Thanksgiving

****So this is a little late because my internet at home went out on Wednesday and AT&T still did nothing about it so I wrote it in Word and posted today at work. But better late than never I say these days ***

Every day I try to be thankful for everything we are blessed with but with the hustle and bustle of our busy lives we forget to stop and really see how much we really have. I have two beautiful children a great husband, a roof over my head, decent jobs and can provide for the needs and most wants of our family. Without all this nothing else would matter. I’m so very thankful that Emily has her baby brother to play with and love so so much. I’m thankful that she is so easygoing though stubborn at times and really goes with the flow when we need to take care of Jasiu. I am thankful that despite the HLHS Jasiu is thriving and doing so well. I’m thankful that I have a husband who loves playing with his kids, has no complexes with being the “babysitter” on Mondays when I’m at work and who supports me in every way. In addition we are blessed for our families and friends for helping us out in the toughest times, thankful we live so close to such a great hospital filled with the some of the most talented doctors and surgeons and thankful for science and medical advancements through which I can have my baby boy home and thriving. These last ones haven’t even crossed my mind one year ago, we just did not realize how lucky and blessed we are.

Before this year, I never paid much attention to or realized how fortunate we were to have a pretty healthy child, that we never second guessed taking her out everywhere, that she slept and ate pretty much everywhere and ate anything that came across her plate. Besides the regular pediatrician office and a few minor trips for x-rays, Emily had a pretty uneventful three years and while I always thanked God for this it was just in passing and never really dwelled on it. In Jasiu’s first 9 months leading up to this Thanksgiving which were anything but uneventful I have thanked God out loud every single day for every day we shared and prayed that we would be blessed with another. Why does it take such a misfortune to realize this? I don’t know, but Jasiu has taught me and our family that taking things for granted is not an option and everything you have materially means nothing when you don’t have health and family.  When reading all of the facebook posts on how thankful everyone is for all the things they are thankful for, I want to tell everyone BE THANKFUL EVERY DAY FOR ALL THAT YOU WERE BLESSED WITH and don’t wait for a tragedy to realize how good you really have it.

Yes sometimes the hard days are tough but the good days far outweigh them all and looking at my two smiling, usually slobbery two little faces and I realize I have so much to be thankful for.

Jasiu had some soup at the Klimek Thanksgiving and got to play with his cousin Sabinka (one week younger) and had some mashed potatoes at the Krol Thanksgiving and spent some time with his new cousin Sebastianek, no playing though he's barely 4 months old :) 

  

  



Two little people I'm most grateful for




The cousins on the Klimek side grew by two this year !




Jasiu and Sabinka




Emily and Ola resting after a meal they barely ate




The cousins on Krol side grew by two as well this year - here with Grandpa Krol




Pillow fight after




My miracle



I hope everyone had a great Thanksgiving weekend (I had 5 days off with the kids) !

DaDaDaDa....

Yep.. Jasiu's first words Dada !!! I'm not totally surprised since Emily's first mumblings were dada also, but since this kid is a complete opposite of Emily in almost all aspects, I was secretly hoping for "mama".

Ohh well any babbles are better than none, it's so stinking cute. Also, when he now wakes up and says dadadada, I can easily tell my husband your son is calling you and not me so your turn to get up.. haha..See video, I took this before bed time so he's already tired and not too clear,  but he was totally saying it ALL day as my mother in law was bragging.

In other news, Jasiu is almost 19 pounds, unofficially on our scale he was 18 pounds and 14.5 ounces, all on barely 25 ounces of milk a day with some solid foods two to three times daily. It's amazing and I'm so proud of him, it's not easy getting food down this kids throat but man it's worth it.  

(Please don't mind me and Joe in the background)

1st Synagis

Today evening John received his first dose of the Synagis. First of FIVE doses over the next five months. On top of everything else that this poor kid has to go through he will be getting TWO shots each month. It's really one dose but has to be split in two shots because the dosage per kilo is more than one milliliter and only allowed to inject one ml in each thigh. Needless to say this was not a pleasant experience for John. The only good thing about this was that our insurance will pay for a home nurse to come in and administer the drug at home instead of dragging Jasiu to the doctor's office which is full of germs and sickness during this time of year we get to stay at home and still get this over with.

