The appointments

So the last you heard from me was about the hospital adventures.  Since that point in time we moved to a "new" area in both life and work and geography.  Andrew accepted the call from my parents church (also my former home church) and agreed to become the pastor there.  It was a long journey.  A year from the time they asked us to the time that we were able to say yes.  We eventually packed up all of our belongings and moved to our wonderful new home.  We had quite a few loose ends to tie up in Winnipeg including but not limited to Simon's medical support team.  We had to transfer which RHA we were in and make sure that we were covered.  We snuck in some last minute appointments for assessments and the like.  That is what this is all about anyway.  The assessments and the like.


A wise friend on mine made a great comparison about appointments and dentistry.  More on that later.
When Simon was born we were seeing loads of specialists for his many challenges.  None of those challenges will ever entirely disappear.  Eating will always be an alert on our radar.  Not so much for the extinct tube feeding, but as he gets older we will have to watch that he doesn't get overweight and also keep an eye on his thyroid function.  The only thing that might become a non-issue is allergies.  We hope that he will in time outgrow his milk allergy, but until then, we will keep testing him every six months or so and see where he's at. 

I digress again.  When he was born he was assigned a physiotherapist and an occupational therapist.  (The OT was for those odd jobs that newborns get on the side :) Anyway, there was always this pressure to push him harder and get him to be the best that he could be.  And the questions - "Can he roll over?  Does he go from right to left or left to right?  Is it always the same direction?  Do you think that his one eye drifts a little outward or is just the way it looks right now?"  I am very glad that I started to write down what he was doing and when and in which direction.  All of these are very important details that every mother must know!  (Just a little tongue in cheek if you missed it.)

So after getting the third degree about what he was doing and how far behind he was, going to appointments became a bit of a challenge for me in several ways.  The first challenge was to see what I could teach Simon to do before his next appointment.  I was always watching to see what I could catch him doing so I could be ahead of his therapists when it came to question time.  The second challenge was to maintain a good head space.  After leaving an appointment in which there was this albeit professional assault on my little man, I had to ensure that I did not get down on myself or Simon.  He was doing his best, and I was doing the best that I could under the circumstances.  I had a lot of things going at once, and it was hard to make time to work on the intricacies of doing therapy with a baby.  There was a lot of pressure going to these appointments, and a lot of it seemed like it fell on me.  Like my wise friend suggested, when you are the person in charge of brushing and flossing your child's teeth, it reflects back on how well you did.  If you have an eight year old with a cavity, that is probably because they are not brushing or flossing, but if your two year old has a cavity, the dentist probably isn't going to think that the child wasn't doing a good job of brushing - it was you!  When Simon didn't do very well at one appointment or another it was not always because of him - it might have been because of me. 

Just before we made our move, we had an assessment with the child development clinic.  The doctor did all kinds of little things that seemed very simple, but helped her peg him into a certain time frame of development.  It was wonderful to speak with her afterward and find out where she thought he was and what he was good at and what was still developing.  Never once when I was listening to her did I ever feel like I wasn't doing enough for him.  At this point he was seven months old and she pegged him at roughly a three our four month old development.  I figured a few months behind considering heart surgery wasn't very bad at.  When we got the written copy of the report in the mail, there was this warm blanket right out of the dryer feeling that I got.  Her wording was excellent and always encouraging.  "Simon presents as a petite sociable and very alert little boy."  I could still read it over and over again.  In places where he hadn't shown her what we said he could do, there was no doubt in her wording that he had indeed accomplished these skills.  

As Simon got older it got harder to be a part of his appointments.  When I first met our new PT from Dauphin, I thought she was great.  (I still do!)  But, it was hard to watch someone else analyze my child.  It was great to know on the scale or motor skills where he was, but it was also hard to drive back to camp that afternoon and hang out with regular kids and not be discouraged because Simon needed to work so much harder to accomplish what he could. 

