Heart Check-up

picture from April 27th

Little Guy went for his yearly heart check-up on Friday (May 4). 

He's 39 lbs. and 44 1/2 inches tall.  I think the doctor said he's grown 4 or 4 1/2 inches since last year. 

This year B got to come with us, but the fish tank was empty and under repair. 

The doctor said she hoped his heart would stay like this forever.  The valve they repaired is still growing with him as he grows which is good. 

So, for this next part to make sense, I'll have to reexplain some stuff.  When he was three weeks old they did a Balloon Valvuloplasty, going in with a catheter through his leg and explanding the aortic valve in his heart that was too narrow.  With this comes the knowledge that since they basically just tore it a little bigger, there will be leakage.  Sometimes a lot, sometimes a little.  He's always been on the lower side.  Last year the measurement of leakage from when they did the procedure was 23, this year 20.  She said normal is 1-10 and serious need for worrying is 50+. 

She talked a lot about how this valve will definitely have to be replaced someday.  Originally, when he was a newborn they told us they would probably wait until he was adult sized and that they couldn't predict what kind of technology would be around at that time to replace an aortic valve.  She talked again about how this procedure would probably happen in his adolescence and that she couldn't really predict how they would do it.  The latest technology right now for replacinga valve is going in through the leg rather than open heart surgery.  For whatever reason, that seems much less scary to me so I hope they keep going down that line.

Little Guy did great.  He was nervous but does such a great job holding still and listening to the directions given to him. 

Healthy Heart Check-up

Little Guy went to his pediatric cardiologist for his yearly check up today.  When he was a newborn, my paranoia was that he wouldn't cooperate.  His very first echocardiogram ever, when he was 3 weeks old, had to be delayed because he was hungry and I had to feed him, it was all very uncomfortable and stressful for me.  Plus, in Kansas, there were appointments that took 3 hours with waiting and all they have to do.  Here, the appointments are still pretty long (we arrived half an hour early to an 11AM appointment today and didn't leave until 12:30, but were busy most of that time).  As he's gotten older, my concern has been getting a toddler to lay still for long periods of time while they attach all the stickers and wires for his EKG and for a really long time while they do the echo.  Today was the same doctor he saw last year, but at a new office.  And this office was playing Finding Nemo and had a giant fish tank, complete with Nemo and Dory.  Little Guy loved it.

They started off weighing him and measuring how tall he is.  She even told it to me in inches and pounds instead of the metric measurements, and I forgot.  I *think* he was 33 lbs. and 40.5 inches.  He was hesitant to step on the scale but finally did.

Then a nurse had him take his shirt off.  He asked us before the appointment if he'd have to take all his clothes off and if the doctor would give him a shot.  This is the first time he didn't have to strip down to a diaper, he got to keep his shorts on.  The nurse attached all the stickers and wires for his EKG.  The hardest part was convincing him to lay down on the paper covered exam table.  He did NOT like this.  Once all the stickers and wires are properly attached, it only takes 10 seconds for a reading. 

Then into a new room (sports themed) to wait.  After 5-10 minutes the echo lady came and got us and took us to her exam room.  She put on Sesame Street (a huge improvement from SpongeBob, which is usually what we get stuck watching, and who Little Guy is clueless about and not interested in).  Again, he freaked out about laying down, even though this exam table has a pillow.  This is basically like an ultrasound when you are pregnant.  She puts a little pit of gel on and then runs the little (I told him it was a camera) all over his chest, neck and tummy getting good pictures of his heart.  This takes 20-30 minutes (I don't know exactly).  About halfway through it he relaxed a little and started talking to me more about Sesame Street and what the echo lady was doing.  I told him he could look on her computer and see the pictures she was taking of his heart, and he glanced at it but that was all.  After the echo he was rewarded with a ball and a lollipop.  And off to a new room (animal themed) where we waited to talk to to doctor.  This wait was maybe 15-20 minutes.

The doctor came and listened to his heart.  Again he didn't want to lay down on the table, although when I asked him to pose for a picture on my camera phone when there was no doctor in the room, he wanted to lay down on the table and I told him he could stay sitting up.  She listened to his heart and had him take big breaths.  Then she talked to me.  She said everything is the same as last time.  There is still a slight leak which is common after a balloon valvuloplasty.  She said kids with leaks like this have to be careful with weight lifting types of sports and heavy contact sports (ie: football), but to still expose him to a variety of sports.  She made it sound like to test his bodies ability to cope and also so he's got a variety of sports he's tried in case later on he's limited to what he can actually do.  So, don't just introduce him to baseball, because maybe it will be outlawed later.  Introduce him to baseball and swimming and soccer and golf, etc.  She asked him if he wanted to play T-ball.  He told her (me) "[Buddy] plays T-ball."  She told me that he's probably going to stay steady like he has been until he's an adolescent.  And even then he may steady out even more to where she'll only have to see him every two years.  She asked him if he'd come back and see her in a year.  And she told him she'll never give him a shot, she doesn't even have the stuff to give shots anywhere in her office.  Then she gave him a stack of stickers.

