July 31, 2006 by Brooke.

So, here’s the recap/rundown of where we are now, at the 2 month mark:

1). Cardiologist says Jade will have to have surgery to correct both defects in the heart - most likely this fall.

2). Jade still has thrush, which, despite Diflucan, GSE and my own dietary restrictions, is back all over her tongue, but at least no where else in the mouth or nasal passages.  Unfortunately this isn’t likely to change until after she has her surgery and her heart is working more efficiently.

3). She’s now on Zantac, which has greatly improved her eating. She still has issues from the thrush, specifically pain in the mouth and/or throat causing fussing during eating, but at least there’s no more arching back and actually screaming during feeding and during the night, which is an awesome change.

4). She’s up to 9 lbs, 15.5 oz, which is just 1/2 an oz shy of 10 lbs. This is a gain of almost 6 oz in almost 2 weeks, which is not the greatest, but MUCH improved over how she has been gaining. Gotta attribute that to Zantac, since that’s the only thing that has changed in that time.

We have a cardiologist visit Tuesday, to weigh her and test her pulse-ox reading, and hopefully I can ask some questions about what lies ahead.

Specifically, whether or not she’s a candidate to have BOTH defects fixed via a catheter. I know the PS (Pulmonary Stenosis) is usually repaired via catheter, very much like a balloon angioplasty. The big question is the VSD (Ventricular Septum Defect) and how it will be repaired.

Usually, children who have surgery for VSD, usually have larger holes, and those are repaired via open heart surgery. However Jade’s is smaller, so I’m hoping they can use a catheterization procedure I’ve read about that basically uses a catheter, inserted into a vein in her groin, to insert a little plug called an “occluder” into the chamber of her heart, which then plugs the hole. Eventually tissue grows over the occluder, creating a permanent repair. I’m prepared, however, for the possibility of open heart surgery and have even had some mom’s of “heart babies” I know share their experiences and send me some photos of the post-op recovery, just so it’s not a shock to me if it has to happen that way.

At this point it seems likely she’ll have her surgery done at UVA’s Children’s Hospital, since they’re the closest and they have a Heart Center just for children.

From what I understand the stay is over a week for Open Heart and a few days for a Catheterization procedure. Hopefully I can verify most of this with Dr. Albrecht when we see him Tuesday.

Of course no surgical procedure is without inherent risks, but no matter how scary this all may sound, I remind myself that these defects are actually fairly common and these procedures are done all the time with a very, very high rate of success - especially in relatively minor cases like hers. Like Dr. Albrecht told us, she’s very unlikely to suddenly develop life-threatning issues, and will most likely be 100% fine after the surgery with no lasting health issues or implications related to the repair. So that’s definitely a good thing to keep in mind, despite my occassional Mommy freak-out moments.

Another thing that is good to remember is that it’s actually a good thing she’ll be having the surgery sooner, rather than later. If she’s going to require surgery, better now when it’s less likely to be traumatic for her or even remembered. It also saves months or even years of checkups and wondering, watching and waiting for problems to arise. She should be fully and completely recovered, and 100% healthy by her 1st birthday.

I think the biggest lesson I’ve been learning through all this is that our children are not really “ours” they’re God’s. They belong to him and we are only entrusted them. While Jade is most likely going to be absolutely fine, I have to remember that none of us is promised to live to 90, or even to make it to tomorrow, and that to sit and worry and stew and fret over things out of our control, not only doesn’t accomplish anything, but wastes the time we have been given to love and care and enjoy one another her on earth - whether that be a few months, or many, many years. I know that sounds a little morbid, but actually it’s a fairly life-affirming thing, for me at least.

For those that want to know what to pray for Jade, our biggest requests are that:

1) She’ll continue to gain weight so she’s an acceptable surgical candidate, and won’t need surgery any sooner than this fall.

2)That they’ll be able to use catheterization procedures for both repairs, which would reduce her risk, her stay in the hospital and be minimally invasive, resulting a shorter recovery time.

