Jade’s Health Saga – Part I

As most of you know, Jade was diagnosed with a heart murmur at her 2 weeks appointment. Instead of the quiet “lub-dub, lub-dub” sound her heart was supposed to make, it made a loud, harsh “WOOSH-WOOSH-WOOSH-WOOSH” noise.

At the time we were thinking it was one of two things – either a PSD (Patent Ductus Arteriosis) or a VSD (Ventricular Septum Defect), and most likely something she’d grow out of, so her pediatrician, Dr. Nio, made a referral for her to see a pediatric cardiologist.

In the mean time, I noticed that she was having a lot of bouts of screaming – especially during feeding, and seemed like she was gagging constantly, and I’d often smell a sour smell on her breath, as though she’d vomitted. I had suspected (silent) reflux for a while, but it was getting to the point that she just seemed miserable 24 hours a day, so I took her back to the doctor, when she was a month old, to see if she possibly had reflux.

Her usual pediatrician wasn’t available that day, and the doctor we did see diagnosed her with thrush. Apparently what I had assumed was just a milky tongue was actually yeast in her mouth. He explained that this could cause many of the same symptoms as reflux, including pain in the mouth and throat, and so wanted to treat that and see if the symptoms went away. He prescribed Nystatin.

At this appointment she weighed 9 lbs, 4.5 oz.

The next day was her pediatric cardiologist appointment. They did an EKG, which came out fine. They also did an echo to look for her isssues and found not one but two defects. She did have a small VSD which is a hole in the ventricular septum, or dividing wall between the two lower chambers of the heart known as the right and left ventricles. She also had a PS (Pulmonary Stenosis) which is a narrowing of the pulmonary valve, which contricts blood flow to the pulmonary artery, and in turn, to the lungs.

Now, that’s both good and bad. Bad that she had two defects, but good in that VSD can lead to too high a blood volume to the lungs, and the PS, by reducing blood flow to the lungs was sort of evening things out. The two defects were essentially balancing one another.

At that point the cardiologist, Dr. Albrecht, said that it was sort of a wait and see game. She had a 50% chance of the issues resolving on their own and a 50% chance of needing corrective procedures. He said, that we’d just wait to see if the defects “declared themselves” – most likely by her starting to lose weight or no longer gain weight. Also, she might start to tire easily. All of this because the increased blood flow created by the VSD can lead to a higher metabolism. At some point, her metabolism and body mass would get to a point that she wouldn’t be able to sustain weight adequately, even with enough food.

He also noted, at the time that she was taking Nystatin for thrush and asked how that was going (which I found strange). I told him she’d just started it and it was too soon to tell.

He finished the appointment by telling us not to worry, any change for the worse would be gradual, and she wasn’t likely to turn blue or stop breathing or anything scary like that, and one way or another she’d end up with a healthy heart – either it’d fix itself, or they’d fix it for her.

He also asked us to have her weighed in two weeks, which is between her two appointments, so we could get an idea of how her weight gain was going.

The Nystatin didn’t seem to do a whole lot, so I added treating her (and me) with Gentian Violet every evening (which gave her a lovely purple mouth), and me taking Acidophilus daily, to help control any yeast in my system, so I didn’t pass it on to her. Unfortunately, instead of getting better, things seemed to get worse. She got thrush all under her tongue and also got a nasty sinus infection that I strongly suspect was caused by the thrush going up into her nasal passages. Since antibiotics can upset the balance of flora in the system, and promote yeast (Candida) overgrowth, the LAST thing I wanted to do was give her antibiotics for a sinus infection, but I needed to do SOMETHING since her congestion was making it difficult to nurse, so I just flushed her passages with saline and suctioned her nose everytime she seemed to have trouble breathing.

You’re only supposed to use Gentian Violet for a week, and then take a week off, so during the week off, I began swabbing her mouth (and me) with a Grapefruit Seed Extract solution, hourly.

Eventually, this (along with scrubbing affected areas with a baby toothbrush – which she absolutely HATED) began to make a difference, and the combination of suctioning and treating her mouth with the GSE (as well as Nystatin) began to beat back the thrush – at least to the point that it only seemed to be on the VERY back of her tongue – although I couldn’t seem to get rid of all of it.

She still was having trouble with nursing though and what seemed like silent reflux.