Life, it would seem, is moving forward.
I haven't posted in about a month, mostly because there hasn't been much to report. Little G is a typical seven monther. He loves snuggles, doesn't trust solid foods, and gives grand speeches a few times a day. In those speeches, he sounds like a political leader rallying the support of an oppressed minority. I imagine him saying "We, the babies, deserve more playtime. Stand with me, friends, and we will banish naps forever!" His repertoire of sounds is growing, and his range of expression has exploded.
You can probably already tell that, compared with previous posts, this entry will be a little boring. The insult has passed and now we are simply recovering. The process doesn't make for interesting writing, but it has honestly been exhausting.
Little G is just beginning to trust new people. It is quite obvious that he does not feel secure with antone other than his parents. He cries in his sleep and awakens in terror. Sometimes it is difficult to tell where the scars of trauma end and where his own temperament begins. He has always been wary and very dependent on his parents, but his needs have definitely intensified since his surgery. When we took him to get his vaccines, he was quite content until we entered the nurses office. He immediately began shaking in my arms. I believe that, although he will not have clear memories of his hospital stay for long, it will leave indelible marks on his mind and soul.
My husband and I are also recovering. I have been reading blogs written by other heart families often. It makes our experience feel more real. I look forward to the day when I don't feel compelled to learn about these sick babies. It's emotionally exhausting.
I learned through Facebook that one little girl, who was a few beds down from us in the ICU, lost her battle on the same day we were discharged. I saw her sitting outside of surgical daycare as we came back from X ray on the day before G 's surgery. I could tell that she was a heart baby by the blue tinge to her face. I checked on her every time I passed her bed in the ICU and hoped that she would recover. I still think of her often, and of her family who I never met.
I always thought of G as relatively healthy, but he wasn't. He was in a room with the sickest kids in the province. Two months later, I am still not quite ready to accept this reality.
We made it to the cardiologist this week. G is OK, right where we expect him to be. His pulmonic valve is very leaky due to the aggressive patch that was used in his repair. We will wait and see what this means for his heart function and his energy levels as he gets older. He might need a procedure or two completed through a catheter in the next five years or so. The first would repair a small hole leftover from the surgery if it doesn't fill in on its own. The second would use an inflatable balloon to widen his pulmonary arteries, reducing the stress on his leaky valve.
We also learned that he will almost certainly need to have his leaky valve replaced eventually. Luckily, the time frame is not months or years, but decades. The cardiologist couldn't say how long until the valve needs replacement - it's still far to early to know - but his best guess was about 20 years.
Pulmonic valves have typically been replaced via open heart surgery. However, we are just entering the age where they can be replaced through a catheter. Only certain patients qualify, but we probably have 20 years or so for the science to evolve. I am optimistic that this technique will be well established by the time G needs a replacement, and that he can avoid another open heart operation.
For now, we live and we heal. We took our first family vacation. It was only half an hour from home, but it was just what we needed. We spend three nights in a condo at the beach, and took G to the Italian restaurant where we were married. We celebrated Halloween. G wore a monkey costume hand made by my mom and inspired by one of the intensivists at Children's Hospital. She frequently called G a "chunky little monkey." And now we are looking forward to Christmas - our first as a family of three.
Our cardiologist told us to break out of the metaphorical bubble as G is now strong enough to handle colds. He suggested that we go out for coffee, shopping, and even go to the pool. Honestly, the pool and its germs are still a little scary for me. But G and I have been taking trips out in public, and he even plays with the community toys in the malls. And I don't even wipe them off first. Baby steps, right?
I will try to update this blog periodically, but it will likely be a monthly thing. Until next time...
Friday, 6 November 2015
Monday, 28 September 2015
Normal
Sorry for not posting sooner. We have been very busy enjoying life with an energetic six monther.
G has settled back into a normal routine. At first, he needed extra snuggles and attention to calm his frazzled nerves. Placing him on his back would result in a fit of hysterics. It seems that the poor kid was a little traumatized by his stay in the hospital. Recently, he is back to his old ways, but with a few improvements.
He laughs ALL the time. Everything is hilarious to this silly nut. Before his surgery, getting a giggle was hard work. Now, sometimes I can just smile at him and he will burst into laughter.
He gives a zillion kisses. He loved to give smooches out before, but has intensified his desire to plant sticky wet ones on unsuspecting victims... I mean lucky recipients.
He "blisses out." Now that breathing is not such hard work, he can actually relax. Watching him experience this sensation for the first time was strange and wonderful. He just lay in my arms, smiling up at me. He wasn't busy or especially interactive, but simply content.
We now have appointments with the nurse clinician every few weeks, and the GP as needed. The pediatrician popped in for a visit at our last appointment, too. We feel like VIP up in Peds. We saw the cardiologist a couple of weeks ago, and will see him again at the beginning of November. All of these appointments help us make sure that G is healing as he is supposed to.
So far he is gaining weight at the quickest rate in his life. His oxygen saturation is always in the high 90's, sometimes even 100%. He has some leaking in his pulmonary valve, which was expected given the aggressive patch that was used. His tricuspid valve, located between the right atrium and ventricle, is also a little leaky. It was well formed, and its decreased function is a casualty of the surgery. The cardiologist explained that it was "shoved out of the way" when the patch was placed over the hole between the ventricles, and now the leafs don't align perfectly.
We will be watching to make sure that the pulmonary arteries grow with G, and that the PFO (a hole between the atria, left by the surgeon to relieve right heart pressure ) closes on its own. If it doesn't, a surgeon will close it in five years or so by using a tool on a catheter threaded up a vein.
In the long term, we will be watching the pulmonary valve function. Over time, the leaf of the valve from the donor patch will deteriorate, decreasing valve competence. There is a decent chance that he will need the valve replaced in adulthood.
Less time is spent thinking about hearts these days. Most of our time is spent playing and napping. We have been ordered to live in a bit of a bubble for the next while to prevent illness while the baby recovers. Home is our sanctuary. We play (often ), clean (sometimes ), sing (poorly but proudly ) , and carry on with life as usual.
The baby is hugged often. We are so grateful for him. But as wonderful as gratitude is, I hope that this constant feeling of being thankful that he is breathing fades away. It's exhausting living this way. His death still fills my dreams almost every night. I long for the days when most of my thanks are given for trivial things: a meal from a friend, a favour from a neighbour, or a gift from my spouse. Some day, the line between life and death will not seem so immediately important, and we can get wrapped up in living.