It sure makes those more "insignificant" milestones a whole lot bigger.  When he first said, "ba ba ba" I did tear up just a little.  I was on the phone with my dad and I am very thankful that he was able to hear it as well, or else I might not have believed it myself.  I had a goal of Simon sitting up on his own by Christmas time, and he was doing that and waving bye too!  These developments seem so small, but they are such accomplishments for the little man.  I met a mom at the Variety Heart clinic in Winnipeg when Simon was just a baby, and her little girl with Down Syndrome was crawling around on the floor with her sock in her mouth.  I had to take a moment to regain my compose when I was talking with her because I was thinking about how hard it was going to be for Simon to learn all the things that he would need to learn.  It is incredibly difficult to look at your innocent little boy and know that there are going to be some gigantic mountains that he will have to overcome in life as a whole.  Oh, how I wish I could pave the way for him and hold his hand forever until he learns to walk on his own.  But I know that doing that would slow him down even more.  He has to climb the mountain on his own.  He will have to learn to take steps by himself without me supporting him.  Watching him take on the world one person at a time is gut-wrenchingly painful and yet one of the best things about being Simon's mom.  I get to watch as he transforms a family that once knew nothing about challenges of the developmental variety.  I get to watch the way kids look at him and answer when they ask why his tongue sticks out.  Sometimes it hurts and sometimes the clinical coldness kicks in.  I am looking forward to the day in heaven when I can meet my son with his full capacity and together walk hand in hand toward our maker to worship forever.  To know him as he would be if we were born into a perfect world without genetic "glitches".  Oh, I hope that I have the patience to endure until that time comes. 

So about the ambulance...

So going back to last year.  Sometime around now was Easter.  Andrew and the kids and I decided to make the trek out to Winnipegosis to introduce Simon to the locals.  He had of course met my parents and his uncle and a few other people that had met him in the city and Brandon, but he hadn't met some other significant family members.  We figured that since I wasn't working, and my mom and dad were moving in the summer, it would be a good idea to spend the week following Easter at the homestead helping with what packing and sorting I could in between tube feedings and taking care of the kids. 

Simon had done really well over Easter, and since we had been to a feeding appointment recently I had been given some new liberty in the food department.  The idea was to challenge him and try to omit some tube feedings to see if he would make it up with real food.

So the thing that some of you may or may not know about me is that I am a bit of a control freak.  This problem increased exponentially when Simon was born.  There was so much more to this baby than just feeding, burping and changing.  I had to keep track of fluid intake to make sure that he didn't get dehydrated.  I had a day planner that I wrote all of these intakes in.  I had medicine measuring cups that I measured his food into so I could tabulate his score.  We were definitely not low maintenance.  Making the trip to Mom and Dad's took a lot of planning and we brought along a lot of extra items "just in case."  You know the standard - spare feeding tube (or 4), stethoscope, feeding bag, syringes, food, bottles, special feeding cup and spoon, breast milk, pump and equipment, and then regular things like diapers and clothes.  We kind of took over the house. 

About the challenge.  If he ate enough at a meal, or three, then we could take out the tube and let him have a break for a day.  We would see how that would go, and then put it back in when he needed it.  Well, he did really well on Good Friday and Saturday, but the thing was, he was so stuffed that he threw up.  It was kind of pathetic the way he did it though.  He just kept eating, and we kept distracting him to try to get more food into him.  Finally, when he could take it no longer he kind of gave me a look.  It was almost a sympathetic, "I know what you are trying to do Mom, but I just can't... "  Barf.  He was really good through it all though.  We kept the tube out for Saturday and he got to go to Easter Sunday without a tube up his nose that had prunes and meat all over the tape that kept it in place.  I could pretend for just a little while that Simon was more like a normal baby. 

You can see the difference.  I must put in a little plug for my photographer though.  The bottom picture was taken by my then three year old.  Not bad.

Anyway, sometime during the beginning of the week Simon started to get a bit sick.  It started with a little cough, congestion and then a fever.  I tried all the tricks.  Tylenol, raising the head of his bed, calling our nurse.  You know that it's time to go in when his fever is 104 and holding.  We went in to Dauphin, talked to an intern, who said it was a virus.  If it wasn't better in a couple of days to come back.  So, a couple of days later we rushed back with a very sick little man.  Bilateral aspiration pneumonia. 

Dad had driven me and Simon in, while Elizabeth stayed with Mom at home.  I sure am glad that I brought my pump along.  I was told that the ambulance would be there within the hour to take us to Winnipeg.  Umm.  But, what about my daughter?  She was still on the farm.  How would I get my clothes and everything else that we had brought?  Supper anyone?  I can't have dairy!  Arg. 

So, we made a few calls, Elizabeth stayed with Mom and Dad and Simon and I enjoyed a nice leisurely ride in the back of an ambulance to Winnipeg.  (I don't recommend ambulance travel unless it's the only way.  Not a nice ride.  Roomy enough, but very bumpy. 

