Tuesday, September 18, 2012

White or Whole Wheat....

I don't often refer to Asher as a "special needs" child despite his diagnosis and medical history.  To me, his mama, he is my little buggaboo....my precious miracle who lives every day with laughter and smiles, kisses and lots of hugs!

With that said, our world is different than it was before Asher was born.  A world filled with a whole other language (that we had to learn on the fly), specialists for parts of the body that I did not even know existed, and decisions that are on a whole other scale...those decisions weigh far more than I ever thought possible!  I don't exaggerate by saying, the decisions we are often required to make can lead to life or death situations for Asher.  The symptoms that seem unimportant in a medically stable child, can change Asher's life forever given his medical conditions.  His heart and his breathing has the most to do with those decisions, as it turns out, bother are rather important to living!

I have found it challenging lately to explain how this affects a person long term to those who have never been in this situation.  It's not the same as having a child with an ear infection and after 10 days of antibiotics life goes on as per normal.  It's a life long commitment of daily choices that affect Asher's well being. 

Our life is no longer filled with what now seem like easy questions "should we feed our children white or whole wheat bread?"  "What is an appropriate bed time for a 6 yr old?".  It is filled with things like, will this medicine I am giving Asher so he can breath easier raise his heart rate to a dangerous rate?  How do we treat bronchitis when nothing is working and he isn't able to breath well?  If I go to sleep, will Asher wake up in the night with his heart racing and irregular and I'll have to have the presence of mind to call the Cardiologist on call, pack a bag and drive to London at any given hour?   How will Joel and Calla feel to find their mom and brother gone with the time of their return unknown?  How do we maintain "normal" when everything isn't very normal?  How do we socialize with people without fear of picking up germs and causing Asher to become sick?  How do we keep all of us healthy during the fall/winter and still continue to go to church and worship with our church family?  How do we explain to our extended family, yet again, that we can't have a family function at the family farm where we live because someone is sick and we don't want Asher to catch it from them?  How do I treat Asher like a typical boy when all I want to do is put him into a bubble!?  How do I answer the question "how old is he" when people in public ask....because when I answer with the truth, they give me a blank stare, and even sometimes ask then why is he so small!?

This list of questions is not exhaustive!  It's a glimpse into the things that we think about almost daily.  And the last thing I want is for people to feel bad for us.  We have an incredibly blessed life, full of love and hope (and adventure!).  I do, however, wish I could find a better way to help people understand that it is a heavy weight at times and it's not always easy.

On most days, Asher looks so healthy and well that I think it's difficult for people (physicians included) to remember that he has a host of extra needs and complications.  Our lives don't continue on "as per usual" when we leave the doctors office with a cold. 

Tonight, as Asher is in the hospital to be seen by the pediatrician on call...I am thankful for the care he receives.  It's hard though to be home with Joel and Calla while Jesse waits with Asher....

Sunday, September 16, 2012

Asher's Cardiac Story for Cardiac Kids Foundation


Asher's Story

By looking at our family, most people would never know the journey we have been on during the past 17 months. It is still difficult for me to even believe it! In 2010 I became pregnant with our third baby. I was so excited but nervous of the pregnancy after previously having two high risk pregnancies, I was not sure what to expect.

It turned out to be an amazing pregnancy with no complications or concerns whatsoever. I had an amazing midwife who encouraged me to take an early leave from work so that it would be a healthy pregnancy and so that I could enjoy time with our son and daughter before our baby arrived in the fall!

After 3 weeks of on and off and several visits to the hospital, Saturday Oct. 9th came and the midwife said that I was finally in active labour and she broke my water. I was relaxed and excited! Our two children were away at their grandparents for the weekend enjoying Thanksgiving dinners and our new baby was about to arrive, everything was coming together so well. After breaking my water, labour stopped. I was transferred care to the OB on call (who was visiting from out of town) and my midwife continued to encourage me through the on and off labour. My husband Jesse had joked for 3 weeks
that I had to hang on until 10/10/10, and I would say “I’m not waiting that long! I want him to come

After pushing for over an hour, I looked up and saw the midwife and doctor’s faces. I knew there was something wrong. They exchanged quiet words and then the doctor looked at me and said they needed to get the baby out, he was not tolerating the contractions. His heart rate was dropping during every contraction. Asher Jess Treowan Britton was born on Thanksgiving Sunday 10/10/10 weighing 8lbs 13oz at 8:13am via C-Section! With APGAR scores of 9 and 10 we were so thankful he was alright!

