Our family has been home for a few weeks now. We didn’t write an update yet because we are… tired. Just tired. Down to the bone. Not necessarily physically or mentally or emotionally in particular, but also maybe each of those in particular.

After Whitney started to recover in the PCICU in Edmonton we were transferred to the PICU in Winnipeg at the Children’s Hospital for another week. Whitney recovered from her chylothorax and delirium, and we were able to get her feeding and gaining weight once again. On the morning of discharge our nurse exclaimed “Discharge today! You must be so excited!” To which I said “well, the honest answer is yes, somewhat, but also not really.” I briefly explained how returning home after a month of two surgeries and a heart cath with no progress isn’t as glamorous as it may seem.

This last month stretch in the ICUs was full of many difficult and many beautiful moments. I’ll list some here because I don’t want to forget:

• There was so much parent camaraderie on our ward in Edmonton. This was the first stay we experienced where most rooms had parents staying with their kids. We made many new friends including a family whose son just had a heart transplant, a family whose daughter had been waiting in her room for one year for a heart transplant and one family whose child had just barely been put on the Berlin heart and was starting their heart transplant wait. Because of the nature of their long stays, we were able to really get to know these families and made an effort to visit their rooms each day if we could.

• I had the craziest birthday which included a vehicle scratch-up in a parking lot, a child-shopping cart-flip-orama, a police pull-over, a visit to Hobby Wholesale and a 8’ dragon kite which never saw the sky. Thankfully it also included sister-treats ordered, gifts from family, flowers from Ryan and a homemade cheesecake delivery from Cousin Derek & Siobhan. (Although each time I walked from the family lounge to Whitney’s room with my slice of cheesecake I was greeted with mouthwatering stares from the staff and I would have to turn right around to get more pieces to deliver – was also hounded for 3 days in a row by one doc to get the recipe to her).

• With a little more capacity in my spirit I began painting thank-you cards as we moved along and also developed the Systematic Nurse Dress Code Index – which is a way of knowing how many years a nurse has worked on a particular ward based on their outfit alone. My party trick was wandering the halls with Whitney and announcing to each nurse how many years they had worked there. I got enough right that nurses would send other nurses to our room to make me guess.

While Whitney and I got transported back to Winnipeg via the medical jet once again, Ryan and the twins barely, and I mean BARELY, made it back on the day before the WestJet strike with help from family friends (Bill & Josie) who assisted in both actually getting them home and reducing our travel fees to about 1/8 of the original intended price.

Once home, we spent days unpacking and readjusting to life in a house, and with all five of us together, again. This was quickly followed up by me undergoing umbilical hernia repair surgery one week later (at the same time that Ryan had to take a second round of a vaccine for his MS medication) and then followed up by an ER visit with Ida after a playhouse-rooftop-bumblebee-nest fiasco. Ryan and I have almost accepted that this is how our life will always be, but yet hold a small amount of hope that one day maybe a sustainable day or two may stroll along. Currently Ryan is in charge of all things Whitney since she is above my post-surgery lifting weight-limit for another few weeks yet.

And for Whitney. She requires a lot, per usual. We were sent home under interesting circumstances. We learned that our Winnipeg-Edmonton cardiology team was divided as to what the next steps for Whitney should be. Some thought another immediate intervention was warranted while others felt she should return home to rest and recuperate. As she is back on the central shunt physiology, but at an age and weight that is likely not to sustain it for long, we were given pretty clear directives: watch her like a hawk and get her plumped up. We monitor her oxygen three times a day, administer 14 medications daily, have a medical scale for daily weights and have regular bloodwork/pediatrician and cardiology appointments. Our monitoring of Whitney will indicate if she needs to return in the next few months for another Glenn re-try or if we can push her far enough along on this heart that she could potentially make it to a good size/weight for the Cone procedure. The team was clear that sending a baby home under these circumstances is new territory for them, and they are not certain what will happen. I’m sure one could imagine the peculiar spot that puts us in as parents. We have returned home and are, what feels like, cosplaying as a regular family with a baby but with an undercurrent of ‘ALWAYS BE ALERT.’ Currently we are failing at our one job to plump Whitney up as she may have decided to be milk-protein intolerant and is losing weight. We hope to resolve this and regain our status as fully competent parents.

Otherwise, Ryan and I have resolved to find a new way to live where Whitney’s current status does not determine the state of our family’s wellbeing. No high-highs, no low-lows. Her condition at any time can change drastically and if we let ourselves get pulled along with that we will remain in constant limbo. So here we are making plans for kindergarten, work, coaching volleyball, seeing friends, etc. all with the underlying knowledge that nothing in Whitney’s journey has settled and we may need to return to the ICUs at a moment’s notice. We made a “In This Family, We:” poster and no. 4 is “Are Dynamic and Unfazed.” We need to be able to change, to adjust and to not get overwhelmed even though we are constantly in flux and our load is more than we can often bear.

Praise God for his grace for us and for those he sends our way constantly. We returned home to a fully stocked fridge and pantry (thanks Robyn & Mark) and have received gifts, food, muffins, visits and donations. People are so unique; some donations have been one time, some have been regularly scheduled and even one was an anonymous late-night-doorbell-dash-substantial-wad-of-cash-tossed-onto-our-doorstep situation. Everything we have received from anyone in any amount or form has gone straight to our hearts and straight to care of our dear family.

Thanks for following along. Until next time,

Ryan & Sarah

There are many interesting phases of motherhood - I say as a person who has never lived that half of the equation, but as one who has been immensely impacted by great versions of it. Each day in this phase of our journey with Whitney I have seen many pieces of the role a mother plays. I’ve watched as Sarah chooses to take the majority of the night shifts in hospital with our daughter, while my mom switches from caring for her twin grandchildren to her granddaughter stuck in the ICU. I’ve seen Sarah walk home from a night shift to plan creative outings for Brooks and Ida while my Mom makes food for her son and daughter-in-law so they don’t eat cliff bars for supper.

We’ve spent a lot of time with the Dr’s, nurses and respiratory therapists of the PCICU here in Edmonton. We’ve managed to get a number of them scolded for spending too much time our room, which has been fun. But we’ve also received countless questions of “how do you guys do this??” There is a genuine confusion at our ability to navigate the endless challenges the journey has presented without losing ourselves. Our answer is always the same and it has extremely little to do with us. It starts with truly knowing God, but is followed quickly by the support of our families. Dr Vijay asked us this question the other day and Sarah said, “have you met Ryan’s mom??” implying that he needn’t look far to find some of these answers.

This is the third time in the past 12 months that my mom has dropped everything to fly across the country (at her own expense) to offer herself completely in the service of Sarah, myself, the twins and of course, of Whitney; and I think it needs to be acknowledged in writing. This sacrifice includes but is not limited to: having to step away from work at a moment’s notice (and her work allowing her to do so), missing time with her other young grandkids, missing time with her husband, giving up her summer break, sleeping on hospital cots to give Sarah a break, staying by Sarah's side and watching difficult procedures when I've needed to take the twins back to Manitoba, packing and unpacking her life multiple times to drive back and forth from Edmonton, dealing with the twin's cranky attitudes when they are disregulated during critical ICU days, mentally carrying the load of this journey alongside us, and more..

Another piece of impact, one which is often overlooked, is what has been built into me over many many years. The instruction and example set by my mom over my life has also given me the ability to handle this as well as I have been. My own actions are a great testament to her love, sacrifice, selflessness and guidance over the years of my life, not only in this season.

As I reflect on this all, it becomes clear that the impact of a mother stretches so far beyond the individual being raised by her. The sacrifice of one person, can carry the weight to impact countless more. I can’t imagine this is the way my mom had hoped this season of her life would play out. But without fail, she continues to do what she has done for me my whole life; sacrifice herself and her own desires in the service of those she loves. I speak for each member of my family when I say that none of us would be where we are today, would it not be for her.