We had some fun at children's hospital and came home to Winnipeg a couple of days later.  I sure was glad to get into my own bed again.  By the next Friday we had figured out a way to get Elizabeth back to Winnipeg without making my parents do an extra eight hour drive.  She sure enjoyed the ride with Audrey and Joel.  Thanks for hauling her around! 

So anyway, that is pretty much it for that part.  More to come someday soon.

One last thing, there is something that I would love to have permanently stamped on my baby's bottom:
I am my own person.  I will grow at my own pace.  I will do all things in my own time.  I love you Mom!

On that note, it's time for bed,
sweet dreams,
Sara

The good stuff

Okay, so I was all emotionally inspired after reading another blog, but I realize that I should also stick to the plans that I have made.  It's just that kind of day.  I did promise in my last post to inform about the joy I've expressed (among other things).

So about the news items.  It still make me giggle to think that I had several TV crews at my house, and one of them even took video footage of me pumping.   (Covered appropriately)

 It all started with Simon being allergic to Cow's milk protein. When we found that out, we had to make some radical changes.I had to completely cut out anything containing any type of cow's milk protein in my diet.  I was still pumping at the time, and that meant that anything that I ate would potentially be passed on in my milk to Simon.  This left us with a HUGE surplus of milk.  What was I supposed to do with several gallons of breast milk?  Any mother who has tried pumping for any length of time knows just how valuable this milk is.  We also ran into another awkward problem.  We ran out of freezer space.  Good grief, no room for food, too much milk.  This problem was solved by billeting my bags of milk to other freezers.  Andrew's cousin was kind enough to make room in the freezer for several grocery bags, as was someone from our small group. 

I guess our friend from Bible Study, was tired of having to listen to me complain about how to get rid of this perfectly good milk, or he was tired of moving milk around to find his cookies in the freezer.  Either way, he went online and posted an ad on Kijiji on my behalf, and used his e-mail as the contact point.  Thankfully he screened the creepy and rude people for me, and just forwarded the sincere and interesting inquiries. 

One of those interesting inquiries was from Global news.  One place I never thought I would be ten years ago.  On public television talking about breast milk.  After the first interview, I started to get better at talking in front of a camera.  I did an interview for Global, CBC radio, CBC news, French CBC, the Winnipeg Sun, and Steve Lampert (?)  

It was pretty interesting to be in the public eye.  After the first few interview I was a bit afraid to go out in public.  What if people recognized me and started pointing and calling me a freak?  I did actually get one person who had seen me on the news and complimented me on trying to help someone else out. 

My publicity has been met with varying opinions.  But, whatever.  Simon has taught me to have thicker skin, and that came in handy at this point in my life.  I had seen too many babies in the NICU who were preemies.  They needed milk, and sometimes there moms just couldn't produce it.  Why not give them a fighting chance by boosting their immune systems, and giving them something to drink that is easier to digest than formula?

If you are interested in the news reports, just google Sara Wiens - breastmilk.  The first five pages are decent, after that they get a bit shady. 

One more little snippet in my defense.  (I'm not on trial, why do I have to defend?)  To those people who think that I am freakish and gross and dangerous - if I were concerned about the safety of my breastmilk, why would I continue pumping for nine months!  I still can't believe that I pumped until July from October.  After finally giving away the milk that Simon couldn't use to a family that adopted, I did find out that he still could have used it.  He had an allergy appointment and after going back on cow's milk myself, we found out that he could tolerate what was coming through in my milk.  After giving away about 54 lbs of milk (or more)  I still had enough to last him beyond a year, with supplementing a little soy milk.

Really, if I had sold it for $8 an ounce, I would be rich.  Ridiculously rich.

Too bad I wasn't in it for the profit.

Until next time,
Sara 

Time to keep up

I have been trying to keep up with Simon.  It is incredibly difficult to catch up from a year ago, especially in the first year of a baby's life.  They grow so fast, and the develop their personalities before your very eyes.  The thing about Simon though, is that he doesn't.  A wise person once told me a story about another mother of a child with a disability.  This mother heard a woman say she wished that her children wouldn't grow up so fast.  The mother very adamantly advised her to never wish for that. 

To have a child grow up slowly is a blessing in some respects, but still a burden in others.  It makes if harder not to compare to children of a similar age.  To hear of a friend's baby who is a mere nine months and walking, and to celebrate that with her, meanwhile in the back of your mind trying to quiet the voice of the therapist that says that your child may be walking by next Easter.  It is a fine line between joy and jealousy. One that I have toed on many occasions.  Thankfully, I like to think that though jealousy may win out for a moment, I do try to take the high road most of the time.

