Saturday, March 10, 2007

Wow, its amazing

When I put Wren to bed last night his eye was crusty and had yellow goop coming out. I had dripped some breastmilk into it about three or four times and thought it was looking better but there was still redness and goop.

This morning I cleaned all the overnight crusted stuff off and washed it out with breastmilk again and ....voila.... his eye is clear with no discharge, redness or swelling. It looks normal!

I shall continue with the BM today but I wonder whether I need to take him to the ped after all. I suspect not.

Apparently this remedy - breastmilk to heal conjunctivitis - is fairly well known. In reading about it I also found this reference to: A recent study showed that adults who were breastfed as children had lower systolic blood pressure rates. The longer they were breast fed, the lower their risk for heart disease was.

I am intrigued. If that's true Wren will be nursing for years. I shall try and hunt down this study and see if it is legit.

Here is the study abstract.

Friday, March 9, 2007

Goopy eye

Wren has a goopy right eye. It is shiny and runny with a yellowish discharge and it is kind of red above it. He is going to the pediatrician tomorrow.

Edited to say:
Wren now has a low fever and his eye is quite swollen and very pussy. He is sad and alternates between crying, eating and sleeping.

Our pediatrician said to take him to the ER if he gets a fever over 103-4 or if a redness spreads to his face (the old cellulitis scare, I guess). I doubt it will. He is very miserable though and wants to be carried all the time.

She also recommended warm compresses on his eye. I think my naturopath once mentioned squirting breastmilk into his eye. It is not easy to aim!

A few pictures

Wren and Frost lying on the couch this morning. Wren is looking at his favorite mobile - the fishies.

Wish I lived in the country with a goat

I could really do with a goat today. Its a goatish rainy day with too much mess around the house for me to hope to get on top of. I am feeling miserable and have decided to see a counselor to try and get a handle on what is wrong. I don't know if this is just some post-partum artifact or if there is really just too much for me to cope with but I am tired and want to get coffee delivered every day and do nothing much else. If I had a goat he could eat all the popcorn off the living room floor and remove a few sweaters and neglected house plants too. I think digging in dirt would also do me good. I would leave Wren with the goat and if the goat was really wooly I could make a goat-wool sweater.

Sometimes coping is just breathing in and out.

On the way to school today Frost said that when he was 3 and 4 I told him not to yell when he was angry but that now I yell at him and am angry all the time. He suggested he draw up a chart with little boxes and every time I am angry I have to tick the box and give him a dollar. It makes me sad. I am really doing a lousy job with everyone except Wren. Wren thinks all is dandy because he gets carried all day and fed on a whim and sleeps when he wants. I don't know what I am angry about. I just feel that I have no space anymore and am drowning in a sea of lost shoes, cookie crumbles, dirty dishes and snarled bedsheets. I dream of throwing things away but sometimes even the solution is too much effort.

So, the country is looking good. My yurt could be messy or better still there would be a mummy-yurt and a Frost-yurt and a Joshua-yurt and a communal yurt and mine would be clean and peaceful all the time. In honor of the yurt-in-the-sky I am going to burn incense.

Thursday, March 8, 2007

Spilt milk

This evening I came to the realization that I will probably have to throw away all the breastmilk that is filling the freezer. I have pints of the stuff from the first 2 weeks of Wren's life when he was not allowed to take anything by mouth and then received tube feeds for a while. Now, Wren isn't taking bottles at all. I guess we could start him taking bottles occasionally - Josh has mentioned the idea - but I could always make a bottle for special occasions.

We have - I am not exaggerating - 2 weeks+ supply of milk pumped 3 hourly with at least 6 ounces a time (often more). So, do the math (I can't figure ounces but its a lot). It takes up half our freezer space.

Even though I know it was necessary to establish milk supply and it wasn't essential once he could nurse it feels sad to throw it all away.

Perhaps I can do it incrementally.. week by week as it reaches its useby date.


By contrast with the nightmare of yesterday (weeping and despair) today is marvelous. Wren is napping on my lap while I type over his head. I had take-out Thai for lunch and the Listening Mothers group was funny and therapeutic as always. Here's the update.