As for Whitney, it has been 11 days since her second surgery and recovery has been tedious. She seems like a baby who has been through two open heart surgeries and a heart catheter in a short period of time. More medications, longer sedation, slower extubation and further complications were all in order. She has had blood clots, blood infections, high grade fevers, drug withdrawal, and, a new one for us - delirium. The delirium really added a whole new level as it has made it feel like we are caring for a completely different baby, waiting for Whitney to come back to us. Situations change so quickly in the ICU, both positive and negative, and some days we have wondered if we would be here long-term. But yet, today Whitney saw good improvement and there is talk of sending us out of the ICU, either to a different ward or Children's in MB. Whitney currently remains on breathing and feeding support, as well as anti-delerium and other medications.

The plan is to eventually make it home again, essentially returning in the same state we had left in. We anticipate returning to the PCICU here in Edmonton in a few short months to re-try the Glenn surgery again. Much of our "life will restart after this surgery" plan is now in shambles once more, but we are learning to continually centre our life and peace around things that are true and stable instead of around how Whitney is doing or where she takes us.

Lastly, Sarah had a close friend put together a poem for my Mom as a thank you for all she’s done for us and it feels fitting to end with that. (Margaret Letkeman is my Mom’s mom)

The Prayer of Margaret Letkeman

When Margaret Letkeman first was told
That God had ordained one final soul
To come through her, she fervently prayed
That He’d bless the child of her old age.

So he sent Corinne, long after the rest
And God heard Margaret, for Corinne was blessed.
And when the time came for her home to leave,
He sent a good man to whom she could cleave.

And then came her first, a strong-hearted son,
Then a sweet daughter, and another one!
One a brunette, one blonde, another red,
They all grew up, and they all were wed.

‘Twas around this time that I came in
For Margaret Letkeman prayed for twins
and God was pleased to hear again,
The prayer of Margaret Letkeman.

God made me the mother of her answered prayer
The wife of the son of the daughter, her heir,
Margaret Letkeman’s heart, and the love of Corinne
Inextricably wound in what God had foreseen.

For into our lives the Lord had seen fit
To send many trials with the blessings in it,
And He made sure that His help was, in part,
Performed by the hand of His Matriarch.

In those years, many aches, pains, and more,
Came constantly banging and pounding our door
And when there were times we knew not what to do,
Armed, she’d arrive, with her love and good food.

She’d hand it off quickly, and scoop up the twins
The fair-haired-beloveds, our Her and our Him.
And then off she’d send us for quiet or sleep,
To recover, to pray, to laugh, or to weep.

“One more,” we said, and so she came
And after Corinne, we imparted her name
But like some strange, sad comedy
This little girl, too, was an anomaly.

They warned us she’d never live or take breath
And they cautioned us that this would surely mean death
But then out from Margaret Letkeman poured
A prayer that went straight to the ears of the Lord.

We stood with our girl, looking death in the eye
And bound west for Edmonton, bid family goodbye,
And while many helped us, who was there to the end
But the daughter of Margaret Letkeman.

She little imagined while she laboured in love,
How much like her mother she had slowly become.
The spirit of her mother, whose faith would not shake,
God had poured on Corinne, for Whitney’s sake.

And now alive, here she is, the one whom He blessed
Laying peacefully now on her grandmother’s chest
With half of her heart, and half-named Corinne
The great-granddaughter of Margaret Letkeman.

And may God hear the thousands that say “Amen”
To that prayer of Margaret Letkeman!

-A.B.
On behalf of Sarah

Ryan

Whitney underwent surgery yesterday from 7:30pm until 12am. We were able to see her again at 2am. Her surgery was delayed due to another heart transplant. The next day held two more transplants for our surgeon so Whitney's surgery needed to be squeezed in during the evening window.

Whitney is stable and recovering, however the surgery was unsuccessful. The team enlarged her pulmonary artery, tied off some collateral vessels and re-attached the rogue vein. However, when these items were all completed and everything was looking great, for some unknown reason her body was simply not oxygenating (saturations of 30-40%). The surgeon shared with us his frustration that there was no clear reason for the Glenn to not work. As such, it was necessary to 'take down' the Glenn, meaning that Whitney's heart returned to the physiology she had before we came here (the shunt was put back). Essentially, Whitney has undergone two open heart surgeries and a heart cath to no avail.

This is certainly not the news we were hoping to hear from our team. We feel somewhat unsurprised based on the nature of how complicated Whitney's heart has always been. It is hard to receive an unsuccessful debrief, and harder then to reconcile how much Whitney has had to endure this week.

Whitney will stabilize and hopefully be extubated soon. Her heart cannot stay in this state for too long (several months, maybe). We are not sure what's next and will let the team confer before offering up ideas of our own understanding.

Sarah + Ryan

This morning’s conference concluded that Whitney should have imminent surgery, however, we were unable to move forward today due to pulmonary hemorrhage. Surgery utilizes a heart/lung bypass machine, which requires Heparin (a blood thinner). A blood thinner + a lung bleed is a recipe for disaster. Thankfully, over the course of today her lung bleed has reduced dramatically and surgery has been scheduled for tomorrow morning.

Our surgeon is prepared to go in and repair Whitney’s Glenn. He will extend/enlarge her pulmonary artery with more patching, will attempt to plug off the second collateral blood vessel (if it can be found) and re-attach another loose vein back to the heart (this random vein has been heading to no-man’s-land for a while).

Managing Whitney today while she was intubated and sedated was a tricky business. A Glenn heart does not want to be intubated for pressure reasons, but her lung bleed requires intubation to help clear out the blood in her lungs. So it was a delicate balancing act today, also along with sedating Whitney enough to not be in pain, but still be able to breathe. Our nurse-turned-friend did a great job caring for Whitney alongside hours-long conversations with Ryan regarding coffee, espresso machines, soccer, tennis... You name it. Those two were vibing. Other conversations with specialists and social workers coming and going through our room covered topics such as parental involvement, perspective/privilege and our relationships with God vs following ‘steps.’

We also received reinforcements! Ryan’s sister Robyn flew out and will be with us for the weekend; a welcome presence to combat the angst the rest of us have been feeling.

If all goes well tonight Whitney’s surgery will take place tomorrow morning at 9AM. It won’t be straightforward! Our surgeon has his work cut out for him. We will be waiting and praying; thanks for joining us.

Sarah + Ryan

After an arduous day of managing Whitney in her hospital crib (8 hours of her not being able to eat; you can imagine) we sent her off to the heart catheter lab. A few hours later we got the call from our doctor, "Hey, so I have bad news." Turns out both issues we anticipated were present: 1) Whitney did have collateral blood vessels and during the cath they blocked one off, and 2) her pulmonary artery in her heart is still too small. The second issue is major. It could not be fixed in the cath lab and will require another open heart surgery.

Tomorrow morning Whitney's whole team of cardiologists/surgeons/intensivists/etc. will meet and they will update us with a plan shortly after.
Dr Freed, our surgeon, is mulling over how to approach this issue. It is the same issue he tried to fix during her surgery just one week ago. There is potential that the surgery could take place tomorrow.

We are not disheartened, but we definitely are concerned. Two open heart surgeries and a heart catheter in the span of about one week feels daunting for Whitney's little body and heart.

Please pray for Whitney. Poor girl had a miserable last 48hrs, is now intubated, and might be opened up again tomorrow. She's still a super-cutie though. And also still determined; although sedated she has already required arm restraints due to her efforts to pull out her breathing tube.

