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.

Love,

The Wagner Clan xxx

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.

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.

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.

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

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.

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!

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.

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.

Going From Home Back to Hospital

This is a very short post to let you know that the girls are being readmitted into hospital as they have pretty much lost the weight they had managed to gain.  Even with totals of 1100 calories per day...  A clear indication to me that the problem is malabsorption, not the calorie intake.

Phuoc is very lethargic and refuses to eat and drink as her mouth is still full of thrush.  Binh is battling a bad ear infection, and therefore, refuses to eat and drink as well.

Will keep you posted as soon as we hear what the medical team intents to do.  They have talked about nasogastric feedings.

From Hospital to Home

Finally, all 11 of us under the same roof.  It happened last Friday, the twins were discharged from the hospital after an 11 days stay.  A lot of investigation, a lot of care provided by a fantastic team of caregivers, angels.  Still, no firm diagnosis.  They will be readmitted on Dec 10 for a week and will undergo a liver biopsy.

It has been a bliss as everyone is settling in in such a nice way.  Seven older sibs were thrilled to welcome their baby sisters and the twins are delighted by all the action around them: lots of smiling, cooing, rolling over, grabbing toys, the difference is incredible.  Food and calorie intake is a big source of stress for Michael and I: we so much want them to gain weight.  Unfortunately, we found out on Monday, when we went back to the hospital for blood tests, that both of them had lost about 200 g since discharge.  I have a feeling weight will be our battle with our little darlings.

Michael is becoming quite the expert though at making super fatty soups for them.  His record to date: 3000 some odd calories for 10 cups of soup.  His secret?  Coconut oil (full of MCT), cream cheese, cream, butter, combined with very nice veggies and beef or chicken broth.  6% fat content yogurt is also becoming a staple for the girls.

We are in the process of settling with the insurance to pay for their Peptamen, calcium and vit D.  Peptamen costs close to $500 for a 9 days supply and calcium represents $7 per day.  It goes up fast...  It looks like the provincial government will provide us with assistance which is great.

The girls are very easy to care for.  They love being on the floor, surrounded with toys and with the ongoing action of the house.  We are happy that they are doing better.  However, we still have our moments where we find it very much overwhelming.  We are trying to bring back a new normal to this house.  Michael and I truly love these girls, and the rest of the family feels the same.  We are eager to get a firm diagnosis.  We are suspended and are unable to truly move forward until we have this diagnosis.  We believe once we have this, we can have a plan to get these girls in a much healthier state.  What is interesting is that while we are suspended, we must keep moving forward, planning for events like the Holidays and balance the needs of these two little girls with our other seven children.

Michael has gone back to work and I found myself having to face my fears of being alone with them: what is they refuse to eat?  What is I can't get them to take their medication?  Will they keep losing weight?  I must get myself out of my ''spirales'' and concentrate on the positive: I have them with me, those two treasures we waited for for so long.  I can't kiss them enough and I can't tell them enough that I will always be there for them, my two little fragile fighters.

Last Night in Hospital?

It looks like the girls will be discharged from the hospital tomorrow to come home to their forever family.  They have seen all the specialists they needed to see for now: endocrinologist, geneticist, gastroenterologist, nutritionist, nephrologist, cardiac surgeon, ophtalmologist, and I probably am missing someone.

Conclusion: we still don't know, but Alagille Syndrome is in the lead.  They will be readmitted for a week early December to undergo a liver biopsy, here in Kingston.

Our goal at home is to establish a routine with the meds and the feedings, while providing for them as much stimulation as possible.  The girls have an 18 months old brain trapped in a 6 months old body.  Their bone density is the same as a 6 months old baby, and their bones are very thin.  They are on a regimen of high dosage of vit D and calcium and the endocrinologist assured us that the rickets will completely disappear with time.  We were warned that we could see quite a growth spurt within 3 to 6 months.  He also mentioned he is not convinced that they have Alagille.  He thinks the shape of their forehead could be caused by the rickets and that their liver condition could be caused by something else.  Well the liver biopsy will tell us for sure.

