August 30, 2006 by Brooke.

Just got a call from her pediatrician, with her blood test results. Thyroid fine, iron a skosh low, but fine, but her liver function tests came back a little abnormal.

Our pediatrician was a little puzzled by the liver test results, until I mentioned that one of the things her cardiologist said the other day (and it was the first time I’d heard him mention this) was that he was looking for, but hadn’t seen evidence of, her VSD causing problems with her liver, and causing it to enlarge.

His primary concern previously had been hypertension in the lungs, caused by the increased blood flow, but apparently a VSD can also cause hypertension elsewhere, like the liver, which causes it to begin to enlarge. While her pulmonary stenosis could be protecting her lungs right now, by restricting that increased blood flow, but nothing prevents her liver from getting too much blood flow.

Anyway, my guess is the abnormal liver function test might point to the VSD being a little more severe than we thought. I was just reading that an abnormal liver funtion test result can detect an enlarged liver before it can be felt by physical examination, so maybe we just caught it early.

We’ll see what the cardiologist has to say when her pediatrician forwards him the lab results (which she said she’d do today). Looks like it really *is* time for her surgery after all.

Our pediatrician also agreed with me that it’s possible that her feisty nature could mask some of the signs of tiredness that usually accompany a VSD beginning to affect an infants health and eating, if her inclination is to get frustrated or irritated when she starts wearing out, instead of just getting listless. She really does seem to have two speeds - full speed ahead (whether happy or mad), and lights out.

On the good side, she’s still gaining weight - more by sheer virtue of how many times I try to feed her, and her sleep nursing, than how well she actually nurses. She’s up to 10 lbs, 14.4 oz this morning, which is great. I also think the supplements I’ve been taking to richen my milk may be helping quite a bit (particular the Omega-3’s and Marshmallow root). The more weight she gains before her surgery, the better.

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August 28, 2006 by Brooke.

Just got a call back from Jade’s cardiologist.

While he’s perplexed that she isn’t showing signs of weakness or listlessness (which part of me thinks is just plain old stubborn tightly-wound personality which she would get from me), he’s concerned about how reluctant she is to nurse and bottle feed and how tough a time we’re having getting enough calories in her - especially the force feeding.

He said the upper GI not showing any signs whatsoever of reflux tells him the reluctance to eat might be heart related rather than reflux, and that perhaps we’ve gone as far as we can without doing surgery. He said they’d really only wanted to wait a couple months any way, so 3 months and almost 11 pounds is an ok place to go ahead.

I asked him what time-frame he was thinking, and when he said “well, maybe till just after the holiday” for a second I thought he meant Christmas or Thanksgiving, maybe, but then I realized he meant Labor Day, because he mentioned the middle of September. So, I don’t have a definite date yet, but sounds Jade will most likely be having surgery sometime in the next month.

He also mentioned something interesting - he said that with some of the 1 dimensional imaging technology - like most ultrasounds and echocardiograms, things can look a little different than they actually are in 3 dimensions, due to different angles and so forth. In other words, he thinks it might be possible that her VSD is perhaps a little larger than they originally thought, and maybe that’s why it could be affecting her earlier than he thought it would.

I did bring up the thought that upper GI’s may not definitively rule out reflux as a culprit, and did he think we should look into further testing, but he is of the mind that if she had enough reflux to make her esophagus raw and affect her eating, then the GI should have showed *something* so he doesn’t think reflux is the issue here.

While I’m not entirely sure I agree with his line of thinking on the reflux/GI results, because I’ve talked to some mothers whose babies had horrible silent reflux, and esophageal erosiions, but for whatever reason, they didn’t show up until they had an endoscopy, *HOWEVER* I am not going to bother arguing about it, because for one thing, we’re not keen on the idea of the invasiveness of further testing for reflux (especially if it’s not the issue for her), and for another thing, we would like to get this heart issue resolved, done and over with, so you won’t hear me talking him out of scheduling the surgery. If he thinks it’s time for the surgery, then it’s time for the surgery.

