Monday, December 31, 2012

Goodbye 2012, Hello 2013

It was only 10 days into 2012 when the journey to bring our 2 daughters home started.  Now that we are getting comfortable in our home and settling in with our new family reality we can look forward to the future and what 2013 will bring.

For the twins, we hope to see increased health, with lots of catch-up growth, physically, emotionally and developmentaly.

For Toan, we hope to see him become more secure and able to fall asleep on his own and without fear.  We are looking forward to see what his personality will grow into.  He will turn 3 in  June.  He is a joyful and charming little boy.

For Logan, we hope to see him happy in school and more confident when he has to spend some time away from mommy.  He has conquered most of his stutter in the last year and he is very good inn  French now.  He will turn 5 in August.  Logan is a very loving little man.

Liam, who will turn 5 in May, has also conquered a speech problem in the last year.  He will be starting school full time with Logan in September and we know he will do very well.  Liam is mommy's little blond guy.

Noah will turn 7 in April.  He is a very gentle and caring little boy who has a lot of compassion for others.  We hope Noah's dream comes true: Noah wants everyone in the world to be happy.

Grace will turn 10 in September.  She wears her name very well and puts it in practice during ballet lessons.  She loves having 2 real life dolls she can play with.  It's funny how a 19 months old girl is welcome in her room, and a two and a half years old boy is not.  We wish to see Grace overcome some of her shyness: there is some hope since mom used to be like her.........................................

Fiona will turn 12 in October.  A big year of transition between elementary school and highschool.  Lots of changes happening, a beautiful young girl blossoming.  A karate blue belt, who will continue to work on her passion, towards the next accomplishment, brown belt.  We wish for Fiona to be proud of who she is, on a daily basis.

And for our oldest, our Rose who will turn 13 in June.  Our trail blazer who seems to have to do everything first.  A student council representative this year in grade 7, a book worm, a walking encyclopedia.  A young girl proud of who she is, who will go very far.  We wish for Rose to continue onnher path and keep growing in wisdom.

Michael will probably change unit this year.  He wants to keep working on his French and hopes to beat his PB for another half-marathon.

Johanne wants to stay healthy so she can see 100 years old.  She hopes 2013 will be the year for her 1st marathon: she will do her best to avoid being hit by a car this year.

For the whole family, for all the Alagille angels out there, we are hoping for a cure.

For all the orphans left behind, we are hoping for prospective parents to open their hearts to the reality of special needs children. 

For Michael's and Johanne's parents, a year of serenity and health.

For all of our supporters, thank you, we could not do it without you.  A very happy new year to all.

For those who doubt us, just watch and stay tuned, because we are unbreakable.


The Wagner Clan xxx

Saturday, December 29, 2012

Back Home

Sorry we have not given any update in a while, but a lot has changed since our last post.  We were released from the hospital on Friday December 21 with our IV poles, our NG tubes, our load of medicines and vitamins, and we headed home.  It is surprising how well the twins have adapted to everything.  It is like we have always had an IV pole in our kitchen or in our bedroom.  It is amazing how fast it became normal.  Christmas was wonderful and Santa was good to everyone.  The girls seemed to be in awe with what was going on around them.  The dietician and home nurse visits have been reassuring and it's wonderful to see the puffing up.  We have achieved double chins, big cheeks and a bum line.  Oh, and thighs as well!

The rest of the family seems to be quite content with the new additions finally living under the same roof.  Johanne and I are trying to get back to our running routine, which will come.  Johanne declares that 2013 is the marathon year.  Her training leading to it officially starts at the end of January.

The girls will have their first ''public outing'' on January 1st for the Resolution Run here in Kingston.  We will bring our IV pole and our pumps as it will take place over lunch hour: we need to take a dive at some point and leave the comfort of home.  