3) That we’ll begin to really be able to make some headway with the thrush. It’s not likely, but it would go SO far in making all of this bearable, and helping her to gain weight even better.

and, more than anything…

4) That we’d just trust God, and know that, whatever happens, she’s in His hands, and to just make the most of every moment and just take it a day at a time instead of getting consumed with all the “what ifs” of the future.

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July 31, 2006 by Brooke.

Everyone has bacteria and other live organisms growing in their digestive tracts and various places in their body. When things are in proper balance, they promote and aid in proper digestion. Well, sometimes this balance becomes upset, either through illness or sensitivity to various foods, and one particular organism, Candida albicans, can become dominant and will then begin to invade healthy tissue, in the form of thrush or other yeast ailments, including yeasty stomach, or other common fungal infections.

I don’t know how many of you are familiar with the anti-Candida diet but the general idea is to eliminate anything in one’s diet that could promote yeast over-growth in the body. The most obvious culprit is sugar - as anyone who has made homemade bread knows, yeast need sugar to live. Cut off the food source, and you begin to get rid of the overgrowth, and put things back in balance. In my case, while I have no apparent symptoms of yeast infections or Candida, Jade obviously does, so I have to eliminate anything in my diet that might affect her through my breastmilk - either yeast in my own system that can get passed to her, or sugar and other things in my milk that could make her own yeast problems worse.

If only it was as simple as cutting out sugar and sweets. You would be *amazed* at how much has to be cut out of one’s diet in order to fight this.

This means no yeast, no sugar, no fructose (including MOST fruit), no sucrose, dextrose, malto-dextrose, no artificial sweeteners, no additives derived from sugar or yeast, no wheat, no bread, no dairy (except butter), no foods processed through fermentation, malting or distillation processes. No foods containing vinegar or any foods prone to yeast or mold growth (cheese, cantelope, peanuts, pistachios, mushroms).

No alcohol of ANY kind. No coffee, No tea (except certain herbal teas). No fruit or fruit juices except grapefruit, lemon, lime and cranberry (unsweetened of course).

The only sweetener I am allowed is Stevia, and (depending on which version of the diet you follow) perhaps pressed cane juice.

Another thing anyone fighting yeast/Candida needs to do is to increase the number of beneficial flora in the system, including Acidphilus - which can be done any number of ways, including supplements, yogurt with active cultures, and other methods, such as Bio-K, which is a really nasty tasting drink made with TONS of live acidophilus.

It’s a healthier lifestyle for sure, and I’ve even lost weight, but it makes grocery shopping and meal prep, not to mention eating out or with friends, so much more complicated, and to some extent (supplements, organics, alternative no-no free foods from health food stores), more expensive.

I’ve even learned to make my own yeast free breads using alternative grain flours like spelt, millet, buckwheat and oat.

Right now, as I’ve mentioned before, not even all the medicines, natural remedies, supplements, and dietary restrictions has been able to beat this, due to the complications with her heart defects, but, if nothing else, I can hopefully keep it from getting worse.

While I will gladly do whatever I have to to make her feel better, or, in this case (since we can’t really seem to get rid of it), even to just keep her from getting or feeling worse, I really, really don’t want to have to be on this forever. I am SO hoping this will resolve itself after her surgery.

I will likely have to continue on the diet for some time after her surgery, as she will be on antibiotics for a while afterwards and is very likely to end up with a re-currence of thrush from that. So, I’m resigned to eating this way, probably for many months.

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July 31, 2006 by Brooke.

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.

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July 31, 2006 by Brooke.

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.

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July 31, 2006 by Brooke.

Ok, I am sure this will be an unpopular opinion, as many of mine tend to be, but I do feel the need to stand up and speak my heart.

When did politics and Christianity get so incredibly intertwined?

I’ve been wondering that for some time, but the question was brought to mind again as I was reading something Sunday in our church’s newsletter that was, essentially, equating seeking to legislate Christian values, thereby making them law for everyone, regardless of their faith or creed, with being “salt and light” in this word.

