Today we went for a check up at the hospital. The baby's growth has slowed slightly, but is still within the range of a normal baby, albeit a little on the lower side of normal. For now, his weight is not a concern.
His resting oxygen saturation is in the mid to high 80s. Last visit, it was in the mid 90's. This is not great, but the clinician didn't send us home with an oxygen meter, so it's not too bad either. It probably doesn't help that G was a little agitated, even in his "resting" state.
The biggest concern was the baby's labored breathing. G is working hard to breathe, even at rest. For now, we are keeping an eye on it. If things get worse, he will be prescribed medicine. That should buy us some time for G to grow more before his surgery.
Since this is our first baby, it can be difficult to differentiate between his normal state and a healthy baby's version of normal. We are also in denial about how sick he is. We just see our perfect son with big grins and lots of wiggles and a love of the colour orange. I expect the doctors to tell us that he is big and strong and that we have nothing to worry about. How disappointing when they report that, no, he is not OK. Parents have a habit of thinking their kids are the best behaved, or the smartest, or the kindest. They sometimes don't believe that their child could be acting out, or struggling, or bullying. This is our version. We are blind to his illness. What a big contrast with the period before diagnosis, when I was constantly convinced that something was wrong.
Luckily, we have a team who can look at the case objectively and recommend treatment.
Our next check up is in 2 1/2 weeks. Until then, we play and learn and nap. And survive the heat.
Monday, 29 June 2015
Saturday, 27 June 2015
Baby Business #2
Baby seems to have a favorite colour: orange!
We have a screen saver on the TV that rotates through different colours. He doesn't care for most of the screens, but the orange one... he loves it!!
My sister suggested that I take him to an NDP rally and blow his baby mind. Once his repair is complete, I think I will.
We have a screen saver on the TV that rotates through different colours. He doesn't care for most of the screens, but the orange one... he loves it!!
My sister suggested that I take him to an NDP rally and blow his baby mind. Once his repair is complete, I think I will.
Friday, 26 June 2015
A mishmash of thoughts
There isn't much news to report here. We celebrated Father's Day and my birthday, and G is now 3 months. Below is an unorganized account of this week's events.
G is learning how to reach for his toys. He progresses every day. It's neat to watch him figure out how to coordinate his arms to aim for the target. Right now, he has about as much success as a preteen playing the claw machine. He touches his prize most of the time, but only occasionally manages to get a good grasp on it.
There aren't many other baby updates, unless you want to hear about his napping and pooping habits.
Last night, we met with a mother whose son has had operations performed by the surgeon on G's case. She shared a lot of useful information, and helped to prepare us for the tough stuff. We are so fortune that there is a community of heart families in town who are willing to share their experiences. She showed us photos of the OR and the heart lung machine (which acts as the baby's heart and lungs so that his heart can be stopped during surgery ) - which is way bigger than I expected. The surgeon, she told us, really cares about his patients, and has been known to snuggle and play with the babies. On top of that, he is a brilliant surgeon. Good news.
We are booked into our accommodation for the operation and recovery period. The costs are covered by the BC Family Residence Program and Variety. Have I mentioned that I am so happy that we live here in BC?
On Monday, we will go in for a weight check and a visit with the pediatrician. I will have more to report on the baby's condition after that appointment. The nurse clinician will also offer some photos of other babies who are recovering from open heart surgery, tubes, monitors, and all. Hopefully, these images will help us to prepare for that part of the journey.
We are so fortunate to have such a strong support network here. Our families have been helping us with errands and meals, and the nurse in charge of our case answers my calls and emails, and answers questions so thoroughly.
So now, two weeks after the diagnosis, the road ahead seems more manageable. It isn't the path we had planned to take, but there is plenty of joy to find along the way.
On Monday, we will go in for a weight check and a visit with the pediatrician. I will have more to report on the baby's condition after that appointment. The nurse clinician will also offer some photos of other babies who are recovering from open heart surgery, tubes, monitors, and all. Hopefully, these images will help us to prepare for that part of the journey.
We are so fortunate to have such a strong support network here. Our families have been helping us with errands and meals, and the nurse in charge of our case answers my calls and emails, and answers questions so thoroughly.
So now, two weeks after the diagnosis, the road ahead seems more manageable. It isn't the path we had planned to take, but there is plenty of joy to find along the way.
Saturday, 20 June 2015
Gratitude
Last week, I offered up some of my frustration on this blog. I had hoped that it would allow me to move past it so that I can emotionally support my family on this journey. Well, it worked. Thanks for letting me get it off my chest.
I have come to realize that, had G been born in yesteryear, he would be a sick kid who would not likely survive childhood. BUT he was born in the modern day, with extremely successful, lifesaving open heart operations. He has a real shot at a normal life. Our surgeon is among the best in the world. Modern medicine is a miracle.
Since we live in Canada, we don't have to take out a mortgage to pay for the surgery. We just have to keep on paying our taxes and MSP. There are even subsidies to help us cover costs of travel to Vancouver. All because society decided that a baby with heart disease causes enough stress for mom and dad, who don't need to worry whether or not they will afford groceries ever again. Thank you, society. I will never again complain about MSP premiums.
Right now, G is snoring away in my lap. How lucky we are to have each other.