I look back at some of my notes on Simon and I see a whole lot of appointments.  Sheesh!  It was a very crowded time for all of us.  Then it got even more crowded when we added solid food.  It still makes me shudder somewhat when I think of starting him on food at four months.  I am one of those people that does not tell that they are pregnant until 12 weeks, when the risk of miscarriage is over.  Ironically that still didn't help with my first miscarriage.  I firmly believe that unless a doctor advises it, an infant should not be started on solid food until six months.  I am very impressed with Dr. Rempel and her team.  She knew me well enough to lay all the cards on the table, knowing that unless she did so, I would balk at the idea of starting Simon so early on food.  When faced with the risk of allergies versus esophageal something, and septal deterioration, I decided food was a good option.  I knew enough big words to figure out that those were very bad things to have to deal with.  Which brings me to another random point.

There is a whole new language that I have had to learn.  (I am also trying to teach Elizabeth this language as well.)  It involves words like hypotonic, rectal prolapse, atrium ventricular septum defect.  There are some things that people just shouldn't have to know about.  It made me laugh, in a sad kind of way, to think that I might someday have to warn a babysitter, "If you see a part of his bum sticking out that wasn't there when you changed his diaper before, don't worry.  It should go back in on it's own." 

I was looking at pictures today of the time when Simon was born.  Elizabeth has grown up so much since then (as expected) and so has Simon.  He is almost a year and a half old.  I marvel at how he has changed our family and stretched us individually in so many ways.  What a blessing he has been to us.  I have come to realize that this new test that they are talking about will affect our world in a very negative way.  For those of you who don't know, there is a less invasive  test that may soon be available to determine whether or not a pregnant woman is carrying a child with Down Syndrome.  When I first heard about the test, I tried to make light of it and suggest that it would show who either had not taken the test or who still had morals.  Now as I think about it, I feel sick.  It would mean countless babies being aborted because their parents wouldn't be willing to have a flawed child.  It would mean less acceptance of people with Down Syndrome.  It would mean potentially that Down Syndrome would be almost eradicated.  The thought of losing this new dynamic that we have just blows me away.  I can't imagine how life would be if Simon were "normal".  When instead of having gone through all of the medical experiences that we have, our biggest concern would be lack of sleep.  (I do that to myself so that Simon doesn't have to pick up the slack.) 

I want to tell you all about how wonderful Simon is, and how he is growing and learning new things.  But I do have this perfectionist need to do so in a chronological fashion.  So, on that note, I will leave you with a teaser for next time.  What do you call a woman who spends nine months expressing herself, and then expressing herself some more?  Me.

One year ago...

This is going to be the gory post.  Anyone with a weak stomach might want to skip the pictures.  Sorry, I don't know how to make them optional.

Yesterday marked the one year anniversary of Simon's heart surgery.  I can hardly believe all that he has come through and where he has led us.  Ten years ago I never thought I would be anywhere near where I am today, and it is because of the people around me that I love that gently push me to try new things, and my kids that sometime leave me no choice but to do things that scare the daylights out of me. 

We ended last time with Simon being in the hospital and waiting to go to Edmonton.  In earlier posts I had mentioned the ten ticket ride.  The one that you know is scary because of how many tickets it takes to get on the ride in the first place.  Well, this was kind of cemented for me when we began our trek to Edmonton.  We were at the hospital very early in the morning to get our details together and be on time.  We hung out with Simon for a while, laughed with the nurses and just had a bit of fun.  All the while, in the back of my head and in the pit of my stomach there was this niggling nausea and trepidation.  It was the same kind of feeling I had when I was making the drive to Bethany for my first year.  Excited, but also very nervous.  Not exactly knowing what was going to happen, but knowing that there was someone looking out for me.  As I think about it, I can kind of get the same feeling again.  Interesting.  Anyway... we finally got our traveling nurse and headed down the elevator to the medi-van that would take us to the airport. 

Simon looked so funny in his tiny car seat on the big stretcher.  He was unfazed by a lot of the fuss.  So back to the roller coaster.  After we got off the elevator we began walking toward the doors and the van.  Our suitcase made the same type of sound on the tile floor that the roller coaster does when you are being cranked up to the top to begin the ride.  It was very eerie and also very fitting.  With that sound came a huge surge of adrenalin.  There was no reasonable way to get off the ride.  It was out of my hands, so I may as well have fun while we were on the ride.  Andrew on the other hand, was still very nervous.  He has always been a bit squeamish and wasn't looking forward to this at all.  So, I just let him be and did my best to enjoy the ride and make sure that Simon was comfortable. 

