Our HLHS Journey: Cath Postponed !!

Right after a nice Thanksgiving Jasiu caught a cold. For an average (health wise) baby a cold is not too bad though they probably feel miserable and lasts around 10 days or so... for Jasiu a cold with a cough causes him to vomit everything he ate and not because of a stomach bug but because Jasiu has "excellent gag reflexes" as the doctor put it and a small amount of phlegm while coughing or just the reflux itself causes his gag reflexes to go into overtime and out goes his entire bottle, cereal, fruit or anything he just ate. For a baby that already barely eats enough to sustain weight gain, this is not good news, add to that difficulty breathing while vomiting and the ugly grayish bluish colors his face changes is enough to really feel sorry for this kiddo. Finally it doesn't last just 10 days because we are going on day 14 and still the cough, though subsided significantly is still present. Also he is now only to puking once a day when the cough really gets him. It was so miserable last week that I took him in to the pediatrician to make sure that his lungs and ears are still OK and the virus did not turn into a bacterial infection and the news was good there but the cath nurses already were worried that he will not get better in a week's time and they were right. Today we had a follow up visit at the peds and though our Dr. C believed that he was OK after consulting with cardiology and the cath doctors they decided Jasiu needs to be COMPLETELY healthy in order to have the cath particularly because he will be under anaesthesia and ventilator and they do not want any problems with extubation. This is exactly why I chose our pediatrician and cardiology who work together and consult with each other in order to provide the best care for Jasiu.

So... long story short, no cath on Friday because there may still be some coughing present since he's still not completely good today on Wednesday. It has been postponed to December 27th. Good news here is that it's a little over two weeks away and enough time to get healthy, bad news it's enough time to catch something new. So this Christmas will be a little more stressful than usual since we still want to keep our traditions and be with family we will have to be extra cautious and be home bound as much as possible. Pray with me that the next coming weeks Jasiu will only get healthier and not get sick again, I don't know how much more we can postpone the cath and find out what is going on inside.

That's was the health update, now for the fun stuff. A few big things happened over the last week despite the sickness, Jasiu is on the move !!! Yep, following in his big sister's footsteps, Jasiu began crawling shortly after he passed the 9 month mark and he's slowly but surely crawling all over the house, where we let him (and the floor has been washed) and he's safe of course. Crawling is a huge step for all babies, but for a cardiac kid who was not allowed any tummy time for practically half his life (two months post first surgery and 2 months post the second) this is HUGE.... and here I was worried about developmental delays, he actually surpassed his sister because she never rolled over until she started crawling at 9 months and he's been doing it for over 2 months now, way to go Jasiu !!! So with crawling, we already had our first bobo, a bump on the head courtesy of the coffee table legs and a small split in the lip because apparently he got tired and his arms gave out and landed on his face and since he now has two bottom teeth, they cut his upper lip. It's nothing major but bobo's nonetheless. Neither incident stopped my little hero and he just kept going, I think I hurt more than he did seeing him do that.. and as any parent will tell you, no matter how cautious you are with them, they will still hurt themselves.

I'm glad he's crawling and being more independent because we actually had to take away his baby walker. We all noticed that he was so excited to move those little legs of his in it that he was zooming back and forth all over the living room and got tired and winded pretty quickly. At one point he scared grandma because as she explained it he almost couldn't catch his breath and went pale for a few seconds, which was enough to give grandma Josie and mommy a few extra gray hairs. It also didn't help that Emily loved to get "rides" from Jasiu on the walker where she would stand behind him on the walker and he would chug her along (Emily is about 40 pounds already mind you !) Jasiu was always so excited to go in it when he noticed the walker that we had to put it away for his own good.

In fun news, Jasiu went to see Santa last weekend and was a really big boy and was not scared at all of the big man. Emily also did great and said her poem for Santa that she actually learned for Polish preschool. She was lucky that she encountered Santa twice in one weekend, on Saturday at Polish school and on Sunday with Jasiu at the event sponsored by the Polish Highlanders of North America Circle #42, Bialka Tatrzanska, which is where my parents were born and I grew up until I was 9 before we immigrated to the US. It was really nice to see a lot of friends and family that we usually see at events like these, especially since we missed a lot of the spring and summer stuff because we were home bound.

Ohh and we are blessed that we could continue the tradition Joe and I started a year after we were married and went out to pick out a Christmas tree as a family. I love doing this every year and the house smells so nice for a while. Though Jasiu was covered most of the time because it's already really cold in Chicago, we snuck in a picture of all of us.

Here are some pictures of or man on the move, Santa and a Tree hunting. Enjoy !