I have come to realize that, had G been born in yesteryear, he would be a sick kid who would not likely survive childhood. BUT he was born in the modern day, with extremely successful, lifesaving open heart operations. He has a real shot at a normal life. Our surgeon is among the best in the world. Modern medicine is a miracle.
Since we live in Canada, we don't have to take out a mortgage to pay for the surgery. We just have to keep on paying our taxes and MSP. There are even subsidies to help us cover costs of travel to Vancouver. All because society decided that a baby with heart disease causes enough stress for mom and dad, who don't need to worry whether or not they will afford groceries ever again. Thank you, society. I will never again complain about MSP premiums.
Right now, G is snoring away in my lap. How lucky we are to have each other.
Tuesday, 16 June 2015
Update #2 Surgery Date
We have a date! Pre-admission is on September 1st. It's an all day affair. G will have an ECHO (an ultrasound of the heart) and and ECG, and we will meet with the surgeon.
Surgery will be the following day. We will be staying in Vancouver for two weeks while the baby recovers, and if all goes well will return home mid September.
The date may get moved forward if G's condition changes, or bumped later if there is am emergent case. Either way, I will post updates as they come in.
Surgery will be the following day. We will be staying in Vancouver for two weeks while the baby recovers, and if all goes well will return home mid September.
The date may get moved forward if G's condition changes, or bumped later if there is am emergent case. Either way, I will post updates as they come in.
Monday, 15 June 2015
Update #1
I've just realized that I haven't really given any hard facts on G's condition. Here are some numbers from our appointment last week:
Surgery Date
The surgery will take place this summer, but the exact date hasn't been decided yet. The window of opportunity is four to six months after birth. Choosing the timing is a balancing act. He needs to be big and strong enough to be able to withstand the surgery. Since two defects need to be repaired, he will be on bypass longer than many heart babies, so bigger is better. If his resting oxygen levels stay too low, it means that his heart can't keep up. In this case, sooner is better. Also, the longer he waits, the more likely he is to have a dangerous "Tet spell," and the more the heart wall thickens. Again, sooner is better.
His surgery is tentatively set for sometime at the end of August, when he will be about five months old. A team of pediatric cardiologists and surgeons review his case and make the decision together. If things change, this date will be adjusted.
Weight
G is still growing and gaining weight well. He is tracking along at the 90th percentile for height, 90th for head circumference, and between 50th and 75th for weight. This has been the case since he regained his birth weight at 10 days postpartum, so the fact that he is not in the 90th percentile for weight is not concerning. If he falls much past the 50th percentile, then we start trying new methods to fatten him up. At some point, Tet babies often slow their weight gain. His has slowed mildly in the past month or so, but not enough to be a cause for concern. We have reacted by feeding him more frequently, which he seems to be enjoying. We will find out if it's helping at his next weight check in two weeks.
Oxygen Levels
At our appointment last Wednesday, G's resting oxygen level was 81%. This is very low, and the cardiologist was quite concerned. Based on his history, this number was too low to make sense. The next day, his resting level was in the low to mid 90's. It dropped lower when he started to get upset. This makes more sense for his case, and the doctor suspects that Wednesday's low reading could have been influenced by the stress G had during his echocardiogram. I suspect that they will keep measuring his levels to get a better sense of how he's doing. To put this into context, a healthy baby would have 99 - 100% oxygen saturation, and the most mild Tet cases are often at 98%. While we need to keep an eye on this, the cardiologist was NOT concerned enough to schedule a procedure to put in a makeshift repair, nor send us home with an oxygen meter to check his levels several times a day.
ECG
On Thursday, G had an ECG done. I am not sure what the results are, but my son sure hated having it done. He had a melt down during the test, so only one could be performed (usually three are done.) He cried himself a purplish -red colour - about as purple as he ever gets. The nurse clinician who works specifically with cardiac peds cases said that he looked like his oxygen was low, but it wasn't a full blown Tet spell. This means he probably hasn't had one yet. Good news!
Temperament and Development
To the untrained eye, G is a normal, happy baby. He can throw a good fit, but he is often very happy and smiley. He is very active and engaged in his world. Right now he is just starting to reach for objects and building his vocabulary of baby sounds. He loves to smile at anyone who is smiling at him, and recently made friends with his own reflection. So far, he has not suffered any physical, cognitive, emotional, or social delays.
Surgery Date
The surgery will take place this summer, but the exact date hasn't been decided yet. The window of opportunity is four to six months after birth. Choosing the timing is a balancing act. He needs to be big and strong enough to be able to withstand the surgery. Since two defects need to be repaired, he will be on bypass longer than many heart babies, so bigger is better. If his resting oxygen levels stay too low, it means that his heart can't keep up. In this case, sooner is better. Also, the longer he waits, the more likely he is to have a dangerous "Tet spell," and the more the heart wall thickens. Again, sooner is better.
His surgery is tentatively set for sometime at the end of August, when he will be about five months old. A team of pediatric cardiologists and surgeons review his case and make the decision together. If things change, this date will be adjusted.
