Edmonton Trip #2 – Diagnostic Cardiac Catheterization (#2) & Band Tightening
The main reason why we were being sent back to Edmonton was because our Cardiologist who preformed Mckenna’s catheter didn’t get the entire press results that Edmonton required to make the next decision; so Edmonton wanted us to come there to have their doctors’ preform another catheter to get the exact numbers they wanted, and to do certain tests to Mckenna to see how her lungs reacted to specific drugs.
We arrived in Edmonton on December 21st, 2016; this time around I felt super confident, knowing what to expect, the hospital, the process of being admitted into the hospital, and overall my surroundings.
Before we got the news that we would be coming back to Edmonton, I had a really hard time, at first, accepting that Mckenna and I’s first Christmas together would be spent in the hospital. As time passed and Christmas day approached, I was comforted knowing that either way, no matter where we were in the world, Mckenna and I were together for that special day, and she was safe.
Diagnostic Cardiac Catheterization #2
Mckenna was scheduled for a ‘diagnostic cardiac catheterization’ on December 23rd, 2016. One of the hardest experiences to go through is the hours before the surgery or procedure; with every procedure, Mckenna has to be “NPO”, meaning she cannot consume any food or liquids for at least hours before her surgery, and because Mckenna is not the only baby in the hospital who needs help, these procedures are never on time. There is always a window of time when the procedure should start, but it’s never close to the scheduled time.
A diagnostic cardiac catheterization takes anywhere from 3-4 hours; 3 hours for the procedure itself, and another hour at least to get Mckenna extubated, stable, moved up to the ward, and settled.
Mckenna’s second catheter went well; the doctor had an emergency to tend to after her procedure was over, so he called me and explained the results of the procedure.
He explained that unfortunately her pressures hadn’t come down enough for her to be ready for the Glenn, so he said the best thing for her would be to have her pulmonary artery (PA) band tightened, to lower the pressures in her lungs even more; her pressures in her lungs are also referred to as ‘pulmonary hypertension’.
When I received the news, I don’t remember being upset or disappointed; I remember feeling hopeful, positive, and anxious to move on with another surgery to prepare her for her big fix.
After Mckenna was brought upstairs onto the ward into the “ICE” (isolation) room, she was settled and we continued to go on with our hospital routine. She was tired from the sedations, her throat was raspy from the breathing tube, and her cheeks were extremely puffy. As always, it’s difficult as a parent to watch your child go through something you wish you could have gone through instead of them, but it was so refreshing to see she was ‘okay’ after yet another invasive procedure.
Mckenna’s First Christmas in the Hospital
Christmas morning felt weird. As my mom and I awoke and walked over to the hospital, the area around us was so quiet; everyone was in their homes with their families and friends, and there we were, walking over to a hospital to go celebrate Mckenna’s first Christmas. I think what was most hard for me to accept was that you just never imagine having to spend Christmas Day in the hospital. Christmas is supposed to be this exciting, magical, happy day, and don’t get me wrong — it was — but, it definitely was not how I envisioned our day.
The hospital was very generous with gifts for the patients families; we received a giant basket full of candy, chocolates, snacks, and chips. Later in the morning, Mckenna was visited by Santa and he brought her a giant blue Care Bear (I think it’s Sunshine Bear), a sleeper, and a TY beanie cat. I cannot wait until she’s old enough for me to explain to her that Santa brought that to her all the way in the hospital in Edmonton – he didn’t forget about her and made sure to find her.
The rest of our day was spent inside the 4 walls of Mckenna’s room; no fancy family dinners… no memories of seeing my step-son open his gifts that morning… no seeing my family or spending any time with them. Nope… It was just another day… Yes, another day with Mckenna, but just a regular day. By the middle of the day, I was so ready for Christmas to be over and done with for another year.
I told myself next Christmas Mckenna will be that much older, and will actually know what’s going on, and it’s all the more reason to make next years’ Christmas even more special.
On December 28th, 2016 around 1pm, Mckenna went into the OR to have her PA band tightened. This time, her surgery only took about 2 hours. Because the band was already in place and established on the pulmonary artery, the surgeon just had to make the incision, tighten the band, and close her back up.