The Synagis is a drug and not a vaccine. It is an antibody that treats the RSV virus which can be extremely dangerous for a premature baby or a baby with many serious heart conditions like HLHS so a small dose of the drug should protect him if he was to be exposed to RSV and his body should be able to fight it easier.

So our drug insurance company mailed the medicine to us and set up a home nurse to come and administer the injection. The medicine itself were two tiny vials the size of a finger and the box it came in was huge and could easily fit four adult shoe boxes.  Yes it had cold packs because this is a refrigerated drug but it seemed a little exaggerated. However, the drug without insurance costs around 2,300 so I'm sure they tried to package it so that it wouldn't brake in transit. 2,300 !!! that's outrageous and yes it prevents something very serious but it is still mind boggling to me the cost of medication. period.!They also shipped syringes and an additional drug called Epinephrine in case of an adverse reaction to the synagis. 

Well the home nurse came in and it seemed like a big mess, she did not have a scale to weigh John, didn't know how much of the drug he needed, she had to figure out the dosage, which I had to correct (thank God I'm pretty decent in math and equations and am familiar enough with the whole mg/ml stuff) and then we were given only one syringe and needle for the shots which she informed me that after the first shot the needle gets dull, plus she had to first give the one shot and then draw up the other which takes a good minute, that's a minute longer that I have a screaming baby before another painful injection.  Additionally, with all the commotion, I forgot to get Emily upstairs to her room to watch cartoons and she witnessed the whole shots thing with John so than she started crying hysterically that John was hurting and I had two screaming babies. It was not pretty. I'm sure it was terrifying for her to see and next month I will arrange for her not to be there or have someone upstairs with her so she doesn't have to witness this. Poor babies !

So tomorrow morning I'm calling the drug company to file a complaint about the needle and the whole issue with the dosage. They should know better and be better coordinated, we're not talking about something light here to me this is serious stuff and they should have their act together. That's all , I'm done venting now.  Poor Jasiu was crabby the entire evening, let's hope he gets some rest tonight.

Tomorrow I have more fun stuff, Emily gets her booster flu shot and I finally go get MINE ! Wish us luck.

Cath #2 Date Set

I just scheduled Jasiu's second cath - December 9th  - first case.

I don’t know why, but this upcoming heart cathederization for Jasiu  scares me A LOT. I am scared for him, since he’s now older and it will be harder for him to bear the pain and stay still for 4 hours post procedure. I’m scared what it will do for his eating since he’ll be on the vent again during the cath and he already eats so little,  but mostly I’m scared about the results and what this will tell us. There are so many unknowns… the severity o the narrowing, the impact on his blood pressure, the impact on his right ventricle, the way to fix this, the long term outlook…

I know this HLHS journey is seldom a straight path of 3 surgeries and a few caths in between, but this is a huge curve ball to me. I really thought Jasiu was doing well heart wise and all should be good until the Fontan and then it should be great for hopefully a long time but this  jerked me right  back to reality and to stop planning and for those who know me, that is almost impossible.

The cardiologist seems to be concerned enough to take him to the cath lab to investigate further so I’m taking this pretty seriously as well. We have known about some narrowing and we were “keeping an eye on it” for a few months now and now is the time to take action. I wondered how long you “keep an eye on it” in the heart world and I guess now I know… though again… it’s never the same for two kids or even for different issues in one kid  you’re watching so I still don’t know. As we will battle this obstacle it now makes me wonder about the other thing we are “keeping an eye on”, the mildly leaky valve. The doctor says it’s pretty common in these kids and that it’s not progressing but this watching an issue seems to worry me much more now than before because it could be another curve ball when we least expect it.

So we will pray that the cath will only tell us good results and a least invasive way to fix this and that God will guide the doctors to make the best decision in Jasiu’s care.  Also pray for strength for Jasiu to get through this as well as he has gone through and endured everything else, in good spirits and the sweetest smile.

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.

rolled right under the coffee table

Hello !

Little Monkey !!!!

Co starring the wicked with of the west

not so sure about the whole monkey suit thing :)

with Daddy

trick or treating is tiring..