We spent the day getting ready for discharge, with many meetings with the medical team and the social workers.  Kingston General Hospital has been absolutely fantastic for the girls and us, and they wish to continue to help us manage the girls' health care locally as much as possible to minimize the impact on the rest of the family.  We already have a couple appointments scheduled, starting Monday morning for blood tests.

We are anxious to create our bubble, all 11 of us, under the same roof.  Michael is my eternal positive one, but it was great today to hear him tell me about his concerns, which turn out to be similar to mine.  Will we be able to keep the weight gain going?  That is our biggest worry.  Michael started to count their calories today and it reassured us.  The girls consume between 1200 and 1500 cal per day.  How much of that is absorbed?  That is the big question.  They need to consume food containing MCT oil, as it is pretty much the only fat they can absorb.  They love yogurt, but when they eat it, their stools turn mucousy: that kind of fat is not absorbed by their bodies.  A great source of MCT is coconut oil, and we are told that you can replace any fat with coconut oil.

We are getting more smiles, more cooing, and they are spending more time on their tummies, which by the way, has slightly decreased in size.  Toan, their 2 year old brother, loves playing with them and will provide a lot of physiotherapy....!

So homecoming tomorrow, if everything goes well.

Video Twins in Hospital

One Week and Counting

Thank you all for your thoughts and prayers and please keep them coming because all that positive energy is helping our little girls getting better.   The girls are starting to show major signs of improvement.  We are out of isolation which is great because now I can leave the room to find food and more importantly, coffee.  The girls are eating and drinking
well and are responding to treatment.  It may be just me but they are looking a little less yellow today.    Iris Binh has gained 7 oz in 5 days, and Sage Phuoc has gained 10 oz.  I am trying to build a routine with the girls with the drinking, eating, and sleeping.   Again, sad to say, but the girls do well in an institutional environment, as this is what they are used to.  So one week completed in hospital and we are starting week two.  We will have a few more tests this week, more blood work, more ultra sounds, and more visits from specialists to take a look at our little wonders.  We also may start a new diet routine with special milk to
help them gain weight faster.  The doctors have not come up yet with what is wrong with the girls.    We have two leading theories: malnourishment with vitamin D deficiency causing issues with the liver, or Alagille Syndrome.  Both are treatable with medications and the girls are able to live a long happy life.  The test this week will confirm which one it is but
it could take months to get a final diagnosis.  They have started treatment already with massive doses of vit D and will continue next week.  As far as liver biopsy goes and bone marrow, it will most likely wait for now as we need the girls to gain weight.   I am
encouraged with the girls' progress to date and I am very sure they are going to have a very long and happy life.  Keep the prayers and positive thoughts coming this way so the girls and I can return home.  Thank you for everyone who has come by to see me, it makes the days go by a little faster.

Johanne is keeping the fort with the other 7 wonders at home, and she comes to see the girls and I every day.  She is trying to keep a sense of normalcy for everyone.  Santa parade was in the plans last night and the Holiday tree went up today.

We are looking forward to a normal life, all 11 of us, under the same roof, knowing that everyone will be fine.

