Better Today

After 2 days of intensive care from my mom, Vera is better today. She stayed over and was a great help - a non-stop wailing baby that's inconsolable round-the-clock can REALLY get to you. It reached a point where I just said "I give up", handed her to my mom and went to sleep. At 6am in the morning.

The worst seems to be over. She smiled a little today. And started to stand in our arms. She's only vomitted once. Looks like she's on her way back to the Vera we know. Hooray for Mamas who come to the rescue!

Falling Off The Bed

Vera fell off her cot 2 nights ago. And mommy has every reason to be blamed for it. How did it happen? Aren't we supposed to pull up the railing when she sleeps? How could we be so careless?

Mommy's guilty as charged.

A couple of factors all added up. Usually, I'm the one who gets up intermittently through the night each time Vera sounds off that she needs to be turned. Either because she's heated up on one side, or because of nose blockage. That night, for some reason, I went to sleep in another room. Vera seldom moves like she did months ago, turning 90 degrees in her cot, so it really never occurred to us to pull up the railing. Also, to help keep her milk down during night feedings, her cot is slightly elevated, slanting towards the movable railing of the cot.

The little girl must have wriggled to be turned, all the way until her legs were hanging off the bed. And all this while, Daddy didn't hear a thing. He's not a light sleeper like me.

At 330am, I was awakened by The Thud. It was so loud I heard it from the room down the hallway. It was every parent's worst nightmare. In the dark, I fumbled to see what happened. "She fell off her cot," Ian said. He had already picked her up from the floor. By then, she was wailing. In the dark, I saw blood on Ian's T-shirt. I panicked. "Oh no, she's bleeding...what have we done?" I call Dr B. It was 4am. She told me to put cold compress on her mouth to stop the bleeding before bringing her to the hospital. In a blur, we packed her bag and sped down.

Please God, don't let her head be injured, please, please. Vera finally calmed down in the car, or finally awakened momentarily from the shock. In the bright light at the A&E, we saw that her upper lip frenulum - the soft tissue linking gum to upper lip - was torn. She must have fell head down and the upper jaw took the fall. We fed her and soon she was asleep. In the car ride home, she recoiled several times as if in aftershock.

The past two days have been pretty stressful. She's vomitted 5 times in a day, probably because she's been crying too much. Her upper lip is bruised and blue-black as she's experiences real pain for the first time. Mr. Mucus is back with a vengeance (or did he even go away) and she sleeps fitfully because she can barely breathe through the blockage.

She's stopped standing like she used to in our arms, stopped smiling, and stopped touching her lips with her fingers (her favourite pasttime).

Although there may be no head injury, what I'm afraid of is that there could have been some impact on her spine. We'll be bringing her to a Chiropractor to find out. Fingers doubly crossed.

Mucus Madness

It's crazy. Vera's nose has been flowing with mucus for 13 days now. Sometimes it's green and thick, sometimes thin and stringy. Whatever it is, stuffs her up, cakes up and makes her nostril opening smaller, blocks her airway and causes bouts of gagging when she sleeps, and has to be turned left-right-left through the night. She hates us dabbing it away.

I had a hunch that having the tube through her nose was aggravating the situation, so we switched it to the other nostril. Voila! The former nostril stopped dripping! (at least for now) I'm getting real tired of this tube...

But having recently seen the amount of maintenance and cost that goes into g-tube feeding...cleaning the tubes and sterilising all the apparatus parts after every feed, have also made me think twice. Maybe we'll let Vera decide. The day she can dexteriously pull out the tube, we'll get the message.

Meanwhile, please give Vera a break Mr Mucus. It's Christmas, go on holiday.

Falling Sick

Vera has caught a bug from none other than her momma. I caught it from the office and was down with a bad runny nose and sore throat. Vera caught it soon after. The bout is into its 6th day now. She’s been so stuffed up with mucus and unable to clear it, she sounds raspy with the sore throat, and it interrupts her sleep at night every few minutes because she can’t breathe properly. Ian and I are up through the night, rocking her back to sleep every time she gets choked on the mucus. I’ve tried Illadin nose drops but it doesn’t really help and she hates it. We try sucking the mucus out manually with a nose cleaner but it’s so slow and doesn’t have strong suction power. I’m really tempted to rent one of those industrial ones they use in hospitals…like a vacuum machine! Anything to make Vera feel less congested.

Daily PT and speech therapy is completely on hold and I worry she’ll regress. Already her neck stiffness has gotten worse.

Babies falling sick are so stressful.

Fingers Are Fun

Our dear little friend's best friends: Her fingers. Initially stubbornly clenched, they can now open up at times quite fully, although just for seconds - a feat for Trisomy 18 babies I believe.

And from thumb sucking, Vera has moved on to her index finger...helping to do her own therapy to straighten it.

Her First Christmas

This is the closest Vera will get to snowmen. I wonder if she'll ever get to experience snow. Come to think of it, neither have I. Maybe next winter, just maybe.

Christmastime always makes me realise how quickly the year has flown by. It has been a life-changing year for Ian and I. It started as one hell of a roller coaster ride and has turned out so, so different from what we were told to expect. Vera shouldn't be seeing her first Christmas, but she is.

Here's to many more Christmases with you, little girl.

Overworked

If you're wondering why posts have been few and far between, that's because Vera's momma has been working crazy hours the last 2 weeks. 10pm, 1am, and tonight, well, let's just say the night is still young.

You see, I am the writer on an advertising pitch. And winning, is the aim here. I love the challenge of the work but the hours working up to the presentation are punishing. (Once, I worked till 6am in the morning.)

But now, I'm not the only one who's affected. When mommy works late, daddy has no respite all day with Vera. That's one too many single-handed-tube-feeds-leading-up-to-vomitting in a day. Daddy doesn't complain, but mommy feels bad.

But most of all, mommy misses Vera. Last night, she slept at 1am, and still I couldn't catch her.

Should mommy continue working this hard?

Losing Weight

Vera's been losing weight over the past month. 7.6kg, 7.5kg, 7.4kg (16pounds). I wonder if this is average for 10 month old Trisomy babies? We're definitely underfeeding her. But the girl isn't able to take very much at one go. 120ml (4 oz) every 3 hourly is what she's on now. We don't feed her at night though in case it disrupts her sleep. Hopefully, it doesn't continue to slide.

Music Please

This is Vera's all-time favourite toy. When we make her press the buttons, they light up, and so does her face as well (or at least she'll stop fussing). In fact, her clenched fist will sometimes open up even, in preparation for pressing the buttons. She's definitely getting the hang of it.
We know it's not just the lights, but more the nursery rhyme music. Other musical toys seem to work as well. So, can Vera hear some? We don't need a test to tell us that.