Strep Infection

Last night Wren woke crying at 10.30pm and despite soothing, singing and rocking he could not get back to sleep until 2am. At that point Josh and I were slouching on the couch in the dark while Wren tossed and flopped to find a comfortable spot on our laps. Eventually, he settled back to sleep (after Tylenol) and we managed to transfer him to his crib. He nursed at 6am and we all slept in till 8. During the night we couldn't find what was bothering him although he was grasping at his diaper a lot and crying as if in pain. He also seemed just exhausted we were confused.

This morning he was okay but wouldn't let me carry him over my hip. He didn't sit on his bottom but sat sideways instead. When I did diaper change I noticed he had a lot of redness and blotching in his groin and diaper area that looked different to a diaper rash so I called the pediatrician to see if they would see him this morning. It was clear he was in pain from whatever it was.

Turns out he has a strep infection in the groin area. I don't know how it got in but due to the tenderness, spread and some mild inflammation the ped thinks it may be in the tissues and he is on oral antibiotics as well as a topical one. I don't think this will help us manage the yeast infection we are just over.

The ped said this is fairly common and not to worry about it unless it worsens while on antibiotics or is not gone by Monday. I have called our naturopath to see Wren next week because this seems a bit much to have a yeast infection and now strep for the second time (in our family) in 6 months.

The naturopath suggests that we give Wren some sacromyces Florstar which is a kind of acidophilos you can take during antibiotics. That should reduce the whole risk of fungal infection.

Christmas

Today was my birthday and we had a mellow day. Heather watched Wren in the morning while Josh took Alexander and Frost to Chuck E Cheese. I hung out at Olympus Spa in Lynnwood and had a manicure. Yum. I now have pretty pink nails and a belly full of German Chocolate cake. Frost was happy because he had 180 "tickets" and scored a candy necklace and Alexander was pleased with his plastic soldiers. The boys spent much of the afternoon building the Lego Dwarves Mine Frost received for Christmas.

Christmas was fun too. We had a surprise snowfall which was pretty and made for a picture-book Christmas: our firelog burning and Frost bringing a procession of big presents through from the tree in the kitchen. Frost received the most gifts - lego, a rock collection, books and candy. Joshua kept waiting for his 'big' present XBox 360 Rock Band. It emerged eventually with great fanfare from Frost. Since then Josh has taken over the living room with his drums, guitar and noisy clacking. I have tried to drum but am awful. I don't know what it is about following the rhythm but I am unable to do it. I get boo-ed from the stage with embarrassing regularity. Wren likes the cables and the drumsticks and tries to steal them at every opportunity.

My 'big' present was a complete surprise. Josh gave me an iPod touch. It is incredibly fun to play with and has all my photos and music on it. This afternoon I lay in bed and read a book while listening to Jim O'Rourke on the iPod. It was a good moment. I am now tempted to get more music since I haven't really kept up with music recently. It will also be great for running (I have started running again this week.)

In the late afternoon we went over to Laurie and Eric's for dinner. They made the most delectable pork roast and potatoes. Frost is not usually a big eater but he devoured all his vegetables. On Boxing Day we had this exchange:

I offered Frost a baked potato. As usual, he said "no". Then there was a pause. "Are they going to have those green things on them like last night? And salt?"
"Did you like the potatoes last night?" I asked.
"Like them? LIKE THEM? L-I-K-E T-H-E-M????" replied Frost. "I LOVED THEM. I worship them. I pray to those potatoes!"
So, I shall have to get the recipe sometime since Frost only eats mashed and fried potatoes and when I kid asks for something with herbs on, I must deliver.

Now, the pictures. Here are the kids on Christmas Eve playing on the sofa bed in the living room.


And a rare picture of me with Wren.


Wren was not too thrilled to be out in the snow on Christmas day but Frost rushed out with Elias in his T-shirt. After playing in the snow and building a mini-snowman he came running in saying his hands had pins and needles. He was very upset. I tried not to do an 'I told you so' moment but it was hard.


