Wren is still not sleeping (well). He believes that he should remain attached to my breast at all times like a tick. If attached he sleeps. When removed he wakes.
Meanwhile, Dad has arrived from South Africa via China, Taiwan and Thailand for a one-week visit. He tells us that the sun is out so brightly in SE Asia that he was burned through a t-shirt while swimming. I feel envious. I want to wander the beach and suffer heat.
It is wonderful to have Dad with us - he brings with him all manner of pleasures: the smell of mint toothpaste and shaving cream in the bathroom in the morning, having a tall person in the doorway (he is 6 ft 4"), having someone to share the carrying of Wren during the day and a fellow cook in the kitchen.
Last night Dad brought out recipes from his cooking class in Thailand and we made Thai fish cakes from scratch. Unfortunately, the lime tree Ingrid was trying to smuggle home to South Africa was captured in transit by the Chinese customs sniffing dogs but we managed to find some leaves for sale at Whole Foods (along with a lovely lunch from the deli bar). Frost was thrilled to be allowed to leave school early yesterday after the field trip to the arboretum where we went for a 2 hour walk with the school. Dad was impressed by the answers the kids gave to the docents questions. Zephyr was particularly observant in his responses - including explaining why we should not feed the ducks ("Then they will become lazy and not look for their normal food and it will make them sick" vs Frosts' "Its like they are eating desert all day")
Today we are going to the Burke Museum and to the thrift store. Dad has an interest in the geology collections and some cheap clothes.
Wren and Josh are a bit sick with a head cold. Frost is off to swimming at school.
7 days till Camp Orkila!!
Saturday, May 5, 2007
Tuesday, May 1, 2007
Counting Sugar
Josh told me an interesting anecdote about sugar. Apparently, we now eat as much sugar in a week as a person living 1000 years ago ate in one year. He has been unable to provide me a reference so it may be skewed but the point is is that we eat WAY more sugar than we used to, or need.
I also read that high-fructose-corn-syryp (HFCS) is a vile stuff and that kids 6+ should have no more than 40-50g of added sugar per day. Really, 40 should be the upper limit for kids Frost's age. So, as an experiment I have been counting and limiting Frost to that amount. Here is the result for Day 1:
6g Breakfast cereal (puffins)
14g Granola bar snack for lunch
1/2 glass of ovaltine with unsweetened soy milk (5g)
7g Two cookies in lunchbox
3g 3 chocolate altoids when he came home
7g Two more cookies after school
10g Icecream desert
=52g
Denied:
Drinking Josh's soda at 45g per can
More altoids at 1g each
More ovaltine at 10g per full glass
Juice
He did eat all the other stuff (apples, strawberries, pita, hummus, some vegies, some chicken, goldfish) but think how much more hungry he could be.... [evil glint in eye]
I also read that high-fructose-corn-syryp (HFCS) is a vile stuff and that kids 6+ should have no more than 40-50g of added sugar per day. Really, 40 should be the upper limit for kids Frost's age. So, as an experiment I have been counting and limiting Frost to that amount. Here is the result for Day 1:
6g Breakfast cereal (puffins)
14g Granola bar snack for lunch
1/2 glass of ovaltine with unsweetened soy milk (5g)
7g Two cookies in lunchbox
3g 3 chocolate altoids when he came home
7g Two more cookies after school
10g Icecream desert
=52g
Denied:
Drinking Josh's soda at 45g per can
More altoids at 1g each
More ovaltine at 10g per full glass
Juice
He did eat all the other stuff (apples, strawberries, pita, hummus, some vegies, some chicken, goldfish) but think how much more hungry he could be.... [evil glint in eye]
Pediatrician update
Wren had a pediatrician visit today. They measured his leg to get a baseline. It is 1" larger on the left than the right (measured 4cm above knee). It is proportionally larger on the calf too.
He had a hemocrit check. His haemaglobin had gone up from 29.1 on April 5th to 31.8 today. That is a big improvement. We plan to give him iron rich foods when he is 6 months old. Dr Levitt suggested lamb as a good start along with vitamin C rich foods. She also likes iron fortified cereal. I am not sure whether we need to try another iron supplement - for now we are not giving him any.