The first time Mckenna had her PA band surgery, she was only intubated for 24 hours, and the next day she was extubated. After her surgery was completed, the surgeon came up and spoke to me; he explained the surgery went well, but the band was very tight (in order to bring her pressures down), so he warned me that would bring down her oxygen levels, severely.
Mckenna was brought into the PICU around 5pm; she was intubated, sedated, puffy, and pale… again. For the incision this surgery, her surgeon was able to only make a small incision off her sternal incision, that makes her scar looks like a half cross; it’s actually so beautiful, and I was so happy to see she didn’t have to be ‘opened up’ so extremely. The incision he made didn’t even require stitches, just glue to keep it closed… one less thing to heal.
I was convinced Mckenna would rebound just as well as she did after her first surgery, but that was not the case this time…
Mckenna ended up being intubated for FIVE extremely long days… She was intubated for so long because her oxygen levels (saturations) would not come up to her expected ‘baseline’ (70% oxygen in her blood). During her intubated, I came down with an extremely terrible flu, and I was so sick, I couldn’t go to visit her for 2 1/2 days.
So to sum up how hard things were for me… my baby was intubated and overall not doing “well”, because her oxygen saturations were only in the 50’s, I was puking my guts out and felt exhausted and fatigued, I was worried sick about Mckenna.
On the second day post surgery, a cardiologist from the PICU called and advised me that they were most likely going to take her back into surgery to loosen her band because her oxugen saturations just would not come up no matter what they did.
An hour later, the same cardiologist called me and said they actually didn’t want to bring her into surgery because her saturations had picked up over that past hour, and they wanted to wait it out to see how she did.
Thankfully, Mckenna didn’t have to go back into the OR. Her saturations did climb up, and by day 4, she was ‘eating’ through her sedations, was coughing a lot (due to the breathing tube), and was overall showing signs she was ready to be extubated.
Another issue during Mckenna’s intubated was her diaphragm. It had been determined by the ICU doctors through an x-ray that her diaphragm on the right side was extremely higher than the left side. The doctor’s explained that her diaphragm may have been ‘nicked’ during surgery (a risk), and it may have been paralyzed. He explained really the only way they could determine if it was fully paralyzed was to extubated her and see what her breathing looked like; if her breathing resembled a “teeder-todder” look, it meant it was paralyzed and Mckenna would have had to go into the OR again and now have her diaphragm fixed…
At this point, I EXPLODED. I demanded the doctor’s tell me WHEN, WHY, HOW something like this could have happened… They were going inside to fix her heart, and they now paralyzed her diaphragm… I couldn’t believe what I was hearing. My sweet girl had just been through hell and back, and now they were telling me (like how they would say “oh the sun is shining”), “Mckenna will need repair surgery to fix that”.
Luckily, after expressing how upset I was, the doctor’s investigated the issue further, and they determined this issue happened this surgery, and not her first banding surgery. Of course, they now couldn’t explain how it happened, but they assured me they would be able to fix the issue if it was paralyzed.
The hardest thing was hearing the PICU doctor say “your daughter will be extubated, and she will most likely fail”… (meaning she would more than likely have to be emergency re-intubated).
New Years Eve / Day – 2017
New years sucked – no more to say about that.
On January 2nd, Mckenna was successfully extubated!!! She proved everyone wrong. She did amazing. She didn’t require any extra help after her breathing tube was pulled out. Being extubated in the PICU is easily one of the biggest challenges and accomplishments a child can go through there. Mckenna never had to be re-intubated, and after her breathing tube was removed, she never showed the “teeder-todder” signs that her diaphragm was in jeopardy.
-withdrawal days upstairs – those struggles
-arguing with doc’s / nurses
-talk about how hard being on the ward is
On Thursday, first, we were told a flight was able to come and pick up Mckenna and bring her back to Winnipeg, but then a massive snow storm hit Winnipeg and the pilot, team, and the plane were unable to fly due to the weather conditions.
