December 5, 2006 by Brooke.

Well, we have the official word from Dr. Albrecht - Jade is considered somewhat of a medical marvel among his peers.

We learned two things today that we didn’t previously know for sure:

1. Dr. Albrecht did, in fact, consider her in heart failure back when he referred her for surgery. I had suspected as much, but he had never actually come out and said it, so I wasn’t sure.

2. Apparently her VSD was HUGE. What Dr. Albrecht had seen during his visits with her was actually the result of some closing. When they did the cath, and did the contrast dye, they were able to see the outline of the original defect, before the tissue began to grow over it, and it was originally the size of her aorta.

Apparently they’ve had a few meetings about her, with Dr. Albrecht as well as several of the cardiologists and cardio-thoracic surgeons at UVA about her remarkable closure.

He said the VSD is there, and probably won’t ever close all the way, but at this point, it’s small enough that it shouldn’t affect her much at all, so they’re just going to treat her as any other child with a very small VSD.

He said the only things they’re going to keep an eye on is her pulmonary valve (to make sure the stenosis doesn’t get any worse), and then her aortic valve. The VSD is right there near the aortic valve, and there is some *small* chance that the turbulence could begin to cause it to become leaky, but barring that, she’s relatively home free.

He said we don’t really need to worry or look for anything, if there’s any change, he’ll see it in her visits, and she doesn’t need to see him for another 6 months.

I hadn’t gotten a chance to talk to Alvin about what we were told, since he had to leave quickly for a meeting, but I just did, and we’re both just so amazed and thankful - to the point of happy, grateful tears. We’re actually glad in a way that we didn’t know, till now, how serious it could have been. This is exactly what we needed to hear to finally realize just how incredibly blessed we have been.

Hallelujah! God has been so merciful.

Ps. Jade is doing MUCH better with both nursing and weight. She’s still a tiny peanut of a thing, but her pediatrician is no longer concerned, as she’s staying on the 5th percentile curve now. She’s just a small girl. Her energy levels are very high, and she’s even crawling now, so she’s ahead of the game on her development.

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November 3, 2006 by Brooke.

The catheterization procedure went well. No issues, no complications. It did take Jade almost the entire observation period to wake up, but that didn’t surprise me, because I also take a long time to wake up from anesthesia, so she must take after me.

We learned a few things today:

• Jade does still have the VSD (holes between the ventricles)
• Jade does have a Pulmonary Stenosis (narrowing of the pulmonary valve)
• BUT, it seems tissue from her tricuspid valve is beginning to grow over the VSD and the hole has gotten smaller since the last time they saw her
• While she does have a Pulmonary Stenosis, it’s not severe enough to affect her health or require intervention at this time
• The anomalous muscle bands are not anywhere that poses a risk, so they want to leave them alone.

In short, not only do they want to put off surgery, but at this point, it looks like she may never need surgery. The doctor said there is *small* chance that things could change as her heart grows, but *most likely* things will continue to improve so now they don’t think she’ll need an operation. Praise God!!

Alvin and I haven’t quite wrapped our mind around that yet. We’ve gotten so used to the idea that she (according to the doctors for months now) would *definitely* need surgery, that suddenly being told she most likely won’t is just weird to us. It’s almost like we don’t want to let ourselves really believe it, because we’re afraid something will change again. I think it’ll sink in soon, though.

She will continue to see her cardiologist, then gradually going to a once every 6 months schedule, and then maybe even once a year after a while. She will also, as she gets older, likely need antibiotics before any dental visit - to prevent bacteria from her mouth from going to her heart through any bleeding from dental work/cleaning. This is fairly common for kids with a VSD, even a mild one, so that’s not surprising.

Oh, a couple other things we learned today - Jade is a lightweight and an angry drunk. The sedative they gave her was supposed to work in 10-15 minutes, but we saw the effects immediately, but while it did seem to mellow her it did not make her in any way more cooperative while they prepared her for the procedure. As long as they left her alone, she was loopy and happy, but as soon as they tried to mess with her, she would get angry. She fought them the whole time they were putting on the numbing cream for her iv and catheter sites, weighing her, checking her vitals and then she eventually just conked out, but continued to fuss and cry if she was messed with, even in her sleep. Of course the general anesthesia knocked her out enough that they didn’t have any issues performing the procedure - everything went according to schedule.