When we got back to the car and I was buckling him in his car seat he said, "that was fun.  And scary.  The fish tank was fun."

Heart Check-up

First, notice this lovely bruise/black eye. He ran into the corner of the coffee table a few days ago. First it was a bump and a bloody scab. The scab fell off in the bath the other night. Then the bruise grew and that whole temple is ugly yellow. I couldn't get him to close his eye, but there's a bluish black bruise there. Plus, two skinned knees and two skinned elbows and a tiny cut on his lip... all boy.


Smile. And when he sees pictures of himself smiling, he smiles the same way and shows me.


This game is Rush Hour Jr. Buddy loves it. Baby X just likes playing with the little cars. Today he put all the cars away on the board (one was missing, so two empty squares) and he'd come to me because he'd have a bus (three squares) leftover, and only spots for a two square vehicle and I'd help rearrange. He did this a few times, then finally he got them all on and came running proudly to show me he'd done it. A game that makes even the littlest of us think.

Baby X is 2 years, 3 months and 5 days old today and and he went in for his (now yearly) heart check-up with a brand new cardiologist here in Virginia.* He last went in Kansas in June 2009.

First, the kid did great. I've been dreading him going in for these check-ups when he's two, three and four because he won't quite understand what's going on, and I worried he wouldn't hold still for them. Last year, as an 18 month old, he kept pulling all the EKG wires off of him, but was still pretty good. This time, he was silent but would look at me every once in awhile like, "are you sure this is all okay?" Or a couple times he quietly said, "[Baby X's] all done." But I explained he needed to lay down a little longer so she could get more pictures of his heart and he said, "oh" and held still. It helped that this office let him watch 101 Dalmatians. In Kansas Sponge Bob was always on, and my older kids barely know who Sponge Bob is, so it wasn't very entertaining for Baby X.

His new cardiologist had her student come in and listen to his heart. She said his chest wall is thin and makes it very clear to hear the murmur in his heart so he's great for students to practice on. She asked Baby X if it would be okay for her student to come listen to his heart too and he said, "yes."
The doctor said that he is doing great. Whatever the rating they give his heart's blood flow has actually improved (either from 17 to 22, or 22 to 17... whichever of those is better) since last June, meaning, the corrections they made to his valve with his balloon valvuloplasty have kept growing as he has. She rated it at mild. (His doctor in Kansas continually rated it as mild to moderate... critical before the procedure.)

More for my own memory:
The doctor said with his heart, he is much more susceptible to infection and the blood would pump right to his brain so to be aware of that. Until 1997, they used to require kids like him to have antibiotics before going to the dentist, etc. She said just to be aware of fevers that seem to be without cause and to take him to his pediatrician and remind the doctor of his condition, and they'd perform a blood test to check his blood. A patient of hers got a bunch of bug bites on her leg and scratched them and they got infected and led to a fever, etc.

*He weighed in at 28.4 lbs. and 35 1/2 inches tall. (I'm guessing because I didn't think to write it down at the time.) This is about a pound heavier than his two year old check-up in January (which is understandable since all he wants to eat these days is rolls), but an inch and a half shorter. I think his January height check is more accurate. Today it seemed like he was taller than she was measuring.

Cardiology Check-Up

As if Halloween wasn't crazy enough... Baby X also had a check-up at Children's Mercy this afternoon with his cardiologist. He hasn't been since the summer as the appointments have been getting further and further apart. This time he got the go ahead for a year until his next visit, which got moved to 9 months when I mentioned that we'd probably be moving next summer.

Baby X was awesome. He's the wiggliest baby ever. I can't get him to lay still for a diaper change or getting dressed so I was sure that having an EKG (about 8 little electrode stickers on his chest, arms, etc. with little wires clipped to them... he loves wires!) and an echocardiogram (which requires him laying still while she squirts goo on his chest and takes 20-30 minutes doing an ultrasound of his heart) was going to be horrible. He did great. He just laid there and starred at the woman doing it. It was his best time yet. Even as a newborn he'd cry and fuss a bit before eventually falling asleep. This time he just laid there and looked around. When he got a bit fussy she handed him a Dory fish toy that he chewed on until she was done. It was awesome. I had been really worried about how these appointments would go as he got older and more mobile. Good job, Baby X!

He weighed in at 9.34 kilograms (20 lbs. 9.45 oz.). I dont' remember his height, and it was in centimeters. They also take his blood pressure, etc.

