The History. Part II

When we arrived in Edmonton, we met with dozens of doctors, surgeons and social workers; it was all a blur. Drew’s dad drove up with us and after we tucked her in, he watched over Kate so we would be able to go straight to the hospital. We were greeted by the Neonatologists, the Transplant specialists, the surgeons and the social workers. This type of thing doesn’t happen typically so everyone was in a degree of disbelief.

Although I had experience in the NICU, we had briefly reviewed fetal circulation and congenital heart defects. But our scope at the Peter Lougheed Centre wasn’t surgical, it was delivery and support. I had worked casually at the Children’s when I first graduated so it wasn’t fresh in my memory.

My husband did well in his crash course in Cardiology but looked to me for guidance about what was happening to our baby. What could I tell him? That everything I saw was awful? That when I saw the doctors and nurses faces, I could see the worry in their eyes? I could easily interpret what they were saying and knew it wasn’t good.

We were able to get into the Ronald McDonald House Northern Alberta after a few days of hotel life and that became the safe haven for our family. Kate had all she could ever need and we had a place for us to be a family. Meals, play spaces, quiet rooms, kindred spirits. No one expected you to be super friendly or make small talk if you didn’t want to. We were all tired and worn for the same reasons, our sick kids.

And then it was time. Sam was 13 days old and finally stable enough for his first open heart surgery. Kate came and kissed her brother that morning. This was her first time seeing him since he was at home with us. As much as I worried for Sam, I also worried for Kate. None of this was normal, none of this was okay and none of this was her fault but she would bear as much of the burden as we would as Sam’s parents. Kate, at times, could be a challenging little person before Sam was born and I worried about how she would cope. How we all would cope.

We were told to wait by the giant fish tank which is between the OR and the ICU. I grew to hate staring at those fish. So I learned to cope by spending hours researching everything I could about HLHS and congenital heart disease. I learned about the mortality rates, the risk of complications, the outcomes. I learned HLHS babies born before 1980 were typically offered compassionate care as there weren’t any viable options for them. I learned that there was still so much unknown about HLHS hearts and how to help these kids. I silently prayed that the surgeon would be able to save Sam in some way.

He came out of the surgery 6 hours later and was stable.
This was when we discovered just how tenuous Sam’s condition was.

They needed to leave his chest open for the first few days post op to ease the pressures from swelling in his chest and in case they needed to go back in quickly. Cardiac arrest was common after such an extensive surgery. There were coolers at the end of the bed with bags of platelets and other blood products in case he hemorrhaged or need an ECMO setup. He still had wires connected from his heart to a grey box on his bed in case his heart went into an arrhythmia and needed pacing.

Babies with Sam’s condition were most vulnerable during this Interstage period. They needed constant monitoring at all times a large majority, anywhere from 45-75% die from complications. So we were educated in doing daily weights, NG feeds, frequent oxygen saturation checks. Because if things went wrong, and they often did, it would be quick.

Sam had multiple complications; a chylothorax, a clot in his internal jugular, a wound infection and terrible withdrawal from all the opioids and narcotics he was on. It was weeks before he was extubated and able to cry out loud again. I stayed for rounds every day, made my notes in my own chart as I knew that I wasn’t processing any of this and would never remember the details that would become so important to know.

Drew and Kate headed back home to Airdrie as Drew needed to go back to work and Kate was starting preschool. I drove home each Tuesday and Thursday to take her to preschool and then would drive back so I would in time for rounds. It was overwhelming for me but so important for both of my kids, I needed to be there for both of them.

Sam finally transferred back to Calgary and I could now spend nights sharing my time between my whole family. I could see Drew when he came to meetings there; I could drive home to see Katie while Sam slept. The hours spent driving across Alberta had to replace all the sleep I was losing.

We spent months afterwards in hospital. Sam had even more complications and because Airdrie was far and without any adequate pediatric healthcare or support, it became the safest place for him.
So ACH became our home in more ways than one. I remember walking downstairs a few mornings in my pyjamas to get coffee and breakfast and thinking, “Nope, you don’t get to judge me, my sweats or my messy hair. I live here, I sleep on those crappy beds, I only eat cruddy cafeteria food so I am more than entitled to walk these hallways in my slippers.”

