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.
Thursday, November 29, 2012
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.
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.
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.
Tuesday, November 20, 2012
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.
Michael
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
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.
Michael
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.
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.
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