Weight
G is still growing and gaining weight well. He is tracking along at the 90th percentile for height, 90th for head circumference, and between 50th and 75th for weight. This has been the case since he regained his birth weight at 10 days postpartum, so the fact that he is not in the 90th percentile for weight is not concerning. If he falls much past the 50th percentile, then we start trying new methods to fatten him up. At some point, Tet babies often slow their weight gain. His has slowed mildly in the past month or so, but not enough to be a cause for concern. We have reacted by feeding him more frequently, which he seems to be enjoying. We will find out if it's helping at his next weight check in two weeks.
Oxygen Levels
At our appointment last Wednesday, G's resting oxygen level was 81%. This is very low, and the cardiologist was quite concerned. Based on his history, this number was too low to make sense. The next day, his resting level was in the low to mid 90's. It dropped lower when he started to get upset. This makes more sense for his case, and the doctor suspects that Wednesday's low reading could have been influenced by the stress G had during his echocardiogram. I suspect that they will keep measuring his levels to get a better sense of how he's doing. To put this into context, a healthy baby would have 99 - 100% oxygen saturation, and the most mild Tet cases are often at 98%. While we need to keep an eye on this, the cardiologist was NOT concerned enough to schedule a procedure to put in a makeshift repair, nor send us home with an oxygen meter to check his levels several times a day.
ECG
On Thursday, G had an ECG done. I am not sure what the results are, but my son sure hated having it done. He had a melt down during the test, so only one could be performed (usually three are done.) He cried himself a purplish -red colour - about as purple as he ever gets. The nurse clinician who works specifically with cardiac peds cases said that he looked like his oxygen was low, but it wasn't a full blown Tet spell. This means he probably hasn't had one yet. Good news!
Temperament and Development
To the untrained eye, G is a normal, happy baby. He can throw a good fit, but he is often very happy and smiley. He is very active and engaged in his world. Right now he is just starting to reach for objects and building his vocabulary of baby sounds. He loves to smile at anyone who is smiling at him, and recently made friends with his own reflection. So far, he has not suffered any physical, cognitive, emotional, or social delays.
Disguised Miracles
While parenting G, we have had our share of frustration. However, some of our worst experiences had some incredible silver lining.
I had hoped for a nice 7 lb baby. G was 9 lbs. Not the biggest, but large for a little first time mommy. I will spare you the details of the labour, but it wasn't easy and it wasn't quick. But since he is so large, he has a head start on the weight gain required to withstand open heart surgery.
We had feeding issues when our baby was brand new. I wound up having to pump for almost a week for my milk to come in. It was a long week with almost no sleep. I started hallucinating (don't worry, it wasn't dangerous. )
When my milk came in, there was plenty and it was very easy for my son to drink his fill without working very hard. I believe this to be due to the pumping. Many Tet babies start losing weight because their hearts can't keep up with the hard work of nursing, but they need to be large and robust enough to handle the surgery. G has had a very healthy rate of weight gain so far. In fact, he has been tracking along the 90th percentile for length and head circumference, and almost the 75th for weight since he regained his birth weight.
If you read the last post, you know that we had a hard time getting a diagnosis. Part of the problem was that we allowed ourselves to be brushed off instead of digging in our heals. Now we know better. We were able to learn this lesson early, when no harm came to our son, instead of when he is recovering post-op and at risk of complications.
I hope that we can remember during the trying times ahead that what may seem like a bad thing might be saving our precious child's life.
I had hoped for a nice 7 lb baby. G was 9 lbs. Not the biggest, but large for a little first time mommy. I will spare you the details of the labour, but it wasn't easy and it wasn't quick. But since he is so large, he has a head start on the weight gain required to withstand open heart surgery.
We had feeding issues when our baby was brand new. I wound up having to pump for almost a week for my milk to come in. It was a long week with almost no sleep. I started hallucinating (don't worry, it wasn't dangerous. )
When my milk came in, there was plenty and it was very easy for my son to drink his fill without working very hard. I believe this to be due to the pumping. Many Tet babies start losing weight because their hearts can't keep up with the hard work of nursing, but they need to be large and robust enough to handle the surgery. G has had a very healthy rate of weight gain so far. In fact, he has been tracking along the 90th percentile for length and head circumference, and almost the 75th for weight since he regained his birth weight.
If you read the last post, you know that we had a hard time getting a diagnosis. Part of the problem was that we allowed ourselves to be brushed off instead of digging in our heals. Now we know better. We were able to learn this lesson early, when no harm came to our son, instead of when he is recovering post-op and at risk of complications.
I hope that we can remember during the trying times ahead that what may seem like a bad thing might be saving our precious child's life.
Instinct
Over the past few days, I have been debating whether or not to write this post. I fear that some of my experiences may be misconstrued as feelings of resentment toward the team caring for my baby, so I am going to begin with a little justification for this post.
The message I want to communicate is that I, as a mother, am a vital part of my son's health care team. I know him better than anyone else, and my opinions are important. It took me a long time to learn to trust my gut, and I still struggle for confidence in my intuition.
I still believe that the doctors and nurses looking after my baby are competent. Tet is a rare and tricky beast, and G's case in particular fooled many folks. We are now in regular contact with a team who are experts in his condition.
The things that I write below have weighed heavily in my mind. I need to process my emotions so that I can move forward. The purpose of this blog is to help me to cope with what is happening to my family, so I am going to write about it. Please keep in mind that I received very devastating news only four days ago, and so there may be some anger creeping into the text. This is a normal part of my healing process, but it might bother some readers.
