Getting out

I have been trying to get out with Wren a bit more. Its not that easy because I have to reserve some energy for Frost getting home after school. Even then, I confess, he gets snack and TV most days and I seldom get to sit down and play with him alone until the weekend.

Anyway, last night Wren and I went to the KapKa lantern walk. We had cider and cookies at school and then walked to the Zoo Rose Garden and sang songs. Its usually for the winter solstice but this time we did it for Chinese New Year.

It was good to get out with Frost and Wren together. Today my legs ache from carrying him.

Now, today I went to the Thrift Store and bought some clothes for Frost and Wren. Both of them are growing out of their clothes and I am tired to squeezing them in. Wren is wearing 6-12mth clothes although he is not yet 3 months. He is such a fatty.

I am feeling sad and worried for the family of Ramona Mae. She was discharged but has been readmitted with low sats. They are concerned the repair has failed and do not know if there is anything else that can be done in that case. Hopefully it is something that can be fixed.

Little squeals and grabs

Today Wren is hanging onto things. If I lay a blanket over him he grasps it with both of his little hands and clings to it. When he cries he lets go and his arms fly up in the air. We went shopping and the whole way there he hung onto a burp cloth. I think he might need his own little blanket.

Another thing he is doing occasionally is squealing. Its most peculiar. He will make a kind of yelpy squeak. His usual talking is still grunts and little burbles and hoots and he makes a lot of chesty noises.

He likes to swat at his toys when he's lying under the gymini but he seldom captures them. It is quite exciting for him and he breathes fast while he's doing it and kicks his legs. Tummy time is not so much fun. He can push himself up but he complains fairly shortly afterwards and cries if I leave him even 5 minutes on the mat. However, he does like to lie on his tummy on the couch which slopes down a bit and makes it easier for him.

I have been reading Frost's baby journal to myself and find I was doing all kinds of new mommy stuff with Frost that I am neglecting in Wren. I was reading him books, singing songs and playing nursery rhymes. Got to get going on that again. I read Wren Peek a BOO book (the Peek a Moo one) and he liked it a lot. He likes looking at leaves against the window just as much though so I shan't beat myself up about it.

Hypochondria by proxy

Okay, before you start telling me I am nuts, I am. I know. The thing is I spent this afternoon diagnosing Wren with autism. Yes, you're right - even psychiatrists can't diagnose it before 18mths and its often only confirmed by age 5 - but since Wren's heart defect I am afflicted by the sense that any number of other terrible maladies are possible and the internet makes access to them easy. Its a case of hypochondria by proxy.

This is how it happened.

Today, at Listening Mothers one of the other moms mentioned her pediatrician was concerned because her baby's head had gone from the 37th percentile at birth to the 95th percentile at 6 months. He wanted her to check whether big heads run in the family. I remembered how Frost's head had also presented concerns by being very large.

I had been concerned about Wren's head for the opposite reason. At birth it was 25th percentile and was still 25th percentile at 2 months. At the cardiac clinic it was bigger - more like 50th percentile so I was relieved. The conversation at Listening Mother's made me wonder about head circumference so I googled it. Bad idea.

The lead articles on the google search were all about the correlation between rapid growth in head size and autism. Apparently, a study with a sample of 48 children with autism and a normal control group has shown that only 6% of non-autistic children show a rapid growth in head size from 25th percentile to upward of 95th percentile during the first six months or so. Fifty-nine percent of autistic children have this rapid growth.

So, I evaluated Wren for autism and noted that his head was small but growing rapidly and he is a bit slow to turn towards me when I call his name. I have to try lots of times before he responds. Sure, he smiles and engages in play during diaper change but at other times he would rather look at black and white patterns, leaves and light and that spinning mobile. Sounds like autism, right? [Yes, I know it also sounds like an 11 week old, but I am paranoid]

So, then I looked up Frost's chart to remind myself of his head circ measurements. Based on this theory Frost had a very very good chance of having autism. Not only did he have colic, gluten and dairy allergies but his head grew from 30th percentile to the 97th percentile in 2 months and then shot off the chart - way over 100th percentile by 6 months +. So, I am glad this study hadn't been done yet or I would still be analyzing him even though he is clearly normal.

Okay, you can tell me I am nuts now. Its just that thing about how once you have been struck by lightening you never look at the sky in the same way again. You keep thinking "it could happen to me." I should add that last month I noticed some fuzzy hair on Wren's back and diagnosed him with spina bifida occulta. I think I had Joshua convinced for a while but the pediatrician had to work hard not to laugh when she saw whas I was worried about. I think I will have to wait a few years before bringing up my autism theory.