She can see no sign of teeth.
On the sleep issues she feels we are doing okay if he sleeps a few "at least" 3 hour stretches at night and gets 12+ hours sleep in a day (with naps). When he reaches 6 months she suggests that we can try letting him cry a bit to get the hang of soothing himself if he hasn't improved on that count.
He had a hemocrit check. His haemaglobin had gone up from 29.1 on April 5th to 31.8 today. That is a big improvement. We plan to give him iron rich foods when he is 6 months old. Dr Levitt suggested lamb as a good start along with vitamin C rich foods. She also likes iron fortified cereal. I am not sure whether we need to try another iron supplement - for now we are not giving him any.
She can see no sign of teeth.
On the sleep issues she feels we are doing okay if he sleeps a few "at least" 3 hour stretches at night and gets 12+ hours sleep in a day (with naps). When he reaches 6 months she suggests that we can try letting him cry a bit to get the hang of soothing himself if he hasn't improved on that count.
Monday, April 30, 2007
Head above wine
After that week of sleeping hourly naps all night and rising at ever earlier hours I am pleased to announce that life has taken a turn for the better.
This evening we sipped a Napa Merlot in anticipation of our trip down to the San Francisco coast in July. We will be meeting my mother and Mervyn, Claire (stepsister) and Jeff with their two girls Sasha and Cailey. Cailey was born only a few days after Frost so they will have fun playing together. We have decided to take a road-trip down to California and are enjoying musing over maps and looking at versions of the trip. Google Earth has this neat feature where people can load up their images of locations so we have been able to see pictures of the beach near our planned house as well as the area around the motel in Crescent City.
I have been enjoying a new book - a biography of Sir Richard Francis Burton written by Edward Rice. For those not familiar with Burton - he was a famous British adventurer and early ethnographer. He spoke numerous languages including arabic, greek, roman, hindustani, persian etc and is credited with translating the Karma Sutra and indeed "discovering" it for the West. He was also the first Westerner to make pilgrimage to mecca. I am reading about his first time in India and getting wanderlust (although I think I could do without my own concubine, tiger hunting and studying hindustani 12 hours a day in 120 degree heat.) I was thinking that one could not live this kind of life while being a parent and indeed it seems he was not a parental figure although (I didn't know this) he apparently fathered a number of children with his concubines whose decendents still live in India.)
While musing about travel and life abroad, Josh and I are toying (I stress toying) with the idea of living in Melbourne or New Zealand at some point. This is not an imminent event. It is not a plan. It is an excuse to browse realestate.com.au and look at New Zealand on Google Earth. Its a reason for me to pursue getting my US citizenship which might otherwise languish in the longterm to do pile (if I left the US for over 6 months I might lose my permanent residency here and have to reapply to return.) Natasha says she could hook me up with a lot of hippy families in Melbourne and that we should live in Northcote. Real Estate in Melbourne is NOT cheap.
Josh and I have had all this time to look at Google Earth and sip wine because Frost has been playing with some kids in our neighbourhood. Unfortunately, he feels compelled to shriek and make lame jokes and be naughty to show the big boys how cool he is but they seem to manage to have a good time despite his antics. Today he played with Elias and met Eli from up the street. They played Elias's quota of Wii time, roughhoused on the bed, played with the house, climbed the fence with the ladder, ate smores, toasted marshmallows on the gas flame, spraypainted Warhammer spiders and ran shrieking in all directions. I spoke with Ashley (Eli's mother) and it looks like we will try and have a block party in August this year and I have offered to help out if she plans it.
While Frost was over at Elias's I managed to do some more weeding. Wren sat under a tree in his bumbo but wasn't too content to grab leaves so I left him inside with Josh while I attacked the unintentional shrubbery that is our parking strip. Its 90% grass but there is potential. I also went jogging with Wren in the jogger stroller. The whole event was nearly derailed when I couldn't find the canopy for the jogger stroller and didn't want to take Wren out in the sun (yes, there was SUN). Before I could get completely obsessed with my failure to locate anything in the basement, Josh proposed a hat. The hat fell down over Wren's face but he fell asleep so all the falling went in order and I had a lovely garden-tour like jog. Everyone was out doing yardwork. Everyone.
