Last night, my husband and I were remarking that despite my attempt at a healthy pregnancy, our baby was still born with a dangerous birth defect.
I was careful to avoid all the hazards, from cigarette smoke to alcohol to deli meat. I ate a healthy diet. I stayed somewhat active. I wouldn't even use bathroom cleaner. My husband took charge of cleaning the shower. The guidelines for pregnant women are impossibly strict, and I followed them. We wondered if that care was all for nothing.
I stand by what I did. It gave my son his best chance. I would do anything for him to be well. If I am so lucky as to become pregnant again, I will be cautious while that child relies on me. There will be no regrets, no questioning if I had done all that I could to prevent an illness. I am not plagued by that guilt, and I can focus my attention toward my family.
It wasn't all for nothing. Unfortunately, sometimes birth defects occur in babies without any risk factors, just like our sweet son. But at least I know that I didn't cause his CHD through carelessness. In this turbulent time, that nugget of peace is invaluable.
Wednesday, 22 July 2015
Tuesday, 21 July 2015
Growing Up
Heads up: this post has nothing to do with congenital heart disease. Honestly, below is just my ramblings about the evolution of my child's sleeping habits.
When I was pregnant, I read a ton of parenting books. That's how I deal with change; I assimilate information. About three days after G was born, I realized that very little content in the baby books actually applied to my child. My new approach to parenting was to wing it, which was far more successful.
The baby quickly became a good sleeper during the night. He slept in his crib, on his back, for longer and longer stretches. I am so very, very thankful for this quality. During the day, however, he would only nap in the fetal position on the chest of a warm, living, breathing human being. No exceptions. He hadn't read the part of the parenting books that tell us that tummy naps are dangerous.
At first, this was a little stressful. Dishes didn't get washed. Laundry didn't get changed over. Maternal naps were not had (although everyone kindly kept reminding me to sleep when he slept, even immediately after I explained why that couldn't happen.) But at some point I clued in. Oh darn, I couldn't do any housework because an adorable, snoring infant insisted on using me as a bassinet. Oh me, oh my! Well, if snuggle I must, then snuggle I shall!
I knew that his napping needs would change all too quickly, so I enjoyed his warm weight as he snoozed peacefully on me. Then, one day at about four weeks of age, he suddenly decided that he wouldn't nap that way anymore. He was ready to grow up.
My mother had warned me that this would happen. Her philosophy is that you don't need to teach kids much of anything in the first year of life. They are preprogrammed to learn how to do everything, including sleeping on their own, when they are ready. For G in particular, this seems to be true. I had been worried that he would become so accustomed to snuggly sleeping that he would never want to nap any other way, but he is more capable of growing up than I gave him credit for. You were right, mom!
Now, when I say that the baby changed his preferences, what I mean is that he insisted on being cradled while he napped instead of sleeping in the fetal position . My dishes still piled up and the laundry didn't get done. I tried to put him down regularly, becoming more creative in technique as time went on, with very rare success. He wasn't ready to nap on his own.
After a few months of this, I started reading the parenting books again. G had been diagnosed with Tetralogy of Fallot, and I was dealing with the anxiety by reading about babies. This led me to believe that if my son couldn't put himself to sleep by two months of age, he would have a difficult time ever figuring it out. If I was constantly nursing him to sleep (which I was) then I could expect him to need to nurse to sleep until age three and beyond. Once again, my mom told me not to sweat it. He would figure out sleeping when he was ready.
Well, once again, my mom called it. Recently, G has insisted that he does not want to nurse to sleep any more. Four months of reinforcing a bad habit undone by one brain growth spurt. Not only that, but he prefers to nap in his crib now!
He also wakes more at night. Oh well. Win some, lose some.
I don't want to pretend that bad habits don't exist. I am sure that there are plenty of babies who needed structure in their sleep routine, and were paid disservice by being nursed to sleep, nap after nap. But my baby, and probably many others, just sorted things out when they were developmentally ready.
I work as an educator. I have lesson plans and structure and games and assignments. Practice makes perfect. It seems miraculous to me that a baby just figures everything out on his own. He doesn't need a demonstration or an instruction manual. It is truly amazing.