We took a life flight plane to Edmonton, and Simon did amazing on the flight.  He didn't cry at all and just looked around at all the shiny things.  

We got to Edmonton and got settled in.  The hospital was beautiful!  It looked like a mall.  There were skylight domes and walkways three stories up, and fish tanks, and a food court, and it was all very big and very new.  We felt like we were on a holiday.

After two full days of regular hospital life, which was full of pre-op tests, and x-rays we were finally getting ready for the big day.  We got the tour of the PICU where he would be after surgery, and were given the details of how things would happen and what order they would happen in.  We let them know that Andrew was queasy and they had a strategy for that too.  I enjoyed not being the one making decisions.  Everything was laid out for us.  We had a beautiful hotel room right across the street and internet access to keep people updated.  We had a food allowance and no Elizabeth to look after.  All we had to do was be at the right place at the right time and love Simon. 

We met up with my former pastor and his family.  They were a huge support for us.  They gave us rides to places, invited us for supper and spent time with us catching up and taking care of us. Thanks Don and Sharon for being willing to be with us.

We met the surgeon the day before surgery.  I remember looking at his hands and wondering how steady they would be as they opened up my son's heart and did some needle point in there.  When we asked him the stats on fatalities, I wished I didn't do math very well.  The odds of Simon having Down Syndrome were 1 in 800.  The chance of something happening on the operating table were 1 or 2 %  That means 1 in 100.  I didn't like those odds.  Think about something else Sara.  Whatever, it was out of my hands.  

The day of surgery we were at the hospital early for his sterile baths.  He had to have three antiseptic baths to kill bacteria that could be harmful during surgery.  He wasn't a huge fan of them, but that's the way life goes. 
We took him downstairs to meet the anesthesiologist.

That was my favorite part.  I handed him off to someone else who was more capable at taking care of him than I was.  That was the most free I had been since he was born.  There was absolutely nothing I could do but pray, and I knew there were a lot of people doing that as well.  I was officially off duty for at least four hours.  Simon was going to be better after the surgery.  Until then there was no point in worrying.  

So we went to West Edmonton Mall.  We ate lunch at the Old Spaghetti Factory, we watched the sea lion show, and we rode the bus back to the hospital.  We waited, and waited, and I was so glad that we had gone away for a while.  To sit there waiting for four our five or six hours would have been crazy.  We met a girl whose fiance had his arm badly injured in a work accident and he was in surgery as well.  It was great to have someone to wait with and pass the time.  Finally we saw the surgeon coming down the hall to talk to us.  He said everything went well and explained the details of what he had done and what things might have to watched later.  Then he left and we waited for Simon.

Finally we saw a bed coming down the hall.  There was so much medical equipment on and around it that it made Simon seem impossibly small.  It was pretty intense, but we were told that there was a lot of extra things because they were switching him from OR machines to ICU machines.  Things would get tidied up after a little while.

I am still very impressed with how they walked us through all of the contraptions in the ICU.  Because Andrew was squeamish they had Simon covered up with a sheet.  Then the nurse started at the top and explained what was all hooked up to what and for what reason, and as he talked he kept rolling the sheet farther down until we could see all of Simon.  Looking at the pictures now it does look pretty crazy, but at the time, all of the lines and wires made perfect sense and weren't the least bit intimidating. 

I noticed at one point while he was still on the ventilator that his tongue was moving rapidly up and down.  After a few moments I realized that even though he was highly sedated he was trying to suck on his tongue to self soothe.  Our bodies are very magnificent things that even when we are weak and wounded, we still try to preserve ourselves.  Way to look after yourself Simon!

I still think this picture below is pretty funny.  I tried to find a part of him that wasn't hooked up to anything, and realized only later that his foot has an iv in it.  Oops.  Guess an iv didn't seem like that big of a deal compared to the other major appliances that he had working for him. 

I had a hard time believing that only two days after open heart surgery I was able to hold my little boy again. 
We sure had a tangle of wires and tubes to keep clear of. 

Andrew and I had a couple of lunch dates with friends and family from Edmonton and then we were back to the grind of caring for Simon.  Two days after surgery he was sent back to a room on the ward.  He was off morphine and was only to be given tylenol if we thought he needed it.  48 hour and on tylenol.  Wow.  The smaller they are the faster they recover it seems. 