As he put it, poor eating is a sign he’s been looking for, she needs the surgery at some point regardless, she’s at a good age for it, so he wants to go ahead and fix her up, and hopefully that will take care of her eating issues so she can get back on track growth wise.

Her appointment is next Tuesday, so I’m guessing we might get a surgery date at that time, or shortly thereafter.

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August 27, 2006 by Brooke.

Jade had an interesting couple of days. It was the usual fighting against feeding, occassional force feeding of a couple ounces of formula, because she *still* refuses to take a bottle or the SNS (supplemental nursing system), and frustration and tears on both our parts over all of it, but I guess I must have gotten enough in her by the sheer number of times I nursed her, and all her sleep nursing, because yesterday she was up to 10 lbs, 11 oz, and this morning she was up to 10 lbs, 11.4 oz.

So not a good couple days, but still some EXCELLENT weight gain. An ounce a day would be great, but an average of 2 oz a day is awesome, and I’m just praising God, even though Jade hasn’t made it easy by any stretch of the imagination.

I love that she’s gaining weight, but I *hate* that it takes 24 hours of struggling with her to get enough food in her, and I really want to get to the bottom of “why” so we can try to fix whatever it is. The force feeding of the formula is just torture for both of us. I mean she’s really a happy, smiling sweet little girl, the vast majority of the time. It’s just feeding time that’s so hard…well, that and bath time, but that’s an entirely different issue.

I am starting to do a little more reading and talking to some other reflux Mom’s and have come to realize that the upper GI does *not* actually diagnose or rule out reflux. All it does is look for physical issues that could cause it - hiatal hernia, pyloric stenosis, etc. Kids with horrible reflux can not reflux on a GI, and kids with no reflux can throw up during a GI (and who could blame them, really). So, now I’m left wondering, with her still fighting feeding, of any kind, more often than not - what’s making her so hesitant? She doesn’t seem averse to latching on or nursing in general, and will do that readily, it’s after the first minute or so that she starts fighting usually - sometimes sooner (like a couple seconds). It’s really hard not to assume we’re either dealing with an oral aversion of some type, perhaps caused by the past thrush experience, or perhaps it hurts to swallow because of past or present irritation caused by silent reflux.

So the next question would be - do we just kind of keep treating her, just in case, and assume her throat is hurting from past or present silent reflux, or do we stop treating her all together and hope she doesn’t really have it, or do we do further testing?

To definitively rule out or diagnose reflux she’d have to have an endoscopy and/or pH probe test, neither of which sound pleasant or cheap. The endoscopy is basically a colonoscopy in reverse. It’s just the other end - they take pictures of her esophagus and so forth and then take a biopsy which can help determine if allergies are causing the issues. That requires general anesthesia since they’re going down the throat. The pH probe is a little less invasive, but requires 24 hours, which, unless I’m mistaken, would be an in-patient procedure. That is where they place and leave a probe in the esophagus for over a 24 hour period to measure acidity and how much and how often she refluxes over a 24 hour period.

I’d say the eating issues could be heart related, except for one thing. From all I understand, the kids that have trouble nursing and gaining due to heart issues are very weak. Too weak, in fact, to have the energy to eat. Jade may be many things, but weak is not one of them. It took me, the doctor, and the nurse to hold her down for the GI. Same goes for taking blood, giving shots, formula feeding, or anything that she hasn’t given us express, written permission to do. She’s a fighter and doesn’t seem weak by any stretch of the imagination, although on particularly bad days (feeding wise), she will sleep a more than usual.

Her next appointments, both pediatrician and cardiologist are September 5th, so we’ll revisit the issue at that time. Meanwhile I do have a call in to the cardiologist, just to let him know she hasn’t been eating well - because while we’ve talked at length with her pediatrician on the issue, we haven’t seen him for almost a month, and hadn’t talked about her feeding issues quite as much at that time. One of the things he has been looking for is issues with her eating, so who knows, perhaps he’ll want to see her this Tuesday instead of next.

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August 24, 2006 by Brooke.

