Bath Tigers

Here are the boys bathing together and biting bath tiger. I thought it was such a cute photo that I couldn't resist giving it its own post.

BackYard Tourism #1: Rose Hill Woodland Park

This afternoon I took the boys to the East side [of Lake Washington] to try out a new playground in Kirkland called North Rose Hill. Frost, Alex and Wren had a great time in both play areas and on the walk across the middle of the park, through winding trails and wetland. Here is the new part of the park, opened a couple of years ago.



In the first playground the bigger boys had me set up obstacle races for them. Alex counted loudly while Frost raced and announced how many seconds he took. Frost responded with hostility to the anxiety this produced and kept arguing about the times Alex made up. He did not count for Alex but kept trying to negotiate on the 'scores'. I had no part in this argument because I was help Wren to play on the firetruck/aka digger he liked to climb all over.



Wren loved Kirkland because there are so many construction sites. He saw some of the biggest diggers ever doing road work and leveling large construction sites. Every corner has a mail truck parked alongside green lawns and even the houses seem more 'storybook' archetypal than those in Seattle. At one point I wondered whether Wren found more to look and shout about because the physical environment of the East side is like life in flashcards: things are spaced out with borders, created from the catalog imagination and very repetitious. OK Eastsiders you can heap it on me now.

Other things I noticed was that nowhere else have I seen kids with as much bling in their Crocs. In some shoes there was not a hole free! One little girl let me count her charms and she had 16! I am buying some for Frost for his birthday and he will thoroughly cherish the 4 he is getting.

Other than my moments of critical observation we had a fabulous visit. The parkland is lovely and the bigger boys loved running ahead and having Wren chase them. They also helped him find salmonberries in the wetland, or rather he found the salmonberries and ate them and they picked them for him. There was a great abundance of salmonberries and they seemed very sweet to me. Wren likes them more than raspberries and it confirms my intention to take them berry picking the week after next (next week Frost will be in camp). If your kid would like to come berry picking with us, let me know. Here is a picture of Wren pointing to the salmonberries he wants Alex and Frost to pick for him.


During the day I couldn't help but think about Wren's heart condition and whether he had any trouble with exercise, tiredness, rapid breathing and all those awful details I was asked at cardiology clinic. Just to reassure myself of his energy levels I have this movie of Wren running.



Here are some photos of him too. In the one he is running towards me being naughty. I can't remember what his game was but he has a rascally expression on his face. In the other picture he has a toy snake in his mouth. He found this in the grass walking to the playground and we were sad when he dropped it. When it was found on the way back he realized we were upset when he dropped it and made a big play of holding it and dropping it then running away. No matter how closely the boys "spied" on Wren they seldom noticed the moment he dropped it and I would not let them take it away to save it. So, here Wren enjoys teasing the boys by holding the snake in his mouth.





FACTS:
It was developed in 2006 and is called North Rose Hill Woodland Park.
Address: 9930 124th Avenue NE
It is 20 acres.

Freaking out a bit

PS. I am trying to Have A Good Time in summer but I am freaking out a bit about Wren's cath. Yesterday, I asked the pediatrician if we could really wait a month for the cath and she said that from the notes it looked as if he was stable enough to wait and that if Dr Lewin knew then that was fine. He knows.

Even so, this morning I had to fight the urge to call and reschedule - to get the cath done ASAP so I can know what the facts are and get this surgical or non-surgical planning going - not necessarily surgery but the plan. On the other hand, I have heard many people regret rushing into scheduled surgical plans, especially when they are complicated and invasive and once I have a plan I will probably worry even more.

Wren is enjoying his summer right now so much (sun and brother home all day!) so... I guess. Still, its very stressful and I worry.

Don't say yes to a goose [egg]

I have a goose egg in the fridge. It is wrapped in a paper towel and nestled in a plastic cup because it was too big for the egg shelf in the fridge door - a goose egg is three times the size of that of the typical fowl. This goose egg is from our visit to Moonshadow Farm. All the way home from the farm Frost and Alexander (who also has a goose egg) were planning how they would keep their eggs warm under a hot light and then build cages for their baby geese. Alexander was sure his mother would let him raise a goose in the yard while Frost nagged and begged for the Right To Raise the Goose.

The whole business was made more poignant because they saw the egg being layed and the farmer reached in and stole it for them. Also, he told them it was a fertile egg and that they had a pair of geese raising goslings. Then we walked around to the coop and run where another pair of geese had about 8 two-week old goslings waddling around. The male stuck his neck out and hissed with a wide pink mouth, his tongue quivering. Its also hard because I want Frost to be a boy who has a pet goose. I can see him with his goose following along behind. Josh and I are the type of people who want to incubate eggs that have fallen from nests, even if they have (perhaps) been pushed by forces of nature. We tend to the sentimental.