Finally, lest I forget to mention sleep. Yes, Wren did well last night - a necessary condition for all this spring ebulliance. He slept for 6 hours and then 3 hours. We have a new plan - bedtime routing, nurse to sleep, put him down in his wedge, when he wakes (as long as its 3+ hours) nurse him to sleep again but let him sleep in bed with us. That makes the frequent nursings of the early morning more bearable and he seems to be able to get back to sleep with a few pats on occasion. He is getting 1.2ml of zantac AM and PM. We are seeing the pediatrician to review all this and the leg stuff, tomorrow.
Edited this AM: The kids played with the hose, not the house. We have a bedtime routine not a bedtime routing although both of these have me giggling. Last night Wren slept a bit worse: 9pm bed, 11.30 wake, 12.30wake, 5am wake, 7am up (after an hour of wriggling). That long stretch in the middle will get me through the day.
This evening we sipped a Napa Merlot in anticipation of our trip down to the San Francisco coast in July. We will be meeting my mother and Mervyn, Claire (stepsister) and Jeff with their two girls Sasha and Cailey. Cailey was born only a few days after Frost so they will have fun playing together. We have decided to take a road-trip down to California and are enjoying musing over maps and looking at versions of the trip. Google Earth has this neat feature where people can load up their images of locations so we have been able to see pictures of the beach near our planned house as well as the area around the motel in Crescent City.
I have been enjoying a new book - a biography of Sir Richard Francis Burton written by Edward Rice. For those not familiar with Burton - he was a famous British adventurer and early ethnographer. He spoke numerous languages including arabic, greek, roman, hindustani, persian etc and is credited with translating the Karma Sutra and indeed "discovering" it for the West. He was also the first Westerner to make pilgrimage to mecca. I am reading about his first time in India and getting wanderlust (although I think I could do without my own concubine, tiger hunting and studying hindustani 12 hours a day in 120 degree heat.) I was thinking that one could not live this kind of life while being a parent and indeed it seems he was not a parental figure although (I didn't know this) he apparently fathered a number of children with his concubines whose decendents still live in India.)
While musing about travel and life abroad, Josh and I are toying (I stress toying) with the idea of living in Melbourne or New Zealand at some point. This is not an imminent event. It is not a plan. It is an excuse to browse realestate.com.au and look at New Zealand on Google Earth. Its a reason for me to pursue getting my US citizenship which might otherwise languish in the longterm to do pile (if I left the US for over 6 months I might lose my permanent residency here and have to reapply to return.) Natasha says she could hook me up with a lot of hippy families in Melbourne and that we should live in Northcote. Real Estate in Melbourne is NOT cheap.
Josh and I have had all this time to look at Google Earth and sip wine because Frost has been playing with some kids in our neighbourhood. Unfortunately, he feels compelled to shriek and make lame jokes and be naughty to show the big boys how cool he is but they seem to manage to have a good time despite his antics. Today he played with Elias and met Eli from up the street. They played Elias's quota of Wii time, roughhoused on the bed, played with the house, climbed the fence with the ladder, ate smores, toasted marshmallows on the gas flame, spraypainted Warhammer spiders and ran shrieking in all directions. I spoke with Ashley (Eli's mother) and it looks like we will try and have a block party in August this year and I have offered to help out if she plans it.
While Frost was over at Elias's I managed to do some more weeding. Wren sat under a tree in his bumbo but wasn't too content to grab leaves so I left him inside with Josh while I attacked the unintentional shrubbery that is our parking strip. Its 90% grass but there is potential. I also went jogging with Wren in the jogger stroller. The whole event was nearly derailed when I couldn't find the canopy for the jogger stroller and didn't want to take Wren out in the sun (yes, there was SUN). Before I could get completely obsessed with my failure to locate anything in the basement, Josh proposed a hat. The hat fell down over Wren's face but he fell asleep so all the falling went in order and I had a lovely garden-tour like jog. Everyone was out doing yardwork. Everyone.
