Tuesday, October 16, 2012

A look at Asher's 2 year progress!

As all you parents know, doctor check ups almost always go along with a 2nd birthday! 

Last week Asher say his paediatrician for a 2 year check up and she was so amazed by the progress and gains Asher has made!

His Progress has been so exciting to watch - this time last year he was still struggling to maintain neck control and could not sit unassisted!  But now he is:

Cruising along furniture and walls
Walking with his toy walker
Crawling upstairs
Signing more than 20 signs consistently and appropriately and saying a few words like mom, dad, all done etc.
Gaining balance while standing
Pull up to standing and sitting up from lying down (both of these took a long time for him to master so the milestone seems HUGE!)
He is down to 2 medicines and hopefully one will be discontinued before Christmas!  (He started at 6+ when he was 3 months old and home!)
Drinking Homo milk 3x a day with one bottle of formula or pediasure! 

He weighs 22.44 lbs and is 68cm tall!  And while that is still below the 5th% - he's ON the CHARTS!  The doctor was so pleased, she knows how hard we fight for every ounce that he gains!  (If only the same excitement could be shared when I gain an ounce!!) :)

Yesterday he had his speech and language assessment by our home visiting SLP and she said he is in the 18-21 month range and many "emerging skills" that are in the 24+ month range!  He has caught up so well with his communication since his hearing aids have been in place!  His last assessment in May showed that he was over 9 months "delayed" in communication....the gap is closing! :) 

We are looking forward to a recreational therapist helping Asher out this winter! She will be assisting him in the pool! He has been terrified of swimming and pools so we are really hoping he will begin to like the water through this therapy! 

We are so amazed every day with the gains and strides Asher is making - every milestone is such a victory for him! 


Friday, October 12, 2012

An Anniversary To Remember....

* Please do not be alarmed at the length of this entry, yes it is long, perhaps it's more for me than you, however, it had to come out, I had to share....Blessing can come out of hurt and pain, I have proof!  What I have written comes from the deepest parts of my heart and I want to share it with you.*

Yesterday marked the second anniversary of Asher's life being saved.  Yes, his life has been saved multiple times, buy various physicians, nurses and surgeons, but this time was different, no one knew he needed to be saved until two people stepped in and took over.

Without recounting every vivid detail of that night, I remember holding Asher in my arms trying to feed him a bottle when a nurse popped her head in the door to let me know that her name was Lori and that she was our nurse coming on shift that night.  She looked at Asher from the doorway and asked me if he always breathed that quickly and had trouble drinking (milk was pouring out from the sides of his mouth) and I answered yes. She told me that she was going to call the midwife.  A little while later she returned to tell me the midwife had asked her to call the paediatrician on call and she was waiting for her to arrive to investigate further.

I was alone (Jesse was home getting Joel & Calla tucked in for the night) when the paediatrician said they wanted to do a chest x-ray to see if he had a chest infection.  Jesse returned and the paediatrician told us she felt his heart was slightly on the large side and was sending the image to the Cardiologist in London.  Then, at 1 a.m. he was transferred to London to their critical care unit.

In order to share about my experience yesterday, I need to back up!

Leading up to this moment, there were 36 hours of  "red flags" that, in retrospect, anyone should have been able to know that something was wrong.  Some of the concerns we had were heard and explained, others we observed with no explanation given.

Asher's feet and hands were blue, they said it was from the ink from his prints.  (He had had a bath!)  Asher was always sleeping and cried when he was moved.  He would not even wake up to eat, they said some newborns are just sleepy.  His blood pressures were different on each arm and they told us it was because a student nurse did the pressures and it was not redone right away.  He had a heart murmur which can be common in newborns, they said it would go away sometime in the first week.  He failed his infant hearing screen, they told us that can happen and he would be retested in a month.  We now know, that during those hours with Asher, we were holding a dying baby.  Had Lori not called the paediatrician and the "red flags" went unchecked, Asher would have died in his sleep within the next few hours as his fetal functions shut down.

Lori, the nurse caught so much in the 3 minutes she was at our door.  She listened to her instincts that said something is wrong and she did not give up until Asher had the care he required.

For the first year of Asher's life, I was not angry at the fact that all of those symptoms went unchecked.  I didn't have time to be angry, I was just thankful they saved his life!  However, slowly, over the second year of his life, anger began to creep into my heart.  I would say out loud when recounting the story, "I'm not angry, they saved his life, that's all that matters" but in my heart, the overwhelming sadness and anger would be raging.

Last month, the month before his second birthday, I retold the story to a friend who hadn't hear the details of those early days.  For the following week, I cried every day.  I was angry, sad, afraid and just outright mad.  I shuddered at the thought  "Asher could have died right under their noses!"  I was consumed all week by these feelings of anger.  I said to Jesse, "I am glad God performed miracles through those two people to save Asher, but I'm ANGRY that He had to step in and that others didn't do their job!"  I was horrified at the thought of other families experiencing similar situations at Stratford Hospital.  I was so consumed by my feelings that I emailed our Social Worker to ask her to meet with me to talk about how to work through everything in my head.  She agreed to meet with me the following Thursday.