While I totally agree with the notion that we need to be “salt and light”, as outlined in the Bible, I don’t remember reading anything that said we were called to actually seek to impose Biblical values on society as a whole through political means. I remember reading that we are called to share the truth in love (Ephesians 4:15), and to give an answer with “gentleness and respect” (I Peter 3:15). I remember reading in I Corinthians 5:12-13, where Paul encourages them to deal with matters of sin within the church, but told them to leave the dealing with sin in those outside the church to God. It was also Paul, in Romans, who made it quite clear that the Law is not what saves us, and, in fact, cannot save.

The biggest bone of contention these days seems to be the whole Gay marriage thing - or, as it’s most commonly put “Defending Marriage” because gay marriage devalues our marriages. Now, I totally agree with the notion that homosexual unions run counter to Biblical values, but I’ve been trying to understand how my marriage is exactly under attack if two men or two women have the legal right to permanently cement their commitment to one another, in a legal union, so that they may enjoy the same rights and privileges offered to other couples. The Bible also speaks out against Believers and Non-Believers entering into marriage together, but you don’t see anyone seeking to outlaw those unions or talk about how they devalue Christian marriages.

And really, when you get right down to it, how does man’s law TRULY affect the “value” of my marriage? Isn’t my marriage based on my commitment to my husband and to God? What does what another couple does affect the value of my marriage? My marriage’s value has absolutely nothing to do with what someone else chooses to do, or whether or not they are following God’s Laws. There are a lot of things a LOT of heterosexual, lawfully married people do that is blatantly against Biblical teaching and God’s plan for marriage, and while it’s sad, and a testament to our fallen culture, it does not change my commitment to my spouse, nor the “value” of our marriage.

Don’t get me wrong, I do believe that active homosexuality is wrong, according to the Bible, but so are a LOT of things that we don’t (nor necessarily should we) seek to outlaw. I don’t have to agree with something spiritually to think that people should have the freedom, particularly in a country where we claim to have freedom, especially of religion, to pursue it - as long as they are not somehow infringing on anyone else’s fundamental rights - such as life and liberty.

I’m not pro-Homosexuality, nor am I pro-”Gay Marriage.” I’m against discrimination against people because they don’t follow our beliefs and shoving my belief down people’s throats in the name of Evangelism.

I’m very pro-Faith, pro-”Biblical Values” and pro-Evangelism, and living it out for people to see, but very much against the idea of faith based legislation. I think the place for faith, Biblical Values and Evangelism is in our churches, church organizations and in our daily lives and personal interactions with those around us.

My heart hurts, and I am, in fact, angered, every time I see political information pushed in our churches and on flyers placed on vehicles in church parking lots calling Christians to political action for Biblical values. I cringe when I see tables in the narthex purporting to be there to give information on “the issues” and where candidates stand, but in reality, they focus solely on one or two issues, and the information has a decided slant to one side of the political fence. I whole-heartedly disagree with the call for Christians to take back the country. America is not a theocracy. It has never truly been, nor SHOULD it be, a “Christian Nation” any more than it should be Buddhist, Muslim or Zoroastrian nation.

I also think we have a huge double-standard, as Christians in general, when it comes to this notion. We’re all about “freedom of religion” as long as it’s our particular brand. We set up schools and other methods of aid in foreign nations, in order to help the people and further the Gospel, and we call it missions work and evangelism, but if another religious culture offers a free schooling program, they have “an agenda” and are seeking to invade and infiltrate that community, and it should be combated. Are we not seeking to do the same? We go door to door, sharing our faith, and it’s noble and being bold and standing up for our beliefs, but how would we view the local mosque sending out missionaries to share the good news of Allah, door to door?