Finally, lest I forget to mention sleep. Yes, Wren did well last night - a necessary condition for all this spring ebulliance. He slept for 6 hours and then 3 hours. We have a new plan - bedtime routing, nurse to sleep, put him down in his wedge, when he wakes (as long as its 3+ hours) nurse him to sleep again but let him sleep in bed with us. That makes the frequent nursings of the early morning more bearable and he seems to be able to get back to sleep with a few pats on occasion. He is getting 1.2ml of zantac AM and PM. We are seeing the pediatrician to review all this and the leg stuff, tomorrow.
Edited this AM: The kids played with the hose, not the house. We have a bedtime routine not a bedtime routing although both of these have me giggling. Last night Wren slept a bit worse: 9pm bed, 11.30 wake, 12.30wake, 5am wake, 7am up (after an hour of wriggling). That long stretch in the middle will get me through the day.
Sunday, April 29, 2007
Josh's birthday
It was Josh's 31st birthday yesterday. He lay around in his pajamas recovering from another night of Wren's non-sleep. John came over and hleped me get the garden sorted out a bit and Josh opened his single present (he insists he is not feeling aquisitive) which was a set of bowls from Shiga's imports.
I made a chocolate cake and we sang a discordent version of Happy Birthday (with John chiming in the "belong in the zoo" version.
It was a mellow day.
Last night Josh went out for drinks with Shawn and Sarah (who shares his birthday minus a few years).
Today we are heading out to Bucca de Beppos for a bit of carb loading. Wren is staying home with Joyce-Anne - the first time we have had a non-family babysitter!
Saturday, April 28, 2007
Sleep update
Wren is now off iron and back on Zantac. He slept very well on the first night post-iron and acceptably on the second. The third night he couldn't stay asleep or even get to sleep which is very unusual for him. He kept waking suddenly and we heart him gulping and making wheezy noises in his throat.
I put him back on Zantac 24 hours ago and he slept much better last night (4 hrs, 3 hrs, 1 hr). It is still not long enough but I think once we iron out any underlying problems we can work with setting up a better sleep routine and associations.
I am still reluctant to put him to bed at 8pm until he sleeps reliably for 4 hours at a time. Otherwise I miss out on his long sleep and last week was becoming completely completely unhinged. Some nights I wouldn't get more than 90 minutes at a stretch and started getting insomnia between his night-naps. This wasn't working.
So, we are back to a later bedtime with a routine, zantac, no iron and need lots of good luck.
I put him back on Zantac 24 hours ago and he slept much better last night (4 hrs, 3 hrs, 1 hr). It is still not long enough but I think once we iron out any underlying problems we can work with setting up a better sleep routine and associations.
I am still reluctant to put him to bed at 8pm until he sleeps reliably for 4 hours at a time. Otherwise I miss out on his long sleep and last week was becoming completely completely unhinged. Some nights I wouldn't get more than 90 minutes at a stretch and started getting insomnia between his night-naps. This wasn't working.
So, we are back to a later bedtime with a routine, zantac, no iron and need lots of good luck.
Friday appointment update
On Friday I took Wren to Children's Hospital for an ultrasound study of his leg veins. They were looking to see whether there was any reason for his still swollen left leg.
It turns out that the culprit is his ileac vein. After the cath we were told that it was blocked and had collaterals thus preventing access for the cath procedure. Somehow, this fact didn't make it to file and so the ultrasound people were concerned when they saw this occlusion. After reviewing the file they said that the vein is completely blocked and the collateral is probably providing some resistance so the leg does not drain as well as before. He is likely to have a slightly larger left leg all his life.
This is a common complication when veins collapse after a procedure. In Wren's case it was probably caused by one of the lines used during his first surgery when he was a newborn.
They said they also see babies with swollen legs after vaccinations "all the time" and guessed that since the swelling became noticable after a vaccination that the swelling was exaccerbated by this new assault.
