Thursday, November 29, 2012

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.

Wednesday, November 28, 2012

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.

Thursday, November 22, 2012

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.

Sunday, November 18, 2012

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.


Friday, November 16, 2012

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.


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.

Friday, November 9, 2012

Last Day + Donation


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.

Thursday, November 8, 2012

Look at the Stuff and the Girls


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. 

Wednesday, November 7, 2012

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.

Tuesday, November 6, 2012

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.

Monday, November 5, 2012

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