I’m not in any way indicating that I think witnessing, or even missions work is wrong. I think we are commanded to “go into all the world” by Christ himself in Scripture. But I think those examples illustrate that, for many Christians, the only freedom of religion we are truly interested in is our own, and that if any other faith sought to push their own agendas the way we did in this country, we’d be up in arms and crying “separation of church and state!” “freedom of religion!” I just think we need to be careful of the line we tread between evangelism and discrimination and be aware of any double-standards we have. We must cherish and protect the freedoms we have, instead of abusing them - otherwise we run the risk of losing them.

I am extremely disheartened any time I hear it hinted, or downright said, that to be TRULY Christian one most vote one way or another, and hearing people on the “other side” of the political fence denigrated. Not only is this a distortion of the Gospel, but this rabid politicism serves only to cause unnecessary division in the body of Christ, which does not bring glory to God.

We need to stop and remind ourselves that His Kingdom is not of this World. Yes, one day, Christ will reign on earth, but that time is not now, and HE will establish His kingdom and reign - not flawed, fleshly human beings. We live in a fallen world, with fallen people and a fallen, flawed political system. We need to start caring, praying and sharing and stop relying on politicians, and a fallen political system, to Evangelize.

Christ should reign in our HEARTS, and instead of focusing on imposing God’s moral Laws (or rather certain one’s of our choosing) on non-believers, which amounts to just so much empty legislative legalism, we should be seeking to further God’s kingdom by reaching out, by fostering relationships, by sharing His Word, with gentleness and respect, by sharing His Truth in Love, by not setting up certain sins (ahem) as somehow greater than our own, thereby diminishing the power and grace offered in the Gospel.

God changes hearts, and THAT, is how he changes societies - not through man’s laws, and certainly not by being manipulated by a fallen earthly political system that is anything but godly, on any side of the political fence.

God is not a Democrat. God is not a Republican. God is not political and His Kingdom is NOT of this world.

If we are truly serious about the state of our country, the souls of men, then we need to pray that God changes the hearts of the men and women in our countries. We need to, as Christ did, reach out to those who are in need of Him, and more importantly mirror His Word and His Truth to them. Not with epithets. Not with hateful rhetoric. Not setting their sins up as worse than our own. Not with judgment, but with a message of love, grace, forgiveness and redemption. If we want to see society change, we need to reach out to the hearts of men, because that’s where God works to change men. Simply passing laws to enforce Biblical ideals only puts a Band-Aid on a gangrenous wound.

I don’t always agree with what Andrew Sullivan says, but I think he hit the nail squarely on the head in his piece entitled “Why I Disagree with Christianism” when he said,

What to do about it? The worst response, I think, would be to construct something called the religious left. Many of us who are Christians and not supportive of the religious right are not on the left either. In fact, we are opposed to any politicization of the Gospels by any party, Democratic or Republican, by partisan black churches or partisan white ones. “My kingdom is not of this world,” Jesus insisted. What part of that do we not understand?

So let me suggest that we take back the word Christian while giving the religious right a new adjective: Christianist. Christianity, in this view, is simply a faith. Christianism is an ideology, politics, an ism. The distinction between Christian and Christianist echoes the distinction we make between Muslim and Islamist. Muslims are those who follow Islam. Islamists are those who want to wield Islam as a political force and conflate state and mosque. Not all Islamists are violent. Only a tiny few are terrorists. And I should underline that the term Christianist is in no way designed to label people on the religious right as favoring any violence at all. I mean merely by the term Christianist the view that religious faith is so important that it must also have a precise political agenda. It is the belief that religion dictates politics and that politics should dictate the laws for everyone, Christian and non-Christian alike.

That’s what I dissent from, and I dissent from it as a Christian. I dissent from the political pollution of sincere, personal faith. I dissent most strongly from the attempt to argue that one party represents God and that the other doesn’t. I dissent from having my faith co-opted and wielded by people whose politics I do not share and whose intolerance I abhor. The word Christian belongs to no political party. It’s time the quiet majority of believers took it back.

I think it’s time that the temple be cleansed, both in our hearts and in our churches, and that we get back to the heart of what Christianity, Evangelism and the Gospel are really about, furthering a kingdom NOT of this world.

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