Troublemaker

*

Baby X is by far my most active baby (at this age). He crawls all over. And once we figured out crawling, and ended up at a table or a step, he was pulling himself to standing. Now he thinks he's pretty cool and tries to let go or hold on with just one hand. Ahhhh!

I took him to his regular pediatrician this week because I was worried about how busy he is. He'll crawl all over playing with each thing in the room and work up a sweat and he'll be breathing hard. I didn't remember my other kids ever being this way, so I took him in to have him checked out to make sure his heart is working the way it is supposed to be working. He's fine. His doctor listened to it, they put this little monitor on his foot and toe to monitor the oxygen in his blood (he was hooked up to one of these the whole time he was at Children's Mercy), etc. His doctor just says he's very active and his body is doing what he's supposed to. He's not training for a race so when he gets tired, he won't keep pushing himself to go, he'll just stop and rest. She said if he was breathing hard at rest or asleep, or if his lips or anything turned blue, that's when we would worry. So, I guess he's just giving his heart a good cardio workout.

He weighed in at 19 lbs. 7 oz., a little over a week shy of his 8 month birthday.

*Mom, or anyone, if you want to copy and save any of these pictures I put in the grid collage to have prints made , let me know and I can send you the picture in an email or post if separately. It's just much easier to upload a bunch of pictures like this than to do it individually.

Heart Check-up

Baby X had his check-up with his cardiologist today. Here are the stats:

5 1/2 months old
15 lbs. 5.15 oz.
25 3/4 inches tall

His EKG and echo both showed that he's doing as well as his last check-up. I've been worried about how he'll handle having to lay so flat and so still as he gets older. Before he'd eventually fall asleep during the echo (it takes maybe 15-20 minutes). He's getting so strong that he tries to lift his head up and then all his chest muscles are tense, etc. He was okay for his EKG today. It's just a matter of getting all the stickers stuck to his chest and all the cords attached, then it's just a minute or so and it can all come off. The echo is basically like an ultrasound pregnant women get. So I have to shush him and keep his hands of the gel and keep him calm and lying still. He did okay at the beginning. Then he got pretty fussy. I didn't think he was horrible, but when his doctor came in with the results he'd heard about it, so the technician must have mentioned it. It was sort of in a laughing way since he's so tiny and part of the problem is he's so strong and if he doesn't want something to happen, he doesn't want it to happen.

I asked the doctor what the prognosis was for the future since originally he told us that Baby X would have to have the same procedure done again in infancy. He told me today that he highly doubted that he'd have to have the procedure again as a baby, probably again as a toddler or a school aged child. So that's good. I guess they just never know if what they've corrected will continue to grow with him or if it will stay the size they've corrected it at and will have to be corrected again soon.

So, good news. And we don't have to go back for 3 1/2 months.

Cardiologist Check-up

Baby X had a check-up with his cardiologist today (EKG, echocardiogram, etc.). It went well. His doctor said that his tests results were even a little better than at his last appointment, and that the valve that they corrected is growing with him as he grows. So that's a good sign. I guess they never really know if it will grow as the baby grows or not. He indicated that some babies who had had angioplasty when Baby X did might need it again at this age, or very soon, but Baby X seems to be doing great. We don't have to go back again for two months. Yea!!

[I posted this without adding Buddy's translation of this so I'll add it now. B got home from work and Buddy explained to B that Baby X's doctor's appointment went well because "his heart was beeping more than at the last appointment." How cute is that?]

[I also posted this forgetting to include his weight. They weigh him in kilograms, so I have to come home and type it into a kilogram/pound conversion calculator online to figure out how much he weighs. This appointment he weighed 5.945 kg (if I wrote it down right), which translates to 13.106 lbs. or 13 lbs. 1.7 oz. (if my math is right). I don't remember how tall he was (they tell me in centimeters). He goes to his regular pediatrician for is 4 month old check-up at the end of May.

Cardiologist visit - March 26th

Baby X had his second post hospital visit with his cardiologist Wednesday. Everything seems to be fine. At each appointment they've done an EKG and an echocardiogram. His doctor says everything looks like it did just after the procedure. He said we might need to do a balloon valvuloplasty again in infancy. Since babies grow so rapidly up until about 4-6 months he'll still need to see us rather frequently until Baby X is about 6 months old. Last time there was 2 1/2 weeks between appointments, this time he said 4-6 weeks and scheduling wise, it'll be almost the full 6 weeks. He was glad to see how big Baby X has been getting. He seems like a chub to us now, but I typed his new weight from this visit (11 lbs. 10 oz) into a growth chart calculator online and he's in the 25-50th percentile. So not as huge as he seems. :) And he's 23.4 inches tall, which also isn't as tall as we'd suspected.

He goes to his regular pediatrician on Monday for his two month check-up.

