Saturday, January 13, 2007

First bath

Wren's wound is healing so well that the Pediatrician said it no longer needs packing or even dressing. It is just a long thin line. So, we gave Wren his first bath.

I didn't want to soak him in water just yet so it was more a half-bath and half-sponge-bath but he was in the little tub. At first he yelled but then he started to relax. Here is the relaxed picture.

He's also relaxed in the next one. I am still a human pacifier - all that nice scheduling from the hospital has gone out the window although I shouldn't complain since we slept for three 2-hour+ stretches last night.

Friday, January 12, 2007


The thing I am finding hard thesedays is knowing what behaviour may be due to Wren's heart defect and what is normal baby stuff. Josh says I am looking for something to worry about but its a hard habit to kick.

Last night Wren woke hourly from 3am onwards. I am not a great slave to Dr Sears but according to the learned pediatrician babies this age usually wake 2 to 3 times a night. Uh huh? Wren is waking at least 6 times between 10pm and 7am. He doesn't always wake fully - sometimes he is just grunting and groaning intermittently (like every 5 minutes for an hour). Nonetheless I can't sleep through it.

So, last night I worried that he couldn't poop because his bowel wasn't working. This was an early concern when he had the coarc because apparently the blood supply to the bowel can be compromised. Of course, this morning he has had plenty of "wet and soiled" diapers and seems happy so its probably another of my anxieties.

Add it to - are his hands and feet cool due to poor perfusion or normal infant circulation? Is he spitting up because of a dairy allergy or reflux that is more common in cardiac babies? Does he turn red when he cries because of hypertension? Argh.

Hospital Bill #1

This year we managed to hit the medical trifecta - Josh's appendictomy, my delivery and Wren's surgery - and will actually qualify to deduct medical expenses on our tax return for the first (and hopefully the last) time. We also get to pay the family out of pocket maximum which sounds like a real bargain at $6000.

The reason it sounds cheap is that we have received the first of the bills for Wren's hospitalization and surgery. The bill from Children's (not all inclusive yet) is $131,587.72. We have not yet seen the bill from Swedish for the 3 and a bit days in the NICU there or my my delivery. While the Children's bill is a ton of money its less than I expected based on other figures I have seen. Looking at the deail, the majority was for Wren's post-surgery and recovery care in "room / bed charges" which were $68,820. The other big charges were pharmacy and labs which totalled over $30K.

If the surgeon could perform in a vacuum heart surgery would be a real bargain!

Thursday, January 11, 2007

Sleeping in short snatches

If anyone knows what gives babies gas, I am keen to know. Wren wants to nurse constantly. Half the time he wants to eat the rest of the time it is to help him pass gas. He latches on, gets an intent look, goes red with exertion and then makes the most godawful farting noise. Its like a jet engine. Then he goes back to sleep. Last night - another night of no more than (and often less than) 90 minutes of sleep in a row - I decided to investigate what was going on and noticed that he doesn't actually wake crying. He wakes grunting and writhing and working something out and for most of these wake-ups he just wants to latch on for a short while before passing out again.

So, I think that the tummy discomfit is waking him. Its certainly waking him from naps in the daytime too.

I have cut out a lot of dairy from my diet but still have been eating cheese (in particular goat cheese) so perhaps I should be more vigilant in that regard since Frost had a dairy allergy until he was 4 years old. Still, with Frost is showed up as eczema and diarrhea later on. Ho hum. Cheese is such a treat for me but so is sleep.

Frost wanted to sleep in the wedge today. I told him he was too big so he ran into the bedroom and fake cried into the baby monitor. He is very good natured about it but he clearly wants some of the baby-attention.

Now, with all my sleeplessness why am I awake? Its always a delicate balance between insanity from having no time to myself and insanity from sleep deprivation. I think the balance has been struck and I am off to bed.

Mystery gift?

So, I received a mystery gift in the mail. I am not sure whether it is supposed to be a mystery... but it has no card or info on the sender. Josh says its pretty certain NOT to be a gift from the Social Security Administration so if you know more, fess up!

I am wearing it all the time. Its lovely and "kyoot" as Frost would write. I feel happy.

The mystery gift unveiled

Wednesday, January 10, 2007

Teletubbie time?

Wren is starting to be alert for longer periods so I figured it was time to break out the Baby Einstein DVD's and tivo up some Teletubbies to entertain him. Okay, I'm kidding, but he is really interested in staring at lights and windows and faces and sometimes obscure things like the designs on the bedroom curtains. He is interested in Frost and sometimes when you are holding him he twists his head as far around as it can go towards a new voice.

This morning we went to the pediatrician for his first real checkup. Basically, Dr Levitt said he is looking great. She listened to his heart and said he still has the murmur (no surprise there), upped his dose of Zantac because of the reflux but didn't put him on Reglan because he is STILL GAINING WEIGHT.

Today he weighed 4.5kg - so even with fluctuation for nursing vs pooping (he pooped right before the weight check) he is doing very well on nursing only.

This is no big surprise for Josh and I as he is nursing very frequently at night and fairly frequently during the day. Dr Levitt thought it might be because he couldn't eat large quantities yet but I think its because he is a greedy little potato like his brother was (and probably would still be if pizza came from the breast).

Other news - he had his second PKU test because there were no records of it being done in hospital. I forgot to ask his weight and head circ so I shall check that our next visit.

He is on the schedule to have his second synergis shot on the 27th of Jan. We are not sure whether it will be done at Children's or whether they will come to our house.