The next day, we were told Mckenna was possibly able to be taken on a flight returning back to Winnipeg that evening, but later we found out the pilot’s time had ‘timed out’ once the team and the plane had arrived in Edmonton. Big let down!
Finally, on Saturday Mckenna had a plane fly from Winnipeg to Edmonton to pick her up! The weather had calmed down, and it was a brand new ‘fresh’ flight team that would be caring for her while on the plane.
Around 6pm, a transport nurse and flight EMS worker arrived into our room first, then two ambulance EMS with a stretcher arrived shortly after. They attached Mckenna’s car seat to this giant stretcher and I got her settled into her seat and clicked in. I said my goodbye’s and we quickly followed by saying our goodbye’s to the nurses and another heart mom that I had met in the room, as I knew if I stayed any longer what was happening would about to sink in, and I could feel myself getting emotional.
Mckenna was transported back to Winnipeg on the medical jet on January , 2017. My mom and I flew home via West Jet later that evening.
We arrived safely in Manitoba around 11pm that following night, and Mckenna arrived safely around 10pm.
Continue reading my blog about our return to Winnipeg in my next blog post titled ‘Back to Winnipeg’.
From my heart to yours,
- D ❤
January , 2017
After finding out that Mckenna was approved to be medically flown to Edmonton’s Stollery Children’s Hospital, J and I left Manitoba around 7pm that night. We headed West in hopes our drive wouldn’t give us any issues. We hoped our drive was going to be smooth, but it was the least thing from that. 2 hours in, we incurred heavy fog, light snow, and the worst… icy roads. We took turns driving and we were determined to drive straight through to Edmonton with no stops, but the weather wouldn’t allow us to do that.
It was approaching 2 in the morning, and we had been driving for about 7 hours and we were not even half way there. We had to slow down to 50 km’s an hour to drive safely on the ice.
We decided to stop at a hotel in Regina for a quick sleep and breaking, then we would head out early in the morning. We slept for 5 hours and headed back out in the morning around 9am. We drove straight until we got to Edmonton; we arrived in Edmonton around 6pm, with a total of a 17 hour drive…
The first thing we did was go and see Mckenna in the hospital. We called the Stollery Hospital around 1am, and were so happy to hear she had arrived safely with the Transport Team. Doctors were concerned how she would do in the flight; due to the altitudes in the air, they were worried with her oxygen already being low, if it would drop even more. They warned me she may have had to be intubated for the flight so they were able to control her oxygen saturations, but thankfully she powered through the flight and did amazing!
It was amazing to see her laying in her crib! All the stress, worry, and anxiety left my body the moment I seen her. She looked so comfortable in her bed, and
Catching Up on ZZZ’s
Highlight of the PICU
Different PICU Stay
Diagnostic Cardiac Catheterization #3
GREAT NEWS – Surgery
Lifeflight Air Ambulance
Lifeflight provides rapid inter-facility air ambulance transport for critically ill or injured Manitobans from areas outside a 200 kilometer radius of Winnipeg.
Lifeflight is staffed by flight nurses with advanced critical care training and experience and may be supplemented by critical care or emergency physicians, obstetricians, neonatology physicians and respiratory therapists depending on a patient’s needs.
Lifeflight operates out of the Manitoba Government Air Services Hangar at 900 Ferry Road in Winnipeg and is available 24 hours a day, 365 days a year.
Half a heart, not half a life.
Special hearts need special care.
Sometimes real superhero’s live in the small hearts of children fighting big battles.
1 in 100 … one in a hundred babies will be diagnosed with some type of congenital heart disease in Canada.
You were given this life because you were strong enough to live it.
You go through the wars to become a warrior – keep standing strong brave little heart.
Some people never meet their hero, but I gave birth to mine.
You can’t scare a heart mom – seen it, changed it, cleaned it, toughed through it, strong because of it.
M.O.M – mother of a miracle.
You never know how strong you are until being strong is the only choice you have.
Our children are the greatest proof that miracles do exist.