Our joy soon turned to concern. Not all at once, but after having 2 babies we knew there were some things that didn’t add up. He was very lethargic – sleeping constantly and not waking up to eat. Milk poured from his mouth when he did eat, and he had a very high respiration rate. His blood pressures were different on each side (which was excused as a student nurse error) and his feet were blue (which we were told was from the ink from his foot prints). At around the 35 hour mark, a nurse walked into our room and took one look at Asher and called the paediatrician on call. By 11pm that night they did a chest x-ray assuming he had a chest infection but quickly saw that his heart was on the “large” side slightly out of place. The paediatrician transferred him by ambulance at 1am to London, ON to be seen by the Cardiologists there. I was not allowed to go as I was still recovering from the C-Section. Jesse followed in the dark not knowing what was before us. As I walked back to my room from special care, I had never felt so alone in my life. I had never considered having an unhealthy baby. Babies are born every day and aren’t whisked away in the middle of the night without their mothers.

Asher was in London for less than 10 hours. They diagnosed him with Interrupted Aortic Arch Type B. His fetal bypass functions were keeping him alive, but as they shut down, his body was shutting down. They gave him prostaglandin to keep the blood flowing while they transferred him to Sick Kids. The symptoms all made sense as we looked back at his short life. Along with his cardiac diagnosis, we received the information that this rare heart defect was almost always associated with some type of
syndrome. The geneticists were involved immediately and began their testing. We were barely processing the fact that our newborn needed open heart surgery let alone the fact that he probably had a genetic syndrome! It was so much to absorb.

At just 4 days old, Asher had his first repair. They repaired the Arch and closed his ASD as well as widened his Aortic Valve. Just 6 hours after surgery while in CCCU and while the surgeons were checking on him, Asher suffered a cardiac arrest that forced them to re-open his sternum. They left his sternum open for just over 2 weeks, and after 2 failed closures, they successfully closed our baby. After closure, his arrhythmias began. It was over 2 weeks before he was diagnosed with Atrial Ectopic Tachycardia. While seeing his heart rate go from 120 to 230, Dr. Schwartz looked at my tear filled eyes
and said, “it’s ok, he’s going to be ok”. He used the analogy of watching your favourite sports team. “You can’t get too excited with the highs, and you can’t get too upset with the lows.” These words put everything into perspective for us as we realized this was part of the journey Asher was on, there would be steps forward and steps back. During his stay in CCCU, we received the news that Asher had a rare genetic syndrome called CHARGE Syndrome and that his cardiac condition was just the main issue but
there would be many other medical conditions that would need attention. We were given a list of percentages of problems that he may or may not have.

His arrhythmias kept him in hospital until he was 3 months old. Once they were satisfied with the medicine combination and its effectiveness we were sent home with the knowledge that his Aortic Valve was still not wide enough and would need intervention sometime in the future.

That sometime came a lot faster than everyone expected and at 5 months old Asher had his second open heart repair – the Ross/Kono procedure. Dr. Van Arsdell removed his Aortic Valve and replaced it with his Pulmonary Valve then put a bovine jugular in his Pulmonary position! Amazing! Approximately 6 hours after surgery Asher had his second cardiac arrest brought on by an episode of pulmonary hypertension. Thankfully it happened at shift change when there were so many in the room to help save him. After over a week in CCCU, Asher was up in 4D with all of our familiar nurses and staff. It felt like it was happening so quickly compared to our first experience! Two and a half weeks later we were home.

