amiss with Tiny. 

Written October 25, 2015:

Hello to our special loved ones,

By now you have all shared in our excitement that we have been given an incredible miracle of life and you know that a little baby is growing inside of me (who we have affectionately called Tiny)! Although it came as a bit of a surprise, we love this child so much already and are so thankful for all the love and prayers that have surrounded its little life so far.

On Thursday, we went for our 12 weeks ultrasound, and were pretty shocked when the nurse sat us down and with care in her eyes, told us they have some concerns. Our baby's nuchal translucency was measured at over twice what it should be for its stage of development. This is a pocket of fluid that builds up at the back of the neck, usually when something is not quite right with baby's chromosomes, heart, or other developmental problems that have occurred. And overall, its skin is filled with more fluid than normal (it looks puffy), which also concerns them. Combined with my bloodwork, this is usually an indication for some kind of chromosomal issue which can also lead to other problems with baby's organs. We were given a bunch of numbers and a bunch of options for different tests that can tell us with a bit more certainty what is wrong (if anything; there is still the possibility that our baby is doing just fine). Some of the tests are invasive, and increase the likelihood for miscarriage. We'll likely wait until our next ultrasound in 5 weeks and see if the fluid has gone down or continued to build up.  At that point, if still recommended, we will likely have a procedure done to tell us with more precision what is wrong (again, if anything). We are hopeful for a miracle that everything will turn out OK, but the numbers have shown that if things continue to look abnormal, there is less than a 15% chance that our baby will survive to term.

Over the next few weeks, there will be lots of waiting, big decisions to make, appointments to go to... Tears to shed, hugs to share, hope to blossom, and love needed. We are so thankful to have an amazing community of people in our lives who love us. Thank you to each of you for the role you continue to play in our lives.

We do, however, want to set a few boundaries in place. We know things like this can be difficult to handle... You might be wondering: What do I say? What can I do? Should I say or do anything? So we thought it would be helpful if we told you exactly what we'd love to see from you as we walk this journey.

1. Please listen. We don't need you tell us about the likelihood that nothing is wrong. Of course we are hoping for that and reminding ourselves of this, constantly. But Dave and I also need to take the time to prepare ourselves for the possibility that this pregnancy will not end how any of us had imagined. Just listening to where we're at is a huge gift you can give us.

2. What we really need is your empathy. What we really don't need is for you to add your own fears to the many we are already carrying ourselves. We know that this will affect each of you in different ways, and because we love you, we wish you didn't have to go through any pain either... We know so many of you are especially thrilled to be a _______ in relation to our baby for the first time, and so we hope you can find your people you can talk to in whatever way you process best. But when you talk with us, please remember that we can only carry so much. We are the ones most significantly affected by this, so we just ask that you keep that in mind as you respond to us with your own emotions.

3. That being said, please don't go away. We promise we'll tell you if we really don't want to talk about it. Otherwise, we've adopted what my Mom & Dad always said to me and Dylan as kids... We can talk about anything. I also promise you won't offend us by bringing it up; we'll feel relieved that you did and we didn't have to pretend everything is okay. And it's okay to ask us questions! If you want more details about what we know and what we're feeling, please ask. It helps us to process, too.

4. Lastly, please pray us through this. We know that your prayers have the power to help carry us in our moments of human weakness and worry. We believe miracles are possible and just want the Lord's will to be done for our little family, whatever that may be. We are grateful he counted us worthy of going through this experience, whether it turns out amazing or terrible. We so appreciate your prayers for us and for our little Tiny. 

Specifically right now, you can pray for peace in our hearts as we wait for more news. We have an appointment on Thursday afternoon with a genetics clinic who will give us more information on the specifics of their findings and the next steps to take. We also need prayer for guidance as we make plans... We don't want to stop making plans for Tiny to arrive, but we also know we have to plan for the other possibilities. Finding a proper balance in this confusing time has already been difficult and will likely continue to be.

We know that through this all, God has our best in mind, and so we look forward to what he is going to do in our lives.

Thank you again for being there for us through all of this. We don't expect a response from you, but also want you to know that we're happy to hear from you.

Big love to you all,

Katelynn & David

Happy World Down Syndrome Day 2016!

Hi everyone,

We want to wish you a most happy World Down Snydrome Day!! Since people with Down Syndrome have 3 copies of the 21st chromosome (whereas others have 2 copies), March 21 (3/21) has been chosen as a day to celebrate the wonderful people with Down Syndrome who grace our world. So happy celebrating from us and Tiny to you!

Last week, our brother-in-law who is quite the outdoors-man astutely illustrated the beauty and uniqueness we see in Tiny not in spite of, but because of, the fact that he/she has Down Syndrome... Here you see a photo of a serving platter made out of what he recognized as Western Curly Maple. It just so happened that the taco appetizer we shared at dinner last week was served on a platter made from this kind of wood, but it turns out there was something even more special about it! If you look to the bottom right of the ringed part, you will see there is a part of the wood that stands out and looks like sunlight radiating through water. Doug explained to us that this is called chatoyance, and it is an irregularity in the wood for which there is no known cause. Although it is irregular, it is this quality that makes the piece of wood so beautiful, valuable, and full of a particularly special kind of life.  Without the chatoyance, it would just be another ol' piece of wood. And so it is with Tiny; Down Syndrome, while an irregularity that often has no known cause, is not a deficiency in Tiny's life, but in reality only makes this little person all the more beautiful and special. For us, we see Down Syndrome as one small part of what makes our baby fearfully and wonderfully made and we rejoice in it! We hope you will join us, today and every day, in celebrating Down Syndrome and advocating for the amazing people on this earth who are gifted with it!

Fun fact about Tiny and Down Syndrome: Tiny actually has a more rare form of Down Syndrome known as "Isochrome Down Syndrome". This means that the third copy of the 21st chromosome didn't actually split off on its own, and so our little one still has 2 pairs of chromosome 21, but one of the chromosomes is extra long and contains extra genetic material. This makes no difference in terms of the outcome for Tiny and how he/she will look or act compared to babies with the regular form of Down Syndrome. It is just an extra bit of chatoyance that makes our baby so special. 

It's hard to believe that in 3 weeks we'll be moved up to Edmonton, and 3 weeks after that, Tiny should be making his/her arrival. We can hardly wait!!!

In love and celebration,

Katelynn, David & Tiny

P.S. Here are some of our favourite videos about Down Snydrome. We highly recommend you take a few minutes to watch them!

1) "Dear Future Mom" from World Down Syndrome Day 2015 (Grab Kleenex!)

2) "How Do You See Me?" from World Down Syndrome Day 2016

3) "Two Conversations That Changed My Life" TED Talk with Tamara Taggart, CTV News Anchor in Vancouver & Mother of a Child with Down Syndrome (I watch this video every few weeks because it is just brilliant)