Kate would come and spend days here with Sam and I while Drew worked.
She learned to know that the people in the red vests were safe and would take her to play all over the hospital.
She learned that she could make wonderful crafts out of the medical supplies in our room. She learned that if she was quiet and behaved during rounds, she could choose a treat from the box of goodies I kept in the drawer.
She learned that there was a clown named Sparkle who came to visit and would make her feel like the most important person in the room.
She also learned to put on her headphones when lab came around so she wouldn’t have to hear Sam scream.
She learned never to touch any of the tubes or lines that were attached to Sam.
She learned how important it was to make sure her hands were clean at all times.
This is when I saw how much this way of life would affect our simplest interactions. There would no longer be any “normal” elements to our lives. We would all be affected/afflicted in some way.

I realized that both kids needed to learn how to cope with what would be our day to day lives. Sam would most likely grow up within these halls and that meant so would Kate. I had already seen behavioural changes in her and was afraid it couldn’t be helped or avoided. But I could support her, listen to her and try and normalize it all with her.

So I became a big advocate for early intervention for their mental health. I had read so many articles and studies on how adverse childhood experiences can affect these kids. Medical trauma was not a much-studied subject, especially in children.

Before Sam came home, I remember crying to our team of doctors after a two day pass that it was like taking home a brand new baby and having nothing ready. It wasn’t the crib or diapers; it was the medical supplies, the monitors, the meds. It takes some mental preparation to bring home a little person for the first time. You slowly get to know each other and finally discover that you are capable of doing this parenting thing. But we couldn’t. It wasn’t easy in any way, shape or form.

But I didn’t even have time to figure out his home medication and feeding schedule.Sam was first discharged in November but caught a cold and we returned to ACH in two days. At that time, he needed 24 hour oxygen and we found out he needed the next operation sooner than later.

So we packed up for Edmonton, this time knowing a bit more of what lay in store. We made arrangements for the RMHNA, for Drew’s mom to take care of Katie while we were there.

It was terrifying to go back to the place where so much had happened. We all were suffering from PTSD and we were constantly being re-traumatized. There was no end in sight, no definitive future and so there wasn’t much help to be given.

But we made do with what we had. We got Katie excited about staying at RMHNA again, talking about the Magic Room and all the fun people there. We let her pack her bag. It was stuffed full with toys, bursting at the seams. I still laugh when I think of it.

Despite her having to celebrate her 4th birthday away from all our family and friends, we would have a huge party with the people at the house and have everyone send her Happy Birthday videos. I still have all the videos tucked away. The best one was the staff on my old unit, singing for her amongst all the babies.

We made sure Katie could be a part of Sam’s experience because I knew the relationship between the two of them could help carry them through all the adversity they would face. We told her that no matter where we were, even if we couldn’t see each other, we would always be a family. And that has stayed our adage throughout our journey.

Sam went for the second stage surgery, the Glenn, when he as 3.5 months old. He was just developing the most wonderful personality, laughing and grinning. This time it was so much more difficult, as this time, I loved him truly. I barely knew him before and this time, I wasn’t just handing my newborn off to have open heart surgery, I was sending off my son.

The surgery was more complicated. He did well initially with the prep for his surgery taking longer than it did to get all his lines in. Then within 24 hours, he developed a serious clot and they needed to go back in to remove it. He had recovered quickly and this time we actually made it out of ICU and up to the unit. But once we thought we were in the clear, a diagnostic test called a heart catheterization showed his Aorta had almost fully occluded, and he needed another emergency surgery. This recovery took a lot longer than before as there had been so much damage from all the quick re-entries.