Today, at 17 months, Asher is still on medication to control his heart rate but he does really well! He has some delays because of his hospitalization and syndrome, but works hard every day to overcome them. He is developing quite the personality, especially since he now has a hearing aid to help him with his hearing loss! Asher’s strength and determination mixed with his joy amaze us – it is a blessing to see how far he has come in such a short time! Asher’s name means “Happy Gift of Hope” and it couldn’t be
more perfect for his life. He truly is our happy gift of hope!

We are forever grateful to Dr. Van Arsdell and the team at Sick Kids who treated Asher like their own, going above and beyond what I ever would have expected to see Asher go home healthy and well. While we know that Asher’s cardiac journey is far from over and he will need “maintenance” surgeries as he grows, we know that at Sick Kids he will always be in good hands!
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Wednesday, September 12, 2012

"Don't Cry Over Spilt Milk"

The last few months have been really good in so many ways.  There have been challenging days, but for the most part we have been able to grow as a family and enjoy some quality time together without a lot of hospital stays or appointments.

This fall, I have taken on the role of homeschool mom.  Not because it is something I ever thought of wanting to do, mostly because it's been something God has been asking me to do for several years and I have kept saying no.  This past spring, Jesse and I decided it was time to make the decision one way or another....either take on the challenge, or put it to rest and support our kids through their public education!  After much prayer, counsel and thought, I realized that since Asher was born I have had to overcome a lot of fears, vows and selfishness and really, when it comes down to it, we have had to teach him a lot of what he knows now - gross motor, fine motor, and otherwise.  I decided that if I could walk through the challenges of raising a special needs son, then God would surely have to give me the grace and strength to walk through the days of homeschooling two healthy intelligent children. 

We are blessed to have Joel and Calla who want to learn - are desperate to learn and at every opportunity are digging deeper for facts, truth and general knowledge about just about anything that come their way. 

That is all just some background to the story.  This blog isn't about homeschooling... it is more about about me tonight.  Right now, where I am at and who I am.

Lately I feel like I have been posting status updates and pictures on facebook that paint rosy little snapshots of our lives.  And I have not embellished or lied about any of it.  I don't post something unless I truly feel it, did it or see it etc.  But those moments, those small glimpses into our lives don't tell the complete story do they.  For any of us really, not just for me and my family. 

So, at the risk of putting myself out there for all to see, I feel full disclosure is required.  Not so you know every gritty detail of my life.  Not so you feel bad and think wow her life is hard.  Not so you think why is she telling us this - does she really think her life is that much harder than ours?  No, the reason is to reveal an underlying truth.  God saves me every day.  In the flesh I am just like everyone else - I make mistakes and there are really hard days.  But every day I wake up to new mercies and for that I am forever grateful. 

Here, in point form are some random facts (the good, the bad, and the ugly) about my life as it is right now:

I get overwhelmed easily.

I cry when I listen to the song "Healer" in the van taking Asher to appts. because I believe it and it reminds me of when we would play it for him on the ipod in Critical Care.

I don't however cry when I sing "Healer" to Calla (along with Kari Jobe) every night when she plays it on her CD player as she falls asleep.

I don't always think it's "fair" that God asks so much of me.  Some days the requirements make me want to kick and scream and through a toddler fit.

I never thought about having children when I was growing up, I had far more "selfish" ambitions then to think about having kids. 

I now don't regret for a moment that I never pursued those ambitions and that I am home with three kids.

My kids - mostly my oldest, drive me CRAZY!  I love them, but honestly, we do not always get along.

It is not unheard of for me to tell my husband that "I quit" whatever the task may be before me.

My husband graciously encourages me even when I say "I quit" over and over!

I feel like I can no longer relate to many people since having Asher.

I have a whole new set of people I can relate to since having Asher and have a whole new set of ministry opportunities since having Asher.

My back hurts at the end of most days (if not sooner than the end of the day!)

I have to ask my kids for forgiveness when I get upset too easily or when lose my temper.

Today....Calla spilt milk, it made Asher cry, then in turn (as it was a really challenging day) made me cry.

I found it difficult to teach my kids not to cry over spilt milk today, when I, their strong mother, was crying like an infant over the very same spilt milk.

And that's as honest as it gets tonight....