She spent the entire recovery time (while she was sleeping) fussing and fighting at me anytime someone came to check her bandages or her blood pressure. She’s quite the feisty little girl. Even though, she *still* managed to charm everyone who saw her, even getting visits from nurses who weren’t involved in her case. Once she was awake, she was her sweet self again, for the most part, and giving Bronx Cheers to anyone who’d look at her.

Thanks so much for all the thoughts and prayers offered up on her behalf! God has heard and granted those requests.

We still need to sort out what’s causing the feeding and weight issues, but at least we’ve ruled out the heart. Who knows, perhaps she’s just destined to be a tiny girl and eat like a bird. We’ll probably take her to a pediatric gastroenterologist if she continues to have issues.

Here are some pictures from the day…

Jade with Dad before we went back to the Cath Lab:

Jade feeling the effects of her sedative:

“Stop MESSING with me”:

Sleeping it off:

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October 19, 2006 by Brooke.

The cath is scheduled for Nov 3rd.

The timing of everything is kind of funny - she had her echo on the day of her originally scheduled surgery and will have the cath done on the day of her re-scheduled (but cancelled) surgery.

I had to kind of be a bit firm in order to get it scheduled. I called the woman who does the scheduling, just to check, and she said she’d ask the doctor in charge of the cath labs. She came back and said the doctor who was to perform it would be out for a while, so they’d have to schedule it for when she got back. So I, politely, but firmly, let her know that the doctor that saw her on Tuesday told us that *because* this other doctor would be out, he was going to have a different doctor perform it so we wouldn’t have to wait any longer than a couple weeks. So, she checked with the doctor again and we got our date.

I want to make sure I am not in any way rude, because these folks are all just doing their jobs, but at the same time, I still want to make sure I am a good advocate for Jade, and speak up when something is contradicting what we’ve been told. The sooner we get this cath done and over with, the sooner we can figure out when her surgery should be (whether that be now or a year from now), and go from there.

Anyway, the catheterization is scheduled for 8:00 that morning and we are to report at 7:00, so hopefully we’ll be able to take her home that afternoon, around 3 or 4.

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October 17, 2006 by Brooke.

Ok, here’s the scoop….we’re back to not knowing what’s going on, and no surgery date. {Big sigh}

We waited an hour and a half past her appointment time to even be seen, but thankfully Jade did cooperate for the echocardiogram, and they were able to get what they needed. Ironically, she seemed to wake up completely cold free this morning - which is the morning she was originally scheduled for surgery.

We were surprised it was just a normal echo - something she’s had done at least three times already, so I’m not sure why they didn’t do a 3-D echo, which is what we thought her cardiologist said they’d do.

Anyway, they came back with the same inconclusive findings that we’ve had with her other echos - Jade has a VSD and may or may not have a pulmonary stenosis (PS). There is a band of muscle in her heart that *could* be a PS, but may not be, depending on where it lies in relation to her VSD.

Sooooo, now they want to do a catheterization to monitor her blood flow and see exactly what is doing what and how much. (Click here for a description of the cardiac catheterization procedure) That will be scheduled sometime in the next two weeks, and will require her to be put under general anesthesia, but it is an outpatient procedure, so she should be able to go home that evening. It’s about 2 hours for the procedure (not including prep) and at least 4 hours of observation, so it’ll probably be at least 8 hours all told.

Now for the fun part…they’ve cancelled her surgery, because this cardiologist just isn’t totally sure she needs it right now and is more of the “only if she really needs it RIGHT now” mentality.

He is not convinced her feeding issues are heart related (as he put it, “some babies just have feeding issues”) and depending on what they find during the catheterization, they may reschedule surgery for a couple weeks past the catherization or may actually delay surgery as long as till she’s 18 months to 2 years.

This cardiologist indicated that he and our cardiologist had talked, but we’ve somehow gone from “She needs it done anyway, and we might as well get it done before RSV/Flu season” to “she definitely needs it done, but maybe not until she’s 18 months-2 years…we’ll see.”

I also don’t understand why these test were not done before now, if that’s what was needed to know for sure what we need to do. Don’t tell us you’re scheduling surgery until you’ve ordered the tests necessary to make that determination. It’s so frustrating to keep being told she’ll have surgery at such and such a time frame, and then to get our minds (and schedules) wrapped around that time, only to have it change for one reason or another, and then to finally be told, surgery really never should have been scheduled in the first place, because they don’t know the whole story yet. It’s like constantly being put through an emotional ringer over and over.