In future all shots should be in the right leg... or rather NOT in the left leg.
I am waiting to talk to Dr Lewin about possible remediating treatments. He mentioned elevating the leg but I am not sure how to do that in practice.
I feel a bit sad for Wren. Unlike his heart, this is something that his body got right but it was damaged in hospital. I hope it becomes less severe over time or we can do something to improve it.
It turns out that the culprit is his ileac vein. After the cath we were told that it was blocked and had collaterals thus preventing access for the cath procedure. Somehow, this fact didn't make it to file and so the ultrasound people were concerned when they saw this occlusion. After reviewing the file they said that the vein is completely blocked and the collateral is probably providing some resistance so the leg does not drain as well as before. He is likely to have a slightly larger left leg all his life.
This is a common complication when veins collapse after a procedure. In Wren's case it was probably caused by one of the lines used during his first surgery when he was a newborn.
They said they also see babies with swollen legs after vaccinations "all the time" and guessed that since the swelling became noticable after a vaccination that the swelling was exaccerbated by this new assault.
In future all shots should be in the right leg... or rather NOT in the left leg.
I am waiting to talk to Dr Lewin about possible remediating treatments. He mentioned elevating the leg but I am not sure how to do that in practice.
I feel a bit sad for Wren. Unlike his heart, this is something that his body got right but it was damaged in hospital. I hope it becomes less severe over time or we can do something to improve it.
Thursday, April 26, 2007
Another night
Last night Wren slept better than before iron but not as well as the night before. He slept 3.5 hours then another 3 hours before subsiding into his light sleep and liking to nurse routine. What is that about?
Meanwhile, Wren is being very clever with his hands thesedays. He occasionally passes an object from hand to hand - he did this with a spoon yesterday - and loves to grab anything in range. He often grasps onto my hair, my shirt or his own clothes. At dinner, I had him on my lap and he reached out and grabbed some lettuce from my plate and brought it to his mouth. Frost thought this was hysterical and kept trying to repeat the act by putting more lettuce within range.
At times i worry that I am not providing Wren with enough entertainment. At this stage Frost was still very noisy and unwilling to be set down. Wren is happy to sit in his bumbo and watch what I am doing so I set him down much more than I did with Frost. He always smiles when I make eye contact and smile at him and he gets very excited if you talk to him and make raspberry noises. Josh manages to have conversations with Wren in which they both make the bttththtththt noiss for a while and Frost is the champion of these spittle sessions with Wren.
Today we went to Fauntenroy Creek in West Seattle to release the salmon that KapKa have been raising from eggs. Wren was in the sling and Frost was very solemn and excited to release a salmon from a little plastic cup into the shallow stream. He asked and was given a second salmon cup to release and his cup had TWO salmon in it which led to complaints of inequity from his friends who also wanted another go.
I released a salmon too and wished it well. Perhaps one of our salmon will make it back to the creek to spawn in a few years.
Tonight we gave Wren a bedtime routine for the first time. It included PJ's, Darkened room, Goodnight Moon, Nursing adn then swaddling and setting him into bed. He was not impressed. After 5 minutes of waiting for us to do something interesting he started shouting and complaining. Josh rocked him to sleep while I did Frost's bedtime. Wren's bedtime was 8.00pm. We shall see how this works out in future. Wish me luck on this nights sleep (mis)adventure.
Meanwhile, Wren is being very clever with his hands thesedays. He occasionally passes an object from hand to hand - he did this with a spoon yesterday - and loves to grab anything in range. He often grasps onto my hair, my shirt or his own clothes. At dinner, I had him on my lap and he reached out and grabbed some lettuce from my plate and brought it to his mouth. Frost thought this was hysterical and kept trying to repeat the act by putting more lettuce within range.
At times i worry that I am not providing Wren with enough entertainment. At this stage Frost was still very noisy and unwilling to be set down. Wren is happy to sit in his bumbo and watch what I am doing so I set him down much more than I did with Frost. He always smiles when I make eye contact and smile at him and he gets very excited if you talk to him and make raspberry noises. Josh manages to have conversations with Wren in which they both make the bttththtththt noiss for a while and Frost is the champion of these spittle sessions with Wren.