Cardiologist Update

Baby X had his first appointment today since checking out of the hospital with his cardiologist that performed the angioplasty procedure on his heart. They did an EKG and an echocardiogram, etc. He said everything looks good, but is is a procedure that they'll need to do again but now he's fine. And because he's so little (young little, not size little, although probably size little as well) they want to see him more frequently. So we go back at the end of the month (which, while it seems like it's early March, and the end of the month would be late March, his appointment is for the 26th and today is the 7th, so we're going back in 2 1/2 weeks. Hopefully they won't all have to be so close together).

Doctor's visit

Baby X went to his regular doctor today. He weighs 9 pounds, which was his hospital discharge weight, but is over a pound more than we weighed just over a week ago at his last regular doctor's office weight check because she was worried he wasn't gaining weight (which we now know is partially due to his heart problem).

The doctor said his heart murmur is much quieter. It's now classified as minor to moderate aortic valve stenosis, rather than critical, which it was first classified as.

He's spitting up a lot, which is probably reflux, but she doesn't want to put him on medication just yet since he just got out of the hospital.

Anyways, Baby X seems to be doing great. Just to update everyone.

Home Sweet Home

We got to bring Baby X home from the hospital yesterday. Yea! This first picture is just after his procedure when he's just woken up from the anesthesia and was brought up to his room.

My poor baby with all those wires hooked to him.

Here is another picture just after.

In Daddy's arms waiting to get discharged from the hospital.

Two Bandaids

Baby X is home with only two bandaids to show for his week's stay in the hospital. We didn't expect him to be able to come home for a few more days since the one nurse I asked about it said she didn't really know, but sometimes it's 5-7 days after the procedure. So when his nurse called this morning at 9 to tell me he was being discharged today we were surprised and happy. B and I drove over to get him at noon and brought him home. He's doing great. Thanks for all the prayers.

Success

Baby X had his heart procedure this morning. Afterwards the doctor took us into a little classroom sort of conference room with giant screens in the front with images of Baby X's heart during the procedure and he talked us through it all. It was a success. He still has a slight obstruction, but they are okay with that because it means that if necessary, he can have this procedure again later on down the road rather than the next step having to be valve replacement surgery... if that makes sense.

I asked about Baby X's future lifestyle. Basically, he'll probably have to avoid sports like soccer, basketball and tackle football, but baseball could be a possibility and definitely golf and bowling. He'll be able to function like a normal kid, even playing these sports for fun... just not super competitively on a high school team or something. He'll be making frequent visits to the cardiology clinic at Children's Mercy and his cardiologist will be able to better direct us to what he can and can't do as he gets older.

Down the road he'll have to have valve replacement surgery, but hopefully this procedure today pushed that back until he reaches an adult size.

He came out from under the anesthesia will. His voice (ie: cry) is really hoarse from a sore throat after having a tube down it. And he has a big bandage on his leg from where the catheter went in. We stuck around at the hospital until he'd had two normal feedings and then came home (we spent last night there). I'm trying to spend every other night at the hospital, so tonight's my night home with the big kids, and tomorrow morning.

Heart Murmur

Baby X had a heart murmur at birth. Last Friday his doctor sent him for an echocardiogram. It turns out he has Critical Aortic Valve Stenosis. He was immediately admitted to the children's hospital and that is where he's been ever since. Today he was supposed to have a balloon valvuloplasty, but do to malfunctioning equipment, it was postponed until Thursday.



This is what B found out after Googling valvuloplasty:

I found this PowerPoint presentation wherein it defines a "successful" balloon aortic valvuloplasty as one in which the "patient did not die." Well, I'd happen to agree. (There are more criteria than that, actually, and the procedure is successful more than 80% of the time, so that's good news.)
Some of this information is a little skewed, though, because they use balloon aortic valvuloplasty for really old people who aren't healthy enough for bypasses or valve replacements, in addition to little kids like Stoic Sam. (For instance, some of the statistics have the patients divided into three groups, under 70, between 70 and 79, and over 80.)
The conclusion of this slide show is that mortality is low but morbidity (prevalence of the condition) is high. But again, they're dealing with old people who need the procedure because of a lifetime of heart health, not because of a birth defect, so I don't know how much of that applies to us.
Here's an article about a successful BAV on a 1,600 gram (3 lbs. 8 oz.) infant. (I might be able to see this article because I'm on the Internet at a university right now; if this doesn't work for someone else, let me know).
Here's the abstract of an article I can't even get to on the university server about the best method of treating infantile aortic valve stenosis. Their conclusion: punt. (They're trying to make me pay $25 a year so I can read a report that concludes with "it depends"? No wonder doctors are rich!)
Also, it appears that "cutting edge" stuff in this field revolves around doing this to a fetus, which seems even crazier.