As far as milestones go, G is doing very well at sitting on his own, and is trying to cut that first tooth. His gum has had a swollen lump for about 5 days now, but that pearly white is just waiting for the right time to show.
It seems that I will be ending this post here. It's late and my bed is calling. I will try to keep up this blog, but my son seems to keep me pretty busy. Posts will likely be intermittent.
Love.
G has settled back into a normal routine. At first, he needed extra snuggles and attention to calm his frazzled nerves. Placing him on his back would result in a fit of hysterics. It seems that the poor kid was a little traumatized by his stay in the hospital. Recently, he is back to his old ways, but with a few improvements.
He laughs ALL the time. Everything is hilarious to this silly nut. Before his surgery, getting a giggle was hard work. Now, sometimes I can just smile at him and he will burst into laughter.
He gives a zillion kisses. He loved to give smooches out before, but has intensified his desire to plant sticky wet ones on unsuspecting victims... I mean lucky recipients.
He "blisses out." Now that breathing is not such hard work, he can actually relax. Watching him experience this sensation for the first time was strange and wonderful. He just lay in my arms, smiling up at me. He wasn't busy or especially interactive, but simply content.
We now have appointments with the nurse clinician every few weeks, and the GP as needed. The pediatrician popped in for a visit at our last appointment, too. We feel like VIP up in Peds. We saw the cardiologist a couple of weeks ago, and will see him again at the beginning of November. All of these appointments help us make sure that G is healing as he is supposed to.
So far he is gaining weight at the quickest rate in his life. His oxygen saturation is always in the high 90's, sometimes even 100%. He has some leaking in his pulmonary valve, which was expected given the aggressive patch that was used. His tricuspid valve, located between the right atrium and ventricle, is also a little leaky. It was well formed, and its decreased function is a casualty of the surgery. The cardiologist explained that it was "shoved out of the way" when the patch was placed over the hole between the ventricles, and now the leafs don't align perfectly.
We will be watching to make sure that the pulmonary arteries grow with G, and that the PFO (a hole between the atria, left by the surgeon to relieve right heart pressure ) closes on its own. If it doesn't, a surgeon will close it in five years or so by using a tool on a catheter threaded up a vein.
In the long term, we will be watching the pulmonary valve function. Over time, the leaf of the valve from the donor patch will deteriorate, decreasing valve competence. There is a decent chance that he will need the valve replaced in adulthood.
Less time is spent thinking about hearts these days. Most of our time is spent playing and napping. We have been ordered to live in a bit of a bubble for the next while to prevent illness while the baby recovers. Home is our sanctuary. We play (often ), clean (sometimes ), sing (poorly but proudly ) , and carry on with life as usual.
The baby is hugged often. We are so grateful for him. But as wonderful as gratitude is, I hope that this constant feeling of being thankful that he is breathing fades away. It's exhausting living this way. His death still fills my dreams almost every night. I long for the days when most of my thanks are given for trivial things: a meal from a friend, a favour from a neighbour, or a gift from my spouse. Some day, the line between life and death will not seem so immediately important, and we can get wrapped up in living.
As far as milestones go, G is doing very well at sitting on his own, and is trying to cut that first tooth. His gum has had a swollen lump for about 5 days now, but that pearly white is just waiting for the right time to show.
It seems that I will be ending this post here. It's late and my bed is calling. I will try to keep up this blog, but my son seems to keep me pretty busy. Posts will likely be intermittent.
Love.
Saturday, 12 September 2015
A quick update
We are all home now, safe and sound. I will write more when I have some time. We are happy, healthy, and ready for sleep! Good night.
Wednesday, 9 September 2015
An apology to a few doctors
Within a few days of G's diagnosis, I posted about my frustration with the delay to see a specialist. I was coming to terms with reality. My baby had a life threatening disease. Specifically, I wondered how so many professionals had missed the signs. I should cut them a little slack.
When the surgeon first met G, he said that the baby was too healthy to have Tet. We now know that two additional defects, PDA and PFO, rerouted more blood to the lungs. He did not appear sick. If the surgeon - one of two people who see all Tet babies in the province - says he seemed too healthy, I guess the signs weren't so obvious.
The blueness around his lips did not go away, even when his oxygen saturation was 100%. I guess that is just his colouring. When the docs "missed" his cyanosis, there was no cyanosis to miss.
I will be letting the doctors know about G's special circumstances. For now, I am just so happy that his heart was successfully repaired. Life is good!
Discharged
G was discharged yesterday afternoon! Yahoo!
We are staying in Vancouver until his follow up appointment on Friday. Then , pending some test results, we will be coming home to the Island!
As soon as we strapped the baby into the stroller yesterday, he was smiling ear to ear. He usually isn't a huge fan of it, but I think he understood that we were leaving the hospital.
We are so thankful for the excellent care he received during our stay. While he was in the ICU, a team of intensivists and the cardiology department saw him for rounds twice per day. They made all decisions together. We didn't need to ask about a second opinion; there were always a dozen opinions! We had daily consults from general surgery from the day he had bowel problems until the day we left the hospital. We had an ICU nurse taking care of G one-on-one. On the ward, he was checked every hour. The staff understands that medicine and tests can be important, but so is comfort and sleep and nutrition. They always weighed decisions and used their better judgement. I am so impressed by the competence and compassion of the hospital staff.
Now we have a couple of free days here in Vancouver. We are going to focus on relaxing and having fun !
We are staying in Vancouver until his follow up appointment on Friday. Then , pending some test results, we will be coming home to the Island!
As soon as we strapped the baby into the stroller yesterday, he was smiling ear to ear. He usually isn't a huge fan of it, but I think he understood that we were leaving the hospital.
We are so thankful for the excellent care he received during our stay. While he was in the ICU, a team of intensivists and the cardiology department saw him for rounds twice per day. They made all decisions together. We didn't need to ask about a second opinion; there were always a dozen opinions! We had daily consults from general surgery from the day he had bowel problems until the day we left the hospital. We had an ICU nurse taking care of G one-on-one. On the ward, he was checked every hour. The staff understands that medicine and tests can be important, but so is comfort and sleep and nutrition. They always weighed decisions and used their better judgement. I am so impressed by the competence and compassion of the hospital staff.