Ok, here we go.
When G was born, we successfully nursed the first night. I know this because the nurses kept checking his blood sugar levels. They were concerned, because G was so big, that I may have had gestational diabetes that didn't show up during screening. This could lead to blood sugar crashes in my newborn.
At some point, I was told that I was holding him incorrectly and was offered a set of "acceptable " nursing positions. We were terrible at it. I very quickly realized that my baby was not getting enough milk, and asked for more help. G was (A) aiming in all the wrong places, (B) exceptionally strong for a newborn, and (C) not opening his mouth very long or very wide when in the correct position. I asked for more help, but to be honest the help I received was not particularly useful, and sometimes I was just brushed off and told to keep practicing.
What I should have realized is that these positions would be great if they worked, but since we were getting nowhere we should have ditched them and gone back to what was successful.
Instead, I felt that the old way of feeding was no longer an option, and that I was a failure because I couldn't force my (insanely strong) baby to latch on properly. I continued futile attempts to practice and kept asking for help whenever I could. Judge if you must, but remember that I was sleep deprived, was falling off the hormone cliff, and had been a parent for a whole 12 hours. I hadn't built enough confidence in myself to trust those maternal instincts yet.
After about 5 hours at home, I was 100% convinced that my baby had no milk. As soon as the public health unit opened, we packed up our son and asked, yet again, for help. The nurse did an evaluation, told me babies cluster feed, my milk would come in that day, and my latch wasn't so bad. She said only worry if he doesn't poop for 24 hours. We explained that he hadn't pooped, and she said he probably would soon. When we asked about using formula, she scoffed at the idea and said only to use it as a last resort. Then she sent us on our way and suggested we come back the following day to check in.
My instincts told me that every piece of advice this woman told us was dead wrong. But I trusted her anyway. We did use a little formula though, because I didn't quite trust her enough.
The following day, a miracle occurred. We met a nurse who examined little G and told us that, yes, there was a problem. She encouraged me to listen to my intuition, and she put us on a detailed plan to build my milk supply and make sure that G was well nourished. This woman was the best person that we could have met, and I credit her with saving my son's life.
A few days later, I was holding G in the "incorrect" position when he turned his head, opened his mouth wide, and aimed directly for where his food supply was (although it was covered in a shirt.) He continued to try his hardest to get at the goods, so I tried feeding him lIke that. For the first time since we were in hospital, I heard swallows. We weren't bad at nursing; we were experts at our own particular style of feeding.
I had a lot of thoughts. We knew what we were doing. We were going to be OK. The parenting books were guidelines only. And I knew my son better than anyone, and I needed to be assertive when asking for help.
Unfortunately, I hadn't learned that lesson well enough when we tried to get a diagnosis for G's heart, which resulted in the news coming at almost 12 weeks postpartum - over six weeks later than it should have.
When G was about three weeks old, I did some research on congenital heart defects during a 2 AM feeding. When I came across Tetralogy of Fallot, I was quite confident that he had it based on the list of symptoms. However, my Google University medical degree wasn't worth much, so I left the diagnosis up to a doctor. I spent the next two days asking EVERYONE I knew if his lips looked blue, because they did to me. Everyone disagreed. At our next appointment, I asked the GP (as he checked the baby's heart murmur) if G's lips looked blue. He didn't think so. I even went to a pediatrician who, once again, said no. But she decided to refer us to a pediatric cardiologist to be sure.
Once again, I figured these people knew best and finally accepted that my son was probably not dying from a dangerous heart defect. Unfortunately, they were wrong. G in fact has Tetralogy of Fallot and will require life saving open heart surgury in the next couple of months.
I don't blame these doctors. OK, scratch that, I'm still in the "angry and blame-y" stage of coming to terms with this new reality, and I'm shocked that not one doctor - out of three GPs and two pediatricians - mentioned that my baby had visual signs of a deadly heart defect. But only four babies are born with ToF per year on Vancouver Island, so it's not something that they see often. Additionally, G was growing very well and was hitting all of his milestones on time, early, or exceptionally early. He fooled everyone. Most importantly, we didn't lose anything in the meantime. G didn't have any life - risking episodes. We lost six weeks of paranoia. So while I blame many people for his late diagnosis (including myself for not pressing the issue more), I am hoping to move past it.
The most important lesson that I have learned is that I am a part of G's health care team with an important role. The doctors, especially the specialist and surgeons, know a lot about ToF and surgical techniques. I know a lot about G. Together, we have the body of information needed to make a solid plan for my son's recovery.
The nurses and doctors who gave us the wrong advice weren't incompetent. I believe that we just fell into some small minority of families where the advice given to us wasn't useful. No one is perfect. The fact that we were told the same thing over and over suggests that we didn't just have the bad luck of stumbling across one bad doctor, but instead that the training to spot this disease is insufficient.
I have been told that I will need to be a strong advocate for my child while we are at Children's Hospital for the surgery. I feel fortune to have learned the lessons that I did when they did not harm my son.
The message I want to communicate is that I, as a mother, am a vital part of my son's health care team. I know him better than anyone else, and my opinions are important. It took me a long time to learn to trust my gut, and I still struggle for confidence in my intuition.
