I'm sleepy too, Camilla.

No surgery today, though Camilla still has to put up with her mommy's kisses. Her head size has been stable for the past few days, so for now we're waiting and hoping that she can escape the shunt, or at least grow a little bigger first.

Ducky.

Camilla started taking some of her feedings from the bottle. She really hates the feeding tube these days, and of course she needs be free of it when she goes home.

Don't cry!

Camilla now lives in an open crib, just like a regular baby.

We spent most of the day sleeping.

Stop taking pictures!

For some reason, Camilla isn't smiling in any of her bath pictures..

The drain was removed from Camilla's head on Thursday morning. We still don't know if she will need a permanent shunt or not, but surgery is tentatively scheduled for next Wednesday. Now that the drain is gone, we can again spend more time holding her. It is difficult and discouraging to see the results of Camilla's brain scans and be told that the damage is likely to cause severe disabilities, but it helps to hold her, to see her look up at us and smile. Camilla is strong, and she gives that strength to the rest of us.

Baby Camilla
(written by April, sung to the tune of Baby Beluga by Raffi)

Baby Camilla in your isolette,
You sleep so snug and you look so sweet.
We look from above, and love you so,
As our little pretty baby strongly grow.

Baby Camilla, baby Camilla, we make sure you are warm.
We tuck your blankie in 'round you, so sleepy.

Dream of the day when we can take you home,
We've a big backyard where you can roam.
Climb our trees and walk to the park
Read you bedtime stories when it gets dark.

Baby Camilla, baby Camilla, make a funny face,
Smile at all your friends, we love to see you.

When it's time, you're changed and fed,
Nestled nicely in your little bed.
Moon is shining and the stars are out,
Good night, little baby, goodnight.

Baby Camilla, baby Camilla, with tomorrow's sun,
Another day’s begun, you'll soon be waking.

Baby Camilla in your isolette,
You sleep so snug and you look so sweet.
We look from above, and love you so,
As our little pretty baby strongly grow.
We watch our little pretty baby strongly grow

Camilla was born on April 21, so Tuesday was her two month birthday. Today she is nine weeks old.

Yawn. (not scream)

Part of the terror comes from not knowing when the trouble will end. Camilla was born 14 weeks early, which lead to bleeding in her brain, which caused hydrocephalus, which required surgery to place a reservoir, which opened the way for an infection to cause meningitis, which required more surgery and treatment... Last friday, Camilla's weekly head ultrasound showed several unusual spots on her brain. Nobody was sure what they were, so on monday they did a CT-scan to get a better look. This new scan doesn't show the spots, so it's less likely to be a new infection; hopefully it was just an imaging artifact on the ultrasound. What the scan does make clear is that her brain simply isn't as large as it should be, which isn't too surprising given that it spent many weeks compressed due to her hydrocephalus. An MRI will provide better images and enable the doctors to make more predictions, but ultimately it will be up to her, and we really won't know the full consequences for a number of years. She continues to behave just fine though.

People say that Camilla looks like April.

Not exactly an igloo...

Ocean beach.

So you see...

Eskimo kisses.

Bundle.

Taking Camilla out of her container is kind of a big deal, so a lot of times we have to just peek inside.

Camilla started nursing this week. She gets a little surprised sometimes, but she's doing great for her age.

Brain drain.

On Saturday, Camilla was furious. It's really very painful to see her so upset, though it's good that she is strong enough to be kicking and screaming. Today she was much happier and mostly just slept. She's now back to "full feeds", which are currently 30 ml every 3 hours, and that helps a lot.

For the first week after Camilla was born, I got scared every time the phone rang; I even got scared if I had accidentally left the phone turned-off. I was scared that the hospital was calling to say that she had taken a turn for the worse, or that she had died. Eventually I mostly got over this fear, largely because she seemed to be doing ok.

This past Tuesday morning the hospital called to let us know that Camilla had started having frequent episodes of apnea and bradycardia, meaning that she stops breathing for a while and her heart rate drops off. Shortly after we arrived at the hospital, she stopped breathing on her own and had to be placed back on the ventilator. Tests revealed that her cerebral-spinal fluid contained staph bacteria. She would need surgery to remove the reservoir from her head, since it was the most likely source of the infection. The surgery was scheduled for Wednesday in order to give the antibiotics time to work.

Today she is continuing to recover nicely. She is back off the ventilator and her breathing is great. They are feeding her a little bit and she should be back to full feeds very soon. The "external ventricular drain", which replaced her reservoir, is only a temporary solution and has risks of it's own, but it does have the advantage of allowing more gradual and continuous drainage. Instead of increasing in size, her head circumference has actually decreased by about 2 cm since the surgery.

I'll try to get more cute pictures tomorrow.

Recovery. It's terrible what Camilla has to go through, but she's strong and she's getting better again.

Surgery went well.

Camilla has an infection in her brain. She will have surgery tomorrow to remove her reservoir, which is likely the source of the infection. It will be replaced by a temporary catheter that will continuously drain the excess fluid from her brain. Antibiotics should kill the bacteria.

Bath time.

Camilla is getting "too boring", so tonight she was moved from the "intensive care nursery" to the "special care nursery", where the babies are generally larger and more stable. She seems to like it better; the room is quieter because there aren't as many machines and alarms.

Don't stick your tongue out at me! Every day April or I hold Camilla for three or four hours. It is very nice.

A house is not a home until you get a real internet connection. Now we just need a router or something so we can use it outside of the "internet closet".

By the way, several people have asked us if it is ok to share this site. The answer is, "of course, it's here for everyone."

Camilla weighs 3 pounds now! She was born six weeks ago at 759 grams (1 pound, 11 ounces) and dropped to 612 grams (1 pound, 6 ounces) within a few days, so her weight has more than doubled. She is fed 26 ml of enriched milk every 3 hours, which gives her 168 calories every day. A proportional quantity for an adult would be around 9000 calories/day.

They discontinued her caffeine today, which means that she is now breathing without any help.

Her hydrocephalus is still a problem though. They remove 20 ml from her head three times a week, but it is still growing at 2-3 times the rate it should. Her head circumference is now up to about 33 cm. They expect to install a drain (VP shunt) in three or four weeks. We're hoping it won't be necessary; shunted infants typically have a variety of developmental problems. Though other than an unusually large head, she doesn't currently display any symptoms of hydrocephalus.

Camilla enjoying her pacifier

Memorial day barbeque