The internet being full of useful info, we were lucky to find a support group for Alagille kids and their families.  It feels great to know you are not alone out there and that there are others who fully understand what you are going through.  As mentioned before, we have been surrounded by wonderful people through this all so far: a faithful friend who kept bringing coffee to Michael in the morning at the hospital and keep him company, and also did so much more for us, Michael's sister who sent us ready made meals to fill our freezer, my friend MJ who donated one week of her time to come over and help us out, my friend Véro in Ottawa who managed, via her babywearing group, to do something amazing for us (you can read about it here and here), the MFRC here in Kingston who is ready to help out, Michael's coworkers who gathered some money to make things easier for us, all the people who have sent clothing our way, or gifts for the twins or the older siblings, and so many others who have offered kind words and support to us.  We also owe a lot to the wonderful docs and nurses who work on KIDD 10 at KGH: they are dedicated and loving people, who really care.

It would be easy to fall into the trap of focusing on those who do not understand what we are doing.  We are strong, we are untouchable as a family.  If you try to break a single pencil, you most likely will succeed.  However, tie together 11 pencils and try to break them: you will definitely have a harder time.

Saturday, December 15, 2012

Diagnosis In

We received the preliminary results yesterday from the liver biopsy: Alagille Syndrome.  There.  Now we know who the enemy to fight is.  Those results will be confirmed when the genetic testing findings come back.  We still don't know how much damage the livers have suffered.  The gastroenterologist seems pretty confident since the liver functions are still good.

Now.  What to do.  First thing is to work on nutrition.  The girls are both on bolus feedings at meal times now and continuous feedings for 9 hours overnight.  All that through NG tube with the pumps.  Phuoc will have her swallow test on Monday, so hopefully, we will be able to give her some solids at meal times after that without worrying that food will end up in the lungs.  Binh still receives solids at meal times since she has no issue with swallowing.

Vitamins are a big part of the nutrition plan.  Results still show undetectable levels of vit D which shows nothing is absorbed on that front.  They are supplemented heavily with vit A, E, K, D and calcium.  They also started another type of vit D, the semi activated form, which does not need the input of the liver as much.

With Alagille comes the problem of bile not exiting the liver, which explains the jaundice.  A med has been started to help release the bile from the liver to help absorb the fat ingested.  Jaundice might clear up as well eventually.

A consultation at CHEO is in the cards in the next 3 months to go meet a liver specialist.  Depending on the damage in the liver, a transplant might or might not be necessary down the road.  Our options then would be Toronto or Montreal.  But we are far from the transplant road right now.

From what I understand, and this will be a long learning journey, Alagille Syndrome is there to stay but can be managed.  We are lucky in our bad luck as a diagnosis of biliary atresia would have been far worse.

Our equipment will be delivered at the hospital on Monday so we can get acquainted with it all before discharge sometimes next week.

The girls are about 6 pounds away from the 0.1 percentile for their age.  Lots of catching up to do.

Thursday, December 13, 2012

Biopsies: check!

Quick note to let you know that girls ''performed'' very well yesterday, like two old pros: no bleeding, no complications.  Binh went first (of course, she has to show the example as she is the oldest one) and Phuoc followed 3 hours later.  Liver biopsy, skin biopsy and MRI done for both.  Results hopefully tomorrow with a diagnosis to explain their liver condition.

Thank you all for your support.
Phuoc pre surgery.

Meeting in the hallway, Binh coming out, Phuoc going in.

Binh pre surgery.

Wednesday, December 12, 2012

Article as Promised

Originally Published in A Quarterly News Letter on 3 Oct 2011
Michael Wagner wrote:

In recent months, I have become very upset at what I have read on various international adoption forums, on how disappointed some parents seem to be with their newly adopted children. In some cases, it was similar to reading a review on a new purchase and it gave the impression that if they could return their child, they would, because it was not performing as it was supposed to. These comments have angered me and spurred me to write this article.

When I became a father for the first time I was full of expectations of what my life would be like and was quite certain my life would be pretty much the same, with only the addition of another human living in the house. I can tell you I was so wrong and I completely underestimated how my life would change. Since that beautiful moment where my first daughter turned my life upside down I have never been happier. This feeling has only grown more powerful with all five of my children given to me by my wife and the two beautiful children who traveled a much different road and were given to me by the gift of international adoption. And yes, I loved how each one has upset my routine and forced me to change.