I still believe that the doctors and nurses looking after my baby are competent. Tet is a rare and tricky beast, and G's case in particular fooled many folks. We are now in regular contact with a team who are experts in his condition.
The things that I write below have weighed heavily in my mind. I need to process my emotions so that I can move forward. The purpose of this blog is to help me to cope with what is happening to my family, so I am going to write about it. Please keep in mind that I received very devastating news only four days ago, and so there may be some anger creeping into the text. This is a normal part of my healing process, but it might bother some readers.
Ok, here we go.
When G was born, we successfully nursed the first night. I know this because the nurses kept checking his blood sugar levels. They were concerned, because G was so big, that I may have had gestational diabetes that didn't show up during screening. This could lead to blood sugar crashes in my newborn.
At some point, I was told that I was holding him incorrectly and was offered a set of "acceptable " nursing positions. We were terrible at it. I very quickly realized that my baby was not getting enough milk, and asked for more help. G was (A) aiming in all the wrong places, (B) exceptionally strong for a newborn, and (C) not opening his mouth very long or very wide when in the correct position. I asked for more help, but to be honest the help I received was not particularly useful, and sometimes I was just brushed off and told to keep practicing.
What I should have realized is that these positions would be great if they worked, but since we were getting nowhere we should have ditched them and gone back to what was successful.
Instead, I felt that the old way of feeding was no longer an option, and that I was a failure because I couldn't force my (insanely strong) baby to latch on properly. I continued futile attempts to practice and kept asking for help whenever I could. Judge if you must, but remember that I was sleep deprived, was falling off the hormone cliff, and had been a parent for a whole 12 hours. I hadn't built enough confidence in myself to trust those maternal instincts yet.
After about 5 hours at home, I was 100% convinced that my baby had no milk. As soon as the public health unit opened, we packed up our son and asked, yet again, for help. The nurse did an evaluation, told me babies cluster feed, my milk would come in that day, and my latch wasn't so bad. She said only worry if he doesn't poop for 24 hours. We explained that he hadn't pooped, and she said he probably would soon. When we asked about using formula, she scoffed at the idea and said only to use it as a last resort. Then she sent us on our way and suggested we come back the following day to check in.
My instincts told me that every piece of advice this woman told us was dead wrong. But I trusted her anyway. We did use a little formula though, because I didn't quite trust her enough.
The following day, a miracle occurred. We met a nurse who examined little G and told us that, yes, there was a problem. She encouraged me to listen to my intuition, and she put us on a detailed plan to build my milk supply and make sure that G was well nourished. This woman was the best person that we could have met, and I credit her with saving my son's life.
A few days later, I was holding G in the "incorrect" position when he turned his head, opened his mouth wide, and aimed directly for where his food supply was (although it was covered in a shirt.) He continued to try his hardest to get at the goods, so I tried feeding him lIke that. For the first time since we were in hospital, I heard swallows. We weren't bad at nursing; we were experts at our own particular style of feeding.
I had a lot of thoughts. We knew what we were doing. We were going to be OK. The parenting books were guidelines only. And I knew my son better than anyone, and I needed to be assertive when asking for help.
Unfortunately, I hadn't learned that lesson well enough when we tried to get a diagnosis for G's heart, which resulted in the news coming at almost 12 weeks postpartum - over six weeks later than it should have.
When G was about three weeks old, I did some research on congenital heart defects during a 2 AM feeding. When I came across Tetralogy of Fallot, I was quite confident that he had it based on the list of symptoms. However, my Google University medical degree wasn't worth much, so I left the diagnosis up to a doctor. I spent the next two days asking EVERYONE I knew if his lips looked blue, because they did to me. Everyone disagreed. At our next appointment, I asked the GP (as he checked the baby's heart murmur) if G's lips looked blue. He didn't think so. I even went to a pediatrician who, once again, said no. But she decided to refer us to a pediatric cardiologist to be sure.
Once again, I figured these people knew best and finally accepted that my son was probably not dying from a dangerous heart defect. Unfortunately, they were wrong. G in fact has Tetralogy of Fallot and will require life saving open heart surgury in the next couple of months.
I don't blame these doctors. OK, scratch that, I'm still in the "angry and blame-y" stage of coming to terms with this new reality, and I'm shocked that not one doctor - out of three GPs and two pediatricians - mentioned that my baby had visual signs of a deadly heart defect. But only four babies are born with ToF per year on Vancouver Island, so it's not something that they see often. Additionally, G was growing very well and was hitting all of his milestones on time, early, or exceptionally early. He fooled everyone. Most importantly, we didn't lose anything in the meantime. G didn't have any life - risking episodes. We lost six weeks of paranoia. So while I blame many people for his late diagnosis (including myself for not pressing the issue more), I am hoping to move past it.
The most important lesson that I have learned is that I am a part of G's health care team with an important role. The doctors, especially the specialist and surgeons, know a lot about ToF and surgical techniques. I know a lot about G. Together, we have the body of information needed to make a solid plan for my son's recovery.
The nurses and doctors who gave us the wrong advice weren't incompetent. I believe that we just fell into some small minority of families where the advice given to us wasn't useful. No one is perfect. The fact that we were told the same thing over and over suggests that we didn't just have the bad luck of stumbling across one bad doctor, but instead that the training to spot this disease is insufficient.