New sounds

I received a call from our pediatrician on Monday. She said that Wren had been discharged from Swedish without having received his newborn hearing screen. She suggested we call Swedish and schedule a test with the audiologist.

I was sceptical. I mean, I am pretty sure Wren can hear. He jumps when I clink the glasses and he gets excited when we talk to him. I called the Newborn Screening people at Swedish and expressed my doubts. The technician persuaded me that its still worth doing because he could hear in only one ear or be feeling vibrations. Hrmm.. them good vibrations?

Well, today Wren has been busy expressing himself with new noises so even if he can't hear properly that must still feel good.

He is squealing, trilling and burbling in a pretty way.

Oh, now he is crying so I better go.

Fortune hookie?

In the grocery shopping this week I bought Frost a box of Fortune Cookies for Kids. I thought they might be fun to put in his lunchbox and have been giving him one every day. Yesterday, I asked him what his fortune was and he said it was something silly and that Signe had read it for him.

I was curious but forgot about it.

I was feeling snackish a moment ago and saw the box and took a cookie. Here is my fortune:

ILLEGAL DRUGS, SMOKING, ALCOHOLIC DRINKS ARE LIKE POISON - TRY TO KEEP YOUR BODY HEALTHY AND AVOID IT.

I can't stop laughing. These things should be age restricted!

Alternatively, the cookie knew I was going to have some Chardonnay tonight on our anniversary even though I am breastfeeding Wren!

Ah hah!

He found his hands

Today, my 11 week Baby E-mail Newsletter warned me to look out for CARS, FALLS, BURNS, DROWNING and POISON. It reminded me a baby can drown in mere inches of water and that I should have the poison control number in my purse.

I know these are real concerns. In the past few days in my online community there have been at least 2 cases of babies falling off sofas and out of swings. I guess the babies start to be more agile and energetic right now.

Still, Wren is blissfully unconcerned about the perils awaiting him in the world. His big news is that he has found his hands. For the past few days he seems to be gnawing on his fists at any chance he gets. He is also much more successful in escaping from his swaddle and if he can't get his hands out he manages to gnaw them through the cotton. Of course, I can see the argument that we should stop swaddling him now but all this gnawing and mouthing his hands doesn't seem to calm him - he finds it very exciting, agitating even. A number of times I have put him down to nap and had to return a few times because he has got hold of his fists and is thrashing around and grunting half asleep. Take away the hands and he quiets down a lot better. Anyone have any idea how long swaddling can last? Since Wren is now 15lbs he is too fat to enfold easily in the regular receiving blankets but I manage by folding diagonal and having his feet poke out!

His clinic stats from yesterday were:

• Weight: 15lbs 04ounces (95th percentile)


• Length: 24.43 inches (85th percentile)


• Head: 16" - (unknown percentile - I think it looks like just under 50th)
  

A note on prayer

I know we're not supposed to talk about politics and religion, let alone the politics of religion, but I have been thinking about it today so here goes.

See, when you have a sick child you want all the help you can get and kind people offer what they can to make things easier. They offer food, comfort and prayer. This puts me in a difficult position.

If there is a benign (or pissed-off) G-O-D up there I want him to help Wren. I am really keen that anyone who has a relationship with a God ask him or her or it to help Wren have a happy and healthy life. But I also feel guilty about this. I feel that its not fair that I hedge my bets this way when I am a buddhist who believes in a more general life force with less interest in a particular outcome for a particular life form. You know - its all interconnected so when we die our energy and our cells go someplace else. On earth.

Its difficult though. Sometimes the best thing we can offer has a feeling of prayer. I am watching the struggle of Ramona Mae, a little girl born a few weeks before Wren whose mother I met at an online Expecting Club for December babies. She has been diagnosed with a severe heart defect and is still in surgical recovery. Today, they found out she has DiGeorge syndrome - a chromosomal defect - on top of TOF with pulmonary atresia. Its tough. I know they are very religious and my impulse is to write "I am praying for you" but I'm not.

The same thing with my Aunt Rose who was recently diagnosed with brain cancer and has had brain surgery. She is doing well but it would feel better, easier, to write "You are in our prayers" at the end of an email. In various posts and emails to people in need I have written "you are in my thoughts", "best wishes", "hoping things turn out well" and "with metta". And sometimes I have cheated and written "I am praying things turn out well".

The thing is that prayer feels like a gift. Its showing a complete empathy of heart even when you don't actually touch someone. Its full of compassion. I am not sure how one sends metta (lovingkindness for buddhists) but I think it is also like prayer but directed as love rather than picking up a phone to call God. You just kind of send a wireless signal right to them.