Sleeping and Pooping
Wren slept well last night. He went down [the windy trail to sleepbunny land] at 10pm and slept till 2am, then woke again at 5am and finally at 7am... BUT..(there has to be a but) I had a mild case of insomnia and didn't take advantage of the second three hours.

It was kind of funny. Wren hasn't been pooping on his normal schedule. He isn't constipated but he has started doing a very large poop once daily. Yesterday he didn't do one at all so Joshua and I were waiting for it. When it didn't come by bedtime we were thinking he would poop in the night. Sure enough, Josh thought he heard the giant poop around 2am so he got up to deal with it. I said I would help. So, both of us end up in Wren's room wrestling him out of his swaddle, his PJ's and his diaper to find... nothing!

He did this again around 5am - another false alarm. He finally pooped mid-morning and managed to shoot it up his back. Ugh. I am sure he felt better afterwards.

I wonder whether all this changing behaviour - less pooping, less napping, more vocal, more active - is something developmental as he approaches 3 months. Perhaps he is shaping his world?

Next Cardiolog Appointment Scheduled
Wren's next echo is on April 23rd at noon.

The Man Who Loves Hummingbirds
To pick up lunch, I snuggled Wren up in the sling and covered his head with one of Josh's stockingcaps. It was spitting rain and a swarm of starlings were shrieking in the big-leaf maples still brown from fall. As I looked up I noticed yet another hummingbird feeder. The stroll to the Thai Restaurant takes me through the neighborhood of "hummingbird city" where a man has hung hummingbird feeders on every tree and on every eave - not just his own. They are clear plastic tubes with lurid scarlet openings meant to simulate a blossom.

We met him one afternoon pouring sugarwater into a row of feeders from a large bucket. When we asked what he was doing he said he was feeding hummingbirds, that it was a critical period in late winter because the hummingbirds have babies then, that each bird had a small territory so there would be different hummingbirds feeding from different feeders up and down the street, that it was a lot to manage. We counted at least 25 of them in his and neighbours yards. He was about 55, was wearing jeans and a flannel shirt and has built an ornamental fountain in a raised cinderblock pond in his front yard. Oh, and he collects bowling balls. His wife told us that he drilled holes in the bottom of 30-odd bowling balls and glued a length of rebar in each so that he could arrange them as borders in the garden. Frost thinks they are fantastic. There is a whiff of outsider art to it - something children love more than adults, whimsy, foolish but compelling. He is very territorial about it much like one of the birds he describes feeds in his fiercely systematic way.

Wednesday, March 7, 2007

Hearing test

Wren had a hearing test today. Apparently all babies are supposed to be screened in hospital but Wren was missed because he was in the NICU. Anyway, it was a palaver because he had to be asleep for it and as we all know, he doesn't sleep.

After a lot of effort he was tested and passed.

His sleep today was a nightmare. Through a series of unfortunate circumstances - getting ready to go to the doctor, hearing test, a noise in the afternoon Wren was interupted during three consecutive naps and had slept for only 1 hour by 3pm. He was inconsolable. I had to carry him to sleep for all remaining naps with some backup from the Rainforest Swing (bless this invention.)

I think Heather has it right - he is overtired - but its a vicious cyle in getting things set to rights.

I saw the dermatologist today for a skin check and had a basal cell carcinoma. The dermatologist said since it was so small it was okay to freeze it so she used the liquid nitrogen to free an area slightly smaller than a dime. It hurt and has formed a blister but I shall survive.

We have a problem

After all Wren has been through I feel loathe to complain about him. We are lucky to have him: his feet, hands, hair, smell, snuffly noises and fat belly are perfect and even his less than ideal behaviours like the effort he puts into loud bowel motions and gnawing on your shoulder are somewhat endearing. Nonetheless, without wanting to jinx anything and send him back I must complain. His sleep is not perfect and its not endearing.

I am not coping with it at all.

This morning I threw a tantrum with the household in general. Well, not completely general since Josh slept through it but Frost, Wren and the cats were all the subject of my frustrated outburst. No, lets not mince words: my fear and anger. The mental subject line of this memo to the family was Wren has to sleep better.