Now we have a couple of free days here in Vancouver. We are going to focus on relaxing and having fun !
Tuesday, 8 September 2015
Children's Hospital day 7 - Finally out of the ICU
I wrote this yesterday, but forgot to post it. So imagine that you are reading it on Monday.
On Saturday, G was sent to ICU isolation because of a suspected cold. The virus panel came back negative, but we got about 24 hours in a nice private room.
Yesterday, we were discharged from the ICU and sent up to the cardiac ward. They were waiting for normal kidney function and a couple of bloodless bowel movements. General surgery said that I could breastfeed. Originally, we thought G would be bottle fed, but the surgeon said we could feed ad lib. G was back to himself within a few hours of getting back on the breast. He is smiling and playing, and even gave me a kiss this morning.
The ward is much quieter than the ICU. We have a large private room, and there is a bed for me to sleep on. One nurse covers several patients, so a lot of the care is left up to us. It suits us quite well. The baby is a happy camper, although he has reverted to old habits like comfort nursing.
He isn't hooked up to much any more. He dislodged his central line (which was stitched in place), so it was removed. While it was being taken out, he kicked so much that his foot IV became unusable, so it was removed as well. He just has one IV site on his hand, three telemetry wires on his chest to measure breathing and heart rhythm, and an oxygen saturation probe on his toe.
Pro tip: if your baby ever needs blood tests or similar procedures done, leave it to the pros. It is tempting to try to comfort the baby during the test. This is a mistake. G started seeing us as the bad guys who were hurting him. It was better for us to leave the room and rush in as soon as the test was finished to comfort him. Hearing him screaming in pain was terrible, but seeing him reject me was worse. We are back to normal now, but he wasn't too happy with mom and dad for a while.
On Saturday, G was sent to ICU isolation because of a suspected cold. The virus panel came back negative, but we got about 24 hours in a nice private room.
Yesterday, we were discharged from the ICU and sent up to the cardiac ward. They were waiting for normal kidney function and a couple of bloodless bowel movements. General surgery said that I could breastfeed. Originally, we thought G would be bottle fed, but the surgeon said we could feed ad lib. G was back to himself within a few hours of getting back on the breast. He is smiling and playing, and even gave me a kiss this morning.
The ward is much quieter than the ICU. We have a large private room, and there is a bed for me to sleep on. One nurse covers several patients, so a lot of the care is left up to us. It suits us quite well. The baby is a happy camper, although he has reverted to old habits like comfort nursing.
He isn't hooked up to much any more. He dislodged his central line (which was stitched in place), so it was removed. While it was being taken out, he kicked so much that his foot IV became unusable, so it was removed as well. He just has one IV site on his hand, three telemetry wires on his chest to measure breathing and heart rhythm, and an oxygen saturation probe on his toe.
Pro tip: if your baby ever needs blood tests or similar procedures done, leave it to the pros. It is tempting to try to comfort the baby during the test. This is a mistake. G started seeing us as the bad guys who were hurting him. It was better for us to leave the room and rush in as soon as the test was finished to comfort him. Hearing him screaming in pain was terrible, but seeing him reject me was worse. We are back to normal now, but he wasn't too happy with mom and dad for a while.
Saturday, 5 September 2015
Children's Hospital day 5
Yeaterday was an interesting day. G's kidney function went back to normal, which we are really happy about. His recovery, sparing his gut complication, is going quite well. He had a bunch of tubes and wires removed, and now only has two iv sites, an oxygen sat probe, and a central line in.
The only reason we are still in ICU is the gut complication. He had another bloody diaper two nights ago, and one more yesterday afternoon. The blood is getting darker (so not fresh) and the volume smaller, but there is still quite a bit of it. It gives him the smelliest farts.
He was given a diuretic which ended up driving his potassium too low, so his heart rhythm got a little wonky. Once his potassium got topped up, he was fine.
The biggest issue is that he can't eat anything by mouth until his poop is normal. He is so hangry. He only wanted mom and dad last night, so I spent the night in icu with him. The intensivist on last night was eager to see if we could settle him with creature comforts instead of drugs, which I was thankful for.
Today he had a normal poop (Yay! ) but poor urine output (boo! ) They want to check his creatinine levels again, but his central line won't give up any blood. I am not sure what they will try as they are avoiding poking him again.
We got the ok from general surgery to give a little tylenol and Pedia sure by mouth. He had 10 ml of the pediasure and loved it! If he tolerates it, he can have 15 ml in a few hours. We are going slow to go easy on the gut.
His next bed neighbour got to go upstairs today after two very tense weeks in icu. We are so happy for them!
That's all for now. I am heading back in to see him.
The only reason we are still in ICU is the gut complication. He had another bloody diaper two nights ago, and one more yesterday afternoon. The blood is getting darker (so not fresh) and the volume smaller, but there is still quite a bit of it. It gives him the smelliest farts.
He was given a diuretic which ended up driving his potassium too low, so his heart rhythm got a little wonky. Once his potassium got topped up, he was fine.
The biggest issue is that he can't eat anything by mouth until his poop is normal. He is so hangry. He only wanted mom and dad last night, so I spent the night in icu with him. The intensivist on last night was eager to see if we could settle him with creature comforts instead of drugs, which I was thankful for.
Today he had a normal poop (Yay! ) but poor urine output (boo! ) They want to check his creatinine levels again, but his central line won't give up any blood. I am not sure what they will try as they are avoiding poking him again.
We got the ok from general surgery to give a little tylenol and Pedia sure by mouth. He had 10 ml of the pediasure and loved it! If he tolerates it, he can have 15 ml in a few hours. We are going slow to go easy on the gut.
His next bed neighbour got to go upstairs today after two very tense weeks in icu. We are so happy for them!
That's all for now. I am heading back in to see him.
Friday, 4 September 2015
Quick day 4 morning update
Creatinine is way down!!!! That means his kidneys are much better. He is more himself this morning. They plan to remove some of the tubes in his body today. Life is good.
Children's Hospital day 2 + 3
Today was surgery day. We reported to surgical daycare at 7 am. We dressed G in a hospital gown and got to snuggle him until about 8:30 while various doctors and nurses came to see us. Even though he was fasting, he was still a happy boy. The nurses were stopping on their way by to smile and talk to him. He was given a sedative to keep him calm when he was taken to the operating room. It's a funny experience to see your baby get stoned. He was really chatty!