But eventually, we were stable enough to be sent home. We were elated but the only problem was, the wanted us to transfer home on Christmas Eve. My biggest worry? How to tell Katie that Santa would find her no matter where she was. But with only a few hours notice, Sam was flown, we packed up the room and drove home in a snowstorm.
That night, while Katie was finally sleeping and I was at the hospital with Sam, Drew put up our Christmas tree and decorated the house. It still took weeks for us to be discharged but we finally got there.

Jan 18 2014, we arrived home for good. Well, sort of.

Ever since that initial discharge, Sam has been admitted at least once a month for the past 3 years, not to mention at least 15-20 appointments per month. We’ve had to take too many ambulance rides into Calgary to count. We’ve discovered how much we depend on the kindness of our neighbours and strangers. We’ve come to realize that the state of health care, both physical and mental health, in our small town is under great duress and needs drastic changes.

We acknowledge that our children have suffered a massive amount of trauma; physical, psychological, emotional, and we are very limited in the resources we can access to help them cope.

The thing is, we are getting so good at saving lives, the technology is unbelievable and is still advancing. But as a health system, we have not caught up with providing the emotional and psychological treatment necessary to cope with these extraordinary lives.

Our daughter was diagnosed with depression, anxiety, and PTSD at the age of 5. Sam had shown multiple fears and aversions related to anything medical or hospital. But we have worked hard on addressing the problems and helping him see beyond the pain and discomfort. He now loves going to the “hosable” to see his people because we use the tools given us by the mental health professionals we’ve worked with. He even asks for a sleepover every once in a while. I reply with an adamant “NO!”

Child Life and the support staff at ACH are truly amazing when it comes to helping the patients and families deal with this life. They provide lots of distraction and fun but there is a significant gap between what is needed for these families and what we have resources for.

I am a resourceful mom; I know that somewhere, someone must have had this problem before and has found a resolution, good or bad. But there are a lot of families out there that don’t know to ask the questions, to ask for help, or how to begin. And once you are in the community, it’s even more difficult.

Mental health resonates with every one of us. But there is a significant population of people who have been overlooked because we assume they have the help already. They don’t. I hope with the heightened awareness of Patient and Family Centred care that helping the whole family deal with not just the physical outcomes but the emotional and mental outcomes can be a focus of professionals.

I will never return to nursing. Some people have said that because of my experience, I would make an even better nurse now, more compassionate. But I can’t.

But I can’t. I suffer from a form of PSTD that is continually renewed and reinjured on a regular basis.

I’ll never be able to hold a stethoscope to another heart again without hearing my son’s incredible heart murmur. Measuring pain and suffering takes on a whole new dimension when it’s compared to that of a tiny, wordless infant. My frame of reference about what is truly important in life will forever be guided by what my family lived on for months, which was horrible cafeteria food and the support and love of one another.

But I can use our story to help others. To encourage parents who are at the start of in their journey, to guide those that are frustrated by the systems in place to help us, to enlighten those who are unaware of the complexities of this medical lifestyle and hopefully, to help incite change in where status quo is no longer enough.

We are lucky. Every extra day with Sam seems as if it has been stolen back.It’s been borrowed time from the minute we first brought him through the doors at ACH. We are constantly amazed by what our little people can accomplish, what they endure and how they still embrace every bit of this crazy life. We can get so busy with therapies and appointments but when I see how far we’ve all come, I am in awe by how resilient these little people are. I only hope we can do right by them. They deserve all the love and resect that we can give them.

The History. Part I

So I used to be a nurse. I come from a family of nurses, Mom, Dad, Sister. So inevitably, I became one too. It was in my blood, my dad likes to say, but I loved every minute of it. Truly.

My husband Drew, and I married in 2005 and supported each other through school,

I started with my nursing at Bow Valley College and continued my studies for my degree at Athabasca. Drew took Electrical Studies at SAIT and is now a Project Manager/Estimator at one of the companies that work primarily within Calgary’s hospitals.

I used to work at the Peter Lougheed Centre first in Vascular Surgery, where I loved my job with all the acuity and intensity. Then afterwards, when Drew and I wanted to spend more time focusing on our little family, I took a job at the NICU there, where we took care of the “feeders and growers.”