Today we went to Fauntenroy Creek in West Seattle to release the salmon that KapKa have been raising from eggs. Wren was in the sling and Frost was very solemn and excited to release a salmon from a little plastic cup into the shallow stream. He asked and was given a second salmon cup to release and his cup had TWO salmon in it which led to complaints of inequity from his friends who also wanted another go.
I released a salmon too and wished it well. Perhaps one of our salmon will make it back to the creek to spawn in a few years.
Tonight we gave Wren a bedtime routine for the first time. It included PJ's, Darkened room, Goodnight Moon, Nursing adn then swaddling and setting him into bed. He was not impressed. After 5 minutes of waiting for us to do something interesting he started shouting and complaining. Josh rocked him to sleep while I did Frost's bedtime. Wren's bedtime was 8.00pm. We shall see how this works out in future. Wish me luck on this nights sleep (mis)adventure.
Wednesday, April 25, 2007
Evil, evil, evil iron
At the clinic visit yesterday Dr Lewin suggested we stop the prescribed Iron Sulfate because it is often irritating to the stomach. He thought that might help Wren sleep. Clutching at straws we gave Wren no iron yesterday.
Last night he slept for EIGHT AND A HALF HOURS WITHOUT WAKING AT ALL!!!!!!!! (I am enjoying those exclammation points.) He slept 9pm till 5.30am then nursed and napped a few times till 7am when we got up. He is now very hungry today but wakes from naps cooing not yelling.
I bet if they took his blood pressure again it would be lower today. Of course, this may be a fluke and he could start waking all night again this evening but I suspect not. It all makes sense.
The really bad sleep started after the last pediatrician appointment when he had all the shots and still had a cold. We chalked it up to shots and cough. However, instead of improving sleep has gone downhill. Before that appointment I had tapered off his iron and he had been sleeping well. Because it was still low that day (29.1) Dr Levitt suggested we keep iron up a bit longer. She proposed Tri-vi-sol with iron or using the rest of the prescription we had. I just used the prescription since I already have tri-vi-sol without iron.
I feel so bad for Wren who must have been feeling bad for a while now with an upset or sore stomach.
Well, the experiment will continue tonight but these are my joyous initial results.
ALSO
We found out yesterday that Dr Lewin is acting Director of Cardiology. The current director has stepped down to concentrate on research. That means Dr Lewin is not working as Director of Echocardiography at the moment.
Last night he slept for EIGHT AND A HALF HOURS WITHOUT WAKING AT ALL!!!!!!!! (I am enjoying those exclammation points.) He slept 9pm till 5.30am then nursed and napped a few times till 7am when we got up. He is now very hungry today but wakes from naps cooing not yelling.
I bet if they took his blood pressure again it would be lower today. Of course, this may be a fluke and he could start waking all night again this evening but I suspect not. It all makes sense.
The really bad sleep started after the last pediatrician appointment when he had all the shots and still had a cold. We chalked it up to shots and cough. However, instead of improving sleep has gone downhill. Before that appointment I had tapered off his iron and he had been sleeping well. Because it was still low that day (29.1) Dr Levitt suggested we keep iron up a bit longer. She proposed Tri-vi-sol with iron or using the rest of the prescription we had. I just used the prescription since I already have tri-vi-sol without iron.
I feel so bad for Wren who must have been feeling bad for a while now with an upset or sore stomach.
Well, the experiment will continue tonight but these are my joyous initial results.
ALSO
We found out yesterday that Dr Lewin is acting Director of Cardiology. The current director has stepped down to concentrate on research. That means Dr Lewin is not working as Director of Echocardiography at the moment.
Tuesday, April 24, 2007
Clinic visit summary
Wren's cardiac clinic visit was a success. We managed to get the echo done without too much insanity, little crying and only one whizz through the Baby Einstein video. The high point was a little light-up spinner toy Henry (the tech) gave us. He intespersed the echo with news from his road trip from the midwest a few weeks ago.