It was with faux conviction that I persuaded Frost to put the egg in the fridge. Now, I am going to have to get creative with my baking because there is no way I can eat a scrambled goose egg. It's weird, but I am squeamish about it - even the very fresh chicken eggs with their bits of feather and bright orange yolks give me pause. I have become used to my food coming in a aseptic packaging - being deanimated and removed from the source, processed and presented as inorganic matter. So much for the notion of being a farm girl but perhaps it is not too late for Frost who is so squeamish about anything from animals that he can detect cows milk in a smoothy and rejects butter on his toast.

Otherwise, we could just (re)embrace veganism and own our squeamishness as conscience and be done with raising fish, hoof and fowl on our future land.

Happy Day at the Farm

Yesterday we visited Moonshadow Farm and had BBQ and icecream on the way home. Frost's friend Alex joined us for the drive and they boys loved running around the small farm feeding chickens, petting bunnies, seeing the new chicks and goslings, eating salmon-berries and yelling a lot when the peacocks flew up onto the roof with their shrill yelping cries.

Wren did not appreciate the peacocks although he loved the donkeys, the salmon-berries (at more than a handful) and liked the bunnies.

Joshua and I appreciated the BBQ sandwiches in Duvall.

Here are the pictures from our day. Frost and Alexander enjoyed feeding the chickens:

Wren and I walk back from the yurt through the buttercup meadow. There is also a geodesic dome residence to our left. Wren was seldom content to walk. All the peacocks and strange animals made him uneasy but he was happy to run across the meadow down the path back to the salmon-berry patch. "More, more!"



Back to the chickens. Wren clings to Joshua as the chickens circle round. Joshua was interested in their advice on what breed of chicken would be best for our backyard chicken coop and they recommended Arucanas.



Here are the offending peacocks. There was even a pea-hen brooding on her eggs.



Finally, back at home Wren will only eat in his high-chair if maximally distracted and entertained. Here the big diggers gather around to keep him content to eat a few minutes longer.

18 mth ped visit - more information on bad news

Wren had his 18 month pediatrician appointment today along with his MMR shot. He was very brave and gave almost no complaint after the moment of the shot. His development is great along all normal measures:

Height: 33" 75th percentile.
Weight: 25 lbs 13oz - 5oth percentile!!!!
Head: 19 5/8" (85th percentile)

He has met or exceeded expectations for walking, running, climbing, speaking, understanding and communication in general. Dr L was very happy with him other than the sound of his heart which is "like a machine".

Uh oh.

And now the bad news... or rather more details on the bad news. At the appointment I received a copy of Dr Lewin's chart notes. These contain a lot more detail than the conversation we had at the appointment. They also make Wren's condition sound more serious.

Main BAD points:
* Wren has develop supravalvar aortic stenosis as well. The chart notes say that this requires investigation.
* He has stenosis in the aortic arch (again!) which was not mentioned.
* His aortic valve is thickened. This is a secondary aspect to aortic stenosis. Although he does not have regurgitation this is not a good development and may be due to the velocity of flow through the valve.
* His aortic valve is not only bicuspid but "domed". I have no idea what this observation means.
* Wren has mild "hypertension" (ie high blood pressure 118/67) in his right arm and slightly raised in right leg. They are delaying treatment (what? why?) until the cath is concluded and surgical path discussed).

There are GOOD points to:
* No regurgitation.
* Mitral valve behaving itself.
* LV normal size and only mild hypertrophy, good function.

Here is the concluding paragraph for those medical among you:

Wren is now 17 months old and carries a diagnosis of Shone's complex with multiple-level left heart pathology. This includes a bicuspid aortic valve, subaortic stenosis, coarctation of the aorta, an initial mitral valve abnormality and possible supravalve aortic stenosis. Wren is status post initial coarctation of the aorta repair with subsequent balloon aortic angioplasty as well as balloon aortic valvuloplasty. His echocardiogram today shows progressive left ventricular outflow tract obstruction which is now moderate to sever in nature. This progressive finding does place Wren at risk, and therefore I have recommended that we proceed with follow-up cardiac catheterization in order to better elucidate the level of maximal obstruction. My impression is that the subaortic process is quite significant but there also may be a major contribution from the aortic valve. I am hopeful that ballooning of the aortic valve will relieve the gradient such that we can avoid surgical intervention. However, I believe that we will be left with a significant subaortic process and there fore surgical intervention will be imminent. In addition, Wren has developed a supravalvar aortic process which also requires investigation. While Wren has only a 9mmHg blood pressure gradient [was 6mm before - my note] and his aortic arch appears only mildly turbulent by echo assessment, Wren has developed mild systemic hypertension in the right arm. I would suggest that we hold off on treating this until we have a better understanding of where we are heading regarding catheter-based intervention versus surgical.