We decided to go out and have breakfast with our parents to distract ourselves. We were given a pager that would go off when the surgery was done. We met with the surgeon post op in the mid afternoon. I love this man. He is so kind and brilliant.
G had a transannular repair, which means that part of his pulmonary valve and artery are from a donor. His coronary arteries were in the right place, and he hadn't grown any new blood vessels which could complicate surgery. He did have patent ductus arteriosis and patent foramen ovale, two other defects. These are a duct and a hole that are present in the fetus but normally close after birth. His did not, which allowed extra blood to reach his lungs. But his pulmonary valve was extremely tiny. So his really bad heart was compensated by two other defects. We have been saying that he had a problem so he MacGyvered himself a working-ish heart.
We were able to see him a while later. He had lots of tubes and wires : oxygen prongs in his nose, two chest tubes to drain fluid around his heart, pacing wires which could be hooked up to an external pace maker if needed, a central line in his neck, an arterial line in his wrist to monitor blood pressure and take blood for tests, and an IV. He was on a sedative and morphine, so he was really groggy, but he was doing really well.
We stayed with him until about 10 pm. At that time they were talking about moving him to the ward the next morning. We decided to go home to get some sleep.
The hospital called around 12:30 to inform us that G had taken a big poop of mostly blood. They had taken him for an abdominal x-ray, which came back clear. His abdomen was soft (good) and not swollen (good). They said they would call us if anything happened - a diagnosis or another episode. We didn't hear from them, and went back about 7am.
G's creatinine is elevated, which means that there is some sort of injury to his kidney. Bypass during surgery is very hard on kidneys, plus G had a CT with kidmey-toxic dye just before his surgery, plus they kept him a little dehydrated (which is hard on kidneys) post op to help his heart and lungs. It continued to climb yesterday and we are waiting for it to start to decrease.
So he has complications with his kidneys and intestines. A general surgeon came by and examined him. He is being fed through an IV to give his gut a chance to rest for a few days. He will be put on more antibiotics if needed. His fluids have been increased and he is off all of his pain meds. He was still groggy for most of yesterday, but around 9 pm we saw some of our baby emerge from the sleepy zombie. He babbled and even played a little. That recharged us after a day of complications.
Oh and I got to hold him yesterday! It was heavenly.
Heading back to hospital now. We will be in ICU for a few more days, maybe on the cardiac ward by Saturday if all goes well.
We decided to go out and have breakfast with our parents to distract ourselves. We were given a pager that would go off when the surgery was done. We met with the surgeon post op in the mid afternoon. I love this man. He is so kind and brilliant.
G had a transannular repair, which means that part of his pulmonary valve and artery are from a donor. His coronary arteries were in the right place, and he hadn't grown any new blood vessels which could complicate surgery. He did have patent ductus arteriosis and patent foramen ovale, two other defects. These are a duct and a hole that are present in the fetus but normally close after birth. His did not, which allowed extra blood to reach his lungs. But his pulmonary valve was extremely tiny. So his really bad heart was compensated by two other defects. We have been saying that he had a problem so he MacGyvered himself a working-ish heart.
We were able to see him a while later. He had lots of tubes and wires : oxygen prongs in his nose, two chest tubes to drain fluid around his heart, pacing wires which could be hooked up to an external pace maker if needed, a central line in his neck, an arterial line in his wrist to monitor blood pressure and take blood for tests, and an IV. He was on a sedative and morphine, so he was really groggy, but he was doing really well.
We stayed with him until about 10 pm. At that time they were talking about moving him to the ward the next morning. We decided to go home to get some sleep.
The hospital called around 12:30 to inform us that G had taken a big poop of mostly blood. They had taken him for an abdominal x-ray, which came back clear. His abdomen was soft (good) and not swollen (good). They said they would call us if anything happened - a diagnosis or another episode. We didn't hear from them, and went back about 7am.
G's creatinine is elevated, which means that there is some sort of injury to his kidney. Bypass during surgery is very hard on kidneys, plus G had a CT with kidmey-toxic dye just before his surgery, plus they kept him a little dehydrated (which is hard on kidneys) post op to help his heart and lungs. It continued to climb yesterday and we are waiting for it to start to decrease.
So he has complications with his kidneys and intestines. A general surgeon came by and examined him. He is being fed through an IV to give his gut a chance to rest for a few days. He will be put on more antibiotics if needed. His fluids have been increased and he is off all of his pain meds. He was still groggy for most of yesterday, but around 9 pm we saw some of our baby emerge from the sleepy zombie. He babbled and even played a little. That recharged us after a day of complications.
Oh and I got to hold him yesterday! It was heavenly.
Heading back to hospital now. We will be in ICU for a few more days, maybe on the cardiac ward by Saturday if all goes well.
Tuesday, 1 September 2015
Children's Hospital day 1
Today was pre-admission day. We spent most of the day at the hospital. G had an ECHO, ECG, blood work, a chest X-ray, and a physical exam. We also had a chance to meet the surgeon.
G was very well behaved for his ECHO. He was not allowed to sit on my lap, but he kept his cool. We needed two short breaks, but overall a good experience. He also did very well during his ECG.
The blood work was a different story. His vein collapsed twice. We had to hold him down really tight and he screamed the entire time. At one point, his fingers started going blue, and his vein wasn't giving blood anyway, so I stopped the test and snuggled my baby. The third time was the charm, and we got it done. Afterward, dad and I had some much needed chocolate (dropped off by another awesome heart family ) and G had a cuddle and a snooze.
The chest X-ray was better. G was strapped to a board. He protested a wee bit, but it was all over pretty quickly.
Next we met with the surgeon. He introduced himself to the baby first and had a little cuddle. This guy is awesome! He then informed us about the surgery. He was really thorough. There are two big concerns with our case.
G is bigger and healthier than he should be. This may indicate that his body has grown more blood vessels to improve circulation to his lungs. These hypothetical vessels would make it difficult to put G on bypass during the surgery, and may lead to lung congestion afterwards. I am hopeful that he is so healthy because I was so diligent in feeding him often and that we don't need to worry about these vessels.