Every time he learns a new skill I rejoice, especially when I gain some independence from him. I put many pieces of myself away when he was born, and I miss them desperately. I look forward to bringing them out again when I have the freedom to do so. But the flipside is that he is gaining independence from me, and for that I am never truly ready.
Little G is learning at such an accelerated pace these days. Who knows how many milestones he will reach in the coming weeks. I guess we will have to take it one nap at a time.
When I was pregnant, I read a ton of parenting books. That's how I deal with change; I assimilate information. About three days after G was born, I realized that very little content in the baby books actually applied to my child. My new approach to parenting was to wing it, which was far more successful.
The baby quickly became a good sleeper during the night. He slept in his crib, on his back, for longer and longer stretches. I am so very, very thankful for this quality. During the day, however, he would only nap in the fetal position on the chest of a warm, living, breathing human being. No exceptions. He hadn't read the part of the parenting books that tell us that tummy naps are dangerous.
At first, this was a little stressful. Dishes didn't get washed. Laundry didn't get changed over. Maternal naps were not had (although everyone kindly kept reminding me to sleep when he slept, even immediately after I explained why that couldn't happen.) But at some point I clued in. Oh darn, I couldn't do any housework because an adorable, snoring infant insisted on using me as a bassinet. Oh me, oh my! Well, if snuggle I must, then snuggle I shall!
I knew that his napping needs would change all too quickly, so I enjoyed his warm weight as he snoozed peacefully on me. Then, one day at about four weeks of age, he suddenly decided that he wouldn't nap that way anymore. He was ready to grow up.
My mother had warned me that this would happen. Her philosophy is that you don't need to teach kids much of anything in the first year of life. They are preprogrammed to learn how to do everything, including sleeping on their own, when they are ready. For G in particular, this seems to be true. I had been worried that he would become so accustomed to snuggly sleeping that he would never want to nap any other way, but he is more capable of growing up than I gave him credit for. You were right, mom!
Now, when I say that the baby changed his preferences, what I mean is that he insisted on being cradled while he napped instead of sleeping in the fetal position . My dishes still piled up and the laundry didn't get done. I tried to put him down regularly, becoming more creative in technique as time went on, with very rare success. He wasn't ready to nap on his own.
After a few months of this, I started reading the parenting books again. G had been diagnosed with Tetralogy of Fallot, and I was dealing with the anxiety by reading about babies. This led me to believe that if my son couldn't put himself to sleep by two months of age, he would have a difficult time ever figuring it out. If I was constantly nursing him to sleep (which I was) then I could expect him to need to nurse to sleep until age three and beyond. Once again, my mom told me not to sweat it. He would figure out sleeping when he was ready.
Well, once again, my mom called it. Recently, G has insisted that he does not want to nurse to sleep any more. Four months of reinforcing a bad habit undone by one brain growth spurt. Not only that, but he prefers to nap in his crib now!
He also wakes more at night. Oh well. Win some, lose some.
I don't want to pretend that bad habits don't exist. I am sure that there are plenty of babies who needed structure in their sleep routine, and were paid disservice by being nursed to sleep, nap after nap. But my baby, and probably many others, just sorted things out when they were developmentally ready.
I work as an educator. I have lesson plans and structure and games and assignments. Practice makes perfect. It seems miraculous to me that a baby just figures everything out on his own. He doesn't need a demonstration or an instruction manual. It is truly amazing.
Every time he learns a new skill I rejoice, especially when I gain some independence from him. I put many pieces of myself away when he was born, and I miss them desperately. I look forward to bringing them out again when I have the freedom to do so. But the flipside is that he is gaining independence from me, and for that I am never truly ready.
Little G is learning at such an accelerated pace these days. Who knows how many milestones he will reach in the coming weeks. I guess we will have to take it one nap at a time.
Friday, 17 July 2015
Update #4 Holding his own
We have had a busy couple of weeks!
About two weeks ago, little G decided that he wasn't interested in peeing or eating anymore. After about 15 hours with barely any eating and one, sad little pee, I decided to have him checked out. Since it was Saturday, our usual medical support team were all off of work, so I packed up the baby, called my in laws for some assistance, and headed off to emergency. I knew that the guideline for dehydration is if the baby has 4 wet diapers in 24 hours, he is OK. However, I was extra cautious because of G's heart and didn't want to wait that long.