Michael

From Hotel to Hospital

We departed HCMC Saturday morning for the long trip home.  It is so easy flying with little angels.  We arrived early to the airport so we could ensure we had the seats with the bassinet, a necessity with twins.  One of the customer service representatives from EVA Airways moved us from the economy check-in line to the first class line and made sure we were taken care of from HCMC to Toronto.   Once checked in, we moved to the security line where everyone in line let us move right to the front.  Once through, a lady from the Vietnamese authorities ensured we had no issues departing Vietnam.  At the gate, the
girls created a sea as people gathered around them to watch them play.  Most questions and inquiries were about their health.  I guess most people saw what Johanne and I saw in these little angels, big hearts willing to fight for their lives.  The first leg of the flight went very well.  The girls did not mind the take-off or the landing.  Once in Taipei,  the outstanding service
from EVA Airways continued.  They met us as we departed and again ensured we had the good seats and a bassinet.  The girls traveled so well and slept most of the flight.  Again, we ran into very helpful people and the Canadian customs lady ensured we were processed quickly so we could continue our journey home.  A precious friend met us in Toronto and rented a van to make the ride home comfortable.  The van ride home again went very very well.  We made it home around 2 am and then the kids woke up one by one, and each child eagerly came to greet their new sisters.  We opened all the presents we brought home, it was like Christmas in November.  Then we went to bed.  Sunday was a slow day, we just hung out as a family and had some good friends come by to meet the girls.  Johanne and I realized how much we had missed the kids and how much they missed us.  We can never both go away.  The children were well looked after but as a family, both parents cannot leave at the same time as it does not work for our family situation.
Monday the children went to school and Johanne and I settled back into our home.  Tuesday started off with getting the kids to school, the dog running away and Johanne, the girls, Toan and I departing the house to get the health cards and to get to the hospital to get the girls checked out.  We made it to service Ontario first thing in the morning with the dog running
lose in the neighbourhood.  Again, the girls’ charms enabled us to cut the line and see the representative immediately, and within 30 minutes we had a health card number.
We immediately went to the children urgent care clinic in Kingston to get our little girls checked out.  They took one look at the girls and they were admitted to KGH to have comprehensive testing done to see what is wrong with the liver.
After two full days in the hospital, we know what we seemed to already have known, with a couple of exceptions.  The girls have a problem with the liver.  What type of liver problem, we still do not know.  The girls are malnourished.  We are not sure if it is because of the unknown liver issues, or something else.  I do know they like to super formula they are on and they drink it non-stop and I mean non-stop.  They started with 60 ml bottle every hour for the first 24 hours.  I guess they needed it.
They tested the bone density to confirm the girls' ages which is between 15 to 18 months.  They girls have thrush in their mouths which may be one of the reasons the girls find it difficult to eat as it hurts.  Other than that, they are having every other test to find out what is wrong with the liver.  At this point the doctors are eliminating conditions or diseases one by one.  The girls will have a liver biopsy next week and they may also need to take bone marrow.  They will also be genetically tested.  There is a dietitian looking at what the girls are consuming to make sure they are getting everything they need.  
What I know is the girls are in the right place.  They are sick, they need help, and they seem to be doing a little better now that they are drinking more.  I cannot wait to get them back home again and I hope we can have a game plan for their treatment soon.
I know I said this before.  I am not sure where we are going on this road and I still do not know where we will all end up.  But I do know I have a lot of back up as we take the journey.

Michael

Quick Update

Hello all and so sorry for not posting but it is kind of hectic around here.  My dear husband is working on a proper blog post but I am taking a few minutes to let you know that the girls were admitted in hospital 2 days after our arrival.  They are being investigated from head to toe.  My husband is with them 24 hours a day and I am taking care of the other 7 children and the house.  I go visit one or twice a day with some siblings.
There started to refuse eating on Monday and not doing so great.  Tuesday morning, we went to get their health card number and went to the hospital where we discovered they had lost weight.  The doctors were quick to admit them.
First diagnosis that came back is rickets.  Eyes were checked and Sage Phuoc will need surgery for a lazy eye eventually, other than that, vision is good.  They both have a narrowing of the artery going from the heart to the lungs, stent procedure maybe in the future.
Liver wise, the doctors are stumped.  There is good communication between the gall bladder and the liver and the liver looks somewhat like it is still functioning properly.  Alagille Syndrome is what the medical team is trying to refute or confirm right now.  Also a wack of other rare liver diseases.  Hepatitis results have not come back yet.
Michael is a rock, my rock.  He is doing what I could not be doing.  He has this ability to compartiment himself I don't have.  My place is here with the other kids and taking care of the finances.  We are so fortunate to have Michael's work environment showing so much support!  One padre came by the house on Tuesday and pretty much picked me up with a little spoon.  I don't believe in much, I have lost faith over the years.  But he had the right words to comfort my children and myself.
Children are off today and I will try to give them a sense of normalcy.  We will go see our little sisters this morning and then go do some shopping.
People in Kingston, we are at KGH floor 10 and Michael likes a good double-double.  Just say you are there to visit the Vietnamese twin girls.  Michael is trying to use the aid of the volunteers to go out for some walks but it is not always easy.  If you have it in you, I am sure he would appreciate.  There.  I asked for help.
I have a nervous wreck, panic attacks rising every once in a while, but a good cry helps.  I need to believe we did the right thing.  I know I can get very heavy with my emotions.  Thank God I have Michael.