So what should we expect from an adopted child? The thoughts shared here are based on the collective experience of my wife and I, two people who have welcomed children via C-section, midwifery hospital birth, midwifery birthing centre, two home births, and two international adoptions with one who had initially been designated as special needs but thanks to life , is in the end very healthy. Our different experiences have led us to the conclusion that all of our children basically have the same need for security, comfort, love and reassurance. However, we realized that those who might have had a more traumatic birth experience, or less peaceful if you want, and those who have experienced abandonment shortly after birth might have a more acute need for those requirements to be fulfilled. So let’s start!

Abandonment. Never underestimate the damage caused to a child’s emotional health from being abandoned by the woman who has given life to him or her. This single act will define these children’s lives and how they interact with everyone regardless of how old they were when they were abandoned or how long they lived in an institutional environment. So expect a child who has attachment issues. So what does this mean to the new parent? Your child may seem to be quiet, detached, and distant. Or on the contrary, your child might turn out to be very clingy. It might take a while for him to trust you, to trust that you will not leave him behind. It is to expect: try to imagine for one moment what it could be like. Imagine losing everything you know to never find it again: the heartbeat you heard for nine months, the voice you heard for nine months, her smell… Just remember the first time you lost sight of your parents in a crowd and how terrified you were for those brief minutes until they found you.
Fear is a powerful emotion that causes humans to either rise to the occasion and complete tasks which seem impossible or causes them to fall into a ball and become paralyzed. When you first meet your new child, he or she is very afraid. You speak a different language, you look and smell different. You remove them from the only environment they know and take them first to a hotel and then to a whole new world. This fear causes many different reactions. Think back to the last time you were afraid and remove the ability to communicate: then think of how you might act.

Institutionalization. Your new little wonder has spent most of his or her short life in an institution. Regardless of the different standards of the orphanages, they all have a few things in common with most North American publicly funded institutions. They are over-crowded, underfunded, noisy, and lack any sort of privacy by our own standards. They try to turn children into predictable machines because it is just easier. Any amount of time in an institution has an impact on children. We remove them from an orphanage to take them to a quiet hotel room with one or two strangers. This again has an impact on how they interact with their new parents.

Expectations. So you now have waited years for your child to arrive. You have the room set up, your family and friends expect to see your perfect bundle of joy you are about to bring home. This will be wonderful, like a fairy tale! You are full of emotions as you arrive in your child’s home land, you meet him or her for the first time and then the reality hits! You realize the child might not be as perfect as you had anticipated (by our society’s standards of course!): looking sick, thin, avoiding eye contact, sleeping a lot, crying a lot, not eating, not pooping, not looking right! This reaction continues as you travel 24 to 30 hours and arrive in North America. What a shock! We must remember we can’t impose any expectations on these children. And the same goes for biological children. Nobody is perfect.

Unfortunately, many adopted children arrive to big expectations : they have to be cute, proper, sleep through the night and so on. Let’s again remember what they have been through. Try for a moment to place yourself in your child’s mind and think back when you have felt any of these emotions. This is when the adult has to step up. Like my mom has always said, ‘it’s time to put on your big boy pants on and act with compassion’. And above all, remember that your child does not wake up in the morning with the intention of ruining your day. Regardless of what medical or physical symptoms or condition your new child may have, the one thing I can guarantee is that if you let yourself go and embrace the whole being, you will see that your child is there for a reason. Everyone comes with a special mission. Your child will help you become a better person, a less selfish individual.   
This should not stop you from making the best of your adventure; embrace it because being a parent is the best most rewarding job on the planet. Follow your instinct, trust your gut and just go with it. All your expectations will be met in good time.
In closing, I want to thank life for my best ally, my wife Johanne, and our seven wonders, Rose, Fiona, Grace, Noah, Liam, Logan and Toan. You are my inspiration.

Michael Wagner

Tuesday, December 11, 2012

What's Next?