We had our daughter Kate in 2009, and she was a joy.
We were a fun little family.
Things were good.
Happiness came easily to us for the most part.

Then we decided to shake it up a bit. We got pregnant with another baby in 2013, decided we needed a new place to house our expanding family, so we bought our dream home in Airdrie, where we figured it would be a nice small community to raise our children.

Kate would start preschool in September, and I would be studying more to finish my degree. It seemed like a great plan.

It did get a little hectic, so we even decided to slow down and take a last minute vacation to Victoria where Drew’s mom lived. 8 months pregnant and hoping not to deliver in BC.

But all went well, we arrived home safely, and Sam was born on August 23, 2013.
It was a traumatic birth for both of us. My water broke at home, and I didn’t progress as fast as I should have, so we used meds to help us along.

He struggled, and when he arrived, he was flat.
His APGARS were 1, 5, and 8 after vigorous suctioning, CPAP and bagging. They worked so hard on him that he had quite a bit of bruising around his mouth for days afterwards. That bruising hid the blueish lips that I would come to know so well.

While cuddling with him, I automatically assessed him. You can’t really turn that nursing instinct off. I saw he was grunting with his effort to breathe. His oxygen sats were still low, so the team, who I knew well, brought him to my NICU for some oxygen and feeds.
By midnight that night, we were reunited and were sent home the next day. I was pretty sure I was capable of handling anything this kiddo could throw at me. Besides, I had a house to finish packing. We were moving in 6 days.

He was a feisty baby at home, loud,  irritable and always starving, it seemed. But oh so adorable.

On that day, Drew was working half days so he could come home and help me with Sam and finish packing up. Kate had gone on a date with her Grandfather to see a movie that afternoon and wouldn’t be home for a few hours. I put Sam to sleep in his bassinette beside me and got to work.
I remember looking at the clock and thinking that it had been a while since he fed last. He was cluster feeding at the time, every 2 hours and it had been about 3.5 since the last feed. I went upstairs to rouse him.

At first, I noticed how clammy he was. It was a warm August afternoon but not anything that should make a baby sweat. He wasn’t bundled at all, and despite being soaked with sweat, he skin was cool. Then I noticed his breathing. I counted his respiration rate and had to do it twice because I thought I must have made a mistake. It was 144.

I remember calling Healthlink, and they said we needed to go to the Children’s. Drew was on his way home and we decided to drive to ACH. I sat in the back with Sam and Drew drove. Sam was inconsolable, wailing, It only took maybe 15 minutes to get there, but it was almost too late. Sam’s eyes started to roll, and he stopped crying. When we were driving beside Market Mall, I ripped open the car seat belt and gave my 5 day old son a sternal rub to keep him alert. I remember telling Drew to run the red light.

We left the car with doors wide open right in front of the ER doors. I passed Sam to Drew as I was stuck between car seats and he ran inside with him.
By the time I got inside, he was already in the trauma bay. There was no delay, and he was instantly surrounded by the staff. I remember standing there, motionless with tears streaming down my face feeling like it was a movie. They intubated him immediately and tried to get IV access, but since he was so shut down, they rehydrated the tiny stump of an umbilical cord and got a line through that. It was about an hour before he moved to ICU and we were sat down in a small room where we met our cardiologist for the first time.

I loved her immediately. She was as shocked as we were. She started to draw pictures.  She asked us about prenatal care and if we had ultrasounds. I told her we had several, even 3D imaging twice because Sam wasn’t cooperative showing us his face.

Then she drew Sam’s heart and it was drastically different.
Sam’s diagnosis was Hypoplastic Left Heart Syndrome.

The left side of his heart had not fully formed in utero. He had an atrial septal defect, a minuscule left ventricle, his mitral valve was narrowed, and he had a coarctation of his Aorta. The right side of his heart was trying to provide his entire body with adequate circulation, and when the ductus started to close, he had gone into heart failure and then cardiogenic shock.