Last night he slept 8pm -9pm. I went to bed at 9.40pm and he woke at 12.30am, 2.30am, 3.30am, 4.30am, 5.30am and 6.30am. I got no more sleep. I was okay first thing in the morning but Wren was exhausted by 8.15 and wanted to sleep but the only way he'll do it is by being carried. I am at my wits end. I put him down in his bed and he screamed bloodly murder or "get here this minute mummy I am going to be eaten by lions" or whatever primal terror is generated by being asked to sleep alone.

Until last week I could set him down and he would fall asleep with minimal whining. Now he lets rip with a mighty cry within minutes and doesn't let up until he is shrieking like a fire engine on the way to a multi-storey emergency. The sound tears at me and I worry his heart will pop - strain the sutures and thus my desire for sleep will kill him. I remember how his blood pressure spiked when he cried and I freak out and pick him up. I set him down when he soothes then we go through it again, escalating each time till I cave and carry him for his nap. I can set him down eventually and he naps 20 minutes more but you can see how this gets to me. I can't nap because I am holding him. Ugh.

Anyway, he is now napping in the swing and will no doubt refuse to nap for his scheduled hearing test this morning. It is at Swedish First Hill and I am supposed to deliver a sleeping infant for testing. Of course, it doesn't help that my Swedish baby email this morning tells me that:

A 3-month-old is no longer a newborn. By 12 weeks of age, most babies have settled into a manageable routine of eating and sleeping. They've usually outgrown the tendency to cry inconsolably in the evening... You've learned so much, and everything is easier.

What are they on? What is up with Wren? Why do I breed such lousy sleepers? I feel all ashamed at being so mad with everyone while Wren was crying [Frost for not putting on his shoes, cats for sleeping on my meditation cushion] but I will probably do it again next time.

Tuesday, March 6, 2007

A real big one

I went shopping at Wholefoods today. While I was descending in the elevator with Wren asleep in the moby-wrap a gray-haired woman wearing something Tibetan said:

"three months?" (Guessing the age of the baby is a common segue into conversation with a parent) so I replied:

"11 weeks"
"Ooh" she said "A big one."

He is big. He's a fat squishy warm lump of himself and I am proud whenever anyone comments on it, which is often. It feels as if we are doing something good, something we can control, as if making him big and fat we can outrun the tick-tock obstructions which are going on in there.

Another day at a coffee place in U-Village I met a woman who has a grandbaby of a similar age and because the line was long and slow and she was going on and on about their experiences in the early months I mentioned the "heart surgery" experience. It stopped the conversation - perhaps our common ground receded. She peered at him a bit and said "you would never guess" and then smiled too much and looked at the menu attentively.

Meanwhile two gay guys with a poodle kept smiling at me and one mouthed "lovely" at Wren in his jade silk sling.

The cat is snoring which reminds me I should nap while Wren is. Frost is due home soon and we have a date to count 100 toy cars into a bag in anticipation of the 100th day of kindergarten tomorrow.

I shall take a picture.

Monday, March 5, 2007


Wren had his third Synagis shot today. He weighed 15lbs 6oz and so he had two jabs. Ouch. He has been sleepy since but seems okay.

Frost and I are going for a walk to buy skittles to fill the Lego candy dispenser we just made.

Wren is hanging out with Josh who is hanging out with his bloglines feed.

Its Sunday.

The Doctor Patient Relationship

In the past, when we visited the doctor occasionally for a cough-gone-on-too-long or routine well-child visits my relationship with doctors was pretty benign. I picked a doctor with whom I felt rapport and whom I could trust to recommend something alternative before antibiotics. Immunization was optional.

One of the first losses I felt when I learned about Wren's heart condition was the sense that we could afford to be distant from mainstream medicine. Instead, we would need it - depend on big machines and drugs with side effects I wouldn't have time to question. Frost would need to be immunized and Wren wouldn't get to have his homeopathic remedies to see him through a week of fever. Frost is five and hasn't had antibiotics yet - Wren would get them with his first surgery.