From my heart to yours,
Aware of what really matters
Strong beyond measures
a Mother to an Extraordinary child
Taking nothing for granted
Always on Guard
in Survival Mode
Pushed to the Limit
on an Incredible Journey
No ordinary mother
Protecting a Warrior
Doing all that I can
Loving Beyond Measure
Pushed Beyond Limits
From my heart to yours,
– D 💕
Here’s hoping people who read this won’t have children who are hospitalized but I thought it would be a helpful post if that shall ever arise, as I am the expert of what / what not to bring to the hospital…
- Babies wipes from home, if your baby has a sensitive bum
- Socks – good for 3 uses: 1) mitts so your baby does claw at any wires, IV’s, etc, 2) for their intended use of keeping babies feet warm, and 3) keeping foot / hand monitors in place
- Babies favorite blankets – 1 flannel receiving blanket to go over the hospital’s crib fitted sheet, and at least 3-4 cozy blankets. The hospital’s fitted sheets are usually very rough (from the crazy chemicals they wash them in), so I found bringing a flannel receiving blanket brings the smell of your home to the hospital; this makes your baby feel more “at home” and is comforting for when he / she is falling asleep
- Toys, toys, toys; depending on your babies age. I introduced simple baby toys to Mckenna when she was 3 months old so she was very used to playing with and being entertained with toys; hospital rooms / cribs are BORING for babies. The hospital will most likely give you a mobile for your babies crib (if you request one), but if your baby gets bored easily (like Mckenna), load up on rattles, books, and any of your babies favorites from home. It will pass the time, and distract your baby from the surroundings.
- Babies favorite warm jammie’s – depending on how long the stay is, pack at least enough for 2 changes a day – one to change baby into in the morning and one for bed time
- Lotion – hospitals are very dry!!!
- IF your baby is bottle fed, bring babies bottle. The hospital does supply formula with disposable caps / nipples that fit onto the pre-made formula bottles but the nipples are really cheap. Your baby will feed a lot better if you bring yours from home what he / she is used to
- Miscellaneous medical documents like: health card, extended medical insurance benefits (blue cross, great west life, etc), letters from doctors, list of medications
- & if you’re a heart mom like me, bring your babies medical binder containing all of his / her medical information / report, etc
- If you’re spending the night: your favorite blanket. Hospital’s are FREEZING, and their blankets are as thin as tissue paper. Won’t hurt to pack fuzzy socks, a sweater, and pj pants, too. The last thing you want is to be up in the middle of the night, freezing!
- Phone / tablet chargers
- A reusable bag for dirty laundry – for both you and your baby to share
- Snacks for you (juice, granola bars, apple chunks, a banana, vitamin water); anything that will give you a healthy boost of energy, and that’s small enough to fit in your purse.
- Your phone (for pictures & social media), tablet, e-reader / book, etc to entertain yourself while baby sleeps
- Diapers – the hospital will supply f0r you your entire stay
- Formula (if your baby is formula fed) – the hospital supplies all formula needs (even if your baby has an allergy)
- Stuffed animals – they take up so much room in your baby / overnight bag
- Baby body wash – the chances of your baby having a bath is very minor
- Diaper rash creams – if your baby gets a diaper rash, the hospital has the good medicated stuff (way better than the stuff you have at home)
- Miscellaneous daily care items like: q-tips, face cloths, and medications (hospital supplies all meds while baby is admitted)
- Cute outfits – the last thing your baby will want is to be dressed up. Baby will want to be comfortable, warm, and cozy for the drive home
- iPod / headphones – you’ll need to be aware of what’s going on around you
- Hand sanitizer – hospitals have automatic hand dispensers outside every room
Good bags to use for overnight bags:
- a cute backpack
- diaper bag
- Lug bags
- oversized purse
From my heart to yours,
After lots of thought, I decided to put together this blog not only for myself, but for anyone who is interested in our experiences, and for others to relate to who may be experiencing the same kind of struggles we are.
I am a mother to the most beautiful, smiley, cheerful, tough, brave, courageous and exquisite little girl, Mckenna.
Mckenna has brought so much joy, happiness, laughter, warmth, comfort, firsts, endless memories, harmony, and bliss to my life since coming into it. She is my gift. My daughter is the reason I go on every day, with a smile on my face, even on the hardest days when all I want to do is cry. By simply being happy self, she can make me forget whatever I am worrying about.