Jade had her upper GI this morning. It was kind of rough because in order to prepare, she couldn’t have anything to eat between 12 midnight and the procedure, which ended up being around 10:30 this morning. The procedure was over shortly after 11, and so she didn’t get to eat until around 11:30.

Of course, she woke up in the middle of the night and couldn’t understand why I wouldn’t nurse her, so I had to get up and walk with her to keep her happy. Alvin was a dear and woke up around 4:00 a.m. to take over and give me a couple hours of sleep.

The procedure itself went well. She made a big liar out of me and took the Barium right out of the bottle. My guess is she was hungry enough to take anything out of any container, because by all accounts, the stuff is *nasty*. The doctor didn’t find any indications that she has reflux or a pyloric stenosis, so that’s good. I had been holding off on the Zantac for the past couple days, until we had the test done, and really, she hasn’t seemed like she even needed it. So, I am starting to think that perhaps her reflux was more due to the milk allergy (which can cause reflux like symptoms), and now that I’ve successfully eliminated all traces of dairy from my system, and therefore hers, she’s doing better.

In fact, I was a little concerned about how not eating for almost 12 hours would have affected her, but she nursed so well today that she was up 3 oz just from this morning, which made me so happy. She was 10 lbs, 8.5 oz, which is the most she’s *ever* weighed. She also nursed a HUGE amount during a nap we took today, which probably had a lot to do with that.

So we’ve at least ruled out reflux (at least primary reflux), and her thrush is now all gone, so we just need to work on getting her to nurse a little better, but I think we’ll get there slowly but surely. Hopefully the 1-2 ounces of formula I give her here and there (when she doesn’t nurse well) will fill in the gaps until we get her nursing more consistently. Meanwhile I’ll keep on watching that diet. It should be a little easier now that her thrush has cleared up, so while I should be careful not to overdue it on sugars and yeasts, just to keep it from coming back, and I will continue the supplements and pro-biotics (acidophilus), I don’t have to be *quite* as stringent on the anti-Candida stuff anymore.

Now just to figure out exactly what she is and is not allergic to, instead of just guessing. From what I’ve being reading and hearing from some other moms of kids with food sensitivities/allergies, the most reliable way to determine food allergies that are causing digestives issues, is to eliminate all suspected allergens from my (thus her) diet and then when all allergy symptoms have cleared up, to try a little of one, and if no reaction over a couple days, try a little of another. Since it’s been a while since I got any wheat, nuts or milk, and she hasn’t seemed to have any allergy issues/reactions this week, I did have some wheat today just to see if she reacts to it at all. I haven’t had any of the other suspected allergens, so if she has a reaction (most likely gas and/or stool issues), we’ll know it’s wheat/gluten. I’m really hoping she isn’t truly allergic to wheat, but we shall see.

So, we have good days and bad, and today was a really good one. Hopefully we’ll start to have more good than bad. I’m really trying to step back from all the little frustrations during the day and see the forest for the trees, so I don’t get overly stressed, which, in turn, stresses her out.

It’s all in God’s hands, and we’ll take this one day at a time. For now, I’m just praising Him that we’ve ruled out reflux and the thrush is gone.

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August 21, 2006 by Brooke.

We’re back from the appointment.

According to their scale Jade was only 10 lbs, 3 oz, which was a gain of only 9 oz in an entire month.  Even though her cheeks are still chubby and she looks basically healthy, the doctor said she could tell Jade wasn’t doing well weight wise by looking at her ribs and shoulder blades.

We talked about all the issues at play - reflux, colic, heart, foremilk imbalance (due to poor nursing - she’s only getting the thinner stuff that comes first, not getting to the richer stuff that comes last) and possible allergies, as well as the fact that her diaper changes are indicating some disturbance in her digestive system (greenish/thinner stools).  The fact that she seems to be sleeping more (although very alert and active while awake).

She agreed, it’s hard to tell what exactly is causing her to nurse poorly - is it pain?  Frustration?  If pain, pain from what?  Reflux? Allergies? Or it could be that it’s colic, and her system is just taking a little longer to mature than most infants?  Could it be that her earlier exposure to dairy was what was causing the reflux symptoms, and that’s no longer an issue - in which case, the Zantac could actually be hindering her digestion.  Could it be a pyloric stenosis?  We discussed all of this.