I have been told that I will need to be a strong advocate for my child while we are at Children's Hospital for the surgery. I feel fortune to have learned the lessons that I did when they did not harm my son.
Saturday, 13 June 2015
Baby Business #1
Part of this project's purpose is therapeutic journalism for me, so I have decided to record some baby stories that have nothing to do with G's heart. I will title these posts "Baby Business."
For the last week, I have been running an experiment to see how the baby's language and association skills are developing. I chose a distinctive sound (buzzing with my lips) and made it every time I put him on the change table. He quickly started trying to mimic it. He can't quite do it the same way I do, but he has his own throatier version. This amazed me. After a few days, he would buzz sometimes when he was placed on the change table but before I started. Again, I was impressed that he was forming an association between a "word" and an experience. Not too bad for a two monther!
At 6 AM this morning, I got up to feed G. Toward the end of his meal, he had a huge poop. A soak-through-his-clothes-and-mine, wake-up-dad-in-the-next-room kind of poop. His pajamas needed to be changed, and I was hoping I could do it without waking him up too much. As soon as I put him down on the table, he flashed a huge smile and began buzzing like crazy (lots of sound for lots of poop?). Screw sleeping - my baby was clearly showing his genius. So I responded by mimicking him and smiling.
To his credit, he settled down in a couple of minutes and went back to sleep, giving me time to write this post.
Just as he was drifting off, Dad came in and inquired about the huge poop. When I told him about the colossal volume of excrement, he just kissed G and said, "That's my boy."
He probably wouldn't have said that if it was his turn to change G's diaper.
For the last week, I have been running an experiment to see how the baby's language and association skills are developing. I chose a distinctive sound (buzzing with my lips) and made it every time I put him on the change table. He quickly started trying to mimic it. He can't quite do it the same way I do, but he has his own throatier version. This amazed me. After a few days, he would buzz sometimes when he was placed on the change table but before I started. Again, I was impressed that he was forming an association between a "word" and an experience. Not too bad for a two monther!
At 6 AM this morning, I got up to feed G. Toward the end of his meal, he had a huge poop. A soak-through-his-clothes-and-mine, wake-up-dad-in-the-next-room kind of poop. His pajamas needed to be changed, and I was hoping I could do it without waking him up too much. As soon as I put him down on the table, he flashed a huge smile and began buzzing like crazy (lots of sound for lots of poop?). Screw sleeping - my baby was clearly showing his genius. So I responded by mimicking him and smiling.
To his credit, he settled down in a couple of minutes and went back to sleep, giving me time to write this post.
Just as he was drifting off, Dad came in and inquired about the huge poop. When I told him about the colossal volume of excrement, he just kissed G and said, "That's my boy."
He probably wouldn't have said that if it was his turn to change G's diaper.
Friday, 12 June 2015
Tetralogy of Fallot
At this point, you may be wondering what Tetralogy of Fallot (Tet) is. If you have a medical background, you probably already know about it. So I am going to do my best to keep this explanation as simple as possible for everyone else.
Tet is a set of three heart defects that work together to cause a fourth. In a normal heart, the right ventricle pumps oxygen poor blood to the lungs. In a tet heart, the vessel leaving the heart is too narrow, and there is a hole in the heart wall. When the heart beats, some blood is pushed through the hole instead of taking the vessel to the lung. This oxygen poor blood enters the left ventricle, usually reserved for oxygen rich blood, and is sent to the body. The end result is low oxygen levels in the blood.
Additionally, the aorta is positioned improperly in Tet babies, which causes more oxygen poor blood to end up in the body. Early results indicate that G doesn't have this defect, so to be honest I haven't yet taken much time to learn about how it works.
To compensate for low oxygen levels in the body, the heart muscle thickens. This sounds like a good thing, but unfortunately it damages the heart muscle over time. This thickening is the fourth defect.
Babies tend to have skin with a blueish tinge, especially around the mouth, as well as rapid breathing, and sweating while eating. During periods of stress, such as after crying, eating, or pooping, oxygen levels in the blood can drop dramatically leading to "Tet spells." These can be very dangerous. As far as we can tell, G has not had a full blown Tet spell. He doesn't seem to have many problems eating or pooping, but can become reddish-purple when he gets very upset. Our job to try to keep G from becoming excessively worked up.
All Tet babies must have corrective surgery. Without treatment, 25% of patients will die within the first year, and 75% will die by age 10. Only 5% will survive to age 40. With treatment, odds of survival increase dramatically. In fact, most children go on to lead normal, healthy, active lives.
If you have Googled this condition, you may have come across a statistic claiming only 91% of treated Tet babies survive until age five. 91% may be a good score on a math test, but it is terrifying in the context of my child's well being. The specialist assured us that many of the fatalities are in children with more serious anatomical anomalies than G has. His odds of a good outcome are much better.
The cardiologist advised us to cruise the internet - the opposite advice of every other health care provider I have ever met. An excellent resource is http://www.cincinnatichildrens.org/health/t/tof/ They have a video that explains the disorder very well.
