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.
Sunday, 30 August 2015
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.
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