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The tests are in. They don’t say much that we didn’t already know - that the kiddos have nothing serious - but it’s always good to have it confirmed.

Manu still has a tiny Grade 1 (the lowest) IVH (intraventricular hemorrhage) - small blood vessels in the brain that are broken. It should resolve itself in the coming weeks. Apparently it’s part of the normal growth of the brain and in most cases it disappears before birth; that’s why it can be seen more frequently in premature kids.

Max is still in limbo. Merritt’s genetic test came back inconclusive, mine show that I am carrier of the galactosemia gene, so we still don’t know if Max will be a galactosemia carrier like me (not a problem except if he decides to have kids with another carrier) or if he has the benign form of galactosemia, called Duarte Galactosemia, in which case he will probably have to go on a low-milk or no-milk diet for the first 6-12 months. We’ll have definitive results in 90 days but at least, the really nasty Classic Galactosemia has been ruled out.

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Kiddos’ weights in grams
Kiddos’ weights in grams

On the minus side, Max still needs some oxygen. He’s got two little tubes in his nostrils and he doesn’t like it much. We are also waiting for the result of a genetic test that Merritt and I had to take to see if he’s not suffering from a rare disease that would prevent him from assimilating milk. He tested positive at a screening but no big concern yet: it’s a test that has a lot of false-positives. Only 1 or 2% of those who test positive have the dangerous form of the disease (galactosemia) and less than 10% have just an mildly annoying form of it (Duarte galactosemia). All the other ones are false-positives. As for Manu, the only thing she’s got is a tiny little bleeding in the brain. Yes, I know, it sounds bad when said like that but it’s common in preemies and in the vast majority of cases, it resolves by itself without consequences.

On the plus side, they are both doing fine (or great, say the doctors) by all the other tests they went through: genetic, x-rays, ultrasounds, blood exams, etc… They are being fed more and more - a big syringe of milk every 3 hours with a volume that’s increased of 1cc more every 6 hours - and they are gaining weight. It’s impressive to see the size of the syringe next to the kids. It’s looks as if an adult had to swallow a bottle the size of a big fire-extinguisher in less than 2 minutes. Burp!

Manu sleeping after gulping down 20cc of milk
Manu sleeping after gulping down 20cc of milk

 

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Another day of rest for our two heroes. Tonight, they don’t have any hose left planted in the umbilical cord.

We like their level of activity even when deeply asleep. We’re starting to understand what was taking place inside Merritt’s belly. Here is a movie of Max taking a nap…

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Manu & Max are doing better every day. We dare say it’s the first day they’re simply doing good. They breath well. They both rolled into their favorite position and slept all day. We don’t feel like holding them by fear of waking them up. Just a little handshake then…

Handshake
A Little Handshake

 

Handshake
Hi Buddy

 

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For posterity, here is the announcement we sent today.

Baby boy coupons are blue
Baby boy coupons are blue

 
Update (months later): We wanted to wait a few more days before sending the announcement, just to make sure the kiddos were ok, but since the word leaked out, we had to do it. We did not feel comfortable enough yet making it public because in spite of what the doctors were saying, we were really not sure about how well the kids were doing: brain hemorrhage for Manu, heart murmur for Max, surfactant in the lungs for both, blood transfusion for Max, jaundice, weight loss, etc… etc…

The problem for us was that families usually expect to see a picture of the proud parents and their newborns shortly after birth, but all the pictures we had of the kids were kinda sad and scary with their goggles and their wires under the bright lights (note: the blogs you see from that period were posted several weeks later, after the kids were out of the hospital). So how could we send an announcement with a smiley picture and not show the kids? Looking around in the room, we spotted the 2 coupons the nurses gave us - just a souvenir that parents usually stick into the Baby Book - and we turned it to some kind of a joke. Voilà!

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The kiddos lose weight, they have the jaundice and a murmur in the heart, but it’s all normal. They received injections of surfactant in the lungs yesterday, and they’re breathing better today. Manu doesn’t have a big tube in the mouth anymore, just two little hoses in the nostrils. They’re both wearing googles and stay all day under UV lights to fight the jaundice.

They seem weak and distressed. They miss the permanent contact that they had in the womb. When they cry, we block them in our hands and they immediately calm down.

The Pods Room
The Pods Room

 

Manu under the spotlight
Manu under the spotlight

 

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