Sarah

Sometimes I feel like I’m stuck on a road trip with one of those old school GPS’s that would just repeat “recalculating” over and over for 10 minutes if you missed a turn. You plan for the journey, anticipate different potential outcomes, go over your route ahead of time and do your best to have everything in order. But this journey, much like a GPS on a road trip, manages to always take you down a route you didn’t expect.

Whitney did her best to make us think things would go differently this time. We’ve been through this enough to know that recovery rarely moves in a straight line, we know the danger of having expectations of things will play out.. we’re not rookies any more. This time however, Whitney was playing by the rules. She was successfully extubated first try, started taking a bottle less than 24hrs after surgery and each day was weened off another medication. The bulk of her lines and some chest tubes were removed after a few days and by Sunday plans were being made to send us down from the PCICU to the less intensive children’s ward on floor 4.

We spent Sunday night on 4C but it wasn’t long into Sarah’s night shift when she noticed things were a little off. Post Glenn surgery the expectation is that oxygen saturations will improve to sit more consistently in the 80’s, meanwhile Whitney was sitting in the 60’s overnight. We moved back onto hi-flow oxygen to help push a bit more oxygen into her body but it had little to no effect. On top of this, Whitney kept getting upset (not unexpected after a big surgery) and would cry for a bit before slumping to the side and her saturations dropping into the 50’s… something was not right.

By Monday morning we decided with the team to call some intensivists from the PCICU and transport team to come assess her as we tried to understand what was going on. After the assessment the decision was made to move her back up to the PCICU where she could have a bunch more tests and hopefully find out what’s causing the issue. We started with an X-ray which looked great, then to an echo of the heart and new Glenn physiology, also great. We did some more oxygen testing, putting her back on Nitric for a bit to see if that would help lessen some pressures and improve her saturations, still no change. Then we had a new one, called the bubble test. In this test they agitate some saline, causing bubble to form and inject that into her IV, while at the same time an echo is monitoring her heart and counting the amount of pumps it takes to bring the bubbles onto the screen. This was the first test to come back positive and started to give us a picture of what the potential issue is.

The Glenn surgery changed Whitney’s circulation so that blood returning from the upper half of her body now flows passively into her lungs, bypassing the heart before it becomes oxygenated. This helps reduce some of the workload on her single ventricle. Because this circulation depends on blood flowing easily through the Glenn pathway and lungs, the pressures there are very important. If the pressure is too high or the flow is not smooth, the body can sometimes form collateral blood vessels (extra pathways) that allow blood to bypass the lungs instead of being oxygenated. The bubble test helps the team look for signs of these collaterals. If they are present, they can contribute to lower oxygen saturations because some blood is returning to the body without first picking up oxygen in the lungs.

All that to say, this means that a few days after open heart surgery, Whitney will again go under for a heart catheter to diagnose and hopefully fix whatever is causing the issues I mentioned above. This sucks for many reasons, not least of which is just the amount of extra time we will now need to stay here for this next procedure and subsequent recovery. A procedure like this also presents a much bigger list of risks and potential complications when done so closely to her last surgery. Then there is the reality that they may not be able to solve the issue they find during the cath and in that case she would require another open heart surgery to fix the issue.

I’m sitting and writing this a couple hours after going through the procedure and potential outcomes and complications with the cath specialist which has now been scheduled for tomorrow. You nod your way through these conversations, as you know they are required to inform you of the risks before you begin, while at the same time trying to mentally face the thought of our little girl going through this all again and the unrelenting reminder that any of these moments with her, could be our last. I’m gearing up for a long night as Whitney is miserable with sats that low and knowing she will go NPO (no food) at 6am until her procedure which will add fuel to the already very hot fire of discomfort Whitney is enduring.

Some days it feels as if this is how our life will look forever and you wonder how you can keep going. Here are some of the things that get us through the day and help us be ready to face the next one. Obviously this starts with God, there hasn’t been a day yet where He hasn’t walked with us, carried us, given us the energy and strength we needed and been true to who He says He is. Our family, both immediate and extended, has been a constant source of love and support. Our wonderful friends and team in the PCICU who welcomed us back with hugs and smiles, there are so many incredible people here and it made it a joy to be brought back up to this ward. Relatives of relatives who got in touch to offer a meal and stopped by with an absolute feast from a local restaurant. And last but not least, our little fighter keeps us going - she hasn’t given up the fight yet and neither will we.

Please continue to pray for Whitney and for our family as we take one step further into the unknown.

Thanks for following along.

Ryan

Whitney’s Glenn surgery was successful.

Thank you for the patience on this update. The surgery days, before and after, are always extremely full and tiring in strange ways.

On Thursday morning we were up at 4am to complete Whitney’s pre-op prep and were ready at the hospital for 6am. A few minutes before her scheduled start time we were notified that it would be delayed. Whitney’s surgeon stayed up until 4am the previous night to complete a heart transplant and wanted a little rest before starting Whitney’s surgery. At 1:15PM she went in, and we were given a 3-4 hour estimated total wait time. By 6pm we were still waiting. This would have been concerning had I not ran into a different cardiologist on my way to the washroom who had some insider info on how it was going (well, she said). By 7pm I called our post-op unit and they profusely apologized that they forgot to page us. By 8pm we were able to see Whitney again.

The Glenn procedure successfully removed the superior vena cava artery from the right ventricle of the heart and attached it to the pulmonary artery. However, during this they discovered that the pulmonary artery was even smaller than they had expected and needed intervention. Our surgeon made multiple attempts to enlarge it, firstly with Whitney’s own heart tissue, but eventually needed to patch it with a synthetic material. Our surgeon is a busy man and we have not been able to receive the full update in person yet. This synthetic patch will not grow with Whitney and she will likely require another heart catheter/etc. at some point to alter it.

Walking back into the PCICU to see Whitney post-surgery was both difficult and a huge relief. During the 7 hours of waiting we had very little emotions or thoughts (probably the brain’s way of protecting itself). Upon seeing her we realized that during the last 7 hours we had been stifling thoughts of if we ever would again. These surgeries are common here, but major, and there are no guarantees.

We’ve been reminded a few times during this trip what a unique case Whitney is and what a miracle her life is. The receptionist at the pre-admission unit (somewhere we had never been before) remarked “oh THIS is Whitney” and proceeded to tell us how during her birth everything had paused to make way for her. When we saw our surgeon before Whitney’s operation he commented that he was surprised at how well she was doing as “well, you know, her first surgery had quite a high mortality rate.” The cardiologist I ran into the hallway on my washroom break also recognized me and told me how Whitney’s case has been presented at different conferences across the country and discussed among her circles, including with the couple who invented the surgery that Whitney may be a candidate for a few years down the road. These moments both sober us and amaze us. Whitney is so special. We all are so special. This is just the way that Whitney is, and we feel the responsibility and blessing of caring for her as she continues along this journey.

Since her surgery, Whitney has been doing quite well - a new thing for us! She has been extubated successfully, has had her IV pole of meds removed and just this morning had many of her IV lines taken out. She has developed chylothorax and needs additional medication for lung pressure, but these are a little par for the course. We are also helping her cope with ‘Glenn head,’ the term for the severe headaches these babies have as they adjust to their new physiology. All our familiar nurses and doctors are tentatively waltzing into our room and are also surprised to see that troublesome little Whitney is actually doing pretty good. We, of course, know that a mountain of prayer and support is behind her, as well as a God who deeply cares for and has plans for her.

A big thanks to Ryan’s parents who uprooted again for us and are taking care of the twins, food, laundry, coffee - you name it. Brooks and Ida are doing pretty well. Their emotions and actions during days leading up to, and of, the surgery were pretty intense. Yesterday they each got to see her for the first time post-op and were visibly relieved. Afterwards we went out to have tacos at the park and Brooks spontaneously sighed and announced that “I am just really happy that Whitney did not die.” This weight must have been lingering with him since early last week when he had announced at the breakfast table that “If Whitney dies I will be… very disappointed.”