Alvin said that if we’ve learned anything through all this, it’s that our plans mean nothing. Stuff will change. I think he’s right. I have not the first clue why this stuff keeps changing, and why, but I’m sure God has *some* reason for it.

Meanwhile, we still have a child who just doesn’t eat well, and needs to be constantly fed, pretty much every hour, and all night long, in order to get enough food in her each day, and now it’s going to be that much longer till we find out why. That part is frustrating, because we *thought* we had an answer and an end in sight, and now that’s not the case.

The cardiologist we saw today said he could set up an appointment with a pediatric gastroenterologist, to see if there’s another reason why she might not be eating right, but we decided we might as well wait till after the catherization procedure, because that should tell us whether or not her heart issues are causing this. If it doesn’t show that her defects are serious enough to cause her eating issues, then we can look at other avenues, and consult a pediatric GI.

We will still be keeping Jade isolated until her catheterization procedure, as we don’t want that to be delayed by another cold or illness. After that, we’ll just have to see when (or if) a surgery is scheduled.

We’ll keep everyone updated.

I don’t even know what to ask folks to pray for - I guess just patience in all of this and for us to have faith that even if we don’t know what the heck is going on, God does.

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October 11, 2006 by Brooke.

I just got a call from the woman at UVA, and we’ve officially been rescheduled.

She said in addition to the question of whether or not Jade will be 100% healthy, and the question of whether or not there would be a bed available in the PICU, they also want to get a good in-depth Echocardiogram (Echo) of her heart prior to her surgery.

So, her surgery is now (re)scheduled for Friday, November 3rd, with pre-op testing on Thursday the 2nd. In addition, we’ll be taking her in this Tuesday (the 17th) for her Echo at 9:00 a.m.

Alvin said he’d just stay home with Dylan Tuesday while I take her for the test.

So it will be another 3 weeks before she has her surgery, but hopefully she’ll be fully healthy and nothing else will come up. Meanwhile, we’ll have to be even more vigilant about avoiding illness - no church, no children’s church, no parties for the next three weeks. After seeing how easy it is for her to get a cold, and knowing even just the sniffles can postpone surgery, I don’t want to risk it. It’s just not worth it.

In regards to the Echo on Tuesday, they sometimes sedate infants for the procedure, so they’re still enough to get a good look at the heart, but first, they want to try it un-sedated, so they want me to not feed her for four hours before the procedure, and with the hope that feeding her just before they do the echo will calm her. I think it’s good I wasn’t drinking anything when I heard her say that.  I love my daughter and she’s a real sweetie pie, but the thought of Jade being cooperative and still for anything, whether hungry or fed, is pretty funny. One of the biggest struggles we have with Jade is feeding her, so bottle or breast, it’s never a “calming” thing for her. If they can’t get her to be still enough, we’ll have to schedule another time (wasted appointment, wasted time off for Alvin, wasted co-pay) and then they’ll sedate her for the second attempt. So, please pray that Jade falls asleep and/or is cooperative for the echo on this coming Tuesday.

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October 10, 2006 by Brooke.

I went ahead and wrote the UVA Heart Center’s nurse coordinator to ask about the cold, how soon would they have to make a determination, and what criteria they look at for determining whether or not she’s healthy enough for surgery (runny nose? cough? fever?).

I just heard back from her and she said it’s fate that I wrote her today. She was just about to contact me and tell me there’s a chance they’d have to reschedule her surgery because several babies were just born at UVA that have urgent surgical needs, and so the PICU could be full next week.

She also said that even a runny nose next week can be enough to postpone surgery because, unless they’re sure it’s allergies, it’s a signal that she’s in a weakened state and they don’t want to do what is considered elective surgery (since she’s not currently in a life or death situation) if they can hold off till she’s healthier.

So, we’re still in a bit of a holding pattern, but there’sa good chance that her surgery will be postponed for one or both reasons. She said to keep her updated on Jade’s progress and whether she starts getting better or worse over the next couple of days.

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October 10, 2006 by Brooke.

Dylan started showing signs of a cold after we let him go to Children’s church the last Sunday, and since then I’ve been trying to keep Jade from getting it, but she’s got it.

