Jade’s Health Saga – Part II

I took her in for her weigh in about two weeks after her cardiologist appointment, on July 6th, and she only weighed 9 lbs, 7 oz, which meant, she’d gained only 2.5 oz in almost 3 weeks. Not good.For my own piece of mind, I had her weighed again the next week, on July 14th, and she was up to 10 lbs (although it was a different scale, and with her clothes on). Certainly better, but still only a net gain of 10.5 oz in a month.

When she went to her cardiologist appointment, on July 18th, they weighed her and her weight came out to 9 lbs, 10 oz. So either that 10 lbs weigh-in was off, or she had lost 6 oz in less than a week. Either way, I was not happy. I had notced her usually very chubby cheeks were not quite as chubby anymore.

The doctor took a look at her heart and saw that the VSD had not closed any or gotten any smaller and the PS was actually a little bit worse/narrower, so suddenly the “if she needs surgery” became “when she needs surgery.” My heart dropped. I know the procedures are fairly common and fairly low risk, as far as procedures go, but still no mom wants to hear that her little baby needs any procedure done on her heart.

He also verified that the reason we couldn’t get rid of the thrush in a month of treatments (Nystatin, Gentian Violet, Grapefruit Seed Extract for BOTH of us, Diflucan, Dietary Supplements, Acidphilus, Dietary restrictions for me, sterilzation of anything that went in her mouth or came into contact with breastmilk) was that she is more prone to infections. Since the way your body fights infection is through increasing white blood cells in the blood flow, and her heart is pumping inefficiently this makes her more prone to infections and more difficult to fight existing infections.

For this reason, he wanted to schedule her to have the PS corrected sometime this fall – like September/October, and they’d probably just correct the VSD while they were in there. He said the reason was two-fold:

1. He didn’t want her to get to the RSV/Flu season and catch any of those because they’d be harder for her to fight against, and her getting sick would delay when they could operate even further.

2. He’d do it sooner, but he wants her to gain as much weight as possible so she’s a better surgical candidate. As long as she gains *something* she’ll be fine. If she starts to lose weight, they might have to do surgery earlier, before she’s completely unsuitable due to weight loss.

He said no one thing was making him think surgery was necessary, but rather, a combination of the three things: PS getting narrower, VSD remaining the same and weight issues as well as the inability to fight the thrush even with much treatment. To him, this was the defects “declaring themselves” he had been looking for.

One good thing is that her Pulse-Ox (measures Oxygen saturation in the blood) was 98, which is excellent, so she’s getting plenty of oxygen in her blood. That’s another way to measure how the PS may be affecting her – if it gets worse, it should start affecting her oxygen saturation.

He asked us to come back in in two weeks (versus the usual month) to have her weighed on the same scale, and to have another Pulse-Ox reading.

She also had her 2 month check up with Dr. Nio, on July20th, who (HALLELUJAH!!!) prescribed her Zantac. She said if we can’t get rid of the thrush, there’s no sense waiting to try to treat the possible reflux. If the Zantac works, then fine – if it doesn’t then we’ll stop giving it to her.

At this appointment she weighed 9 lbs, 11 oz, so a gain of 1 oz in a couple days – not bad, but not great either. Dr. Nio wants to see her again in a month, instead of the usual 2 months.

Zantac worked great – she still has some discomfort from the usual infant gas and from the persistent thrush, but at least she’s stopped the screaming and arching during nursing and is gaining weight a little better – she’s up to just under 10 lbs again, which is a gain of almost 6 oz in just under 2 weeks. I am hoping for 10 lbs, 2 oz (a gain of 8 oz or 1/2 a pound) by her appointment this coming Tuesday.

It won’t mean she doesn’t need surgery, but it’ll mean she, hopefully, won’t need it any sooner than the fall, and will be a better candidate.

Meanwhile I’m continuing to stay on the Anti-Candida diet and to take supplements like Grapefruit Seed Extract, Garlic and Acidophilus, as well as continuing with Diflucan and swabbing her mouth (and me) with a Grapefruit Seed Extract solution after every feeding. My thought is, if she’s *this* prone to Candida overgrowth, I need to do what I can to keep it from getting worse. The treatments have at least confined the thrush to her tongue – I haven’t noticed it going anywhere else in the mouth or up in the nasal passages again.