We hugged him and told him that we, too, are very happy Whitney is alive and could genuinely assure him that she is doing well right now. And this assurance is now spread to you all, as well as our thanks for your prayer and care. We will be here for hopefully another few weeks while she recovers and will update as we can.

Sarah

Whitney has officially passed the first test, which was getting through the last few weeks and all the tests of the past couple days, healthy. This alone is a big victory for Whitney as it ensures she gets the surgery her body needs on time. However it creates quite the conundrum for us as we we tried to get through the past couple weeks as quickly as possible to arrive at something that we were not looking forward to.

But here we are, on the eve of the surgery with everything in its proper place. Tomorrow morning at 7am (Edmonton time) Whitney will head into her second life-saving surgery. We ask for prayers through this surgery and the subsequent recovery. We love this little lady very much and now, as always, she is in God’s hands.

See you all on the other side.

Ryan

It was very hard to pack up our life and head to Edmonton back in November with a small chance of Whitney making it into the world alive. But now that we’ve lived with her, now that we know her; how much harder it is to go back.

About a week and a half ago we got the call that Whitney’s next open heart surgery has

been scheduled for July 9th. And so we sit again on the floor of our living room with our lives shoved back into the same suitcases as they were 8 months ago to once again give Whitney her best chance at a life on this earth.

We knew from the beginning that Whitney would require a minimum of three open heart surgeries to resolve the many complications she was born with. The second of which is known as the Glenn and is much more common than the Modified Starnes procedure she had at 3 days old. Over the last few months she has started to outgrow the hardware and “mapping” from that first surgery. The Glenn reroutes things a bit and sends blood from the upper part of the body directly to the lungs, bypassing the heart. This should help her circulation to be a bit more efficient and put less strain on her heart, as she is operating with only one functioning half to begin with. If all goes to plan she will live with this “set up” for the next few years while they plan for the surgery she will live the majority of her life with.

I could write for so many hours about how these last few months have felt, about how it feels to think about our beautiful little Whitney having her chest opened up again.. and I hope to have the capacity and time to do so over the coming weeks. This experience has changed us so deeply and in many ways that will probably take years to fully understand, but I think it’s worth documenting. I think it’s more than worth the effort it requires not only so we can remember this journey, but so that those of you who’ve followed along can get a glimpse into what life can look like when you walk through the darkest seasons with God. We have changed, but God has not - He has been exactly who He has said He would be. We step into more uncertainty with that certainty, again putting our hope in Him rather than an outcome.

We are so thankful for those of you who have supported us this far. We have had countless meals dropped off, so much financial generosity, check-ins, texts, gifts and unceasing prayer for each member of our family; it’s allowed us to keep going. We are excited to be doing this leg of our journey as a family as we fly out with the twins and Whitney on Tuesday. It won’t be just us though - my parents are driving out tomorrow to support us out there; another reminder of how loved and supported we are.

Ok, that’s all for now. Thanks for following along.

Ryan

Photos: stephanielauren.co

It has been a hot minute since I had a chance to write out the combination of thoughts and updates that fill this blog. Back in November I started this blog as a way to keep those who wanted to follow along up to date, while forcing myself to process things in order to put my thoughts into words. I’ve had a hard time staying present over the last month or so which is somewhat of a normal pattern for me unfortunately. But I feel personally that a lot was learned over this past week as we continue to navigate this twisting, challenging journey.

What’s happened over the past week? A lot.

We’d known since our initial discharge from the NICU in Wpg that if Whitney was to ever get sick, she would most likely require care in a hospital to get over it. We have a red folder with documents that go over how we should be assessing her on a daily basis and how something as small as a cold is often enough to require a hospital stay. A couple weeks ago, Whitney got a cold. We ratcheted up the intensity of our monitoring and stayed in close contact with the cardiology team in Winnipeg and our local paediatrician. The heart and respiratory systems are so closely connected, and any time the respiratory system is put under stress it doesn’t take long for that stress to start taking a big toll on Whitney’s body.

Just over a week ago, we noticed her effort of breathing start to really increase and by Monday things had taken a quick turn for the worse. As Sarah and I were kneeling over Whitney and checking her oxygen saturation, Ida came up soaking wet. To all my fellow homeowners, you can probably feel the pang of stress that this brings on; as I stepped onto a soaked basement carpet I knew how I would be spending my next few hours. What I did not expect was needing to keep such a close eye on Whitney while coming up from cleaning up the leak/getting a new hot water tank, and, a few hours later, needing to bring her to the ER. Things can turn very quickly when dealing with a cardiac baby - something we were reminded of as she switched from handling the sickness well, to being seen immediately upon walking into a very full ER. Her work of breathing and oxygen sats in the 60’s meant she was taken very seriously, very quickly. And so we found ourselves once again, adapting to a new hospital unit. A few “epi-nebs” later and Whitney was back on oxygen and in an ambulance bound for HSC Children’s Hospital.

She spent the rest of that night and the majority of the next day in the Children’s ER while waiting for a bed to open up on the ward. After being admitted Whitney was put on Hi-flo to give her some extra pressure and assist with breathing, while Sarah and I got to work setting up a stay at the Ronald Mcdonald House and finding the best way to get the twins out to Winnipeg. These hospital stays are a logistical nightmare and we are so grateful for the support we receive which allows us to constantly stay by Whitney’s side.

The routine that Sarah and I have to fall back into during our stay is very intense. We stay with Whitney 24/7 and throwing the twins into that mix means Sarah and I split our time at the hospital into shifts and try our best to give Brooks + Ida whatever we have left. When we first got to the ER our bodies were fighting it, feeling immediately overwhelmed and on edge despite only being there for an hour or so. We’d barely been home from Edmonton and the last thing we wanted to do was go back into “go-mode.” But we know we are capable of going there and in the face of this new challenge we quickly adapted and settled in to the routine that is starting to feel more normal than regular life.

I grew a lot this past week; or maybe it was just the pieces of a long process finally falling into place. There are so many days where I get frustrated and overwhelmed by needing to manage these two big challenges at the same time: Whitney’s health and my own health. How I long to just be a healthy person who knows they can recover fully from the way we expend ourselves caring for Whitney. But this past week, I was just able to meet God in the hard and exhausting moments, rather than the moments overwhelming me, and start the pattern of mentally and emotionally stepping away. It didn’t take the hard away - I still have to walk through that - but it gave me what I needed to keep walking forward, to support Sarah, be the type of father I aspire to be for my kids and to somehow experience joy in the midst of it.

Whitney was stabilized fairly quickly in Winnipeg. We were able to support her with some oxygen and monitor her constantly to ensure she wasn’t working too hard. Slowly she dropped down to lo-flow and was able to titrate that down to 0.1 litres (she was on 0.4 at home prior to the heart catheterization) where she stayed for a few days. We find that when we’re not in Western Canada’s dedicated heart hospital that our own medical roles increase quite a bit. The team is often looking to us to gain an understanding of how Whitney handles things and how she has been cared for while at the Stollery.

On Saturday late afternoon she finally passed her off oxygen test and after being off for 24hrs talks of discharge moved quickly. The cardiology team in Winnipeg wanted to do an Echo before we left, just to ensure everything was functioning properly on that end. Initially that was scheduled for Monday, but the on call cardiologist noticed a number of kids waiting for an Echo and came in on Sunday to get them all done. We did notice that a bit before and after the Echo that her sats were sitting in the lower 70’s - below the 75-85 goal. We weren’t quite sure what to do with this but after watching her climb a bit and then drop a bit the team felt comfortable sending us home as we ensured them we would watch carefully over the next couple days.