Finally on Friday, four days after surgery, Simon got to meet Grandma and Grandpa Wiens.  They flew to Calgary where Andrew's sister and her husband live, and then drove up together to Edmonton.  I thought Grandpa was going to pass out when he saw Simon, but alas, I don't think anyone had any weakness in the knees at all!  (I was a little bit disappointed)

There are many more tidbits that I will continue to add, but that is pretty much the gist of our surgery experience.  I would not like to ever do it again, but all in all it was a very positive experience with a lot of positive people. (Including my cousin Peter who crashed in our hotel room for a couple of nights while he was doing internship and fellowship interviews)

I'm sure I am forgetting something, but there's always tomorrow.
Until then,
Sara

Simon's first Christmas and then some

I have been trying to be committed to blogging about once a week, but as you can evidently see that has not been happening.  I have been doing better at adapting to our new life and therefore feel less of a "need" to blog to process our lives - but I still feel like the first year of Simon's life needs to  be shared in order to understand better where he is at now.  So.....

Last Christmas was a lot different that this year.  First of all Simon was still being tube fed.  I was still expressing myself for his benefit, and we were only three months in on the crazy journey.  I strung popcorn for the tree while watching a DVD about the first 18 months.  It was very helpful, and yet very overwhelming at the same time.  I was doing alright in watching it until I got to the part about speech and language.  One professional commented that if a baby with Down Syndrome doesn't nurse or bottle feed properly that will seriously hamper their oral development.  Crazy lady - do you know how hard I tried to do both of those things!!  I still get a bit lonely for the bonding between a baby and mom sometime.  Oh, and by the way lady- my boy says "Da da da" and "Ma ma ma", and "blah blah blah" although not always in that order. I digress.

We had Christmas dinner as a family, and then my parents and brother came in a couple of days later for the family gathering.  It was interesting having my extended family meet Simon for the first time.  At that point he was still tube feeding every three or four hours, so they got to experience that twice in the evening.  The first time being pretty much the moment we walked in the door and started assessing where to hand the feeding bag.  He was still pretty barfy too so that meant that I was still on call for most of the evening.  On the other hand, it also opened up a whole new dialogue between my aunts and uncles.  Simon had taught us not to hedge around the awkward things in life, and just to ask the questions about the obvious things that no one wanted to ask, but everyone wanted to know.  Thank you Simon for teaching us about the joy of being open and up front.

We went to supper at the Froese house a couple of days later, and Simon might enjoy knowing a bit later in life that his feeding bag was hung from a mounted buck's antlers.  I still can't believe how much time I spent expressing and tube feeding.  It was a huge blessing that Andrew was able to help with the feeding as much as he was.  I know he suffered a lot from lack of sleep too.

The fun began a few days before the Froese supper.  We found what no parent should find in their child's diaper.  Blood.  We made an adventurous trip to the hospital and were told that it was probably the virus that was going around and if it didn't clear up in a couple of days to come back.  Well, New Year's Day it came back, and that day Simon did not.  He was admitted to the hospital for observation which is pretty much what we were expecting.  What we weren't expecting was to be given the gears for wanting to go home and get some much needed sleep.  The bad thing about being and open minded person is that you can see both sides of issues.  Yes, the hospital is terribly understaffed, especially at night, and they were expecting our baby to be awake and crying most of the night.  What they didn't know was that at a mere two and a half months old our baby would sleep for approximately 10 hours solid.  We were frustrated when we left, but yet felt very little guilt.  I decided the next day to start staying at the hospital, so we again began the search for volunteers to look after Elizabeth and give rides to and from the hospital. My parents came in from out of town to help out while Andrew went to work.  After two or three days in the hospital I had a breakdown night.  When I arrived at the hospital in the evening Simon had a fever and was what I would call delirious.  He did not want to be held by me or put in his bed or anything.  This was completely unreasonable for our very laid back little man.  I called my nurse friend over from the general hospital, and she came and talked me down as I sobbed out my frustrations.  Janine, you were a lifesaver.  Thanks fore being there to interpret both me and the medical system.  We have always appreciated your words of wisdom.

I had a fitful sleep in the hospital room and I think I called Andrew to pick me up at four in the morning?  I don't remember.  Somehow, I was at home when the phone rang at 6 in the morning.  It was my Aunt calling for my Mom.  My Uncle had died suddenly of a heart attack.  He was a young and vibrant 63.  Then the phone rang again at 6:30.  Simon had been moved to the PICU because he had pneumonia and was having trouble keeping his oxygen levels up.  My mom had just called a nurse friend of hers the night before and had been told that as long as Simon stayed out the ICU we should not be too concerned. 