Issue number two: the coronary arteries could not be located on the ECHO. Since a nick in a CA would be fatal, the surgeon needs to know where they are. Once G is put under anesthesia tomorrow, he will have another ECHO. If that fails, he will have an MRI. The location of the CAs will determine the surgical approach. He doesn't know how much of the pulmonary valve he will be able to preserve. If he protects the whole thing, G has a better chance of never needing reoperation. If he slices through it, G is less likely to need reoperation in childhood than option 1, but very likely to need it adulthood. If the CA are in a really bad spot, G will have a conduit placed to increase blood flow to the lungs and will need several operations to replace it as he grows. We are hoping for anything but option 3.
We report at 7 am tomorrow for surgery. G will not be able to nurse after 4am but can have a sugar water solution until 6 am. The operation will last 4 to 6 hours.
For now, we will be cuddling and playing and enjoying this time together.
G was very well behaved for his ECHO. He was not allowed to sit on my lap, but he kept his cool. We needed two short breaks, but overall a good experience. He also did very well during his ECG.
The blood work was a different story. His vein collapsed twice. We had to hold him down really tight and he screamed the entire time. At one point, his fingers started going blue, and his vein wasn't giving blood anyway, so I stopped the test and snuggled my baby. The third time was the charm, and we got it done. Afterward, dad and I had some much needed chocolate (dropped off by another awesome heart family ) and G had a cuddle and a snooze.
The chest X-ray was better. G was strapped to a board. He protested a wee bit, but it was all over pretty quickly.
Next we met with the surgeon. He introduced himself to the baby first and had a little cuddle. This guy is awesome! He then informed us about the surgery. He was really thorough. There are two big concerns with our case.
G is bigger and healthier than he should be. This may indicate that his body has grown more blood vessels to improve circulation to his lungs. These hypothetical vessels would make it difficult to put G on bypass during the surgery, and may lead to lung congestion afterwards. I am hopeful that he is so healthy because I was so diligent in feeding him often and that we don't need to worry about these vessels.
Issue number two: the coronary arteries could not be located on the ECHO. Since a nick in a CA would be fatal, the surgeon needs to know where they are. Once G is put under anesthesia tomorrow, he will have another ECHO. If that fails, he will have an MRI. The location of the CAs will determine the surgical approach. He doesn't know how much of the pulmonary valve he will be able to preserve. If he protects the whole thing, G has a better chance of never needing reoperation. If he slices through it, G is less likely to need reoperation in childhood than option 1, but very likely to need it adulthood. If the CA are in a really bad spot, G will have a conduit placed to increase blood flow to the lungs and will need several operations to replace it as he grows. We are hoping for anything but option 3.
We report at 7 am tomorrow for surgery. G will not be able to nurse after 4am but can have a sugar water solution until 6 am. The operation will last 4 to 6 hours.
For now, we will be cuddling and playing and enjoying this time together.
Sunday, 30 August 2015
Children's Hospital stay
Tomorrow is departure day. That came up quickly.
Many people have been asking what G's recovery will look like. Here's the plan. Keep in mind that every recovery is different, and we will take it at the pace that G heals.
Tomorrow we travel to Vancouver and check in at Easter Seals House. Thank you to Variety for funding up to 30 days of our stay. Hopefully we are only there for 2 weeks.
On Tuesday, G will have a bunch of tests, including an ECHO to look at his heart, an ECG to learn about how hard his heart is working and its rhythm, a physical exam, blood work, and maybe a chest X-ray. We will meet with the surgeon, anesthesiologist, and nurse practitioner. It's an all day affair, lasting 5 to 8 hours.
The next day is operation day. I think that G only has to fast for 4 hours because breast milk is digested so quickly. We will find out for sure on Tuesday. The operation will probably be somewhere in the neighborhood of 4 hours (will update when I know more.)
After the operation, the baby will recover in the ICU for a couple of days. He will probably be attached to a lot of tubes and wires, especially at first. I have been told that the doctors try to remove them as early as it is safe to do so, because comfortable babies recover more quickly. Dad and I will not be able to sleep there with him, but we are not considered visitors either so we can stay as long as we want.
After the ICU, G will stay on the cardiac ward for about a week. I will be able to sleep beside him! Most babies don't have many activity restrictions because they are not playing contact sports yet. We do have to pick him up with support under his head and bum (like a newborn ) instead of grabbing underneath his arms until his breastbone heals, probably in 3 weeks or so.
Once his is discharged, we will all stay at Easter Seal for a few more days. We need to be close to the hospital until his follow up, about 2 weeks after surgery. Once we get the all clear, we will come home to the Island.
There are a lot of little rules that we need to follow, like no baths until the incision is well healed, and be vigilant about watching for infection. But it sounds like the babies bounce back pretty fast. Our cardiologist said that after the surgery, G will get sicker before he gets better. Fair enough. The heart has to adjust and repair itself. This will be tough for me and dad. We are used to frequent smiles and cuddles. But in a few weeks, we will be back home with a baby whose heart goes thump thump thump instead of swish swish swish.
Many people have been asking what G's recovery will look like. Here's the plan. Keep in mind that every recovery is different, and we will take it at the pace that G heals.
Tomorrow we travel to Vancouver and check in at Easter Seals House. Thank you to Variety for funding up to 30 days of our stay. Hopefully we are only there for 2 weeks.
On Tuesday, G will have a bunch of tests, including an ECHO to look at his heart, an ECG to learn about how hard his heart is working and its rhythm, a physical exam, blood work, and maybe a chest X-ray. We will meet with the surgeon, anesthesiologist, and nurse practitioner. It's an all day affair, lasting 5 to 8 hours.
The next day is operation day. I think that G only has to fast for 4 hours because breast milk is digested so quickly. We will find out for sure on Tuesday. The operation will probably be somewhere in the neighborhood of 4 hours (will update when I know more.)
After the operation, the baby will recover in the ICU for a couple of days. He will probably be attached to a lot of tubes and wires, especially at first. I have been told that the doctors try to remove them as early as it is safe to do so, because comfortable babies recover more quickly. Dad and I will not be able to sleep there with him, but we are not considered visitors either so we can stay as long as we want.
After the ICU, G will stay on the cardiac ward for about a week. I will be able to sleep beside him! Most babies don't have many activity restrictions because they are not playing contact sports yet. We do have to pick him up with support under his head and bum (like a newborn ) instead of grabbing underneath his arms until his breastbone heals, probably in 3 weeks or so.