And so yesterday afternoon we packed up and headed home, exhausted, relieved but a little sad to leave? It was a strange feeling heading home but not really wanting to go home. Somehow the process of giving ourselves so fully to the situation we were in allowed us to find the joy available in it and as a result made it slightly hard to step out of it and into the unknown of “regular life” once again. My assessment as I write this is that we will just need to use the same practices we applied in our latest hospital stay to our life back home. It will be an interesting experiment but I think in time we will find the joy in our life back home again as well. This feels like a partial thought, I may need to spend some more time on this as it’s all a bit fresh - but at very least a view into the thoughts and challenges we face today.

Speaking of today, I would like to say I’m writing this from the comfort of my home, but alas. We find ourselves back at Boundary in the ER, with Whitney once again requiring oxygen support. Last night was less of a night and more of an extension of the day. We put Whitney down for bed and checked her sats as usual, but unfortunately she was hovering around 68-72 which left us feeling completely uncertain of what to do next. Do we pack up again and head back to the place we were just discharged from? Do we try and get to morning and see if a bit more time allows her to settle out? We decided to wake up every hour and recheck her, suction her and even had a very steam filled shower with her at 3am to try and break up the congestion.

After everything we tried, she was still low and so we packed up again to head back to the ER. She gave us a couple more false dawns throughout the early morning that she might be able to make climb back up, but by 10am we were back on oxygen at Boundary. Currently I am sitting at the end of Whitney’s bed, Sarah is reading a book and things are fairly calm. It seems that Whitney will need a bit more time on oxygen support to get over this sickness and so we once again will adapt to what is presented and do our best impression of normalcy.

We cautiously hope this can be the tail end of our hospital stay, but as we know - Whitney is calling the shots and we are just along for the ride. Thanks again for your prayers, support and for following along.

Until next time,

Ryan

Whitney and I returned home just in time for Mother’s Day; a beautiful gift.

During our last few days in Edmonton Whitney was doing well. The medical team let us know that we could be discharged to Winnipeg, where we would have to spend a few weeks in the hospital weaning Whitney off her sedatives (as Winnipeg would not allow discharge of a baby on opioids). Alternatively, we were given the option of being discharged directly from Edmonton with the meds so we could do the weaning ourselves at home. Yes, I said I liked that option. So we scrambled to procure all the medications, dispose of our oxygen tank, say goodbye to remaining friends and find time to sneak into the abandoned hospital library. And just like that we went from 24/7 monitoring and medical care to whipping around a cooler full of meds and administering a few doses to Whitney on the middle of a commercial flight home.

The return home was very sweet – I surprised the twins a day early, gave my dad a happy birthday hug and got to nap on a couch in the sun with my kids for Mother’s Day. The return home also included adjustments as we now had a 15-dose-a-day medication schedule for Whitney. We spent many hours a day carefully filling syringes, triple checking times/amounts, administering doses and monitoring Whitney to make sure she didn’t throw any of it up. Parenting a baby while weaning them off opioids is not an experience we had anticipated in our lives! However, other adjustments were much more positive. We turned off the oxygen concentrator (our home is so much quieter!) and rolled up all the tubing to store away. Heading out for walks or car rides or even just to the backyard is now just a piece of cake without having to switch over to portable tanks. Whitney is happier, more relaxed and has even started to laugh a little.

For me, there is always a mental adjustment returning home as well. The time spent in intensive care units is, well, intense. I had spent the better part of one month, night and day, mentally ‘on.’ I’ve seen Whitney in pain, in anguish, declining, recovering, confused, sedated, bleeding out, fighting to live… all while staying informed about her care, the daily/nightly plans, monitoring and assisting in administering feeds/medications… chatting with nurses, doctors, OT/PT, respiratory therapists, KidClot team, social workers and cardiologists about Whitney, their work, their lives etc. It is all-consuming, but also a great privilege. To be able to remain constantly by Whitney’s side is always a reminder of the immense support we are receiving. And it makes a difference! On this trip in particular we caught oversights in charting that altered the course of extubation decisions, noticed errors in medication dosing before it was administered, assisted in many decisions about Whitney’s medical care due to our constant observation of her, and helped get Whitney discharged quicker (I wish everyone could have seen my deadpan stare when the team said ‘well we wean the meds every two days but we’ll wait an extra day because the last wean was done on Sunday and we don’t really like things done on Sundays’). We also spent many nights this trip in shared rooms with other babies; hearing many suffer or cry alone has also reinforced our thankfulness for the support that allows us to stay by Whitney so constantly.

So, the return home allows my brain to relax a smidge, and then the rest of the body crashes soon afterwards. And then, strangely, we spend just a few days together as a family making pancakes or going for walks or attending church and my brain thinks “oh, life is ‘normal’ – did that last month even happen?” I find myself wondering why Ryan and I haven’t bounced back quickly into fitness or work or school or volunteering, and why does every day feel so draining and difficult, and have we lost all gumption? I look at Whitney with no oxygen and wonder if any of it even happened at all. Ryan and I often remind ourselves that we did indeed live out of hospitals for the majority of this year, that we have sacrificed a lot to fight for Whitney’s life, that this all did happen and that it does take a toll.

Something that always helps to affirm the difficulties of our journey is all the support we receive (queue up me searching up synonyms for ‘support’ since I’ve used that word too often now). I returned from Edmonton with a cooler bag of frozen breast milk and literally could not find a spot for it in any of our freezers. They were packed with meals, muffins and snacks dropped off by family and friends. Our home is full of art, notes, cards, quilts, blankets, stuffies, needlework, etc. that has been created for Whitney. It’s so beautiful and so meaningful; for Whitney, when she’s older, for the twins, to see how a community cares for a family, and for Ryan and I, to know that we are not alone in this.

And so we make our best attempt at savouring each day despite (or because of) everything this year has already been. There is simultaneously so much exhaustion and so much joy. We’d like to just settle in for a hot moment but we received the call yesterday regarding Whitney’s next surgery. She is a priority 3 (out of 5) and is on the waitlist for her next major open heart surgery, anticipated to take place during the first two weeks of July. We will only receive the confirmed date a few weeks prior to the surgery. This next surgery, the ‘Glenn’ will redirect blood from the upper-body directly into Whitney’s lungs so that the single working ventricle of her heart does not overwork itself. Her central shunt will also be removed. These changes are anticipated to improve her oxygen levels again.

So we have about one month to wait, recover, reacclimatize to regular life and start planning out what our new reality will look like after this next major surgery. For now we again say thank you to everyone for letting us know that we are not alone and say thank you to God for carrying Whitney, and us, this far.

Sarah

Well! Just writing a brief update here to say that Whitney has pulled a complete 180.
First, she had a dark night. Her oxygen saturation dropped, she was pale, the monitors were dinging off, her blood gas numbers were astronomically low and the doctors were back in the room. She needed a full bag of blood and Ryan’s mom and I were giving each other “oh dear, we are going to be here for a while” looks. The night was long and turbulent.

But then the morning came, the sun shone, I shuffled slowly into rounds expecting to hear bad news – but no! Not this time! What happened? Who really knows! Basically overnight Whitney’s internal bleeding stopped, her limbs stopped bleeding, her lung x-ray looked great and her blood gas was “excellent.” What else? They took her off oxygen support! A respiratory therapist stopped in to give Whitney a light-up capybara! We got a free snack at Jugo Juice! And today’s crossword feels effortless?!

A sincere thank you for the prayers as the impact is so tangible. I suppose that’s really why I’m writing this quick update; I really want everyone praying and caring for us to know what a difference it makes.