At first I was so thankful to meet doctors who thought they knew about conditions like Wrens' that I fell in love with pediatric cardiology. I would lie on the couch with my hands on my big pregnant belly and contemplate my impending 40th birthday and whether I could train to be a doctor in time to make it worthwhile. When I decided I couldn't I daydreamed about my could-a-been life as a surgeon.

I think it is typical, and healthy, for parents of a sick child to fall out of love with their doctors pretty quickly.

Its not that you don't appreciate and admire the work they do but you get to a point when you get angry and realize that they don't know everything, they're just playing the numbers game quicker than you and are following habits of care, some of which may be the best for your kid and some of which may not.

My moment of getting mad was when we were discussing Wren's surgical options. Our surgeon is very skilled and I have heard other parents and nurses calling him "the superstar". In Wren's case he favored a three staged procedure called The Norwood which would have converted Wren's heart to a univentricular system. He has good results with it. We didn't like the sound of that. I did lots of reading and found that in cases like Wrens when heart function is borderline pre-repair there are many opinions as to what is the best approach. The surgery that is performed is a function of the style of the cardiologists, the particular experience of the surgeon and the cases that have come in months before. Its not like feeding your data into a machine and getting a clear answer.

There are a lot of "if, then and maybe".

To his credit, our surgeon agreed to give an alternative approach a try because he believes in a team approach. That was the consensus and we feel lucky and grateful it worked but there was that moment at which I moved from trust to anger and then back to a more wary collaboration. In retrospect it was when I moved from a position of passivity to one of confidence in relation to Wren's team.

I don't know whether it was always my thing but in the medical setting it often feels as if there is a script that the patient (or patients parent's) get to follow. We are meant to receive the information at the right time and respond only on those topics. A classic example is the prenatal ultrasound when you know the ultrasound technician has seen something bad but s/he smiles and says "I couldn't get a good picture, I need the doctor to takea look at this." You know they know, they know you know and its just a little dance for the right person to give you the news.

When I met parents in our heart-kids support group they said that we will become the experts on Wren's heart and that I should apply for full copies of all his medical records, read and make a big file of them. That was how one parent found out her son had lost his thymus during surgery. For us, I was thinking "why?" Now I realize new doctors won't know Wren's unique heart issues, what has been done, that his ileac is blocked on the left. It would take them a long while to pick it all up from the file and they may miss something if its in a hurry. Even his doctors see many other patients between the times they see us.

Seven months ago I didn't know what a ventricle was and now I can talk in depth about heart anatomy and its anomalies, the cardio-pulmonary system, venous flow and pressures, drugs that alter them and clinical signs of poor perfusion, when its okay and when its not. Its impressive what we know, what we learn when we have to.

So we've come a long way but sometimes I miss the ease of going to the doctor in the old way. This week I have 2 doctors preventative appointments that may be like that. I am going to the dermatologist for a skin check (growing up in South Africa and Australia we are always watching out for skin problems) and to see our naturopath in case I am calcium and HDL deficient again.

Hope not.

Sunday, March 4, 2007

Sleep redux

Just when I thought we had this sleep thing down pat Wren goes and does a bizarre night on me. Here it is, Saturday morning, my day to SLEEEEEP IN and I am up at 6.45am, just glad to get out of the bedroom.

First, he slept for FIVE HOURS (9pm till 2am) then woke almost EVERY HOUR (no kidding - 3.30,, 6.45). I have slept with my head under a pillow half the night. I have now put him in the swing and he will, no doubt, sleep for another few hours so I might salvage some sleep on the couch if I don't succumb to coffee.

He wasn't up long each hour - just enough to cry and wake me then fall asleep after I patted and rocked him, or nursed him once.

Ugh, ugh, double-ugh.

I am trying to figure it out and I think he may have gas as he is grunting and stretching but honestly... why sleep 5 hours the same night? Its messing with my logic.

As always on nights of many interuptions I had lurid dreams. The ones I recall are three men being swept down a water sluice into a treatment works, playing a video game in real life inside the game (it was a Lord of the Rings Game) and doing lots of athletic feats with my strong body (it sure was a dream.)

I should start yoga again. I really should. They have a Mums and Babies class at 8 Limbs Yoga I mean to try.