She told us that Sam would need multiple open heart surgeries and multiple cardiac interventions and despite that, his heart would never be fixed. Palliative, not corrective surgery was our only option. And they would all have to happen before his 5th birthday.
As she was telling us all this information and trying to explain what our future with Sam would look like, these multiple surgeries, constant medications, the probability of a heart transplant, we saw a transport incubator roll by. Sam could not be treated here in Calgary, he was headed to Edmonton immediately for life-saving surgery, and he was leaving now.
Drew and I kissed our newborn baby, watched him loaded into an ambulance, taken to the airport and be Med-evac’ed to the Stollery.
The cardiology clinic nurse brought us gift cards for gas, groceries and a list of places to stay in Edmonton. We went home, called our family, packed bags for ourselves, our 3 year old daughter and our baby. We never returned to that house. While we were gone, our family and friends packed it up and moved it all to the new place in Airdrie.
My father in law drove up with us to take care of Katie while we were with Sam. We were in a daze and couldn’t believe any of this was real. It had been a matter of hours and our whole world, our future had changed drastically.

Part II to follow.

Avoidance at it’s finest!

I have been online for about 4 hours now, and I can’t even begin to tell you how ridiculously my time has been wasted.

They say the internet is a rabbit hole; you never really know where you’ll end up. It’s almost like those old Family Circle comics (yes, I am that old) where the little boy is given a task, and he ends up running all over the house, getting caught up in random things.

That’s me and my anxious brain. I have the forethought of a hamster most days. But I wasn’t always like this. (Well, not this bad, I should say.)

Tonight, I had great intentions. I started with my email, which then led to EventBrite to see a workshop I was interested in attending. From there, I looked up the artist on her Twitter page, and then Pinterest to see her work. Few minutes there, scrolly scroll. Like that, Pin this and then…

NO! Bad Kristina! Back to your email!

Then I get back on track for a bit. Reply to a few emails. Hit “unsubscribe” to the cluttered inbox junk I am drowning in. I Google a few things that have been on my never ending list of “Things I Need to Research” and off we go on another dotted line adventure!

And that’s when I have a night to myself. It’s a whole other gong show when you throw in the unpredictable demands of a medically complex three-year-old and a seven-year-old with ADHD worse than her mothers.

It seems so futile. I know it’s painful to watch (Drew likes to tell me all the time.) But can you imagine how infuriating it is when it’s your own damned behavior?!

But here’s my thoughts on this erratic way of living.

For months on end, our little family lived on the premise that our world as we knew it could be destroyed. There was no stability, no permanence. We could depend on nothing, except for constant change. Every time Sam would make some gains, he would acquire some other complication that needed more meds, more care, more time in hospital.

We stopped making plans; we stopped planning for discharge. I learned never to make promises to Katie as I couldn’t bear breaking her heart. Urgent appointments would pop up all over the calendar in a matter of minutes. Trips to the doctor sometimes ended in a request for bloodwork or other testing. A one-hour appointment could turn into 5 hours lost in the clinics and hallways of ACH. Or more often, we were admitted.

I hate being unprepared and it seems as if that is all I can depend on with our current situation.

So how do I head back into the world of organization and scheduling? The only schedules I follow rigidly are medications and school. I am proud of myself if I can walk back into the house after dropping Kate off and not feel as though it was ransacked while I was away.

Other than what needs to happen, like meals or meds, it’s a free for all. And that is indescribably taxing. On most nights, I wish we all had g-tubes because I usually forget meals too.

Thank God for Drew. For 95% of the time, he is the patient one who deals with all our nonsense and still makes it look easy. The other 5%, well, let’s just say he still gets things done, but maybe not with the sunshiniest attitude.

So now it’s 3 am. The sleep deprivation probably isn’t helping either.

But look! I accomplished something tonight that needed doing. Yay me!

 

 

 

We got an AED for Christmas.

We got an AED for Christmas.
The week after we were discharged, I knew Sam was not his typical self, even post-illness.
He just wasn’t recovering in his usual fashion. In fact, he looked worse, and I couldn’t help but question whether or not we should have stayed in the hospital.