She ordered a failure to thrive blood panel, to check her glucose, thyroid and some other level I forget (iron?), and she will also have an upper GI and ultrasound of her abdomen done as soon as the outpatient center calls to schedule it.  This should help us narrow down what may be going on.

Because of my own history with a milk allergy, and how severe it got (I also suffered from failure to thrive - to a dangerous degree), and the fact that soy formula helped, and the fact that Jade really needs to get some extra nutrition from somewhere, she did end up recommending I supplement a little with a soy formula.

This is not what I wanted to do, and I am struggling a bit with the decision to supplement, but at this point we’ve got to do *something* while we figure out what’s going on with her. And besides, this is what formula was designed for - to give nutritional alternative or boost when breastmilk alone isn’t enough.  I think it’ll help to just think of it as another supplement, like her acidophilus.  I’ll be giving her an ounce by dropper (to avoid nipple confusion, and because she doesn’t take a bottle well) a few times a day to see if it helps her start gaining weight.

I still plan on nursing, eliminating certain foods from my diet, and keeping up my supply and hopefully, once we get whatever her issues are diagnosed and resolved we can go back to exclusively breastfeeding.

The doctor wants to see her back in another two weeks for a check up, which happens to be the day of her next cardiologist appointment, so that will be good - we can discuss what he had to say as well.

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August 20, 2006 by Brooke.

Jade did end up having a couple good days where she ate much better and gained back what she’d lost, so that’s at least something good, and a praise, but the past couple days, she is back to nursing poorly again.

I do think the weight loss was probably due to food sensitivities/allergies, and not her heart, in light of the fact that she gained it all back a few days later, and am thankful that she did gain it all back, but starting a week and ending it at the same weight isn’t great.

She has an appointment with her pediatrician tomorrow, and we’ll see how that goes and what she recommends.

I am beginning to wonder if we need to consult a pediatric Gastroenterologist to figure out definitively whether she has reflux, or whether it’s more an allergy thing (because food allergies can also cause reflux symptoms), or whether it’s both, and whether there may be even more foods that I’m still eating that could be causing her issues. We’re not fond of the idea of having to take her to Charlottesville just to see yet another doctor, so we’d very much like to stick with our regular doctor, especially since she’s such a wonderful one, but if that ends up being what it takes to get this resolved, well then that’s what we have to do.

As much as it would be easier in regards to my diet and what I can and cannot eat, I don’t think formula would help, because she won’t take a bottle well at all - any time we’ve tried it, and I do try it periodically, just to see if I can get her to take more milk that way. Although she has issues nursing, at least she gets something, and even has days where she does great. So, I really think sticking with the breastfeeding would be best, as long as I’m vigilant about what I eat (no wheat, no dairy). I especially think nursing would be more beneficial since her immune system may not be quite what it should be with her heart issues, so she’d definitely benefit from breastfeeding from that standpoint.  Just that alone is enough reason to keep with it.

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August 17, 2006 by Brooke.

Jade is back to not doing as well. She’s certainly eating better, but the weight she gained over the past week (till Sunday) is seemingly slowly dropping back. She was up to 10 lbs, 6 oz on Sunday, but now, despite eating better, she’s down to 10 lbs, 3.5 oz. I know that doesn’t seem like a lot, and really it’s not earth shattering, but with everything going on weight loss is weight loss and not good, and to see her steadily, lose half an ounce to an ounce a day, is disheartening and really hard.

She’s otherwise in good spirits, but I am noticing her seeming to nap more, which has me a little worried. My guess is it’s her way of conserving energy. But boy when she’s awake, she’s a little spitfire, which is good.

I have a call in to her pediatrician, and am hoping to hear from her tomorrow, but she also has an appointment Monday, so either way, we’ll see what the pediatrician says about the gain and then loss.