Once his is discharged, we will all stay at Easter Seal for a few more days. We need to be close to the hospital until his follow up, about 2 weeks after surgery. Once we get the all clear, we will come home to the Island.
There are a lot of little rules that we need to follow, like no baths until the incision is well healed, and be vigilant about watching for infection. But it sounds like the babies bounce back pretty fast. Our cardiologist said that after the surgery, G will get sicker before he gets better. Fair enough. The heart has to adjust and repair itself. This will be tough for me and dad. We are used to frequent smiles and cuddles. But in a few weeks, we will be back home with a baby whose heart goes thump thump thump instead of swish swish swish.
Thursday, 27 August 2015
Family outing, an eye appointment, and one last week
Yesterday marked one week until G's operation date. My husband has taken parental leave from work, and we took advantage of our time together with an impromptu trip to Ladysmith.
I have heard many times that the Ladysmith bakery has the best cinnamon buns around, so we decided to find out if the rumors were true. We were not disappointed. My husband ranks them second only to the ones we had in Maui, so we will call them the best on this side of the Pacific.
Afterward, we stumbled upon Transfer Beach. Neither of us had been there before, but we will certainly be back. It's like a smaller, quieter version of Parksville beach (for the local readers), complete with a beach volleyball court, kayak rental, playground, and ice cream shop /chip stand. My husband and I prefer peace and quiet to bells and whistles, and we prefer cinnamon buns to no cinnamon buns, so we might have to use Transfer Beach as a destination instead of Parksville.
Today, G had an appointment with the ophthalmologist to check out a tiny fleck in his right pupil. Our little man was very well behaved, charming the other patients in the waiting room, and being still and calm during the exam. He was given drops to dilate his pupils. It made him look so cute! After some searching (the fleck is the size of a grain of sand) the doctor diagnosed G with an itsy bitsy congenital cataract. The good news is that it is not affecting the baby's vision or development. The doctor asked if we would like to be seen by a pediatric ophthalmologist in Victoria, since he would be more familiar with congenital eye defects. Since we travel down island to see the cardiologist anyway, we decided that it would be worth while. If he seconds the diagnosis, then we will be seeing the ophthalmologist once or twice a year to make sure that the cataract isn't getting larger.
This opens up a can of worms. Congenital cataracts are relatively rare, and having both a cataract and tetralogy of fallot is a little bit like being struck by lightning twice. We wonder if G could have some sort of syndrome, and potentially more defects. On one hand, unilateral cataracts (occurring in only one eye) are not typically syndromic. On the other hand, the chances of G being struck by both by chance is not more than 1 in 4 000 000, likely even more remote. We will be in touch with the pediatrician to discuss this, but probably not until after G recovers from his operation.
I have heard many times that the Ladysmith bakery has the best cinnamon buns around, so we decided to find out if the rumors were true. We were not disappointed. My husband ranks them second only to the ones we had in Maui, so we will call them the best on this side of the Pacific.
Afterward, we stumbled upon Transfer Beach. Neither of us had been there before, but we will certainly be back. It's like a smaller, quieter version of Parksville beach (for the local readers), complete with a beach volleyball court, kayak rental, playground, and ice cream shop /chip stand. My husband and I prefer peace and quiet to bells and whistles, and we prefer cinnamon buns to no cinnamon buns, so we might have to use Transfer Beach as a destination instead of Parksville.
Today, G had an appointment with the ophthalmologist to check out a tiny fleck in his right pupil. Our little man was very well behaved, charming the other patients in the waiting room, and being still and calm during the exam. He was given drops to dilate his pupils. It made him look so cute! After some searching (the fleck is the size of a grain of sand) the doctor diagnosed G with an itsy bitsy congenital cataract. The good news is that it is not affecting the baby's vision or development. The doctor asked if we would like to be seen by a pediatric ophthalmologist in Victoria, since he would be more familiar with congenital eye defects. Since we travel down island to see the cardiologist anyway, we decided that it would be worth while. If he seconds the diagnosis, then we will be seeing the ophthalmologist once or twice a year to make sure that the cataract isn't getting larger.
This opens up a can of worms. Congenital cataracts are relatively rare, and having both a cataract and tetralogy of fallot is a little bit like being struck by lightning twice. We wonder if G could have some sort of syndrome, and potentially more defects. On one hand, unilateral cataracts (occurring in only one eye) are not typically syndromic. On the other hand, the chances of G being struck by both by chance is not more than 1 in 4 000 000, likely even more remote. We will be in touch with the pediatrician to discuss this, but probably not until after G recovers from his operation.
Monday, 24 August 2015
The Question
Dear son,
I cannot plan your first birthday party. Pinterest is ready and waiting with themes and gift ideas and decorations. My sister in law has sent me coupons for paper plates and banners, but I can't look at them. I sometimes wonder what the cake flavour might be - the first cake you will taste - but I stop short of imagining the options.
I cannot prepare for your first Christmas. You will need a stocking to hang, but I don't think about what it might look like or be stuffed with. This December will be filled with crafts, but I am not selecting the most promising ones from the Internet. I am not getting excited about family cards or photos with Santa.
Even Halloween, a few short months away, is beyond my ability to fathom. Last week, I thought about what costume I would ask your grandmother to make you. But now those thoughts are tucked away. The costumes are out already at Costco. People debate whether it's too early to purchase Halloween merchandise. No debate here. It's too soon.
I can't fantasize about these happy occasions because of the looming question : will you be here with us? I know that your chances of survival are excellent. I know I must stay positive. I know that well meaning friends will tell me not to think this way. But the question hangs around me like smoke. When I try look forward, it blurs my vision and stings my eyes with tears. I can't plan a life when I don't know if you will be here. I just can't.
I am living in the moment, not because I want to, but because it's all that I can handle right now. The future is too difficult. I am trying to squeeze out all of the love in our days together. That is why I take every opportunity to kiss you, dear son. That is why I try so damn hard to convince you to kiss me back. It is why I find excuses to hold you; I tell our family you need me, but really I am the one who needs you.
But I do imagine being reunited with you after the operation. You will probably be sleepy from the medicine. You won't smile. But I imagine that you will Be. And despite the wires and tubes and machines and fluids, we will be together. It's as far ahead as I can plan, but it's just far enough to keep a smile on my face today, in this moment.