So we began the week of keeping our head above water.  My parents rushed home to pick up funeral clothes, and we put on a brave face.  The Olympic torch came through Winnipeg and we were late one morning for rounds in the PICU.  The doctor, with whom I had shocked (a little) with my black humor, gave us a good-natured ribbing for being late.  Apparently passing the torch was an acceptable excuse. 

Simon made it out of the PICU just before Uncle Tim's funeral.  The nurses gave us a grudging day off for the funeral, and a friend took Elizabeth for the day and her first co-ed sleep over.  The things I never thought would happen four months prior.  We still feel the loss of Uncle Tim.  He was my favorite uncle (sorry all the others) and he has a great family. 

We began the slow wait of figuring out what was wrong with Simon.  The blood in his stool was gone, but we had to figure out why it was there in the first place.  He was still having episodes of emesis (vomiting) and other than him not tolerating his secretions well (he couldn't handle his snot) we couldn't figure out what was wrong.  It was dragging on and dragging on.  He had a PICC line put in to give him TPN and his fluids were pretty much kept to a minimum.  (He had an IV put in that went near his heart, and it gave him IV nutrition.)
At this point we weren't holding our breath for him to come home anytime soon.  The question was always, how long would it take for us to be together as a family again?

At long last it was decided with the Edmonton team and the cardiologist and the  regular doctors that we should move his surgery date to an earlier time and see if we could get his ticker fixed, if that would solve the other issues as well.  If not, it would at least eliminate one problem.  So, it was decided.  We were going to fly to Edmonton on January 24 and he would hopefully have surgery on January 26.  There were a lot details to iron out, but with the valiant efforts of our variety social worker, we were finally getting there.

I will leave the surgery posting for another day, and be warned, I will include graphic medical pictures.  Just so you know.

Time goes on whether we like it or not.  Let's make the most of the time we have.  Goodnight.

The attitude....

I have always been terrible at introductory and closing paragraphs.  I beg your forgiveness for my butchering of perhaps both.  

After Simon was discharged from the hospital and we went home, I had to prepare myself for a whole different entrance to the world.  With a healthy baby, you are prepared for the smiles of people as they admire the new precious bundle.  When you take home a baby with a tube subtly taped to his cheek you are preparing for an entirely different set of smiles.  There are the smiles that say, "Oh what a cute baby.  I wonder what is wrong with him?"  The smiles that don't quite meet peoples eyes.  The people that don't meet your eyes after they catch a glimpse of the tube.  It was hard to be defined by a baby with a feeding tube. 

At the beginning I kept repeating to the nurses that unless you knew he had D.S. Simon didn't look like he had it.  It was partially a survival thing for me and partially and aesthetic thing.  I didn't want to be ashamed of Simon because of how he looked.  I wanted to be proud of my baby boy for overcoming the obstacles of eating and other people's stigmas.  At the beginning I wasn't ashamed of him for how he looked.  He didn't look different from the other babies in the NICU because he hadn't grown into his features.  I desperately clung to the fact that people couldn't tell.  I wasn't ashamed, just not ready to answer a million questions, or hear another million stories.

My attitude after we came home changed somewhat.  The new survival was to just get through.  Our first public outing was to a restaurant with Andrew's sister and brother-in-law, his cousins from Winnipeg and Saskatoon, and five lively little girls under the age of seven.  We went to the Old Spaghetti factory.  We were kind of tucked away from other people because we were such a large group.  At that time Simon had such a small amount to eat, that we only had to use a 30 ml syringe to feed him.  It was inconspicuous.  He was so little I didn't have to hold it very high to get it to drain properly, and he was asleep which helped a lot.  The feeding went off without a hitch.  No vomit, no tube being pulled out.  What a relief.  If people were glancing at our table they were distracted by the beautiful little girls.  It was a good wade in to public life. 

Just a side note:  It is such a blessing now, to be able to pack in the diaper bag a diaper or two, wipes, and a spare set of clothes.  No stethescope, no spare tubes and tape, lubricant, formula and milk, no booklet with emergency numbers just in case. 