(Public Service Announcement: Parents, please don’t bring sick children to church. You just don’t know who might get it - directly or indirectly - and how it might affect them. )

So far it’s just a stuffy/runny nose and crankiness, so I’m hoping that she’ll be better by the end of the week, and I can keep it from getting into her chest or turning into a sinus infection. I’m flushing her nasal passages with saline and using a bulb syringe to keep her cleaned out.

This could possibly delay her surgery if the cold gets worse. We’ll have to play it by ear. I’ll probably stay the course till about Thursday and if she’s not seeming like she’s getting better, I’ll call the doctor and see what she thinks, if she thinks Jade is healthy enough for the surgery, and then let UVA know what she says.

Of course, if she’s too sick for surgery, then that’s how it’s got to be. No sense subjecting her to major surgery if she’s in a weakened state.

So we’ll just see what happens. In the meantime, if you would, please pray that Jade will get over this cold, or whatever it is, quickly, and that it wouldn’t end up being anything more serious, like RSV.

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October 2, 2006 by Brooke.

Can you believe it? Only two weeks till we head to Charlottesville for Jade’s pre-op stuff.

Jade had her 4 month appointment today, and nothing really of note. She’s between the 5th and 7th percentiles for weight and almost 50th for height - so she’s definitely growing length wise. She’s on target or ahead on all of her developmental milestones.

Still not eating the best, but her weight gain has been pretty steady, even if on the slower side, so I must be managing to get enough in her. I try to feed her pretty much every hour - sometimes more than once an hour, so I think that’s doing the trick.

Since her immunity is not what it should be, and even a bad cold could postpone her surgery, we’ve been trying to keep her away from the general public. No Wal-mart trips or church for me and her, and we’ve also been avoiding larger gatherings of people. If she and I go out, it’s to the doctor’s office, or just having a couple friends over for a meal, as long as they’re cold and sickness free. I’m kind of a homebody anyway, so it hasn’t been too bad for me. Alvin’s great about getting anything I need him to pick up on his way home from work.

Anyway, that’s it for now. Keep the prayers coming.

Here’s two pictures we took of Dylan and Jade “camping” in Jade’s room. Dylan surprised me by saying she could camp with him, so we let her lie in the tent just long enough to get the picture. As you can see she’s *quite* taken with her older brother.

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September 13, 2006 by Brooke.

We finally got the call from the Children’s Heart Center at UVA. Jade’s pre-op appointment will be the afternoon of October 16th and her surgery is scheduled for the 17th of October. The average stay for open heart surgery for a child is 5-7 days, depending on how well recovery goes.

We were hoping for a surgery date that was a little sooner than that, given that we were told within 2 weeks back on the 5th, but I found out the surgeon our cardiologist would prefer to have do the surgery will be out of town the rest of the month, and won’t be back till October, and he is of the mind that Jade is not in any immediate danger that would require we find another surgeon to do the surgery early.

At least we have a date. We will be getting a packet of information on the procedure, on guidelines and a list of local lodging facilities (including the Ronald McDonald House) near the hospital.

Kind of disappointing to know that we’ll be waiting and continuing to deal with the eating and weight struggles for (over) another month, but at least theres a definite date and end in sight.

If you would, just continue to pray that God would have His hand on Jade (and our emotions and state of mind) during the next month while we await her surgery date.

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September 5, 2006 by Brooke.

Ironically, after all my stressing over those liver tests, and what they meant, the cardiologist didn’t seem at all worried about the liver test results. He said they are higher than they should be, but they’re not high enough to cause alarm. For him to be worried they’d have to be like triple or quadruple the normal level. He felt for her liver, just to be sure, and said it didn’t feel enlarged at all. He did say that he could prescribe her a diuretic to combat any signs of pulmonary hypertension or fluid retention, but he didn’t really didn’t see the point because, basically, even *if* she were in congestive heart failure, it would be the very, very beginning, and not likely to progress quickly, and chances are excellent that she’s going to have her surgery before it would get to the point that she actually needed medication to keep things in check. So that’s good.

What he did see was that her left Atrium is beginning to enlarge just a little bit, from the VSD. He also said he’s starting to suspect that she might not actually have much of a pulmonary stenosis at all.