I remember thinking I had made a mistake after Red Team had rounded that morning. They were asking me if I wanted to go home; if I was comfortable taking him home. Of course I wanted to go home! We had spent almost 2 months in the hospital. We had to celebrate my birthday and Katie’s birthday on Unit 2. I wanted to be home for Christmas at the very least.
But it was greedy of me; greedy for my family to spend any time together. I missed being “the Four Family”, as Katie likes to calls us.

After a difficult conversation with our Cardiologist, where she essentially told me that Drew and I should make sure we had our CPR up to date, I realized that I was unprepared. Since his birth, I hate being unprepared. Although, nothing prepares you for the moments where you literally have to keep your child from dying.

I have done that more times than I care to remember.
I have called 9-1-1 more times than I ever thought I would.
(Remember when you were a kid, and you thought about really having an emergency and needing to call them? Yeah, well.. not as cool as you’d think).

Another hospital Mom, who is one of my closest and dearest friends, loaned me her hospital grade vital signs monitor, a 400L oxygen cylinder with a concentrator that delivered up to 15L/min, a tabletop pulse oximetry unit, and an automated external defibrillator.

I went home that day feeling nothing. Not dread, not hopelessness, not even preparedness despite all the equipment. PTSD. Shock. All those self-defense mechanisms I have in place that allow me to function on a daily basis.

But I tucked it all away (although not too far away), and I tried to have a proper Christmas.
I knew from my previous conversation that we would be on our way to Edmonton in the next few months. Maybe weeks. Part of me prayed that we wouldn’t go up for until the New Year, but I also felt terrible for putting our family’s “normalcy” before Sam’s heart.

We ended up being admitted again over New Year’s Eve. He ended up with influenza and wasn’t safe to be at home. We pushed for home oxygen at the time and were able to secure it only hours before discharge.

Since then, it’s been touch and go. Sam has been struggling daily with the smallest of activities, with eating, with sleep.

 

Heart failure is hideous looking, even more so on a child.
I said to our nurse, “He never looked like a heart kid before. Now, it’s obvious.”

We went for our echo yesterday. They looked at his function to see if it had declined.
They had a therfew plans of attack, depending on the degree of failure.

Plan A: Medical Management 

 
We can be admitted and play with some of the medications that he’s currently on, ensuring the maximum doses and combinations are being met. But this means exposing him to all the nastiness that floats around the hospital and that could put us in a worse position.

Plan B:
Milrinone is a powerful inotropic drug.
1) It increases the power of a heart’s contraction, and 2) reduces the pressure in the body, so the heart doesn’t have to work as hard.
It can only be given intravenously, so a more permanent line to deliver the medication (like a PICC – Peripherally Inserted Central Catheter) is needed. This plan also includes an admission to the ICU. Milrinone needs to be administered carefully and titrated slowly. It can cause arrhythmias and all sorts of other scary things.

Plan C: VAD

This plan is an extension of Plan B but with the addition of a mechanical assist device. A VAD (Ventricular Assist Device) does the work of the heart by taking over pumping the blood in the body. It can be used as a “bridge therapy” to assist the heart until a donor heart becomes available or a “destination therapy” for long term use if transplantation isn’t an option.
This plan will warrant another open heart surgery in Edmonton and an extended stay there while waiting out a rejection period and so on.

So that’s it.
There are the reasons we have been quiet and out of touch.
We have been carrying this for a few weeks now, but it’s becoming more and more real by the day.

Keeping track

  
In the spirit of CHD awareness month, I decided to gets Sam’s Beads of Courage in order. Each bead represents something. Maybe a day in hospital, a needle, an IV, an ambulance ride, an X-ray, a test, a clinic visit, an infection, a new medication, a special milestone, a discharge. 