Today I walked under the clear sky holding my americano misto in one hand, victory punching the air with my other hand and thanking God for this wonderful day.
Whitney is playing, smiling, chugging bottles and snoozing like she doesn’t have a care in the world. The doc said if all goes well we should be home in a few days.

Just lovely.
Sarah

Good news or bad news first?

Good news! Whitney was successfully extubated on Tuesday! Thank you to everyone who was praying! The doctor and team pulled out all the stops and left no stones unturned. Interestingly, it was under the direction of same doctor who successfully extubated Whitney on her third try back in December. After this week’s successful extubation I asked her “hmmm, is this a coincidence or you?” She said it was probably just her OCD. Whitney’s lungs have been operating relatively well and although she has had very sticky secretions she has been capable of coughing them up. “The best cough on the ward” as they say. Whitney is breathing on hi-flow oxygen, is on a myriad of medications and is slowly being weaned of her sedatives. This comes with withdrawal, which presents as her being irritated, unable to sleep, crying and a very sweaty little girl. Uff da; in writing this I realize I am feeling these things as well (but without the drugs)!

The less good news… Whitney has been having bleeding issues. First, her injection sites from her daily blood thinner medication started bleeding through multiple bandages. This was followed up by her both throwing up and passing blood in her stool. The team is working on figuring this out with new x rays, blood samples, different medication ‘cocktails’ etc., but we are not sure of the cause quite yet. She is also recovering from a staph infection and second UTI.

It does feel like our stay here is beginning to extend beyond a reasonable ‘I can see the light at the end of the tunnel’ – for me at least. Thankfully I have Ryan’s mom here. She is a wonder woman at comforting Whitney, getting groceries, doing the laundry, having a good attitude, organizing hodge podge charcuterie spreads out of thin air, etc. However, her assistance is quite marginal when asked for help with my crossword puzzles.

Back in Manitoba Ryan and the kids have been doused with a good portion of love in the form of meals, snacks, breakfast-y goods, and gift card drop-offs. This is SO appreciated. It impacts our family greatly. Ryan arrived back to Manitoba entirely spent, physically and emotionally, and we are so grateful that others recognized this and were willing to spend their time and resources on our family. We are also still incredibly thankful for the financial support we have received, fully acknowledging that without it we would not be able to care for Whitney so constantly. I know the impacts of my presence on her current and future wellbeing and feel extremely privileged to be able to stay by her side as I do. I have MANY thoughts on this matter; for another day.

Even though Whitney is bleeding from, like, six different parts of her body, has oxygen cannulas and feeding tubes shoved in her nose, has IV lines in her groin and is withdrawing from multiple drugs… she is still happy to be here! She is smiling quite a bit today and has also fallen in love with her hospital crib mobile. She stares at intently until we turn it on and then grins so huge that I suppose she thinks she willed it to move herself. Or maybe she views it as a companion returning her affection. Either way, the batteries on this one better hold out!

Until another day,
Sarah

This week did not go as planned. So far we have attempted two extubations, both failing. On Monday Whitney was extubated and I was able to hold her for a bit before she started to struggle and was emergency intubated within the hour. No problem, it took her three tries back in December. On Wednesday Whitney was extubated again after showing great progress on her respiratory settings and no blood coming out of her lungs for 24 hours. Again, I was able to hold her to try and calm her, but she started to struggle and was placed back on the bed. Her CO2 climbed to about 160 (whereas it should be 30-60s ish) and was the highest our doc had ever seen. This time the team wanted to give her a serious shot and so we prolonged reintubation as much as possible while they adjusted respiratory settings, administered different medications, fit her face mask differently, etc. This meant Ryan and I were tasked with holding Whitney’s hands and talking to her while she locked eyes with us and severely struggled to breathe for over an hour before they reintubated her again. The fear in her eyes was enough to torture our memories for the rest of the week… I need not go into more detail about this experience. Although, we will say, Whitney has a serious will to live.

After the second failed extubation the team ordered the full gambit of tests again… a new X ray, CT scan, bronchoscopy, urine/sputum culture sample, etc. were all done in one day and Whitney was pumped with sedatives to keep her still. It’s amazing how resilient little bodies are. The good, but frustrating news, was that all the tests came back looking normal. The bronchoscopy showed that she has thick secretions in her lungs, who knows really why, and so that’s the only hint we are going off of now. Every three hours for the last few days the respiratory therapist comes and does a ‘bag instill’ where they instill saline into her lungs, manually help her breathe with the bag and push a suctioning tube down to pull out thick secretions from her lungs. She hates it and her stork bite turns an angry red, but she is generally able to recover afterwards. At this point we will wait at least until Monday before they will try extubation again, and potentially longer if her lungs are still appearing quite wet. ‘Third time’s the charm’ everyone keeps saying. She also has an infection brewing, a narrow airway (likely due to the tube rubbing against her esophagus) and is showing signs of drug withdrawal after we turned her continuous sedative slightly down.

As this was supposed to be ‘just a little heart cath’ and we had originally planned for a 4-5 day stay – new plans had to be made. As such, this morning Ryan flew back home to Manitoba to be with the twins and his mom has come to support me here. The hope is that we can soon (relatively) follow back to MB, but, if this is prolonged much further, Ryan will pack up the twins and drive them back here. There is nothing admirable about a family divided or a father leaving his baby to be with his other kids, but we have to make these decisions and simply move forward.

Again, it’s difficult to know when we should start getting concerned or not. We are at the point where, after what was supposed to be a relatively small procedure, Whitney is declining and needing more and more medications and interventions. Sometimes a patient just gets zorped into the ‘being here makes you be here’ mode. For example, being intubated can cause inflammation and infection (pneumonia) or being sedated for too long can cause drug tolerance, etc. Other babies similar in age to Whitney receiving a heart cath (and/or Glenn surgery) have come and gone. It’s another reminder to us that Whitney’s condition has always been severe, and that each day should be counted as a blessing.

And yet, there is life here. Last night ‘Nan’ read Whitney a story and she awoke from her sedative-state to track the pages and listen along. Our nurse today smiled big when she saw me because she hasn’t been able to be on our room yet, and it seems like she’s wanted to. Ryan and I have visited families who have ‘graduated’ to other wards of the hospital and have seen lovely babies who are getting better. We have a place each morning to get B+ coffee and have treated ourselves to many a white-chocolate-raspberry scone. Friends continue to text and keep tabs on us, with encouraging words and stories of their own. Distant cousins continue to drop off home-cooked meals for us, and in doing so, have become less distant. The twins remain safe and cared for and will have memories of cousin-sleepovers that will last them a lifetime. Ryan and I continue to prove that our marriage is awesome as we work well and navigate this together, mostly graciously and sometimes with a little more sharpness (as necessary).

As for me… hmm. After our last failed extubation the doc graciously came by to check on me again. He asked “are you okay?” and I answered “yes.” And then he did that thing where someone squints their eyes and changes their tone of voice and says “you can be honest, you know.” To which I answered, without really thinking, “I think I’ve yet to find a time in my life when I’m not okay.” I’m not a robot; I certainly feel this weight and pain and have my own grief. But to be deeply okay, to have peace and to be able to let my heart rest in God’s hands, is truly a gift. An actual gift. I’m thankful I’m even able to accept it.

So, for now, we are half here and half in Manitoba… impatiently awaiting what’s to come next. Please keep praying for our little girl. We are pulling out all the stops for her next extubation (likely Monday) with new antibiotics, new steroids, different respiratory settings, medication to break down her mucus, a newly fitted facemask, etc. She’s going to get the full gambit and we will see if the third time is the charm, again.