Usually they diagnose a pulmonary stenosis in small infants by look at the velocity of the blood flowing through the valve in an echocardiogram, and hers had seemed really high, and it sort of looked like there might be a slight stenosis, and then even higher, later - which he again thought was a restriction of the opening (think of a thumb over a hose opening increasing the water velocity), but he said as she’s grown, and the valve is larger and easier to see, he thinks the higher velocity of blood flow is almost entirely the VSD (think, water simply being turned up higher on a hose, increasing the water velocity), which means it’s probably a good idea to operate to prevent damage to her lungs from the VSD.

He also thinks the thrush is possibly what started the downward spiral - she didn’t eat well because of that, which caused her to weaken, which in turn caused her to eat even worse, to the point that the VSD might have affected her earlier than it otherwise might have.

All of this to say, he is just of a mind to go ahead and get her fixed up, because her eating isn’t getting better, her weight gain is not really getting any better, and this will at least eliminate the heart factor in all of this, as well as prevent the VSD from damaging the vessels in her lungs. If they do confirm the presence of a PS in the 3-D imaging, they should fix that at the same time.

He’s referring her to the surgeons at UVA and we should get a call this week. He said to let him know if we don’t hear from someone by the end of the week. He also said he’s going to push for them to schedule surgery right away - hopefully within the next two weeks.

He said when she has her surgical consult, they’ll do a 3-D echo of her heart so that they can see better what we are and aren’t dealing with. His gut feeling is that her VSD may be bigger than they can see with the echo has access to in our town. Sometimes the angles can be deceiving. He said hers *shouldn’t* be affecting her the way it is, but if it’s larger that would explain why she’s not eating.

He also kept asking about the upper GI and if it showed anything, which I thought was odd, since I’ve told him at least twice that it didn’t. But then, he mentioned that he thinks there still might be some other issues at play. He also finally admitted that perhaps the GI just didn’t catch reflux (somtimes kids just don’t happen to reflux during the test), and maybe that’s still an issue for her.

I laughed because she was fussing during the echo, and he said, “Oh, I see she’s kind of colicky” and I told him, “Well, kind of, but right now she’s just ticked that we’re restraining her.” He agreed she got a little bit of an ornery streak to her. I had to hold her for the echo because she wouldn’t stop bucking him on the table. She ended up much happier and sweeter once I held her, and more importantly, she could see the image on the screen (she’s TOTALLY into knowing what’s going on around her). She licked on his fingers all during the echo, which is kind of gross, but hey, at least she was holding still so he could check her heart out.

Later on this afternoon we had an appointment with the pediatrician. That was relatively short. Basically I just relayed all the information from the cardiologist visit, and we talked about her weight and so forth.

We decided to hold off on her 4 month visit, since there’s a good chance she will be in the hospital or possible recovering by that time. We’ll just have her go in at 5 months.

She’s not doing the greatest weight wise. She had one good week and gained over 7 ounces, but now is back to gaining a half an ounce here and there, staying put some days, and sometimes even losing an ounce or more in a day. Basically her body has gotten to a mass that she’s having trouble sustaining nutritionally, due to the heart issues. So we just keep getting as much as we can in her - either nursing or occassionally supplementing (which is still a battle) on bad days - but it literally takes all day and night of pushing her to eat to get enough in her. I still mostly nurse her in her sleep during naps and in the night. I’d say only about a fifth to a quarter of her eating is while she’s awake. She’s just not interested most of the time. So I just wait for her to fall asleep, and feed her then.

She’s also taking many smaller naps throughout the day, which I think is a sign that she’s struggling a little bit.

The more moms with kids having heart issues I get to talk to, the more I realize that every child reacts to heart defects differently. Some turn blue, some, like Jade, just get a little pale now and then. Some literally appear too weak to nurse. Others, like Jade, are ornery devils and get ticked off and throw tantrums when they don’t feel like eating, and show their weakness in other ways, like sleeping more often. I just need to watch for any of those things to increase noticeably, but so far, we’ve been lucky and she really hasn’t presented with any alarming signs, other than the eating issues. It’s been great to be able to find other moms online to compare notes and find out that there are other kids out there who presented differently in some ways than their doctor’s expected. Or just to hear stories and support one another with listening and with prayers.

So we’re going to just keep on keepin’ on until we get a call about a surgical consultation, and then we’ll let everyone know what’s going on after we talk to a surgeon. I am actually looking forward to the surgery, because I know how much it will do for her.

Keep the prayers coming.