When a loved one has a health problem, we tend to become experts overnight. It has been strange to hear my husband throw around vocabulary like "pulmonary artery" and "stenosis" and "ventricle" in regular conversation. One day, we will need to explain to our son why he has a scar, and why he needs to visit the cardiologist every year. Perhaps by then we will have enough experience explaining Tetralogy of Fallot that we will be able to find the words to help him understand.
Tet is a set of three heart defects that work together to cause a fourth. In a normal heart, the right ventricle pumps oxygen poor blood to the lungs. In a tet heart, the vessel leaving the heart is too narrow, and there is a hole in the heart wall. When the heart beats, some blood is pushed through the hole instead of taking the vessel to the lung. This oxygen poor blood enters the left ventricle, usually reserved for oxygen rich blood, and is sent to the body. The end result is low oxygen levels in the blood.
Additionally, the aorta is positioned improperly in Tet babies, which causes more oxygen poor blood to end up in the body. Early results indicate that G doesn't have this defect, so to be honest I haven't yet taken much time to learn about how it works.
To compensate for low oxygen levels in the body, the heart muscle thickens. This sounds like a good thing, but unfortunately it damages the heart muscle over time. This thickening is the fourth defect.
Babies tend to have skin with a blueish tinge, especially around the mouth, as well as rapid breathing, and sweating while eating. During periods of stress, such as after crying, eating, or pooping, oxygen levels in the blood can drop dramatically leading to "Tet spells." These can be very dangerous. As far as we can tell, G has not had a full blown Tet spell. He doesn't seem to have many problems eating or pooping, but can become reddish-purple when he gets very upset. Our job to try to keep G from becoming excessively worked up.
All Tet babies must have corrective surgery. Without treatment, 25% of patients will die within the first year, and 75% will die by age 10. Only 5% will survive to age 40. With treatment, odds of survival increase dramatically. In fact, most children go on to lead normal, healthy, active lives.
If you have Googled this condition, you may have come across a statistic claiming only 91% of treated Tet babies survive until age five. 91% may be a good score on a math test, but it is terrifying in the context of my child's well being. The specialist assured us that many of the fatalities are in children with more serious anatomical anomalies than G has. His odds of a good outcome are much better.
The cardiologist advised us to cruise the internet - the opposite advice of every other health care provider I have ever met. An excellent resource is http://www.cincinnatichildrens.org/health/t/tof/ They have a video that explains the disorder very well.
When a loved one has a health problem, we tend to become experts overnight. It has been strange to hear my husband throw around vocabulary like "pulmonary artery" and "stenosis" and "ventricle" in regular conversation. One day, we will need to explain to our son why he has a scar, and why he needs to visit the cardiologist every year. Perhaps by then we will have enough experience explaining Tetralogy of Fallot that we will be able to find the words to help him understand.
The Diagnosis
The day that G was born was a long one for me. I was impatient to meet him face to face, and he was determined to delay our introduction as long as possible. When he finally arrived, he surprised everyone with his size. 9 lbs - not colossal, but not what anyone was expecting. I was immediately impressed with how perfect he was. Ever since, he has amazed me everyday with his persistence, curiosity, intelligence, and strength.
During our hospital stay, the pediatrician noticed a heart murmur, the loud whooshing sound of turbulent blood in the heart, but said not to worry right away. Many babies are born with murmurs that go away on their own within a few weeks. I was one of those babies, so I was not overly concerned. When the GP could still hear it five weeks later, the process was set in motion to have G checked by a pediatric cardiologist. Once again, the doctors indicated that many persistent murmurs do not cause problems, and can resolve on their own.
While we waited for G's appointment, he didn't show obvious signs of being sick. He was growing and eating well, and was reaching all of his milestones early or on time. He learned how to roll front-to-back at three weeks - much earlier than the average of four months. He was very strong, active, and playful. We had convinced ourselves that he was fine, and were more concerned about his behaviour during the two hour drive to the specialist than the pending diagnosis.
As soon as G arrived in the pediatric ward, he had a melt down. It was likely caused by too much time in the car. The nurse who was checking us in called over a student to show her the hue of his skin, explaining that it was something to look for in pediatric cardiac patients. Bad sign number one.
G had an echocardiogram (ultrasound of the heart) to give the specialist enough information to diagnose his condition. She took almost 80 images and videos, and was insistent that she get shots at even the trickiest angles. She had the doctor come to evaluate the images before she had even completed the set. Bad sign number two.
The cardiologist quickly diagnosed G with Tetralogy of Fallot (Tet), a collection of heart defects that, if left untreated, is fatal by age 1 in 25% of patients, and by age 10 in 70% of patients. G would need open heart surgery, and soon. There was no chance that his heart could repair itself. He had a very dangerous disease.
My husband compared that diagnosis to being hit by a bus. It's an accurate metaphor. The news was sudden, severe, and devastating. The baby was oblivious; we were in shambles. For the next 24 hours, we cared for G in shifts. One of us would play, while the other would try to process our new reality. One of our new responsibilities was to keep the baby calm as much as possible, since crying spells could send his oxygen levels dangerously low. He picks up on the attitude of those around him. All I needed to do was cry, but it was not an option in front of G.
Now, two days after our initial visit with the cardiologist, we are adjusting. The surgeons who will be performing the operation have been described as "Gods" and "among the best in the world." Pediatric open heart procedures have a very high success rate, and G is not among the most severe Tet cases.