This is our Front yard in the snow.

Christmas-Birthday

This is Wren in the birthday chair at Frost's school. We were at school on Thursday morning and the kids sang Happy Birthday to him, the normal way and the KapKa special song. He was bemused but Frost was very pleased and excited.


And this picture was taken yesterday and shows Wren in his high chair in front of our Christmas tree. It is set up on the table in our Kitchen to keep it out of reach of Wrenness. He is eating french toast made with creme fraiche and slathered with syrup and butter. We are trying to fatten him up. HE is enjoying it.

Bipedalism

We said Wren can walk. Here is the proof. Actually, this is also proof that Wren is responsible for sucking on and possibly destroying the XBox 360 controller. He senses its potency and realizes it is an object that must be possessed if not mastered.

Peek a Boo Movie

Here is Wren playing peek-a-boo under the table. He likes to duck under and then pop out to surprise us.

Getting ready for Christmas

Yesterday we went shopping as a family. It was less drama than I anticipated. We did some last minute toy shopping: Wren received a couple of sheep since he is learning to say "baa" [aside: this morning he said BUB-BUB quite clearly while Frost blew bubbles for him]. We also bought a couple of gifts for friends of Frost.

Joshua bravely entered Fred Meyer in search of a floor lamp and some wireless accessories and came back with some of the things on his list. We drove down to Fremont and had lunch at Blue C Sushi before visiting PCC and Dustry Strings (a music store) with small and older children respectively. Frost came back from the music store saying he wanted a $700 violin and Wren and I did the grocery shopping narrowly missing buying duck and rabbit (I am hungry for Flesh living with this meat-selective family).

We have been reading Laura Ingalls Wilder's Little House in the Big Wood at bedtime. The last chapter we read was about a party at the end of maple sugar season. The party continued while the maple syryp was stirred and ended as the sugar granulated and was poured with some left over for the children to make maple candy. I was pleased to see boxes of Maple Candy on sale at PCC so we bought a few little sample boxes. Frost was very curious and opened his box this morning (before breakfast). Maple candy is the most delicious stuff in the world! It is just like the most sublime vanilla fudge but is 100% maple sugar. As Laura writes (paraphrased) "the children were allowed to eat as much as they wanted because maple sugar never hurt anybody!" [ho hum] Frost and I have decided that Maple Candy is going to be one of our Christmas traditions. Frost plans to eat "the big maple leaf candy on Christmas day. We can divide it in 3." When I reminded him that Wren might like a taste too he said he would break off a little piece for him then.

Speaking of Christmas traditions. Yesterday I made my own shortcrust pastry (possible since we have ample butter in the house all the better to fatten Wren with.] I rolled it out and made a batch of mince pies with a bottled fruit mince they had at QFC. I am pleased that everyone on the family finds them delicious. I was doubtful so made some of them into jam tarts but the mince pies are far more popular. They were sinfully delicious hot and I made myself calculate their WEightwatcher points so I could not claim ignorance and nibble a batch myself (they are 3 points each!)

I have pulled up some Christmas Carols on Rhapsody (online music service via Comcast) and but for the fact I haven't slept since 4am due to Wren having a bad night (wet diaper leaking and banging head on toybox during AM nursing) we are feeling pretty festive.

Wrens' 12 month pediatrician visit

On Thursday Wren went to see Dr Levitt for his 12 month 'well-baby' checkup. He is well. He received ticks on all his developmental milestones:

• Walking


• First word "mah" = milk


• Eating by himself


• Sleeping better


• Social interaction and play

He is 31.5" long which puts him in the 90th percentile.

His head is 47." around which puts him in the 75th percentile which is the same as before. If you recall, this was a concern at 9 months as his head had increased proportionally. It is reassuring to the ped that it stayed the same at this point although I pointed out that Frost's head was 97th percentile+ at this point and he is ok, I think!