The echo showed Wren's heart to be stable - coarc has turbulence around it but the arch is "wide open". The LVOT area still has turbulence but the velocities were similar to last time and the valve is doing well - no leakage or additional problems. There is still a bit of thickening of the LV wall but no increase from previous studies.
Dr Lewin said this suggested Wren was in the "chronic stage of this condition". As Josh said "we would prefer he was in the resolved stage of this condition" but chronic is better than acute, right?
His blood pressures were a bit high(er) than normal but no-one seemed to concerned as he was very agitated while they were taken.
He weighs 8.21 kg or 17 lbs 15oz.
No EKG was done.
Dr Lewin and the nurse feel that the iron supplement could be contributing to his bad sleep. Dr L said we should discontinue it as it can be very irritating to the stomach. I was giving it to Wren at night and it may have given him a sore stomach. Nurse Jenny said she was sure he was teething.
We go back in 3 months and are okayed for the road trip to California this summer IF the leg issue is resolved and it should be in time.
Meanwhile, Dr Lewin is concerned about the leg. He says it may be simple vein compression but it could be that the cath created a pathway between the vein and artery in his groin. This could reduce circulation to his leg. He wants us to have a doppler ultrasound study of his leg to see what is going on. We have one scheduled for Friday afternoon at 2pm.
Meanwhile, Wren is to lie flat more often and try to sleep flat too - not in the wedge. We should avoid positions that put extra pressure on the back of his thigh like extended carseat rides and sleeping in that position, at least until it is diagnosed and resolved.
A great treat on our visit was to run into Wyndi, Izzy and Stephen (after a vascular clinic visit) and Christopher, Kenia and baby Sophia (just back from Sophia's arterial switch surgery at LPCH in Stanford). I feel very happy to have met Sophia. She has a delicate sweet face and was managing to sleep through many distractions. She makes Wren look like a complete thug with his size. I hope their clinic visit was as uneventful as ours and we get to catch up with them at a support group meeting in the months ahead.
The echo showed Wren's heart to be stable - coarc has turbulence around it but the arch is "wide open". The LVOT area still has turbulence but the velocities were similar to last time and the valve is doing well - no leakage or additional problems. There is still a bit of thickening of the LV wall but no increase from previous studies.
Dr Lewin said this suggested Wren was in the "chronic stage of this condition". As Josh said "we would prefer he was in the resolved stage of this condition" but chronic is better than acute, right?
His blood pressures were a bit high(er) than normal but no-one seemed to concerned as he was very agitated while they were taken.
He weighs 8.21 kg or 17 lbs 15oz.
No EKG was done.
Dr Lewin and the nurse feel that the iron supplement could be contributing to his bad sleep. Dr L said we should discontinue it as it can be very irritating to the stomach. I was giving it to Wren at night and it may have given him a sore stomach. Nurse Jenny said she was sure he was teething.
We go back in 3 months and are okayed for the road trip to California this summer IF the leg issue is resolved and it should be in time.
Meanwhile, Dr Lewin is concerned about the leg. He says it may be simple vein compression but it could be that the cath created a pathway between the vein and artery in his groin. This could reduce circulation to his leg. He wants us to have a doppler ultrasound study of his leg to see what is going on. We have one scheduled for Friday afternoon at 2pm.
Meanwhile, Wren is to lie flat more often and try to sleep flat too - not in the wedge. We should avoid positions that put extra pressure on the back of his thigh like extended carseat rides and sleeping in that position, at least until it is diagnosed and resolved.
A great treat on our visit was to run into Wyndi, Izzy and Stephen (after a vascular clinic visit) and Christopher, Kenia and baby Sophia (just back from Sophia's arterial switch surgery at LPCH in Stanford). I feel very happy to have met Sophia. She has a delicate sweet face and was managing to sleep through many distractions. She makes Wren look like a complete thug with his size. I hope their clinic visit was as uneventful as ours and we get to catch up with them at a support group meeting in the months ahead.
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