While we were waiting to get checked in to emergency, the triage staff wanted to take his vitals. Before he was hooked up to the oxygen meter, I warned them that his levels would be low. Afterward, I realized that I could have had a little bit of fun if I had kept my mouth shut for a minute or two and waited for their reaction.
While we were in the department, he had a huge pee. By the time the paediatrician came to check on us, he was eating again. All of his vitals were fine. I had taken a healthy baby to the emergency department. When I told my sister, she kindly said that most moms do it at some point. I guess I am part of the club.
At home, little G is learning a ton! He has gotten quite good at reaching out and grabbing toys. He shoves everything into his little mouth. Peek-a-boo is a new favourite game. And he LOVES to roll from his back to his side, and loves it even more if I pull him from his side on to his tummy. We even got our first giggles recently, although he rations them out. How stingy! Our evenings are spent playing our hardest to try and get those bubbly laughs.
I have also discovered that while this kid's attitude toward soothers varies from indifference to rage (I had no idea a baby could spit a soother so far!), he really likes teethers. I guess it makes sense. When he sticks his thumb in his mouth, he chews on it instead of sucking. Plus, he really enjoys reaching out, grabbing the teether, and trying to get it into his mouth. That's half of the fun right there! I hope that it will provide enough of a distraction during medical tests that he won't have to be sedated. Last time, I fed him until he fell asleep before his ECHO. As he gets more mobile and interested in his environment, I doubt that he will go to sleep so easily right before his tests.
We also welcomed our friends' new little baby over the past few weeks. Baby L is such a little cutie, and we are so in love. Her and G are about three months apart, so we are hoping that they will be best friends as they grow up together. G has a cousin who is two months older, too. It's so nice for him to have friends his own age right from infancy.
Ok, back to medical stuff. About a week ago, G started peeing less again. I got in touch with our nurse clinician in Victoria who coached me through it. She said as long as he was voiding at least 6 times in 24 hours (which he was) and his colour, energy, and breathing were good (which they were), we didn't need to bring him in, although she said we could email her a video of his breathing to be sure. This nurse is seriously the best!! She said that since he is sweating when he eats now and breathing faster, he might be losing fluids faster. He also drools enough to fill the Great Lakes, so some liquid is going there. We worry that the baby may develop heart failure. If he did, he would have a really hard time breathing and would be urinating less. Right now, his heart is working overtime, but it doesn't look like he is in heart failure. We will take that as a win.
The nurse also mentioned that healthy babies typically gain about 30 grams per day. Tet babies in balance gain 20 to 25 g/day, and failing tet babies gain less. At our weigh in today, we found that G gained slightly more than 25g/day over the past few weeks!! This is up from last time, when he was gaining around 22g/day. This puts him above the 50th percentile for weight. He is slowly falling down the curve, but it is gradual enough that our team is quite pleased with his progress.
His breathing and oxygen levels are also unchanged from our last appointment, which means that he is holding his own. He is still working hard to breathe, and his oxygen is sitting at about 86% when he is resting, but considering the heart condition that he was born with, he is doing pretty well.
My husband and I have decided that when G has recovered from his surgery, we are taking a family vacation. I think we have earned it. We are hoping to go somewhere quiet, peaceful, and close to home and hospitals. Sooke and Shawnigan Lake seem like good options, being both beautiful and close to our cardiologist in Victoria. Rathtrevor is also very nice and close to home. Thinking about our first vacation as a family is a very pleasant distraction from G's illness.
We are so thankful for our family and friends who have stepped up and helped us out over the past month with meals, visits, errands, and kindness. You guys are the best!!! We are finally feeling that we can stand on our own feet again, at least for now. We feel so fortunate to be close to both of our families, who have been SO helpful and supportive. THANK YOU!
Our next appointment will be in Victoria, probably in about two weeks. Until then, we play and love and, most of all, live.