They say when it rains it pours.  On Monday night I was home with the kids hoping for a nice evening reading stories and just hanging out.  I was just wrapping up a good hair wash on Liam, and I heard a loud ''bang'', just the sound cause I did not see anything.  I walked to our room to ask Toan to come and brush his teeth and I found Rose starting first aid with Noah.
Toan was lying on the floor like a snow angel with blood coming out of his mouth.  Well with Rose’s help we put a bandage on his mouth and I headed off to the emergency room while Johanne was with the twins at the other hospital, and Rose took care of the home front.  Yes, three out of nine children at the hospital at the same time.  Well after 2 hours, 2 stitches and one popsicle Toan and I went to see Mom because Toan needed a hug.  By the time I came back home, our amazing neighbours had relieved Rose at home.  By the time I made it out of the emergency room it started freezing rain and Johanne was uncomfortable with driving home so I did.  Johanne slept at the hospital and I slept at home for the first time in weeks.  That was pretty cool.  Just when I was ready to ask why this is happening to us, I was reminded that I do not have it all that bad.  There is an aboriginal family from northern Ontario with their son who has leukemia and they are now looking for some place to live while he receives his treatment.  Imagine moving to a new city, new culture away from all of your support network.   So in the spirit of the season I am asking anyone reading this while out shopping to buy a gift or a card and send or bring it to me: I will gather them all together and we all can be that family's secret Santa.  As they say it is better to give than receive.  I know they do not have much and they will be here until March. At least I am 15 min from home and I have a lot of friends around me to help out.  Also I found out that there is a teenage boy on this floor who for some reason has no one visiting him.  I walk by his room many times during the day and the only contact he has is the TV and the nurses.  By the tubes and machines I can see, he is sick.  Imagine being in your early teens facing something like that alone.  At least I have my girls with me here and they have me.  

On to the girls.  Tomorrow is the big day as they both will have a skin and liver biopsy and a MRI.  Johanne and I hope this is the first step in going home with a plan for the future.  It is scary to think they are going into surgery.  Toan did it twice but it is still scary.  To say the least I am worried and I hope everything works out.  As soon as they are out of
surgery and back in the room I will put a post up.

I am also preparing to go home with the girls.  We are going to need a spot for their medical supplies, a place to hang the feeding bags.  I need to get a letter to the city allowing me extra garbage bags (Kingston has a one bag limit regardless of your family size).  These girls produce a lot of garbage and most of it you would not want to see in the recycle bin.  Also, back-up has arrived in the form of Marie- Josée.  She will help us take care of things so Johanne and I can get ahead a bit and prep for the next 3 months: build a bit of reserve in the freezer of food and get the basics done, at least get ready for Christmas.

Again this post takes another direction.  Johanne was talking to friends of ours yesterday and the topic of parents shopping for the perfect child came up.  It seems like some potential adoptive parent are being very selective...    Let's all remember that the perfect child does not exist.  I am not saying people should take on what Johanne and I are into, you actually have to be somewhat crazy and off balanced to do that...  But potential adoptive parents I think should take the approach that they are not choosing their child, that the child has always been their child and that they just needed to travel another path which will only be made clear in time.  So I will be posting soon an article I wrote which
has been picked up by small newsletters and local papers.  

We will keep you posted following the biopsy tomorrow.

Monday, December 10, 2012

A Few Pictures

All 11 of us

We are so small, we fit side by side in a single stroller!

Poor Sage Phuoc ''having supper''

Does my sister's hair provide any calories?

Five weeks ago in Vietnam, already a change!

Thursday, December 6, 2012

Finding a New Normal

Ever since the girls have been back in hospital last Thursday, Johanne and I have been looking for a sense of what is ''normal'' or at least a ''new normal''.  This new normal must take into account that the girls may be in hospital for the next little while, which may include
Christmas.  We were trying to do it all.  To put in a military term, we were trying to fight a three front battle all on our own: the home front looking after the children at home, my work, and the hospital.  I would like to say we were doing a good job but we were not.  I was at work and a very smart Padre came to me after a meeting to talk and he made me see that I needed to take some compassionate leave from work and stop trying to be a super hero.  I have to admit I was under a great deal of stress because I realized I was doing a bad job fighting the three front battle.  So I did it,  I requested it and was granted compassionate leave.  This added to my Christmas leave will allow me to focus on my main priority, my family.

