Our HLHS Journey: Little Tornado ...

Tough guy !!!

Jasiu is a little tornado as I like to call him. Weather its in our arms, on the floor, in his crib or the walker this kid is on the move.ALL.THE.TIME. This is such a blessing, I know. After all that he's been through and endured in the short 8.5 months I am amazed at the amount of energy and smiles this kiddo has. He rolls back to front, front to back all the way from the safe blanket zone all the way under the coffee table, or mommy's bed or the edge of the baseboards, it's just non stop when he's awake. He is starting to pull up and trying to maybe crawl but not just there yet. The 4 months of restricted belly time put a toll on his arm strength. I give him a few more weeks and he'll be on the move completely, there isn't a doubt in my mind. He's also become quite the character acting like a total boy, banging his toys on the wall, pulling his sister's hair and my earrings. He claps, smacks his lips and laughs all the time, just pure happiness... until it's feeding time as usual.

This tornado thing is all good and we are overjoyed that HLHS has not hindered his development much EXCEPT when it comes to cardiology visits the weight, height, blood pressure and sats was all piece of cake compared to the second part of the visit..

Challenge #1 - Try getting a nice and clear picture during an echo cardiogram of this tiny little heart and those small blood vessels, and his unique anatomy on a squirmy eight and a half month old and you have to be great at your job to accomplish such a task. Jasiu was not having any of it on the exam table, he kept squirming, trying to smack dear Rick away, especially the echo wand. Jasiu is pretty precise when it comes to smacking things away when they bother him, weather it's the echo wand or the bottle he will let you know he does not like that. So we tried cartoons and pacifier and about 10 other things and finally I held him in my arms and tried to keep him as still as possible with the one hand I had free to entertain him. Dear Rick, our echo tech, is very patient and quick, two very good traits of a pediatric echo tech and got all the pictures we needed for the doctor in the short bursts of stillness that we had.

Challenge # 2 - EKG - another one of those tests where the patient needs to be pretty still to get a good reading, even more still than the echo... Plus he has about 10 stickers all over his body and then ten wires attached to those stickers. Poor Jasiu looked like a Christmas tree and it all looked so cool to grab, kick off, pull off, etc to an 8 month old. So we try another ten things to try to get him to stay perfectly still for a good reading, considering everything, it only took two tries to do so but about 15 -20 minutes... The thing that worked, I let him play with my train ticket where he only moved his fingers to play with it and I held/ hugged him close to me on my lap holding closely every appendage except his fingers and IT WORKED.

After all the fun stuff we were waiting for the doctor to read the results of the echo and EKG and we were happily playing in the exam room until John has the most precious look on his face as he lets out a "good one" . Ohh yes ladies and gentlemen, Jasiu let them know at clinic that he eats solids now, no more sweet smelling poop for us. sorry for the visual... Just as he was about to finish his business Gia, the NP came in to talk and I told her were not finished yet, she tried to talk through the smell but quickly realized that it was too much for her and left until we were finished with our business and diaper was changed (she just got married and has no kids so I don't blame her :) Anyways I though it was HILARIOUS, Jasiu letting them know how much he loves it there ... haha!

Then we had the PT and OT come in and do a quick evaluation and they played with him, at this point it was 10am and Jasiu's nap time so he was slightly crabby but still showed off his tornado qualities and they were very pleased. They don't believe that he is more than 30 % behind on anything therefore Early Intervention probably wouldn't even take him into a program. She let us know that we can do a full eval with EI if I wanted to or just continue to encourage him to move just as we have been. Honestly I don't think he needs it either but we'll see.

Finally Doctor H and Gia came back! We have some mixed news in the cardiac department, not a great report but nothing major yet until they get a better look. Basically in the last two echos Jasiu as well as today's he has had some narrowing in the aortic arch that was patched up during his Norwood (first surgery). He is quite unique as Dr. H said because he has narrowing on both sides near the heart and further out where it connects to the rest of the artery branch. Most kids have narrowing in only one spot but as we all know Jasiu likes to keep us on our toes. He thinks this is probably due to scar tissue but he's worried enough and it's getting worse that he wants to see it in a cath lab to get an exact visual of how much narrowing and what the possible ways to fix this are. In addition to the narrowing the patch is also "ballooning" near the bottom and they don't like to see that either.The narrowing is contributing to his blood pressure issue and it's also adding strain on his right heart muscle, because it's the only one Jasiu has we want to keep it as strong as possible as long as possible and don't want to overwork it. Since the narrowing is on both sides, they will see if they can just open it up a bit in the cath lab or place a stint in. The thing with a stint is that because it's on both sides there is some possibilities of it cutting off the other arteries and that's not good either. When he was explaining all the possibilities on how to fix this he even mentioned the word surgery and that stopped me in my tracks, but I'm done being negative and we will just wait and see what the cath results are before we worry about it too much. The doctor said besides those two to things he looks great and growing well. The heart function is good, just don't want to keep straining it. The leaky valve is still minor and not progressing which is good. His pulmonary veins look good and the Glenn is looking just perfect. It's the Norwood piece that is giving us a few minor issues. The cath nurses will schedule something for early December so we will try extra hard to keep Jasiu healthy until then.

We also had our 9 month old pediatrician appointment right after cardiology ( I like to get all the appointments on the same day if possible to get it all over with) and we got a clean bill of health this time. I forgot to mention that I took Jasiu in for what I thought was a cough or something respiratory related to the pediatrician and we came home with an ear infection diagnosis on Halloween. So Jasiu was on Amoxicillin for 10 days. He loved that stuff and even sucked on the siring to get more out. He wasn't crabby or feavery which was strange to me but it's all behind us and today he is all good. So he got his 9 month vaccine and his booster flu shot. Next week we have a nurse coming to our home to administer the Synagis shot. I hear those are painful but protect against the RSV virus which could be very dangerous to a baby that is a preemie or with some severe heart conditions like HLHS or other respiratory conditions. So for the next 5 months Jasiu will get a monthly injection of the Synagis to try to prevent it. I will update with those results next week.

Some sats if you're interested
Weight: 18 pounds 13 ounces (8.58kilos)!!!!
Height: 27 inches
Head: 17.7 inches
Blood pressure 94/47 (pre echo) 103/43 (post echo) - all within his norm

Now for some fun stuff...We have another tooth that broke through next to the first one on the bottom and EVERYTHING that can fit in Jasiu's mouth and he can manage to pick it up goes right in. Again we try to keep his toys separate so he doesn't catch something but it's so hard with a 3 year old running round everywhere. Also it was Jasiu's first Halloween ! He was the cutest little monkey. We did go trick or treating with him and his older sister because we were lucky and had pretty good weather and the monkey costume was quite cozy. Last weekend we also already went for our Christmas photos. Both kids were pretty cooperative but the Tornado was just that and kept playing with the ornaments instead of focusing on the camera.. I'm sure they will turn out great, Lisa at Lil' Me Photography does a GREAT job.

WOW this has been a long post.. Thanks for sticking through it and here are some pics of our little tornado.