I’m hoping we can, at the very least, try a new medication. I am hearing a lot about how incredibly weight fickle Zantac is, and I believe it based on how often we’ve had to change her dosage, based on a gain of just a couple ounces. This results in an endless cycle of her not doing well, upping her dosage, then she gains some weight, and starts doing poorly again because she’s outgrown the dosage. Lather, Rinse, Repeat.

I’m hoping to see if we can change her to something a little more reliable and less weight sensitive.

As far as the weight loss, I have two theories, but we’ll see what the doctor says.

Theory one is that it’s the heart issues finally (as the cardiologist puts it) “declaring themselves.” One of the things the doctor has been looking for is for her body mass to finally get to a point that she cannot sustain it nutritionally - which is the signal that it’s time to operate.

Theory two, based on my own similar issues as an infant, is that her dairy and/or wheat allergy, and the difficulty in keeping even trace amounts of even dairy and wheat derived additives out of my diet (it’s really harder than you might think) have lead to some digestive issues that are preventing her from properly absorbing nutrition. Of course that could resolve itself now that I’m becoming ever more vigilant about reading labels and being careful what I eat, but just the same, I’m hoping it’s theory one and not theory two, because, in a way, I would feel like it was my fault if things I’ve eaten, have caused this in her.

Then again, maybe it’s both things.

Like I said, thankfully she *is* eating much better, but we just need to figure out why the sudden switch in gears.

I’ll post another update after we talk to her pediatrician. Meanwhile, please pray that she’ll start gaining again, and that I’ll trust God and not let those panicky worried thoughts take over (which I’m very much prone to, as a mother).

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August 9, 2006 by Brooke.

We had a really rough weekend but Jade is doing MUCH better.

Sunday she hardly nursed at all, and when she finally did nurse fully, that evening, she ended up throwing it all up, which lead to me finally breaking down and crying about all of this (which was probably long overdue, and a good thing).

So I put another call in to her doctor, and meanwhile, went back to the original full 1mL dose of Zantac, figuring when I talked to the doctor, we’d either change her dosage or switch meds, and figure out what to do for the evening, if she needed any more medication.

Well, upping the dosage back up to 1mL seemed to do the trick. She was like a new baby! Not only that, but I’m very much starting to suspect a milk protein allergy - due to the vomiting and the fact that her diapers had been on the greener side (sorry if that’s TMI). While I had been cutting out almost all dairy for the anti-Candida diet, I did have a little lapse when we went out to eat Saturday, and I’d been eating butter pretty much daily, as that was allowed on the diet. It didn’t occur to me that she might actually be allergic to dairy, and that *any* amount would actually make her sick.

It makes sense because I didn’t happen to have butter any this week, and she started to get better. I’m also considering a possible wheat allergy, because the only other thing that’s changed this week has been not eating my yeast-free bread, which has spelt (a form of wheat) in it. Once again, I was ok with the spelt because some anti-Candida diets allow it in moderation, but if she’s possibly allergic or sensitive to it, I am going to have to be more strict in the “no wheat” rule, and stick more to things like millet, buckwheat and other alternative grains/flours.

When I talked to the doctor, she said Jade can have a full 1mL dose of Zantac and then another .5mL in the evening, and to call her at the end of the week to let her know how she’s doing weight-wise.

Well, she’s been doing great since Monday! She still has a couple fussy times a day, but nothing anywhere close to when she was screaming and refusing to eat every time I tried to nurse. She’s nursing MUCH better, and consequently gaining weight. Previously, she had stayed at 10 pounds for over a week, which really had us worried, but since Monday, she’s gained over 2 oz! Not a huge amount, but much better than no weight gain.

I really, really think it’s a combination of food sensitivities and reflux (actually the food sensitivies could be causing the reflux), so I’m going to be even more strict about what I eat, especially when dining out, and then when I’m sure she’s totally passed the episode, I can begin to slowly add a little dairy to see if that’s it. Then I’ll wait another couple weeks and try a little wheat and see if she reacts to that.

Both foods being a possible issue makes perfect sense as I had a rather bad dairy allergy as an infant/child and I have a brother who was allergic to wheat.

Praise God that she’s feeling and eating better and I have a good idea what may be the issue.