Last Day + Donation

Transplanting

We have all the passports, all the paperwork has been finalized and all the travel details have been set.  This morning, Johanne went to the orphanage to bring everything we purchased with donations from friends and coworkers.  The orphanage director and the nannies were very grateful.  You would not believe how much more you get for your money in Vietnam!  The cab was full.  I stayed behind with the girls at the hotel as we did not want to confuse them by bringing them back to the orphanage.  This afternoon was spent shopping for fun things and Vietnamese outfits for the family.

Tomorrow will be a big day as we are leaving Vietnam to bring the girls to their new country, Canada.  Some will say we are uprooting them, we prefer saying we are transplanting them in their new soil.  It is hard for us to leave, realizing that we are leaving good people behind.  We are going to depart a place that is quite significant for our family and it might take quite some time before we get a chance to return.  But we know we need to get these little girls home, and we also need to reunite with the rest of our rainbow family we miss so much. 

Thank you for all your thoughts and prayers while we were here and please don’t be afraid to visit us in Kingston.  We will keep everyone up to date with the rest of this adventure.  We will be taking the girls to the hospital early next week, as soon as we have medicare taken care of.

Look at the Stuff and the Girls

Angels

There seems to be a lot of them around us through this adventure.  During the preparations, long before we had the date, we continued to meet them as our journey unfolded.  From the man on his moped peaking to see who is in the cab and smiling once he sees the 2 babies, to all the people who gave generously and provided us assistance in all kinds of ways, some we can’t mention because otherwise they would end up in trouble.  This adoption journey has been an incredible experience and will continue to be when we get them home to get the medical attention they so require.

Today was full of victories.  We woke up to beautiful smiling girls reaching for us, we got the Vietnamese passports, we received confirmation that we will get the Canadian passports tomorrow, and we managed to reschedule our flights one week ahead the initial date.  We also went to purchase toys, books and medication for the orphanage.  Again, this donation is possible thanks to people around us who gave generously.  Amazing what you can buy in Vietnam with a little over $600 US.  We will need two cabs to bring everything to the orphanage tomorrow.

The other thing that struck us over here is how many people, locals or expats at the hotel, have reached out to enquire about the girls, realizing there is something not quite right with them.   All of the comments were encouraging and positive, wishing us the best as a family.

It is hard to believe that we are wrapping up this part of the journey that started back in January, but as we are getting ready to get back home, we know there is another big leg of the race that needs to be completed. 

Little Canadians

Break Out the Snow Suits and the Maple Syrup: They are Canadians!

Something I have taken for granted some many times has been given to my two little girls.  They are now Canadian Citizens.  We need to wait for their Vietnamese passports and for their Canadian passports and we can come home.  If all goes well we will be home on Nov 13, which is great: as soon as we get home we can reunite our family and truly start the next chapter.  In addition, the girls can start the medical care they so urgently need.  The girls have an appointment tomorrow with a doctor to ensure they can make the 36hr trip to Canada safely.  Once we get the girls checked out we will spend the rest of our time to see the sites of the girls' hometown.

We were very fortunate to collect a lot of money from dear friends and coworkers before our departure to make a donation to the orphanage.  We asked the orphanage what was needed and we started to purchase the stuff today and will finish tomorrow.  We got diapers, faceclothes, cereals, crackers and other snacks, condensed milk, toothbrushes, toothpaste, soap, shampoo, all in huge amounts!  It was a bit funny to see the reactions of people in the aisles as we were filling the cart...  Tomorrow, we will purchase books and toys.  Orphans are staying in orphanages a lot longer now under the new law and books and toys will be useful.  We will take a picture of it all oce we are done purchasing it all.  Believe me, it beats my weekly groceries at Costco!

 

We Have Gained!