Back to the attitude.  As time went on, we went out a little more.  Our second stop was at church on Sunday morning.  I told myself not to cry.  Over and over again I repeated it.  It didn't help.  When Vanessa announced from the stage that we were there for the first time that morning, I cried.  I stood there with Simon in my arms and my chin quivering like crazy.  I didn't look up because I knew I would lose it.  I cried because we were finally there.  I cried because I didn't want to cry.  I didn't want people to think that I was sad that Simon had D.S.  I wanted to be able to make a little speech to thank people and tell them how proud we were of our beautiful baby boy.  I wanted to tell them that I was sad because things were so different than I had expected them to be with a new baby.  I cried for the loss of what we had expected, not for what we were given. 

Andrew and I had a brief talk the other day about grief.  We talked about how we had felt at the beginning, because back then we didn't have time.  I ate, slept, fed and pumped.  That was all I had energy for.  In our talk about grief Andrew couldn't understand why I still felt grief now.  Simon is healthy, the major obstacles are over.  At least in Andrew's opinion.  Maybe I am a pessimist.  I am overjoyed that we only have to go back to the cardiologist once a year.  I am overjoyed that the tube will hopefully never have to go back up his nose.  I am overjoyed that he is doing so well in many things.  But in the back of my mind there is always the little thought that he may live with us for the rest of our lives.  Not a guarantee, but a possibility. There is the thought that kids may give him a really hard time in school.  Again only a possibility.  Will he be able to go to our camp?  Again a possibility.  With Elizabeth there are a lot more guarantees.  I hope she will get married.  She will move out (or we will kick her out eventually).  She will probably go to university or college and get a job.  She will get a driver's license and probably buy a car.  That is what is expected of people in life.  With Simon it is different.  Sure we will teach him to drive a car.  But he probably won't get a license.  There is a grief there.  Not a shame, just a loss of the things that are expected of people in life. 

Again I digress.  Back to the attitude.  After the church announcement our pastor came to us and prayed with us and the congregation.  He has a nephew with D.S. so he knew more than most people about what we were going through.  We really appreciated that.  To know that we weren't alone.  I hooked up with Sean's sister on the phone and had what was probably a very awkward conversation as I asked what now seem like ridiculous questions.  They were important to me at the time, but now I realize how dumb they were.  Thanks for being understanding Heidi.  Good grief Sara did you really ask if her son's tongue stuck out? 

Back again to the attitude.  (I will get to my point eventually.)  After church people came up to us to see Simon and talk to us.  People saw the tube, and ignored the tube.  Some bold people even asked politely about the tube. "Is that to help him breathe?"  See the thing about being polite, is that you try so hard not to step on toes, that you actually trip over your own feet in the process.  I had some very sarcastic responses in my head when people asked about the breathing tube, but to my credit I kept them in my head.  Be kind Sara they are learning.  The best question for me was from someone a little older than myself.  He walked up to us, took a look at Simon and said, "What's with the tube in his nose?"  Thank you!!!  He asked the question that people were thinking, and I was waiting to answer.  "It goes into his stomach to help him eat."  That simple!  What a relief to have that out in the open.  Why can't we all be like that.  Oh wait, because we aren't all in that frame of mind to hear such questions all the time.  Oh in the ideal world we would be.

To the point this time.  My friend Kristina and I took Simon with us when we went to a box store to pick up a few things that we needed.  We took Elizabeth with us, and Andrew stayed home.  Then my attitude as we walked into the store was one of daring.   I dared people to ask about the tube.  I dared people to stare  I dared people to notice that something was different about Simon.  No one did.  They commented on his car seat cover, (it is really cute) and they commented on Elizabeth, (she is really cute) or they didn't comment at all.  I was arrogant and nobody gave me the satisfaction of being the one to say something about my "intellectually challenged" son.  I was a little disappointed.  I had all kinds of answers ready for the first person to jump in.  No one jumped.  It gave me a little bit of grace for the human race.  Maybe we aren't all as stupid as I like to sometimes think.  The arrogance has faded over that past thirteen months and 26 days.  I have stopped challenging people with my body language.  I have become more confident with my son in public.  There is always a little bit of disappointment when we meet someone who is close to the same age as Simon and they are waving and walking and talking.  There will always be disappointment.  That is life.  I will always have expectations that won't be met.  I can't even meet my own expectations of myself , never mind my expectations of others. 

I think it is time to go and hug my son.  I hear him in the other room with his Daddy.  He is using vowel sounds and giving his warrior cry as he gets helped to his feet.  He loves to walk with someone to help him.  He loves people, and they love him.  How can you not love the big goofy grin that breaks over his face when he sees his Mommy.  There will always be attitude, there will always be disappointment, but as long as love is greater than those, life continues.