The Wednesday before I was to meet with her, Asher was in Stratford hospital, in that same ward.  As I walked the halls to get to his room, I struggled to maintain my composure.  A familiar nurse came to his room to check on us, I told her I was upset and wanted to talk to the manager or whomever could listen.  I was physically shaking and inside I was fighting it, I did NOT want to go through the story let alone with someone who may not care.  The nurse was so caring and took me to see the Floor Manager (who is new since 2011 - the ward was without one for 10 years!).

I sat and shared my story for over an hour, with tears, laughter and pain, this manager cared.  She cried with me, took notes and expressed her concern that something like that could happen to us.  She took down recommendations and we talked about things that could have been done differently.  She was sincere and loving...she thanked me over and over for telling her and for helping other families by doing so.  I mentioned the nurse, Lori, and she was thrilled, because in her "books" Lori was one of  the best!

That meeting was full of healing for me.  It took the anger away and replaced it with thanksgiving and joy.  I can now truly say, I am thankful that they saved Asher and that God intervened.  I am no longer in pain over what "wasn't" done.  Only thankful for what "was" done!

Getting back to yesterday's anniversary!  Asher had an appointment scheduled for the day before he turned 2 this week with his paediatrician.  His paediatrician happens to be the one who saved his life (that is another miracle story for another post!).  They called and had to reschedule it for the day after his birthday and I agreed.

Yesterday morning I woke up and realized it was the anniversary of her saving him!  I called the floor manager at the hospital and said I was coming to town and would like to meet Lori again to say thank you and for her to see Asher.  She said, "oh no, she was on yesterday and is on nights later this week, let me check her schedule".  She came back and said "Lisa, you won't believe it, she is here today!  Come in later this afternoon".

I picked up two beautiful bouquets of fall flowers and went to Stratford.  When the doctor came to the waiting room to get us, I told her it was the anniversary of her saving Asher and that we wanted to thank her and I gave her the flowers.  She cried and we hugged.  The connection we have is beautiful because of that night that she saved him.

After the appointment, I nervously went to the hospital.  I knew I had to do this, but I wanted it to be how God wanted it to be, a chapter closing.  I had to thank Lori so that I could move on from that night.  I wanted to be clear and to share honestly from my heart.

The floor manager went and found her and brought her to us.  She said "this is Lisa and Asher" and I said "I don't know if you remember us but..." Lori said "Yes, yes, I do....I remember very well!"  As I explained why I was there I gave her the flowers, with more tears, more hugs, and I felt such a release of emotions that had been stored up for 2 years!  I said, "Lori, thank you for trusting your gut and intervening!".  She told me that Asher taught her to do that!  She said before then she would not want to speak up especially if no one else saw the problem....but since Asher she now listens and speaks up!  She thanked us for coming and asked lots about how Asher is now and the details that followed that night....she was grateful to be part of his story.  I left saying to the manager, "now I'm done....I've done what I needed to do".  She thanked me and said the world needs more people like me who will give back and let go of the hurt.

It's not through my own strength that all of this has been able to happen.  Yesterday was God ordained in so many ways, just like Oct. 11 was 2 years ago!  Honestly, for 2 years it's as though my heart has been used for a game of hot potato with toddlers....being squeezed, thrown, dropped, pressed, scratched and bruised.  But through that whole "game" God protected it.  None of those things caused long term damage, in fact, he made my heart better than it was before.  I had no idea so much blessing and joy could come from so much hurt and pain.  But God truly restores.  Actually, restores isn't sufficient....he restores and makes things even better!  It may not feel like it during the thick of those emotions, but He truly does and for that I am so thankful.  

Yesterday was an anniversary to remember, a privilege to be used by God while He healed my heart.  Thank you God!
 

Wednesday, October 10, 2012

You Are Two!

As I woke up this morning, the memories of Asher's birth came flooding back.  When I opened my eyes and saw the clock, it was around that time when I was waiting to go into the O.R. to have an emergency C-Section to get Asher out.  I was in the most physical pain I had ever experienced and the waiting seemed endless.  Thinking back on those emotions, the feelings, the fear, I do also clearly remember a peace that kept me calm and focused.  A peace that I had never experienced before. 

Two years later, I can sit here and share, that God's peace has taken our whole family through a journey of pain and joy, fear and excitement, leaving us a stronger, healthier, closer and more grateful, loving family.   God knew what we needed, and he gave us Asher as that gift.

This year, it is a joy to reflect back on the past year and see how far God has brought Asher!
We are blessed by the progress and milestones are spectacular in light of his history! 

I really do not have much more to say this morning, with a heart of gratitude I will celebrate my little man's life!    In 13 minutes he will officially be 2!  My heart does not have room for much more joy, how thankful I am for this gift of life!

Happy Birthday Asher!  YOU ARE TWO!! 

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

http://www.gabriellesride.com/meet-asher.htm

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
soon!”

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....

Tuesday, July 10, 2012

My Strength Comes From You

Whatever I have, wherever I am, I can make it through anything in the One who makes me who I am.
Philipians 4:13 - The Message