We went to the clinic this morning, hoping to meet with a liver specialist.  The doctor met with us briefly and was quite frank telling us he has no pediatrics experience.  He redirected us to a pediatrician who will look at the girls’ files and provide us advice on how to care for them until we get back to Canada.  They were weighed and have gained slightly since their last medical in May.

We have provided them with unlimited sugar water and special formula and we saw dark yellow urine this morning for the first time – not the brown we had been seeing since we got them.  They are passing stools frequently but no diarrhea, which is good as we have started to slowly introduce congee.  We will meet with the doctor again tomorrow morning.

The girls are very easy.  They are able to self-soothe and prefer to fall asleep on their own next to each other.  We had good nights so far, they love to eat and eat 3 regular meals and a couple of snacks a day.  Our outings are quite limited with open windows of about 2 hours. 

We are anxiously waiting for news from Singapore to determine our return date.

We Thought We Had it Right...!

Michael and I left Canada fully prepared with diapers, clothes and everything the girls would need for the time we would be in Vietnam.  After 2 million VND later (about $100 USD) we think we might have it right.  The girls are in newborn size diapers and clothes.  We needed blankets, bibs (it is like we are new at this) and some little cute things because Michael is soft for little girls.  Binh has him right where she needs him to be.  The girls are doing well.  They eat very well and are now drinking milk and water on a regular basis.  Michael and I are finally feeling comfortable.  This being said, the girls are sick.  They have a problem with their liver.  That is all we know right now.  Their skin is yellow as well as the whites of their eyes, their stool is white and urine is brown, all symptoms of liver problems.  In addition, the girls are very underweight (10 and 10 1/2 pounds).  They do eat well but they eat many little meals in a day.  They are twins, they like to be together.   They spend much of their time in the room on the floor playing with each other.   Phuoc is the little bully and takes the toys away from Binh.  Last night, they did sleep from 8h00 to 4h00.  They both took a bottle and went back to sleep.  The girls both avoid eye contact with Michael and I which is normal as they still do not know who we are and why we took them from the only home they had ever known.  It will take time but they will come to trust and love us as we already love them.  They like to go out and see the sights and sounds of HCMC, they seem to like being in the baby slings which is good as it makes it easy for us to go out and see the sites which we plan to do this week with the girls.  What else happening today?  We went to the Canadian consulate to apply for the passports.  For some unknown reason, take between 5 and 7 days to be issued.  DFAIT needs to do a back ground check on two 10 pound little girls who might have terrorist ideas. 

In this case, the Canadian authorities might help us out in speeding the process up so our girls can be seen by doctors asap in Canada.

The Big Day

Well after all of the waiting, worrying, and planning, the day arrived for the Giving and Receiving Ceremony.

We departed the Hotel to go to the orphanage before the ceremony to say good byes and pick the girls up.  Hard to see the 27 left behind in that room.  It was touching to see that the nannies were truly sad to see the twins go.  We met with the doctor at the orphanage and got the final instructions on the meds and vitamins the girls need.

We took a cab to the ceremony where the director of the orphanage met with us.  He seemed to show great concern and pride all at the same time.  We have said it before, but you can tell he is a good man.

After the G&R ceremony, we returned to the hotel to start the next chapter in our life, with a family of 9 children.  There were 4 really scared people in a hotel room, unsure of where life will take us.  Sage Phuoc is an easier going girl, seeming to accept change a little more easily.  Iris Binh is finding the transition very difficult and is feeling very uneasy with her new surroundings.  They seem to get some comfort from each other and the Vietnamese music we have playing in the background seems to help.

To prospective parents who are thinking of adopting, please do not underestimate the stress this puts on the little ones.  On a positive note, they seem to be eating and drinking fairly well.  And however Johanne and I thought we were, we need to go buy some diapers because the size 2 we brought from Canada are far too big.  We have managed to soil every ounce of linen in the hotel room with little girls’ pee!

We were blessed with a pretty good evening, the girls fell asleep and slept until about 4h15 am.  They each took a good full bottle and slept a little bit more.

Today we hope to finalize the last bit of paperwork that we started yesterday and we are eagerly waiting for a visit from the nannies to show us how to properly give the vitamins.

The Big Day