Bedtime with Wren

Nursing Wren to sleep is one of my favorite moments in the day. His head smells sweet and soft and while his belly snuggles up close his hands flail around examining my face, hair, pajamas and the blanket with active curiosity. As he lies on the bed preparing to go to sleep he looks at the ceiling and comments on the stars. Usually, he just says STAR but tonight he said "BIG star" a few times, noticing the large stars spread in our ceiling galaxy.

Tonight, he was chatty at bedtime too. He nursed a bit until I inadvertently knocked a book off the bed with my foot. He stopped and looked at me intently. I said "The book fell of, bump". "Bump" he said and touched his head. "Yes, you bumped your head earlier, but this was the book that fell bump". He nursed again for a moment then rolled onto his back.

"Bump?"
"Yes, the book went bump"
"Book, gone"
"Yes, it fell"
"Dada GONE"
"Dada is eating dinner" (although he was playing with Wren before bedtime, and reading books)

Wren nursed a bit more while I sang "Twinkle Twinkle little star" as a lullaby. Eventually he slowed down and let go and I said, "night night".

"Tinkle!" he said.
"Twinkle Twinkle little star"
"Tinkle. Tinkle" he added.
"OK, night night" I said, sitting up.
"MORE MUK!!!" he squawked

This little routine continued until I put him into his bed and he rolled on his side and is quiet.

He is very good at bedtime and smells wonderful - all warm and fragrant and plump.

Cath Scheduled

Wren's cath will be done on Friday 25th July as first case. That means a 7.30am check-in. Frost will be in FCS summer camp that afternoon so its not particularly bad timing as timing goes, and early in the morning will be easier for him to go without "muk muk" for a few hours.

This morning he slept till 5am so I was a happy camper. It is impressive how quickly my internal clock resets to baby waking. This morning I woke at 4am which is the time Wren has been waking for the past week. I had to convince myself it was worth going back to sleep with the threat of him waking any moment. I managed another 45 minutes for a full 6 hours!

And some normal 18 month appointment stuff

Wren weighed 25lbs 3oz (after 6 hours of fasting). This is just under the 50th percentile and seemed to satisfy the cardiology clinic that weight gain was not an issue.

He is 2ft 9 inches tall (and all of him is delicious and sweet). That makes him slight and skinny since he is on the 75th percentile for height.

More details

I spoke with our cardiologist this evening. I asked about the mitral valve. The mitral valve is difficult to repair and articles on Shone's syndrome often mention that the prognosis is inversely related to mitral valve involvement. In other words, it leads to recurrent valve replacements as well as other complications. It was reassuring to hear that Dr L did not see "anything to cause concern at this time".

I also asked about the timing of the surgery as distinct from the cath. He had told us that the cath should occur within 2 months. He said he imagined surgery from 3-6 months and would definitely like it before 6 months and before flu season. That means we are looking at September-November or early December.

I cannot recall exactly what he said about gradient vs rate of flow. I think he said that the peak flow rate was 5 mm/s which calculates out to a gradient of over 100. If that was due to the aortic valve it would mean that Wren has critical aortic stenosis and in fact he described the numbers are "rather scary". To make sense of this, you ADD the gradient pressures to the regular measured blood pressure to get a sense of the pressure in Wren's left ventricle. His BP was high normal, around 100, so his LV pressures are around 200 which is very high and is the reason for the thickening of the heart muscle and the ongoing cycle of increased muscle mass in the sub-aortic area. This is for the scientists among you:

The aortic valve area can be calculated non-invasively using echocardiographic flow velocities. Using the velocity of the blood through the valve, the pressure gradient across can be calculated by the modified Bernoulli's equation:

Gradient = 4(velocity)² mmHg

A normal aortic valve has no gradient. If the mean gradient is <25 mm Hg, the stenosis is mild; if the mean gradient is between 25 mm Hg and 50 mm Hg, the stenosis is moderate; if the mean gradient is >50 mm Hg the stenosis is severe; and when the gradient is greater than 70 mm Hg, the stenosis is critical.

In other details, Dr L described the type of SAS (sub-aortic stenosis) as "tunnel" type. This is a more difficult type to treat and there are a range of surgical approaches. We will wait to get more information before learning what the surgical conference recommends and getting a second opinion from Stanford.

On a more cheerful note, here are some of the new words Wren has mentioned recently:

Olive
cake
house
big cat
bear
push bottom (to get my bottom off the chair so he can watch diggers on Youtube)
mama home
roll
spider
bee (he calls all insects bees, saying "bee, bite!")
sharp
dough
bread
ow head
hair