Heartening News

Vera had a cardio appointment today.

Her last echocardiogram was when she was one and a half.

Now that she's 2 and a half, I thought it would be good to get a yearly update.

No new news - which is good news. There seems to be at least two ASD, but they are very small, about 2-3mm. Dr T explained that intervention is only considered if holes are like 10mm.

Vera's are not causing any problems at this point.

There is increased heart beat pressure, but to be expected because she is a biPAP patient.

We go back to the hospital in 2 days' time for her GI appointment.

Her Heart is OK

Vera has many doctor's appointments.

But the one that I approach with anticipation is always the one with her cardiologist. After all, the heart is her engine room.

Which is why I was relieved to hear from the very experienced pediatric cardiologist Dr W at KKH that Vera's heart is okay.

There were some abnormalities detected though - the 'door' letting blood flow from the heart to the rest of the body had 2 'flaps' instead of the normal 3; plus, there was a tiny hole at the top of her heart (gasp) - BUT (thank goodness for buts) they were not causing any problems at this time. Dr W, however did add that "whether it would later on, we don't know". Well, with Trisomy 18, you get used to living with deviations and disclaimers.

I'll take it.

During the echocardiogram, I stared at the monitor in awe at Vera's beating heart. Drumstick-like flaps danced in perfect synchrony with one another, like pistons in a car. No one there had any idea how precious each beat was to me.

Beat on, little heart!

9th Month Update

Here's the low-down on Vera at 9 months:

1) Blood pressure: was moderately high, no change. According to her paediatrician, it's systemic and not pulmonary. Latest reading last week was 102/51 and 90/63.

2) Eyes: Right eye still lagging behind left eye in clearing of the haze, but both eyes move much faster now (almost immediately) in following objects and faces. Both eyes seem to move in unison.

3) Ears: Although Vera failed the hearing test at 8 months, we're pretty positive she has some hearing. She turns to sound, and responds to musical toys. So much for costly tests.

4) Breathing: Still a noisy breather when sleeping, but we've noticed some nights where she's pretty silent for a period of time. Definitely not the congestion during the initial period of switching to nasal feeding tube.

5) Teething: Definitely, although no signs of any teeth yet. She keeps gnawing at her fingers and hand, and can get pretty upset when she can't cos we're holding her by her armpits like a pair of crutches. Some drooling has begun.

6) Feeding: Therapy continues post VFSS. We're getting her used to spoon feeding. Water is well-received in tiny spoon sips, puree too, but not if the consistence is too thick. However, liquids still flow too fast down (it's like how we take a gulp) and choking occurs. She does not like more than 1 teaspoon of puree though (what a long way to go...)

7) Nasal Tube: Vera's face has been marred by rash caused by the sticky tape. It is aggravated in hot environments (triggered by our over-ambitious Big Walk) and by her constant face-scratching. We alternate the tube position from cheek to cheek to allow the opposite side to heal.

8) Raised chest: Vera's chest protrudes on the heart side i.e. her left. We think this is linked to the thickening of some of the muscles surrounding the heart. It is probable that she is using extra effort to breathe and this causes her heart to work much hard (hence developing muscles!) This is not a cause for concern now (but maybe in future it may).

9) Flab: Double chin and tummy have excess blubber hee.

10) Neck Control: Vera is still weak in this area. On her tummy, she can turn her head from side to side. However, she still cannot hold her head up, nor tuck her arms to her chest to push herself up. As she gets heavier, this will get harder.

11) Fingers: We've seen marked improvement in her fingers. No longer are her fingers clenched. After months of intensive daily massage and holding, they have relaxed so much you can almost hold them to a flat palm (almost). In fact, now we're having the opposite problem of getting her to grip things! But a few days ago, she did hold up a pencil for a few seconds so we'll continue gripping therapy. Her thumbs however, have developed a life of their own. They are her most responsive fingers. When she's held in the position shown below, (standing is her favourite thing), she'll proceed to 'play the guitar' with her thumb! Imagine strumming a guitar, up and down with just your thumb. Daddy says she even did it with both thumbs today. Thumbs up!

12) Legs and feet: These are much more relaxed now. Kudos to her Physical Trainer Ian. They are pushing against the ground more now in a prone position. Far from any crawling though.

13) Hypertonicity: This means arching back frequently, especially while being carried. This is still present, but much less frequently than in the first 6 months.

14) Immunization: We will start her first in 1 months' time. So fingers crossed she'll not succumb to any viruses till then!

15) Kidneys: Scanned for Wilm's Tumour at 6 months - negative.

16) Spine: Scoliosis has been detected and has to be monitored. Mommy will be sussing out an Chiropractor that specialises in infants so that we can hopefully slow or manage the rate of misalignment.

17) Early Intervention Programme: There are none whereby therapists come to your house (wish we lived in the United States!) The waiting list for a place in the school is up to 6 months. We've just signed up. Hopefully, a school environment stimulates her more, but it also opens her up to a whole world of infection. We'll probably have to get all her immunizations done before that.

Whew. What a laundry list. But there are so many other Trisomy babies with even longer, more medically complicated ones. That makes each item here, a blessing.

Heart Update

Vera saw the cardiologist yesterday. Her PDA has fully closed! It's a miracle, isn't it? It was a large one at birth, became a small one at 3 months and now fully closed at 6 months.

This little girl is a fighter with a heart that wants to beat on.

However, our joy was tempered by some not so good news. Vera's blood pressure is higher than normal for babies. They took it once when she was crying and it was close to the levels of an adult. I've read that hypertension is one of the issues for T18 children, and medication must be taken to control it. It can also be a sign of problems with the kidney (renal function).

We're going for ultrasound scans for her kidney next week, before the doctors decide on further course of action. Fingers crossed!