I cannot plan your first birthday party. Pinterest is ready and waiting with themes and gift ideas and decorations. My sister in law has sent me coupons for paper plates and banners, but I can't look at them. I sometimes wonder what the cake flavour might be - the first cake you will taste - but I stop short of imagining the options.
I cannot prepare for your first Christmas. You will need a stocking to hang, but I don't think about what it might look like or be stuffed with. This December will be filled with crafts, but I am not selecting the most promising ones from the Internet. I am not getting excited about family cards or photos with Santa.
Even Halloween, a few short months away, is beyond my ability to fathom. Last week, I thought about what costume I would ask your grandmother to make you. But now those thoughts are tucked away. The costumes are out already at Costco. People debate whether it's too early to purchase Halloween merchandise. No debate here. It's too soon.
I can't fantasize about these happy occasions because of the looming question : will you be here with us? I know that your chances of survival are excellent. I know I must stay positive. I know that well meaning friends will tell me not to think this way. But the question hangs around me like smoke. When I try look forward, it blurs my vision and stings my eyes with tears. I can't plan a life when I don't know if you will be here. I just can't.
I am living in the moment, not because I want to, but because it's all that I can handle right now. The future is too difficult. I am trying to squeeze out all of the love in our days together. That is why I take every opportunity to kiss you, dear son. That is why I try so damn hard to convince you to kiss me back. It is why I find excuses to hold you; I tell our family you need me, but really I am the one who needs you.
But I do imagine being reunited with you after the operation. You will probably be sleepy from the medicine. You won't smile. But I imagine that you will Be. And despite the wires and tubes and machines and fluids, we will be together. It's as far ahead as I can plan, but it's just far enough to keep a smile on my face today, in this moment.
Monday, 17 August 2015
Update #6
Last Tuesday, I took the baby to get his immunizations. I had been dreading this for some time. The hospital requires his shots to be up to date, so putting the needles off until after his operation isn't an option. I made a plan incase he had a Tet spell and filled in the nurse, and then had a long, deep breath before we got started.
He did so well! A real little champ. He screamed for about five seconds before distracting himself with the toys in the nurses office. He even had a nice little nap in the carrier on the way home.
The carrier was one piece of equipment that I really wanted while I was pregnant. Once he arrived, G made it very clear that he HATED the carrier. I was worried that he would never use it. Over the past few weeks, he has really taken to it, preferring it to all other forms of transportation. We can now go shopping and I can do chores with a happy baby. Life is good!
On Friday, we had our last weight check before we go to Vancouver for surgery. Usually, there are about five people involved, and it's just too much for little G. This time, it was just the nurse, the baby, and I. G had a nap on the way, and since the clinic was quiet, we had a private area for G to have a snack before our appointment. Often he gets too distracted to eat before hand. He doesn't want to miss anything. Well, it made a big difference. He was so happy the entire time. His oxygen saturation was 90% , even hitting 92 at one point. I was very pleased with that result.
His weight is right around the median for his age, which is funny because he has outgrown all of his 3 to 6 months sized clothes, and he isn't even 5 months old yet. He has some fatty rolls on his arms and legs. Basically, he is in a good position going into his procedure.
The nurse showed me a photo album of a baby who had undergone open heart surgery. Seeing another baby hooked up to tubes and machines was hard, but good preparation for what's coming. I didn't react too much until I saw the pictures of him as a teenager. This sick child was saved, and he grew up to be a healthy adult. It was the best motivation to keep going that I have had so far.
Thursday was Miracle Treat Day, in which proceeds from the sale of DQ Blizzards are donated to BC Children's Hospital Foundation. A lot of people supported the cause and ate ice cream to help sick kids. I managed to eat two! I think this is a fundraiser that I can get behind year after year.
Yesterday, we attended a barbecue with other families with kids who have congenital heart disease. Sunny Bear, the mascot for the BC Children's Hospital Foundation, even made an appearance. These kids were not sick ; they were funny, intelligent, growing young children who were hitting milestones and having fun. One of the little boys will be heading over to Children's Hospital on the same day as us. He has day surgery scheduled on the same day as our pre-admission clinic. We might meet up with the family for a quick tour of the hospital.
One last happy story: this morning we went for a walk at Neck Point, a local nature park, for the first time since G was born. Thank goodness he likes the carrier now! He fell asleep within a minute of being strapped in, and my husband and I enjoyed sunshine, forest, and the beach while our little angel napped away. I really needed that! I think we might have to repeat it again tomorrow.
We leave for Vancouver in two weeks. It's coming up quickly. I will try to keep the updates coming while we are in hospital, but if they are slow, please don't take it as a bad sign. Taking care of my family is the main priority. I may turn this account over to someone else if I can't keep up with it.
Baby just woke up. Until next time. ..
He did so well! A real little champ. He screamed for about five seconds before distracting himself with the toys in the nurses office. He even had a nice little nap in the carrier on the way home.
The carrier was one piece of equipment that I really wanted while I was pregnant. Once he arrived, G made it very clear that he HATED the carrier. I was worried that he would never use it. Over the past few weeks, he has really taken to it, preferring it to all other forms of transportation. We can now go shopping and I can do chores with a happy baby. Life is good!
On Friday, we had our last weight check before we go to Vancouver for surgery. Usually, there are about five people involved, and it's just too much for little G. This time, it was just the nurse, the baby, and I. G had a nap on the way, and since the clinic was quiet, we had a private area for G to have a snack before our appointment. Often he gets too distracted to eat before hand. He doesn't want to miss anything. Well, it made a big difference. He was so happy the entire time. His oxygen saturation was 90% , even hitting 92 at one point. I was very pleased with that result.
His weight is right around the median for his age, which is funny because he has outgrown all of his 3 to 6 months sized clothes, and he isn't even 5 months old yet. He has some fatty rolls on his arms and legs. Basically, he is in a good position going into his procedure.
The nurse showed me a photo album of a baby who had undergone open heart surgery. Seeing another baby hooked up to tubes and machines was hard, but good preparation for what's coming. I didn't react too much until I saw the pictures of him as a teenager. This sick child was saved, and he grew up to be a healthy adult. It was the best motivation to keep going that I have had so far.
Thursday was Miracle Treat Day, in which proceeds from the sale of DQ Blizzards are donated to BC Children's Hospital Foundation. A lot of people supported the cause and ate ice cream to help sick kids. I managed to eat two! I think this is a fundraiser that I can get behind year after year.