When I found out I was pregnant, I asked myself “what am I going to do…?” Now I ask myself “what would I do…” without my amazing daughter, who is my total existence.
This is how my life has changed since becoming a new mom and these are my stories about what I’ve experienced since the day I found out I was expecting Mckenna; the hurtles I’ve overcome and the milestones together we met surpassed.
So, what is a heart mom?
A heart mom is a mom who cares for her baby who has heart conditions or defects. A heart mom experiences the struggles her baby goes through, just in a different way. Although she does not experience the physical health problems, she experiences it emotionally, mentally, and psychologically. A heart mom wishes she could be the one going through what her baby is going through, and not her baby. A heart mom would do anything to trade places with her baby. A heart mom feels like she can’t protect her baby to the fullest. A heart mom never stops worrying about her baby. A mom who knows close to the same amount of information as a nurse who has a nursing diploma. A mom who can explain her baby’s entire health history effortlessly in under two minutes. A mom who knows endless numbers like medication dosages, measurements, important milestone numbers, weights, and formula recipes. A mom who knows countless doctor’s names, faces, titles, and responsibilities. A mom who can never “relax”. A mom who doesn’t quite entirely enjoy every moment with her baby, because she is constantly looking for something to be wrong. A mom who is always assessing her baby’s breathing, skin color, inputs, outputs, fontanel, and overall health continuously. A mom who is not only her baby’s mom, but her baby’s nurse, cardiologist, doctor, and her baby’s voice.
As a heart mom,
I have seen my daughter turn completely blue in colour (severe cyanotic episodes) hours after her first open heart surgery. I have spent eeks in the hospital by her side, staring and analyzing the numbers on screens of the heart monitors. I have had to hand over my daughter to cardiac surgeons, praying that someone higher than us takes control of their hands and guides them to complete my daughters surgery without a single complication – essentially putting my daughters entire life in someone else’s hands. I have seen the fear, worry, and concern on nurses, doctors, and specialists faces that have cared for my daughter. I have had to leave my daughter in the hospital, and was not allowed to bring her home when she was first born. I was never able to hold my daughter when she was first born. I went through 30 weeks of pregnancy “not knowing” how my daughter’s health was going to be when she was born. I have had to comfort my daughter before and after being poked with needles, in her arms, feet, neck, hands, and the worst, the side of her head. I have had to see my daughter suffer when recovering from her first open heart surgery, not able to hold her or do anything to comfort her. I have had to see my daughter hooked up to IV machines, breathing machines, catheters, and draining tubes. I have had to fly to another province, on a plane alone with my daughter, and travel through an unfamiliar city for her first open heart surgery. I lost special moments in the first month of my daughter’s life to several hospital stays. I have had to be picked up off the floor by her dad after collapsing after arriving home from a visit from the hospital, without my daughter. I have spent days in bed, depressed, and secluded from the world
Guilt – a feeling of responsibility or remorse;
The guilt of questioning my decisions. The guilt of thinking the way I think. The guilt of having to put my baby through major surgeries, hospitalizations, endless appointments, and discomfort. The guilt of thinking could I have done something differently to change this. The guilt never ends, and it is ultimately the worst feeling to have as a heart mom. It never leaves my mind. It sinks deep into my body, and makes me question myself as a person.
It’s not usual for me to express how I am ACTUALLY feeling, because I feel as though it’s not “about me” anymore – it’s about Mckenna. She is my main focus, priority, and the reason I am still standing. I am positive for Mckenna, and I post and express positive things in our life to others on social media’s because it’s easier to do. But here is the truth . The truth is it’s been an extremely long and tough journey for us a family.
I believe I have proven the statement to be true – “what doesn’t kill you makes you stronger”.
From my heart to yours,
– d ♥
At such a young age, your unique and one of a kind personality began to show, and everyone who met you immediately fell in love with you.
I promise to tell you YOUR entire story, when you are ready and old enough to understand. I want you to know how courageous, strong, and brave you were from the day you were born. You have gone through what most people will never have to go through in a lifetime.