His weight is the only concern. It fell from the 75th percentile to the 48th percentile. He weighs 22 lbs 8oz which is a gain of 1 lb in three months. I have been encouraged to nurse fewer snack nursings which may allow him to top up without eating enough, feed him more calorie rich foods like cream, milk, cheese and butter (why does dairy get to star in this line-up? Were there no fat Chinese babies? I am going with butter and cream but refused milk so we are going to have some ground nuts and I am looking for other fattening alternatives. He refuses avocado which was my immediate first thought. Frost guzzled avocado. Since the appointment Wren has developed a taste for toasted butter sandwiches and creme fraiche with banana.

He received two shots although he did not qualify for the HIB shot at 12 months because there is a HIB shortage due to a vaccine recall. He should get it by 18 mths. He has had no reaction to the shots which were given in his arm. This is great because he still has leg edema due to the obstruction to his ileac vein. We are hoping this subsides as collaterals develop. Dr Lewin said this may "take time" [no idea how much].

We have been given a sheet about development. Wren is supposed to develop the following physical and social abilities over the next three months. Here are the ones he is doing already:

Walking and standing alone
shakes head for NO (before learning to nod for YES)
drinks from a cup
hands a toy to a parent when asked
copies adults
remembers people and objects
uses one or two words


We are also given some activities he may like: play hide-and-seek with a toy, allow him to feed himself finger foods, point to body parts and name them, climbing, crayons on paper, ask "who is that?" and read picture books.

We do many of these but have not let him have crayons because he eats them up. He can already recognize and point to a number of body parts but we shall continue. He likes to shove his hand in my mouth when I say MOUTH and into my eye when I say eyes so we have to teach some more delicacy as these activities progress.

Dr Levitt suggested we start him on cow's milk and decrease nursing but that irritated me. I am having trouble nursing at the moment anyway. Wren is frustrated at time, pulls away a lot and is nursing less anyway. Still, I believe it is good for him to continue. I think that offering milk may lead to weaning when we have a poor track record of milk tolerance in the family. So, I am just ignoring that advice. I think he has a mild yeast infection in his mouth and he is getting nystatin for that.

The right hospital for your baby's heart surgery

When we found out that Wren was going to be born with a CHD we spent a lot of time thinking about whether to travel down to Stanford or stay with Seattle Children's Hospital Heart Center for his procedure. It was a hard decision because his prenatal diagnosis was not fixed and in fact was complicated shortly after birth. If we had been certain he would need a Norwood we may have flown to Stanford since we had heard good things about the success rates there. The advice we were given was that Dr Cohen is a great surgeon but Seattle Children's was not yet as established in terms of volume to take a chance.

In our case, things worked out very well staying in Seattle. Wren had a coarc and aortic arch repair and a cath procedure for his valve. We were very happy with the surgical team and received great treatment and support in the Cardiac ICU at Children's. We were 10 minutes from home so there was a huge benefit for our family and elder child and granny to stay home and keep us all sane.

Still, at the time it was a huge decision and I was frustrated with the lack of data on success rates at different pediatric heart surgery centers. I think I would have felt even more desirous of that data if I had read this article I received from LittleHearts on the difference in survival rates at centers of excellence in heart surgery:

The study shows that an infant's risk of dying in the hospital during or after their operation varied greatly depending on the number of each procedure performed that year at the hospital where they were treated. Mortality rates ranged from more than 10 percent to less than 1 percent for the arterial switch operation, and from more than 35 percent to around 10 percent for the Norwood procedure.

And the researchers conclude:

"For the more routine congenital heart surgery, outcomes are excellent everywhere," says Hirsch. "But when it comes to a child with a complex defect, it's important to send him or her to a center of excellence. And the parents of these children are often so overwhelmed by their sudden situation, it will be important to develop the systems and support that will help them get to the right place."

I hope this kind of support and these systems are developed quickly. Right now, the decision is shaped by the cardiologists (who makes a recommendation), the surgeons and the family who may or may not have the resources to conduct independent research to inform their choice. At our local CHD family support group we are frequently visited by families who have received a diagnosis and are trying to select a hospital for the surgery. They are almost always confused and seeking access to impartial and potentially life saving information.