With all the bad that comes with being in the Army, we have it really good and we do look after each other.  I am so glad the Padre and some other very close friends came to me to help me work through my issues.   Deep down inside I knew I needed to do this but it is hard to see the problem clearly when you are up to your neck in it.  This being said, this leave was needed and the stress level has come down a lot.  Now Johanne and I can divide our time between the house and the hospital.  This will give us the ability to find our new normal.  Our children through all of this have been outstanding.  But they also were starting to feel the stress, always being asked to rush as soon as they got off the bus so Johanne and I could
rush to the hospital or to work or just get the laundry done.  They never complained but they need to be allowed to have a life without the rush and worry every single day.

Going on a week back in the hospital and the girls are doing better, but still no diagnosis.    Johanne and are learning how to work with the NG feeding tube and the pumps and it is not that bad.  In some ways it will make our life easier as the tube gives a ''no fuss'' way to give medication, and we are guaranteed the girls will ingest enough calories.  The girls do not mind it much, however, Sage Phuoc has pulled hers out a couple of times and I pulled Iris Binh's out once by accident.  The girls still have blood work to see how they are doing and still have a cold which is not going away.  We are having the liver and skin biopsies next
Wednesday.  The medical team is currently debating if the procedure will also include an MRI.  The girls are gaining weight slowly, with days up and days down.  As long as the overall week represents a weight gain of no less than 30g per day, we are doing good.  They have more energy and they love to play on the floor.  They have also become little stars of the floor with lots of the staff stopping by just to play with them.  We love those visits from everyone!  The personel at KGH is fan-tas-tic!

For all of you who are praying for us please keep it going.  We do feel it and it is making a difference to us.  To all of you who have sent gifts, or sent meals, or who have helped us out in any way, we cannot express our thanks to you.  It all has helped in a great way.  I know in my heart that these girls did not wait for us for 18 months and traveled around the world for nothing and we will all live under the same roof once again.  If we have to have our Christmas in the hospital, we will as a family and we will do it up as the Wagner family can, because our team is still strong, supported by all the people who love us.

Saturday, December 1, 2012

Running on Hope and Coffee

Back in the hospital we are.  Regardless of our best efforts, the girls were losing weight.  The cold they have had is back and may have moved to the lungs.  Let me tell you this is hard to take.  We thought we had it right but it is very disappointing to realize that it is beyond our control.  Both Johanne  and  I are having difficulty with this situation.  This being said, I would not turn back time and I would walk the same road again.   It is hard not to become depressed and lost in your own emotions.  Not to sound like some super hero but we can't afford to do this.  We need to focus.  We made this beautiful mess and it is our fault we are here so we must carry-on, which we are doing with a lot of help from some very strong family and friends who are doing what they can and chose not to judge us.  If there are any heroes, they  are our other seven children who are doing everything in their power to maintain a normal life and support mommy and daddy.  They are each very strong,  and we  get a lot of energy from each one of them.

The girls are hooked on NG feeding tubes and the pumps are on overnight for 800 ml of Peptamen.  Those pumps will become 2 more pieces of furniture in our home when they come out of the hospital.  There are talks of moving up the liver biopsy and we will request that g-tubes be installed while they are under surgery.  G-tubes are permanent but reversible.  Unlike NG tubes, they do not need to be taped to their face and changed every 9 days.  We are asked to try to make them each drink 3 x 125 ml of Peptamen orally during the daytime while continuing the purees at meals.  The girls are pretty much refusing to eat: thrush or sore throat because the cause?  Unfortunately, they do not speak...

Johanne does the day shifts while I cover the night shifts.  We need to figure ourselves out for next week as far as the 3 younger boys go.  The idea is that Johanne spends the days at the hospital so I can still continue to work without taking additional leave.  We need to put them somewhere...!  Spending the whole time at the hospital would be too much for them.

We need to be trained with the pumps for the night feedings and we need to make sure our generator is up and ready to run.

So this is it for now, hopefully we will get more answers once the work week resumes on Monday morning for everyone on the floor.