So we sit, and wait, and play, and smile, and cry, and worry. Most of all, we live. 100 years ago, this would be a death sentence for our little boy. Today, he will live. Tomorrow, he will live. If we are lucky, in 100 years, he will still live. We live as passionately as we can, because our days together are a gift. We hold each other, and focus on the warmth of that embrace. When G smiles, we record it in our minds; we will need to have it with us when we are waiting for the surgeon's updates, or when we are sent home for the night while G recovers in the ICU.
It's been a rough two days, and the months to follow will be even more challenging. I would love to end on a positive note and write something inspiring, but I just don't have it in me. The wound is too fresh. The best I can do is to point out that with surgery, G has an excellent chance of living a long, full, normal life. Furthermore, he is not currently suffering any cognitive, emotional, or physical delays. For that, we are so grateful.
During our hospital stay, the pediatrician noticed a heart murmur, the loud whooshing sound of turbulent blood in the heart, but said not to worry right away. Many babies are born with murmurs that go away on their own within a few weeks. I was one of those babies, so I was not overly concerned. When the GP could still hear it five weeks later, the process was set in motion to have G checked by a pediatric cardiologist. Once again, the doctors indicated that many persistent murmurs do not cause problems, and can resolve on their own.
While we waited for G's appointment, he didn't show obvious signs of being sick. He was growing and eating well, and was reaching all of his milestones early or on time. He learned how to roll front-to-back at three weeks - much earlier than the average of four months. He was very strong, active, and playful. We had convinced ourselves that he was fine, and were more concerned about his behaviour during the two hour drive to the specialist than the pending diagnosis.
As soon as G arrived in the pediatric ward, he had a melt down. It was likely caused by too much time in the car. The nurse who was checking us in called over a student to show her the hue of his skin, explaining that it was something to look for in pediatric cardiac patients. Bad sign number one.
G had an echocardiogram (ultrasound of the heart) to give the specialist enough information to diagnose his condition. She took almost 80 images and videos, and was insistent that she get shots at even the trickiest angles. She had the doctor come to evaluate the images before she had even completed the set. Bad sign number two.
The cardiologist quickly diagnosed G with Tetralogy of Fallot (Tet), a collection of heart defects that, if left untreated, is fatal by age 1 in 25% of patients, and by age 10 in 70% of patients. G would need open heart surgery, and soon. There was no chance that his heart could repair itself. He had a very dangerous disease.
My husband compared that diagnosis to being hit by a bus. It's an accurate metaphor. The news was sudden, severe, and devastating. The baby was oblivious; we were in shambles. For the next 24 hours, we cared for G in shifts. One of us would play, while the other would try to process our new reality. One of our new responsibilities was to keep the baby calm as much as possible, since crying spells could send his oxygen levels dangerously low. He picks up on the attitude of those around him. All I needed to do was cry, but it was not an option in front of G.
Now, two days after our initial visit with the cardiologist, we are adjusting. The surgeons who will be performing the operation have been described as "Gods" and "among the best in the world." Pediatric open heart procedures have a very high success rate, and G is not among the most severe Tet cases.
So we sit, and wait, and play, and smile, and cry, and worry. Most of all, we live. 100 years ago, this would be a death sentence for our little boy. Today, he will live. Tomorrow, he will live. If we are lucky, in 100 years, he will still live. We live as passionately as we can, because our days together are a gift. We hold each other, and focus on the warmth of that embrace. When G smiles, we record it in our minds; we will need to have it with us when we are waiting for the surgeon's updates, or when we are sent home for the night while G recovers in the ICU.
It's been a rough two days, and the months to follow will be even more challenging. I would love to end on a positive note and write something inspiring, but I just don't have it in me. The wound is too fresh. The best I can do is to point out that with surgery, G has an excellent chance of living a long, full, normal life. Furthermore, he is not currently suffering any cognitive, emotional, or physical delays. For that, we are so grateful.
Motivation
Two days ago, my young son was diagnosed with congenital heart disease. Within 24 hours, it became apparent that I would need a means of working through the cognitive and emotional turmoil due to my baby's condition. Additionally, I would like to keep family and friends updated and shed some light into Baby G's disease. Answering the same questions over and over is very draining.
A blog seemed like the perfect solution. Keeping a record of our journey is therapeutic for me, and it can serve as a resource for our support network.
Please excuse my poor grammar and writing. I don't have much time to write and edit these posts; I would rather be playing with my little baby. Any questions can be directed to the comments section. They may not be answered immediately, but I will do my best to reply in a timely manner. Once again, I would rather be playing with Baby G.
The following posts will deal with G's heart murmur, his achievements, and the amazing treatments available to him.
And here we go...
A blog seemed like the perfect solution. Keeping a record of our journey is therapeutic for me, and it can serve as a resource for our support network.
Please excuse my poor grammar and writing. I don't have much time to write and edit these posts; I would rather be playing with my little baby. Any questions can be directed to the comments section. They may not be answered immediately, but I will do my best to reply in a timely manner. Once again, I would rather be playing with Baby G.
The following posts will deal with G's heart murmur, his achievements, and the amazing treatments available to him.
And here we go...
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