Cardiologists are not without bias. They may believe their hospital program is able to perform surgeries well despite the better results elsewhere. Surgeons who want their team to become a center of excellence may try and persuade families to stay at local hospitals even though they have not (yet) achieved the reputation or experience of the centers mentioned. These factors need to be taken into account. Families who have chosen an institution may recommend it even though their child has a completely different CHD and prognosis. If data becomes available that will be a great step forward.

Now that there is added information to show the importance of Choosing the right institution there will be added pressure on families to make "the right" choice and perhaps added pressure on Insurance companies to cover inter state heart surgery referrals.

Here is the full reference to this article:
University of Michigan Health System (2007, December 20). For Babies With Heart Defects, Death Risk Is Far Lower At Most Experienced Hospitals. ScienceDaily. Retrieved December 20, 2007, from http://www.sciencedaily.com­ /releases/2007/12/071217092926.htm

Conversations with Wren who is just 1

"Hey Wren, what are you doing?" I ask
"Heeeeeee aaaaah" he replies.

"ghu ghu ghu ghu" he adds.
"Oh, dear, do you have the lid of Frost's vitamins?"

He notices I am typing and drops his 'toy' to come and pull on my pajama pants and cry to be picked up.

"Ok, ok"

We will go and read a book now. Wren likes the board books with big photographs and points to a ball, a banana and a few other things when asked "where's the Ball?". He points to TIGER if you ask where the kitty is.

His only real word is "Mah? mah?" which is his word for milk. He signs milk at the same time so I am sure that is what he means.

Josh says that he has a word for kitty and fish but I can't hear anything except intonation. "kitties????" = "oooeeees????"

Wren had his 12 month checkup with our pediatrician today and I shall post on that shortly.

12 month cardiology clinic

Wren had a Children's Hospital cardiology clinic this week. He had an EKG and upper and lower pressures, height and weight. The summary from Dr Lewin is that his heart condition is "stable".

The EKG and pressures were very easy since Wren was mesmerized by the bubbles Wendy was blowing and sat quietly. His EKG was normal which is supposed to show that his heart is putting out a usual degree of electrical impulse indicating it is not thickening due to the higher pressures in his left side. The pressures were good but still showed a mild gradient upper to lower. I think DR Lewin mentioned to his intern that if she listened at Wren's back she could hear turbulence in the aortic arch which "is that 6mm gradient". I am not sure exactly what that means. He said there was no sound from the valves which means they are not leaking. [leaking? I was thinking. Were you worried they might leak?]

Dr Lewin said that Wren does not need RSV shots and that they would probably not be approved this year because he is doing well.

His weight was 22 lbs and I want to say 8oz but it may have been more. His head was 47 and a half inches. I am a little concerned that Wren hasn't gained much weight since his 9 month appointment. He weighed 21 lbs 6oz then and was 75th %tile but based on the weight at clinic is is under 50th percentile this week. Dr Lewin said it might be because he is now so active (Walking a lot!) but it may also be due to the stomach flu he had for a few weeks.

The only frustrating part of the appointment is the ongoing uncertainty regarding Wren's prognosis. Dr Lewin was not at all clear about what we can expect. He would only say he is stable and doing well now and they want to see him in 6 months for a sedated echo. Actually, they will try a non-sedated echo but if he wriggles too much it will be sedated. They will be looking to see how the LVOT ridge is developing, whether it has increased or not.

It feels difficult to have no expectation about how Wren's heart is going to develop and what treatment, if any, he will require. Dr Lewin seemed to feel that there was some inevitable mysterious course that his heart would take and when I asked about low salt diet he said only that he didn't think any kids should eat much salt and processed food but that nothing we could do would "alter the course Wren's heart will take" or something like that. I tried not to insert ominous music at that point since everyone's demeanor was pleased and cheery. I guess this is the difference between Wren's CHD and a full repair.