Sarah

P.S. Ryan left this hospital not a moment too soon. A new garbage man pulled into our room today, who I, nor any of the other nurses, have suspiciously never seen before. He has the name of a mobster and after hearing his history (a previously trained fighter pilot from Columbia who was tortured, received government pension and now ‘works’ here as a custodian…) I believe he might be one. He ‘liked my sense of humour’ and before he left the room, looked at me and quietly mentioned that if my husband were to be causing me problems, he could… help me be rid of him.

P.S. #2 A new personality-analyis has arisen. The other day one of the cardiac intensivists made a point in mentioning to Ryan’s mom that Ryan is a “good man, here.” However, also the other day our Hutterite friend’s father mentioned to Ryan in the elevator that I am a “goooood woman.” I suppose we’re trying to determine what the higher compliment is; that of a highly trained cardiac intensivist or that of a senior, retired Hutterite minister.

On Friday Whitney had her heart catheterization procedure first thing in the morning. It went somewhat well. The actual procedure was successful in that they were able to stretch the shunt in her heart from a 2.7mm diameter to a 4.5mm diameter by installing a stent. They also used their cameras to look at her pulmonary arteries, which they confirmed are quite small. They had hoped the larger shunt would immediately help out her little arteries, but that was not the case.

Whitney was supposed to come back to the room without a breathing tube and ideally with better oxygen saturation; neither of these happened. At the end of her procedure they noted an unexplained pulmonary hemmorhage, which is just fancy terminology for bleeding in the lungs. So she came back up to the room with a breathing tube in and in an unstable state. Once again, Ryan and I were asked if we wanted to leave the room, which we politely declined. The doc let us stand at the end of the bed beside him while everyone shuffled around and eventually got her to a stable state.

For the last two days Whitney has been relatively stable, with many moments of declining sats and not much improvement toward being extubated. If you read along during our first trip here, this is a big hurdle for Whitney. Sometimes we wonder when we need to start being concerned or if we need to just maintain an unwavering push forward. I asked the docs tonight "do we need to be concerned?" They said no; although the air in the room feels otherwise. We often remind ourselves that her condition has always been severe, and that there are no guarantees. But for now, onward.

Whitney is quite a determined little lady, though. The nurses keep saying "well she just shouldn't be awake on this much sedation," but there she is, looking around for something to do. She is also a sneaky little lady. She very much dislikes having a breathing tube down her throat. Many a time when the nurse would turn her back Whitney would sneak a hand up to try yanking it out, only for the nurse to notice and Whitney to quickly stare off into the distance as if we all didn't just witness her do that.

Also, this week and we received a few beautiful gifts: a card from amother family on the ward, a small, vibrant quilt that a nurse made especially for Whitney, a delivery of specialty treats and soups from a fine bakery and a tray of home-cooked ribs. People are simply amazing.

For those who are praying, Ryan and I would certainly welcome prayers for wisdom. We need to make decisions about our twins, if/when Ryan should go home to MB, how to navigate our time here, when to speak up and of course, what the appropriate amount of humour is in this setting, etc.

Thanks all for listening and caring.

Sarah

We are still in Edmonton! We have had a wave of ups and downs this week. Ultimately, it was determined that Whitney had a UTI and she has been on antibiotics. She has been quite the cranky girl here at the hospital and has required a lot of love and care.

Her heart catheterization is scheduled for tomorrow morning (Friday) at 8am. The cath team has indicated that this will not be the most simple cath as the goal is to widen her central shunt with either balloons or potentially a stent. If all goes well we should see an increase in her oxygen numbers and could be home early next week.

We would appreciate prayer for the procedure tomorrow! As well as prayer for all the caregivers of our twins back in MB - Ryan's sister and her husband, my parents, his parents - who continue to sacrifice their time and space to support us.

Other notes:

- I did jog to Safeway to get my chicken pot pie and it was perfection as always.

- We got a home-cooked meal from extended family out here and it made me realize I'm not that good of a chef.

- We really miss the twins. It's simple to say, hard to live out. Sometimes I just stare out the window and try not to throw up.

- I got some nurses (and myself) in hot water for arguing too much about the best bakeries in the area during rounds (we were told to get back on track). Breadland for life.

- Thankful for those who have continued to support us financially. The generosity is astounding and humbling.

Sarah

By now, we’ve learned that heading into a hospital stay with any sort of expectations is a recipe for frustration. But as usual, the knowing and the experiencing are two very different things.

On Thursday evening we were getting the final pieces in place for Whitney’s procedure, which was scheduled for 7am on Friday. The days prior were particularly challenging for all of us, but especially for Whitney.

We flew to Edmonton on Wednesday morning and got situated here at the hospital just after noon. After getting Whitney all set up and hooked up we started doing all of her tests. The tests, which included a couple blood tests, echocardiogram, an ECG, ultrasound and an Xray (in a contraption that looked slightly like a medieval torture device) lasted about 4hrs and took quite the toll on Whitney.

It’s hard as a father to sit by while your child is screaming and in pain/discomfort while being unable to do anything about it. I personally find it especially hard that I have nowhere to channel the rage and aggression that builds up inside. The reality in this situation is that nobody is doing anything wrong. We’re here because Whitney needs the care that this hospital can provide and these tests are an essential part of that process. But holding your child’s hand as they scream for hours eats away at you the same as if someone was intentionally harming her.

In the back of our minds we anticipated this would be a short trip and we could handle a couple hard days to do this and head back home. So when we got the news from our catheterization specialist (Dr Slim) that her blood tests showed elevated CRP levels (inflammatory marker) and a high white blood cell count - we knew our plans would quickly change.

It’s essential for this procedure that Whitney isn’t sick at all, as the work they’re doing in her heart can turn south if the body is already fighting an infection. As such, her procedure has been delayed until next week.

In the meantime we are making the most of our situation. We sweet-talked our cardiologist into letting us get a day pass, and sweet-talked our nurses into letting us take hospital equipment off-property so we could stroller over to our favourite bakery, Breadland. We also have more mental capacity than our last time here and we roam the halls on our ward a little more freely. We’ve made friends and have encouraged new parents who are looking for others to relate to. Sarah found her favourite doctor from our last trip and they hugged and started talking shop about mental health support systems in the hospital. Parents in the family lounge have accepted prayer and others have asked us to visit their rooms to see their children. It’s a difficult and beautiful thing to be both struggling and helping others struggle less, simultaneously.

The medical team knows we are comfortable with our care of Whitney, and if all is well tomorrow they will discharge us to the hotel with Whitney until her heart cath mid next week. A shout-out to family of family of family here in Edmonton who are helping us procure a playpen, stroller, etc so we can safely bring Whitney over to the hotel with us safely.

So if all goes well tomorrow, we have big plans! Mainly Sarah wants to go to Safeway to get her favourite chicken pot pie. That’s about it, really.

Thanks for following along and keeping us on your hearts and in your prayers.

Talk soon,

Ryan + Sarah

Lots has gone down in the last two months.

We arrived home from the NICU in February and spent the next month or so figuring out what it really means to bring home medically challenged baby that requires medication and oxygen support, alongside caring for the twins and finding space for them. We have received continual support from friends/church, constant support from family and unexpected support from neighbours, neighbours of neighbours, and friends of friends. There's a lot to unpack from the last two months and we have attempted to write blog updates many times - but the mental/physical fatigue has often got the better of us. We somewhat resorted to just 'checking out' for a while in order to figure things out.

At home, Whitney has been doing well. It took a while for her to adjust, to get out of survival mode, to learn to trust us... relax... smile. But it happened. And she has grown and gotten a tiny bit chubby and even a few days ago hit a toy above her head (a big step for her!). So when our cardiology team called us to say we needed to go back to Edmonton for an unexpected procedure, we were a little taken aback.