I know there have been studies that show that prayer works. I am sure there are also studies that show that meditation works and that metta works. I am not sure that they work the same way or which works best but it feels a good thing to have lots of it going around and let everyone have their own go at it.

I've noticed that buddhists are very general in their metta - its about wishing balance into a situation of pain, of giving love unattached to outcome. Now Christians seem to pray in a very direct way. In Wren's case our prayer would be: "Please could you remove the muscular ridge on the left ventricular outflow tract and please let us see no problems with his mitral valve".

I was talking to our cardiologist today and mentioned that today's outcome was as good as could be hoped without a miraculous recovery but that since we were not devout at anything we hadn't expected that. He is Jewish. He mentioned that his previous patients had been praying about their child and his condition had actually improved... not just remained stable. I started to feel I had let Wren down.

Dammit, I should have been doing all this AND praying.

Clinic went well - but we have a syndrome

Wren had his third cardiac clinic visit this morning. He had an echo, EKG, pressures, weights and growth and a consult. The quick summary is that it went well and he is stable.

The echo showed that his obstructions are similar to the last study. The arch has the same level of turbulence around the coarc site - not too severe. The other area of concern is the LVOT where there is a muscular ridge which is causing moderate turbulence in the ascending aorta from the aortic valve on up. The mitral valve is looking fine although the tech described it as slightly small and slightly prolapsed. It isn't causing turbulence. Neither valve has regurgitation or leaking.

The L-ventricle walls are still a little thick but its not enlarged and is pretty similar to last time. His pressures are normal - maybe a tiny bit high but not a cause for concern.

Last visit Dr Lewin said he would be aggressive in talking about OHS if the LVOT is causing him trouble. Today he said he would be conservative in suggesting it because he looks as if he is doing well and showing no clinical signs of stress which is encouraging.

During the consult I asked him about "Shones Syndrome" because I have been 'talking' to a number of parents online whose kids have a similar complex of left heart problems and have been diagnosed with Shones Syndrome. Dr Lewin said he would call Wren's condition Shones Syndrome but he doesn't find the diagnosis useful. Prognosis and treatment depends on the severity of each problem and how it responds to intervention. He says he prefers to focus on the area that needs attention. For now, that is the LVOT. In general, the literature on Shones is very dire - saying that it has very poor outcomes. Apparently the severity is mainly based on mitral valve involvment. In Wren's case, his mitral valve is working fine for now.

We were teased a number of times about Wren's weight and size. He has gone from 5.4kg a month ago to 6.8kg and is now in the 95th %ile for weight and 85%tile for length. His head is also growing (16") but we didn't chart it.

So, it was a good appointment overall.

Wish us luck!

Wren's cardiac clinic starts at 9am tomorrow. He has an echo, stats and cardiology consult scheduled. We also need to get refills on his meds.

I hope we are home around noon with good news.

Frost goes back to school tomorrow which is good timing. Yesterday, I noticed his two new (adult) teeth - the first he has lost - are growing in slightly crooked. They are kind of overlapped. I see expensive dentistry in our future.

Now to work on the tax return.

Those UGH Moments

Ugh.

Tomorrow is our monthly cardiac clinic appointment so I am starting to get antsy. To make matters worse, while I was changing Wren's diaper this morning I noticed that there is a red bumpy rash around his left leg cath site. There is also a clear fluid oozing which looked a bit like infection.

I called the on-call cardiologist (Dr MacMillan) who recommended we take him to the ER to have blood tests for cellulitis. Then she changed her mind and said we could monitor him for fever, draw a line around the red area and make sure it doesn't spread and keep it clean. They can check tomorrow at clinic to see whether its just irritation, fungal or infection. She also asked me to check with our pediatrician.

The on-call pediatrician said I could take him to after-hours clinic at Childrens but their schedule is full for the day. She didn't recommend the ER because of risks of infection. So, we could take him to Overlake or wait till tomorrow. We are going to watch a bit longer and if he looks sick or it grows bigger we will get him seen somewhere.

Great. This has to be a weekend and in the middle of flu season.

So some days I feel that Wren is doing A-okay and is pretty much normal right now but then others I worry about him. Today is a worry day. Side by side with other babies Wren is so normal. He looks great on the outside but little things get in the way of complacency.

This week at our Listening Mother's meeting the facilitator did a "check in with your baby" meditation. We are instructed to match our baby's breaths for a few minutes. Um. right. Wren has a very fast base respiratory rate because of his heart. If I breathed like him I'd hyperventilate very fast.

So, I am watching him. He's sleeping in the swing and seems pretty happy and unfevered. At least this added concern has given me a reason to want Cardiac Clinic to come faster.