I asked Dr Levitt whether she thought we could travel in May (to Florida) and she said there is no reason for him not to from her perspective since his sats were good and he is stable BUT we should ask our cardiologist for the final word as he knows more awhat to expect of Wren's heart condition.

He's yelling now so I have to swallow this mouthful and run.

Tuesday, January 9, 2007

Photo fire and food

Frost holding Wren today.

I can't believe it, but I slept for 2 hours this afternoon. I think I would have kept on sleeping till Frost arrived home but I heard the phone ringing and got up. As a result of my epic nap I am feeling much refreshed and have lit a Java fire log, taken AND uploaded some new pictures of Wren while Frost draws pictures of SpongeBob's ARMY.

The food title is in reference to the wonderful help we are receiving from friends and school families who are giving us a great meal every couple of days. This means that the witching hour of 5pm when I try and make time to cook is no longer high pressure. Tonight we are having two different leftovers and I am enjoying doing nothing more complex than pouring a mixing Hot Chocolate for Frost after school.

This is of Josh and Wren in the glider over the weekend.

Wren this afternoon (1/7/07)

A drawing Frost did at school today showing the family and Wren going "Wawawawa, because he is hungry". When Wren cries loudly Frost calls it "psycho wah wah" and unfortunately this is sticking in my mind. According to Frost the "eeeeee" noise is being made by one of the rats and the person at the right is Joshua singing to Wren. I am the one saying "wren" and Frost is the one saying "ha ha ha" cos he "saw something funny on television while Wren was in the living room".

Frost is very keen to interact with Wren and loves stories about the games they will be able to play when he is bigger. When he comes home from school Frost is disappointed if Wren is asleep and always comments that "he looks bigger today".


Wren weighed 4.4 kg this morning, exactly 3 days after his last weight-check. Granted there may be some inconsistency since this was a different scale but it seems good news. Also, he was very hungry at the time and nursed a lot after the weight-check so that would have made an immediate difference.

This means we can keep doing the BF on demand thing instead of trying to feed calorie-added breastmilk by ng tube or bottle.

Our pediatrician wants to see us again tomorrow (rather than next week) so I will have the full story then.


Monday, January 8, 2007


Nothing new to report today. Wren has been nursing, spitting-up, sleeping, crying, looking around and all the other normal things babies do. I have had to remind myself to do the wound dressing and stuff because he looks so normal.

Without the ng tube Wren's fast breathing is not as noticable and he seems so much more comfortable. After feeding I carry him around very careful as any squeezing or horizontal time is liable to make him cover us both in milk but I am getting good at picking my moments for diaper change.

This afternoon I went to the eart-to-Heart Congenital Heart Defects Support Group which meets monthly at Seattle Children's Hospital. It is very reassuring to meet people for whom this stuff has become 'normal' and who know what a VSD or Coarc is without translation. That said, we had some very funny explanation of a "committed vs uncommitted ASD" from a couple whose unborn-baby has received a prenatal diagnosis of CHD.

After that I changed my milk-soaked clothing, had a good nap and am enjoying the bounty of food delivered by friends. A huge THANKYOU to all of you (and we are developing a real obsession for balsamic vinagrette).

Wren had a sponge-bath tonight and complained a great deal. He is now sleeping it off.

Sunday, January 7, 2007

Pediatrician update

I spoke with the on-call pediatrician about our bottle problems vs tube and weight gain. I proposed we breastfeed mainly this weekend and keep trying the occasional bottle then come in for a weight-check and he thought this was a good idea. He asked that we keep track of wet diapers and poops to make sure Wren was getting enough breastmilk.

If weight-gain is okay on Monday we will keep just nursing till our first normal pediatrician appointment that Friday. Otherwise the tube will need to be replaced.

Our appointment is at 11.30am.

Meanwhile, Frost is working hard at being a big brother. He keeps wanting to put the little hospital vibrator under Wren, regale him with song, pulls faces, is setting up a gallery of pictures so Wren can enjoy looking at them and has run off to make something with paper and pens "for Wren". I know it is important to help him find a role and he is very kind and enthusiastic still, it is sometimes hard to channel this energy around a baby when Frost is clearly pining for the day he can play lego with him or show him "how to climb up to the fort".

Nonetheless Frost is encouraged. This afternoon Frost looked searchingly at Wren while he was being changed and announced "he is getting really big!"

I sure hope so.

Bottle battles

Wren does not like to drink from the bottle. We have tried all the tricks but he cries and fusses between short periods of sucking. Our best effort had him taking about 30ml at one go (with lots of red-faced complaint). This morning he wouldn't even take 10ml before getting into a frenzy of yelling, arching and spitting with a disgusted expression on his face.

I am not sure whether it is the mechanism of bottle-feeding or the taste of teh Alimentum enriched breastmilk that he objects to. Regardless, he is not getting the 4X 85ml supplemented feeds the nurse required if he was to be tube-free.

I have called our pediatrician but she is on leave till Monday so I may speak with the on-call doctor to see what they recommend. I would like to keep trying till Monday and have scheduled a weight-check at the pediatricians to see how he is doing with more breastfeeding and less of that extra-calorie stuff.

The good news is that without the ng tube his breathing is less noisy and labored and he spits up less. The reflux is very positional and I can barely diaper change him on the wedge after nursing. I have to keep his head quite elevated when he's full. Still, he doesn't seem as distressed after feeding as he used to after an ng-feed. I suspect he is not quite as full as he paces himself a bit. The downside for me is that he wants to eat every 1.5 to 2.5 hours instead of the three hourly formula-tube schedule. Yikes, I am tired.