In the beginning, we started with Treasure Beads from our time in Edmonton. I can’t remember exactly what each represents. There’s a few airplanes in there, some lions, lots of hearts. I remember standing in front of the cabinet with Drew and looking at all the beads and saying, “He’s had that, a few of those. Definitely one of those.” Not really processing what they stood for, just being so nonchalant about grabbing each one for his new string. 
When we returned to Calgary, the staff with Child Life really took the time to explain the program and how it was important for all of us to take time and honour each bit of our journey. I know I skipped a lot just because I had lost count of it all. But now we are very particular about our beads. One day, he can look back and see just how far he’s come, how brave he was then as a baby and how strong he is now. 

Kate has a string also. Some for being a heart kiddo herself and some for being the brave sibling of a sick kid.  
I can recognize some of the beads and what they mean now. 

The giant blue triangle for all the blood work. 

The pirate for his ptosis (droopy eyelid)

The clear glass fish for his sedated MRI. 

The Angry Bird for all the days he was on TPN and went without eating. 

The angel for his first love & little friend who passed away. 

The busy little bee for when he learned to scoot. 

The snail for when he took forever to recover from anesthesia. 

The pumpkin and the wreath for Halloween and Christmas in hospital. 

Our beads aren’t even close to being finished. We still have 6 months to catch up on. So I keep track of each one now to honour the fight. 

For him and her, for us. And for all the kids with mended or broken hearts because it’s their spirits that are made of something unbreakable.

Zzzzz… Maybe later. When they’re 30.

I stay up late as often as I can. It’s ridiculous. For a mother of two who can’t get through one night without someone waking up at godawful hour, I should really be relishing ALL THE SLEEP. But I’m not. Part of it is just general insomnia. Not the horrible kind where you lie in bed watching the clock; that’s just piteous. I’m sorry for those who suffer that dreadful fate. No, for me, it’s the kind where you’re just not ready to head to bed until you’re pass out exhausted. And that usually comes sometime during the day when both kids are super-duper energetic and straight up crazy. 

I want to sleep. I truly do. I loved sleep so much. I used to tell my husband that waking me from a nap was like kicking a priest in a church; it’s pure sacrilege.  I know there are people out there so exhausted that they can’t see straight. They are a danger to themselves and others. In fact, I was one of those people for a long time. 

When Sam first came home, he was miserable. He was fighting horrible pain and PTSD and medication withdrawals. Then on top of that, teething. What 4month old gets morphine for teething? (It wasn’t actually for the teething. It was part of his weaning off the narcotics he had post-operatively.)
But it still had little effect. I used to have to rock him, almost violently, and pat his little wee bum in order to soothe him to sleep. It was hours of this; standing, rocking, patting, singing and crying. Both of us. I used to ask myself, “Is this what heart babies are like? Will it always be like this?” 

But of course it wasn’t. It took a long time before he could fall asleep independently. Even now, he needs to do a sort of roll call to make sure we are still there. 

So now I stay up late, past everyone’s bedtime and I relax. I read, I write, I watch a little tv. 
It’s the only time I truly have to myself. I’m still constantly listening for that cry in the night, and it comes without fail. I jump into action and soothe and cuddle, helping them drift off to sleep. 

It’s not an ideal situation but at some point, they will sleep through the night. They will no longer need me to cuddle and sing them back to sleep. They will kick me out of their beds and rooms so they can sleep in peace, without my thunderous snoring. 

But right now, they love our nighttime routine desperately. And honestly, so do I.

 

Chicks Dig Scars

Our beginnings

Kristy Wolfe Photography

I finally got to meet Sam and his family this past weekend at the Alberta Children’s Hospital in Calgary. When I was first contacted by his mom, Kristina, they were in Edmonton staying at Ronald McDonald House. Before we had a chance to shoot photos, Sam was transferred back to Calgary, which ended up working out, since the Wolfe Pack was down there for Canadian Thanksgiving.

Meet Sam

This is Sam every time his soother was removed!

And this is Sam’s family

The night before the shoot, Kane had one of his worst nights to date! I am okay with telling you all that he was a lunatic! Needless to say, I was not in the greatest of moods. But spending time with the McGuire family was just what I needed.

Clearly, this family has a great sense of humour.

Big sister, Kate, was pretty happy to be hanging…

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