Yesterday, we attended a barbecue with other families with kids who have congenital heart disease. Sunny Bear, the mascot for the BC Children's Hospital Foundation, even made an appearance. These kids were not sick ; they were funny, intelligent, growing young children who were hitting milestones and having fun. One of the little boys will be heading over to Children's Hospital on the same day as us. He has day surgery scheduled on the same day as our pre-admission clinic. We might meet up with the family for a quick tour of the hospital.
One last happy story: this morning we went for a walk at Neck Point, a local nature park, for the first time since G was born. Thank goodness he likes the carrier now! He fell asleep within a minute of being strapped in, and my husband and I enjoyed sunshine, forest, and the beach while our little angel napped away. I really needed that! I think we might have to repeat it again tomorrow.
We leave for Vancouver in two weeks. It's coming up quickly. I will try to keep the updates coming while we are in hospital, but if they are slow, please don't take it as a bad sign. Taking care of my family is the main priority. I may turn this account over to someone else if I can't keep up with it.
Baby just woke up. Until next time. ..
Friday, 14 August 2015
Rock and Roll
After much practice, G finally rolled over back to front on Sunday. He was so thrilled when he did it that he kept rolling all morning. Then, in classic G fashion, figured that he had mastered it and didn't roll much all week.
Since he can roll both ways, he can theoretically use his new skill as a means of locomotion. He has not realized this yet, giving mom and dad time to baby proof the lower 12 inches of our home.
The last weight check before surgery is in half an hour. I will try to post an update sometime today or tomorrow.
Since he can roll both ways, he can theoretically use his new skill as a means of locomotion. He has not realized this yet, giving mom and dad time to baby proof the lower 12 inches of our home.
The last weight check before surgery is in half an hour. I will try to post an update sometime today or tomorrow.
Tuesday, 11 August 2015
Update #5
I thought I had posted this two weeks ago. Oops. This post was written after our trip to Victoria on July 29.
On Wednesday, we went down to Victoria to visit the cardiologist. He wanted to do an ECHO to look at G's heart.
G made it to the Malahat (over and hour!) before he started fussing, so we took a lunch break in Langford. Overall, we were very impressed with his big boy behavior in the car.
When we arrived on the pediatric ward, they wanted to do the ECHO first to get good pictures of his heart. He was stripped down to a diaper and we needed to keep him still. Well, after two hours confined in a car seat, you can probably guess how that went. He communicated, very clearly, that he did not want to lay down quietly on the warm bed. After a little snack and a cuddle, we reclined him in my lap and put on an Elmo DVD. He was happy to sit and watch TV, but had a good scream every time Elmo came on screen. The tech got the job done fairly quickly. She was so amazing and easy going. The results are good. G's heart looks the same as it did about 6 weeks ago, which means that the obstruction hasn't gotten worse. This is the best news we could have expected.
Next came the weight check. Once again, he protested. The pros seemed satisfied with the results. He is now pretty much outgrown his 3 to 6 months sized clothing. Not bad for a baby who is just past 4 months!
By the time the oxygen check happened, G had been screaming on and off for 20 minutes. The numbers (84) reflected it, being slightly below his baseline of 86. The cardiologist was not too concerned. Mid 80s is OK. If his resting oxygen dips into the low 80s, the doctor would be concerned. We learned that as far as stable tet goes, G's oxygen is in the low end. Most tet babies have baselines in the 90's. However, the baby is stable enough for us to keep our checkups 2 weeks apart. If the cardiologist was really concerned, he would have sent us home with an oxygen meter. He didn't feel that was necessary.
I took some time to learn about how the oxygen meter works. The course that I took in analytical chemistry definitely came in handy! I could try to explain it here, but I don't have the time to prepare a clear explanation and there are already some good articles on the internet. (Google pulse oximetry to learn more. ) The most useful thing that I learned is that the technique is sensitive to movement and ambient light. I am not supposed to bounce the baby during a reading. Oops.
Anyway, I will sign off and go play with the baby. Overall, this was a good doctor visit.
On Wednesday, we went down to Victoria to visit the cardiologist. He wanted to do an ECHO to look at G's heart.
G made it to the Malahat (over and hour!) before he started fussing, so we took a lunch break in Langford. Overall, we were very impressed with his big boy behavior in the car.
When we arrived on the pediatric ward, they wanted to do the ECHO first to get good pictures of his heart. He was stripped down to a diaper and we needed to keep him still. Well, after two hours confined in a car seat, you can probably guess how that went. He communicated, very clearly, that he did not want to lay down quietly on the warm bed. After a little snack and a cuddle, we reclined him in my lap and put on an Elmo DVD. He was happy to sit and watch TV, but had a good scream every time Elmo came on screen. The tech got the job done fairly quickly. She was so amazing and easy going. The results are good. G's heart looks the same as it did about 6 weeks ago, which means that the obstruction hasn't gotten worse. This is the best news we could have expected.
Next came the weight check. Once again, he protested. The pros seemed satisfied with the results. He is now pretty much outgrown his 3 to 6 months sized clothing. Not bad for a baby who is just past 4 months!
By the time the oxygen check happened, G had been screaming on and off for 20 minutes. The numbers (84) reflected it, being slightly below his baseline of 86. The cardiologist was not too concerned. Mid 80s is OK. If his resting oxygen dips into the low 80s, the doctor would be concerned. We learned that as far as stable tet goes, G's oxygen is in the low end. Most tet babies have baselines in the 90's. However, the baby is stable enough for us to keep our checkups 2 weeks apart. If the cardiologist was really concerned, he would have sent us home with an oxygen meter. He didn't feel that was necessary.
I took some time to learn about how the oxygen meter works. The course that I took in analytical chemistry definitely came in handy! I could try to explain it here, but I don't have the time to prepare a clear explanation and there are already some good articles on the internet. (Google pulse oximetry to learn more. ) The most useful thing that I learned is that the technique is sensitive to movement and ambient light. I am not supposed to bounce the baby during a reading. Oops.
Anyway, I will sign off and go play with the baby. Overall, this was a good doctor visit.
Wednesday, 22 July 2015
Why I will continue to be cautious while pregnant
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.
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.
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.
Monday, 29 June 2015
Update #3
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.
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.
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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