About two weeks ago, little G decided that he wasn't interested in peeing or eating anymore. After about 15 hours with barely any eating and one, sad little pee, I decided to have him checked out. Since it was Saturday, our usual medical support team were all off of work, so I packed up the baby, called my in laws for some assistance, and headed off to emergency. I knew that the guideline for dehydration is if the baby has 4 wet diapers in 24 hours, he is OK. However, I was extra cautious because of G's heart and didn't want to wait that long.
While we were waiting to get checked in to emergency, the triage staff wanted to take his vitals. Before he was hooked up to the oxygen meter, I warned them that his levels would be low. Afterward, I realized that I could have had a little bit of fun if I had kept my mouth shut for a minute or two and waited for their reaction.
While we were in the department, he had a huge pee. By the time the paediatrician came to check on us, he was eating again. All of his vitals were fine. I had taken a healthy baby to the emergency department. When I told my sister, she kindly said that most moms do it at some point. I guess I am part of the club.
At home, little G is learning a ton! He has gotten quite good at reaching out and grabbing toys. He shoves everything into his little mouth. Peek-a-boo is a new favourite game. And he LOVES to roll from his back to his side, and loves it even more if I pull him from his side on to his tummy. We even got our first giggles recently, although he rations them out. How stingy! Our evenings are spent playing our hardest to try and get those bubbly laughs.
I have also discovered that while this kid's attitude toward soothers varies from indifference to rage (I had no idea a baby could spit a soother so far!), he really likes teethers. I guess it makes sense. When he sticks his thumb in his mouth, he chews on it instead of sucking. Plus, he really enjoys reaching out, grabbing the teether, and trying to get it into his mouth. That's half of the fun right there! I hope that it will provide enough of a distraction during medical tests that he won't have to be sedated. Last time, I fed him until he fell asleep before his ECHO. As he gets more mobile and interested in his environment, I doubt that he will go to sleep so easily right before his tests.
We also welcomed our friends' new little baby over the past few weeks. Baby L is such a little cutie, and we are so in love. Her and G are about three months apart, so we are hoping that they will be best friends as they grow up together. G has a cousin who is two months older, too. It's so nice for him to have friends his own age right from infancy.
Ok, back to medical stuff. About a week ago, G started peeing less again. I got in touch with our nurse clinician in Victoria who coached me through it. She said as long as he was voiding at least 6 times in 24 hours (which he was) and his colour, energy, and breathing were good (which they were), we didn't need to bring him in, although she said we could email her a video of his breathing to be sure. This nurse is seriously the best!! She said that since he is sweating when he eats now and breathing faster, he might be losing fluids faster. He also drools enough to fill the Great Lakes, so some liquid is going there. We worry that the baby may develop heart failure. If he did, he would have a really hard time breathing and would be urinating less. Right now, his heart is working overtime, but it doesn't look like he is in heart failure. We will take that as a win.
The nurse also mentioned that healthy babies typically gain about 30 grams per day. Tet babies in balance gain 20 to 25 g/day, and failing tet babies gain less. At our weigh in today, we found that G gained slightly more than 25g/day over the past few weeks!! This is up from last time, when he was gaining around 22g/day. This puts him above the 50th percentile for weight. He is slowly falling down the curve, but it is gradual enough that our team is quite pleased with his progress.
His breathing and oxygen levels are also unchanged from our last appointment, which means that he is holding his own. He is still working hard to breathe, and his oxygen is sitting at about 86% when he is resting, but considering the heart condition that he was born with, he is doing pretty well.
My husband and I have decided that when G has recovered from his surgery, we are taking a family vacation. I think we have earned it. We are hoping to go somewhere quiet, peaceful, and close to home and hospitals. Sooke and Shawnigan Lake seem like good options, being both beautiful and close to our cardiologist in Victoria. Rathtrevor is also very nice and close to home. Thinking about our first vacation as a family is a very pleasant distraction from G's illness.
We are so thankful for our family and friends who have stepped up and helped us out over the past month with meals, visits, errands, and kindness. You guys are the best!!! We are finally feeling that we can stand on our own feet again, at least for now. We feel so fortunate to be close to both of our families, who have been SO helpful and supportive. THANK YOU!
Our next appointment will be in Victoria, probably in about two weeks. Until then, we play and love and, most of all, live.
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