I promise to be your best friend, even on the days we may not get along. I promise to always be there for you, support you, and always listen to you. I promise to always be honest when you ask me questions. I promise to teach you everything I know, and to never repeat the same day twice. I promise to always make you smile, laugh, and show you how precious life is.
I will be your sounding board when bullies in school ask you uncomfortable questions. I will teach you to love and be proud of your scars.
But most of all, I want you to know that when you were little, dad and I wished that it was us going through what you had to, instead of you.
I am amazed by you, and I want you to know that you are my hero. I will always look up to you and you will forever be my teacher and my guide in life.
Since the day you came into my life, you have brought so much happiness, joy, beauty, special moments, to me; and for that I am forever so grateful for you. “I love you” will never be enough to express how much I appreciate you and care for you. You complete my life, and I am so blessed to have you as my daughter.
I can’t wait to spend every day together, make endless memories, have our own inside jokes, and be by your side to watch you do all your “first’s”!
I will love you forever, plus one day.
Your Mama ♥
This picture is one of my favourite moments together – you cuddled with me for almost an hour with no movement – all you wanted was your mama! ♥
to measure pressures in Mckenna’s lungs and heart (Mckenna has too much blood flow (pressures) going into her lungs.
I refrained from posting anything on social media about this procedure, as I thought it would be an in and out hospital stay for us; I was wrong…
Winnipeg – Children’s Hospital of Manitoba
The morning of the surgery was once again an extremely hard day for me; after the procedure was finished, Mckenna’s cardiologist sat down with me; and we didn’t get the news we were hoping for…
Mckenna’s pressures in her lungs are still too high for The Glenn surgery, even after her pulmonary artery banding in September. With her pressures being so high, her cardiologist does not want to send us for surgery because the Glenn Shunt would not be successful.
Mckenna is going to be presented to the surgeons in Edmonton shortly, and they will decide what the next step will be.
Mckenna’s oxygen levels were substantially lower than normal after her catheter, so she has been put on oxygen.
We were sent home from the hospital with oxygen support. Mckenna is such a happier girl with the extra help of continuous oxygen; she’s not having to work so hard on her own. We hope it’s a temporary thing and it gives her a little boost to help her sustain her oxygen levels on her own.
That’s it for now.
From my heart to yours,
– d 💕
A smile is something that’s so simple to do. When anyone asks how I am doing, I respond “I’m great!” with the biggest smile on my face.
My smile will keep people from asking further questions about the truth. My smile will make people to think my everyday life is okay. My smile reassures people my baby girl is healthy and not having struggles every day. My smile hides the truth; the truth that if I did actually express how I am feeling and how we are doing, that person would regret asking.
When people do ask and I’m up to explaining what’s going on in our world, a lot of people don’t listen. At first they will listen to the beginning of my story, for a short amount of time. Then half way through they will lose interest, either by nodding, looking away, or smiling at me with an empty look on their face and responding before I am done speaking. Why I use The Smile.
I have told our story so many times, and sadly it’s lost connection with my real feelings about it.
“When will her next surgery be”? What’s wrong with her?” “How many surgeries will she need?” “Will she still need surgery?” – everyone
I don’t think people want to know the thoughts that go through my head every second of every day. Do people want to know that every moment I’m wondering if my daughter is going to be okay to the next minute? Do people want to know that there are days I question myself and wonder if I should have done things differently? Do people want to know the things I worry about; like “will my daughter make it through the night tonight… why was her breathing so rapid today?… was she more purple today than yesterday?… did she over do it today? …why were her feet so blue? … is she getting enough oxygen today? … did I touch her with un-sanitized hands? … why is she so cold… why is she so cranky?… is she in pain? It never stops.
I am consumed by this heart defect. Most days it is all I think about every minute of every day since the day I found out about it.
Most days, I am a mess inside, but when a friend texts and asks “how’s it going” … “great!” I reply (smilie face).
The smile is a lot easier to do than dealing with reality.
Thanks for reading!
From my heart to yours,
– d ♥