Now if we could just get rid of this silly old thrush we’d be golden.

Please pray that her good humor and eating continue.

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August 2, 2006 by Brooke.

Jade isn’t eating the best. I am having a hard time getting her to nurse or take a bottle of breastmilk. She’s doing *ok* but it’s a fight.

I am thinking maybe either her tummy or mouth/throat hurt (thrush? reflux? gas? take your pick), because she stops and cries intensely as soon as she starts. I am having a hard time getting her to really take much, so I end up feeding her a little bit very often throughout the day.

Thankfully she seems to eat fine during the night, so I’ll gladly take the sleep loss in exchange for her eating.

This started Sunday evening, and at first I thought it was the garlic tabs I was taking to help combat thrush (garlic can cause tummy pain in colicky babies), so I quit them, and haven’t taken one since Monday, but the screaming and fighting me during eating continues.
Of course it goes without saying the eating issues right now would not be good. While she has continued to gain *some* weight she is gaining only an average of 3 oz a week, and dropping off a bit in the percentiles.

Please pray that we can figure out whatever is causing this discomfort and that we’d be able to make her feel better so she’ll eat better.

UPDATE (after post was written):

Just got back from taking her to the doctor’s for a walk-in appointment. Unfortunately her regular Dr. wasn’t there, but we did see the next best Dr. in the practice (in my opinion).

He agreed it was good to bring her in, and after hearing how she’s behaving, thinks it’s still the reflux and she’s actually a little bit under-dosed with the Zantac. He said it’s not uncommon to have Zantac work for a couple days, and then the symptoms come back a week or so later and a larger dose is needed, so he’s upped her to 0.8 ml twice a day, instead of 0.5 ml twice a day.

Hopefully that will take care of things.

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August 1, 2006 by Brooke.

Just got back from the cardiologist and the story has changed a little bit.

Jade did finally make it to 10 lbs, which is good. That means she’s gained 6 oz in two weeks, so I do think the Zantac is working, and Dr. Albrecht is pleased with the weight gain.

Also, her oxygen saturation was *excellent* - 100%.

Dr. Albrecht said that given that her oxygen saturation was only 92% last time, he fully expected her to be in the 80’s this time, because that’s typically what happens, which is why he was thinking surgery this fall. He was so convinced it would be lower, in fact, that he had a copy of her chart ready to send to a surgeon after today’s visit. However he was surprised that it’s back up to 100%. So, now he thinks we can hold off a little longer on surgery. How long, he doesn’t know, because there’s no question she does need it at some point, but he said as long as she’s gaining weight and her oxygen levels are good, he said there’s no need to rush to surgery.

He said we’ll see how she’s doing next month (September 5th) and play it by ear.

I did verify that when she does end up having surgery, it will be at UVA (MCV no longer does pediatric cardiothoracic surgery), and that she will require open heart surgery. He said the catheterization procedures are really reserved for those infants/babies that have already had heart surgery (and they don’t want to open their chests again if they don’t need to) and/or those children for whom their defect is in a difficult to reach spot.

Since Jade is in excellent health so far, and has a fairly straightforward repair needed, as well as it only probably needing to be done once, they will go ahead and perform open heart surgery, since she should tolerate it just fine.

Also, he said her VSD is opened in such a way that the catheterization procedure and using the occluder to close the hole wouldn’t be ideal. Usually the edges of the hole are all in a plane, but one side of the hole is set a little back from the other side of the hole - almost like a circle that’s been bent instead of flat.

So that’s where we stand - a couple questions answered, but apparently still more watching and waiting ahead.

Of course I’m happy to hear she’s doing well, and not getting worse, but at the same time I’m a little disappointed and frustrated to have surgery put off, as odd as that may sound, because although we know she’ll need surgery, we don’t know when and just have to sit and wait longer to find out when. I had my mind all wrapped around September or October, which at least gave us some sort of end in sight.

Also, the thrush isn’t likely to go away until after the surgery, so it’ll be that much longer that we’re dealing with that, and all that goes with it (irritability, medicines, supplements, diet…).

So I guess we’ll just have to see what September brings.

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