Based on Whitney's recent scans, her pulmonary arteries are too small. There is an opportunity now for them to grow larger, but it requires increased blood flow. As such, she will undergo a heart catheterization this Friday that will stretch her shunt a little wider and allow for increased blood flow. This should help her oxygen saturation improve, and ideally put her in a better position for her next open heart surgery in May/June. The heart cath is not as invasive as a surgery, but still comes with risks. In this case, they are necessary.

So yesterday morning Ryan and Whitney and I made the trek on the jet back to Edmonton and left the twins in the loving care of their Aunt and Uncle. We should be back early next week and have been telling ourselves "it's just a little heart cath." But in reality, we are finding it difficult to be back here and thrust back into the hospital life that doesn't lend itself well to the gentle care we've been providing for Whitney at home.

There aren’t enough words to convey our gratitude for the support we’ve received so far. But here we are again, asking for continued prayer for our family. Pray that we will have the strength to endure this and that Whitney will adjust and handle the procedure well and for the twins while they are back home.

Sarah and I tag-teamed this post, but I’m wrapping it up and wanted to add a note about her wild confidence when addressing nurses we’ve met before by name. As of writing this, she’s 1 for 4… you should see their faces when she confidently gets it wrong.

More to come,

Ryan & Sarah

We were officially discharged from the NICU yesterday evening and our family is all together at home for the first time. Things are far from simple; Whitney requires 24/7 oxygen as well as a few timed medications and tests each day - but those things are manageable as they mean we can all be together.

We know that being home together as a family of five has been far from a guarantee and we are cherishing every moment. Whitney has a long road to travel with another heart surgery likely in summer; I’ll update this blog as we navigate that.

We are so thankful for each of you who followed, kept us in constant prayer and supported us in many ways - we would not have made it here without you all.

Praise God.

Ida just came back from Whitney’s room whispering “this is wonderful.”

Much love,

Ryan, Sarah, Brooks, Ida & Whitney

I brought the twins home for a couple days last week. Sarah had my mom supporting her in WPG so I wasn’t leaving her without help and the twins needed a chance to see their cousins, pop in to preschool and have a chance to feel normal for a bit. I stopped at Whitecap on one of the mornings as I’d run out of coffee, and to be honest I was a little bit of afraid of running into people. That feels as bad to write as it did to have the thought in the first place.

I love people, and miss dearly the ones that have been a big part of my life. I want to run into people who have been praying for us and supporting us. I can’t wait to meet someone who followed our journey that I didn’t know, to tell them stories of how good God is and the ways I met with Him through this. It’s just that I don’t feel I’m quite “here” yet.

I did run into a few people at Whitecap that morning and in an attempt to let them know we were just here for the day and actually still living the almost unbearable NICU life in Winnipeg, I found myself saying “I’m not here.” I was surprised by my ability to so succinctly communicate what I’m feeling and where I’m actually at in the moment. It was as if the act of saying something out loud to someone else helped me understand something I had been grasping at. That is what I’m hoping for as I write this blog. To kickstart my brain’s ability to process things, while giving each of you who’ve supported us a chance to get a glimpse into how things are going.

I’m writing this while sitting beside Whitney as she sleeps, doing my best to ignore the monitors and numbers and alarms that are ever present in this environment. Sarah updated in the last post about the feeding progress Whitney had been making. She was getting 25ml by bottle and the rest into her NG (tube that goes to her stomach) and each day we increased the bottled amount slightly. The occupational therapist continued to encourage us not to push her as the simple act of drinking her bottle right now is like running a marathon for her reconstructed heart.

We had made it to 50/62ml by bottle and Sarah got up during her night shift a couple days ago to see Whitney glaring at her while holding the NG tube she had just pulled completely out… This is no short tube, it went all the way down to her stomach and was taped to her face and through her nose. Needless to say, she was ready to jump to full bottle feeds and since then she’s taken each bottle fully and is handling it very well. Apparently we’ve got a little girl here who has a fairly clear idea of what she wants, and when her parents aren’t quite on the same page, is very willing to (quite literally) take matters into her own hands.

A thought that has crossed my mind lately has been comparing this chunk of time in the WPG NICU against the similar circumstance in Edmonton. We started in the Edmonton NICU, then the PCICU then back to the NICU and now in the Winnipeg NICU at the Women’s hospital in the HSC. Each time you move into a new ward it feels like you’re starting over. New rules, new nurses, different room arrangements, hearing the things about a previous ward that the current nurses think are silly and on and on. It always takes a good 3-4 days before you start to get into a routine and start to feel comfortable in the new space. Comfortable is probably a bad word to use and comparing the two phases probably isn’t fair either.

The reality is we’re more exhausted now then we’ve ever been. The Edmonton phase was marked by big moments, huge stress and seemingly unclimbable mountains in our way each day. Whereas these past few weeks in Winnipeg have found us parenting an older, much more alert baby and trying to build routines and care for her in an environment not suited for such. We’ve spent the past week and weekend all here as family, splitting the night in half so we can each get at least 4hrs of sleep and then trading off time between Whitney and the twins. I will never be able to describe how hard these past months have been and continue to be, though I do find myself wishing I could. It’s meant that when talk of “discharge” surfaced near the end of last week, it felt like the first warm spring day after a long cold winter.

Now that Whitney is tolerating her full feeds and gaining weight each day, we are left to just sort out her oxygen requirements prior to heading home. We had a feeling she would require oxygen as her heart can’t quite get enough oxygenated blood to her body. We anticipate needing her to stay on oxygen until her next surgery, sometime in the next 6 months, which will give us a better idea of future outlook. I can’t begin to describe how wonderful it feels to think about coming home. The thought of us all just being together as a family under one roof, allowed to build routines and sleep in our own bed.. it’s almost overwhelming. Whitney is currently doing a 24 hr oximetry test which is a slightly more accurate way of checking her Sp02 (blood oxygen saturation) levels and will inform the respirology team what to send us home with. Once we have this portion sorted out, we can make a plan to head home.

What then of the future! As someone who’s tended to live my life not fully in the moment I’m in, but rather almost completely in the future I could imagine - you would think I’d have a clear answer for that. But things are different now. Whitney has changed me in so many ways and I’ve slowwwly been learning how live the life I’m in, rather than the one I’m building in my mind. Sarah’s parents stopped in this weekend to help with the twins and visit Whitney. Sarah’s dad looked down at her while he was holding her and just said “catalyst.” Immediately I felt in my soul that that was the perfect word to describe her.

As Sarah and I spoke in church before heading out to Edmonton, I talked of my confidence that Whitney would change lives whether she walked on this earth or not. I knew before any of this began that this little girl would change me, change our family and deeply impact many that we interacted with or those who came in contact with her story. God has met me as I walk back into the stress, exhaustion and pain of this entire journey. He has carried me when I was unable to walk, held me when I watched my daughter fight for her life and met with me when I was so angry and too worn to continue forward.

Whitney, you are a catalyst, and your existence on this earth is such a testament to our amazing God. We don’t have guarantees about your future, or anyone else’s for that matter; but the same thought that comforted me while watching Dr’s scramble to save your life is as true today as it was then: whether you are here with us or whether your life is shorter than we would hope for - you will be well, you will be cared for and you will change lives.

If you’d like to chat more about our story, hear more about how good God is and how he continues to change my life, please reach out, I would love to connect. Just give us some grace as we wrap up our time out here and settle into life in Winkler. So many of you have walked this walk with us, and it isn’t over, but we made it through chapter 1. Thank you for your prayers, messages of support, financial gifts and so much more.

Here’s to the life we’re in, and to chapter 2.

Ryan

Side note, a Dr came in last week and told me “everything happens for a reason.” I’ve always felt uncertain about that statement but now feel quite confident that I disagree completely. That is a conversation for another day, ask me the next time you see me and we can have a healthy disagreement.