We're Home

We are home from our overnight stay at the hospital. Today went as well as yesterday and Jasiu is pretty much back to himself. All tests came back good, EKG, Echo and X-ray.  I won't bore you with all the details since yesterday's post was really long and captured all of it. (Also, sorry for the typos and errors, it was written on my phone, so I did not catch all the errors and it was hard to review but I'm sure you got the gist of it so today's post will be a fun one with a recap of our stay in pictures.)



Roaming the waiting room with dad




Rocking his Sisters by Heart hospital gown (It was a hit with the nurses, Thank you !)




Laughing at dad playing peak a boo with the camera :-)




Our first half smile post cath




Playing with his new toy from the hospital




Bless him for sleeping as well as he did all tangled up in the wires and actually sleeping on the leads transmitter box thingy.l




Playing peek a boo after breakfast




This trip was exhausting - Home Sweet Home !


We hope you all have a wonderful New Year's Eve, we will be hanging out at home with our two lovely children trying to avoid getting sick and plus Jasiu may be a little stinky... no bath time for 7 days... (sponge bath only).

Happy New Year Everyone.

Today's cath

For all those liking at the big picture only, today's heart cath went really well... Better than expected and that's a huge relief for us.

The reason for the cath was that the echocardiogram ( ultrasound of the heart and surrounding blood vessels) showed a narrowing of the aorta which was repaired during the first surgery in two spots as well as a little sagging near the middle, which the doctors thought was an aneurism. Well, if that was an aneurism and the narrowing was significant enough to require opening up/ stretching/ or ballooning, it would not be possible to do it via catch because the risk of the aneurism braking and causing internal bleeding and damage was too great and the narrowing would have to be fixed in a more drastic fashion like placing a stent or even surgically.

However, the cath showed that heart function was excellent, the pressures in the artery is good, and the narrowing not significant enough that it required intervention. Even our cardiologist came to the cath lab to see the pictures himself (additional benefit of having a centralized health care for Jasiu, his medical team all under one roof). This is a huge relief because the worst case scenario was that he would need another surgery (unplanned in case of
HLHS) to fix this issue. But for now this is not an issue, thank you Lord.

What they did find are collateral vessels, these are veins that sometimes grow around the actual veins and arteries and they may even 349-1756grow large enough to redirect blood. Jasiu's collaterals were carrying blood back to the lungs instead of the rest of the body and that was not good for him so they coiled I think two of the large ones. This means they put metal, platinum really, clips to block off the blood flow. Since this was an intervention during the cath, we as in Jasiu, has to stay in the hospital overnight for observations only.

The whole procedure lasted about 3 hours and this time we were only in recovery area for only one hour since there was a room for us on the floor. Compared to the tiny procedure center recovery rooms, the Hope 2nd floor patient rooms are like grand hotel suites, complete with cable and a mini fridge and your own bathroom. Quite luxurious, hahaha.

Anyways, Jasiu took it like a champ. We had a small issue during the preach vitals and thanks to mommys intuition we avoided a pretty large mistake from happening. Of all things it was a weight issue. When they weighed him they got 7.16 kilos but because we are now weighing him i
In pounds at home I did not have time to recalculate from kilos to poinds, then comes in the doctor and we talk about his meds history and get to weight, and he looks at the nurses report, I look at my notes and mention that I'm not sure how much this is in pounds... He says just multiply by 2.2 ( which I know just haven't actually done it yet) and says "7*2=14 plus .2*.14 ehh around 15. WHAT!!!!!! No way, this kid weighed 19 and 12 ounces YESTERDAY, grant it it was on my scale I bought at BabiesRus but almost 5 pound difference is huge especially for a baby. So the doctor weighs him laying down, 8.98 kilos, ok, then we weigh him sitting on the scale like the original way, 7.5 kilos, we do another set and each time we were a whole kilo off, now the doc was shocked. A kilo or 2.2 pounds on a baby is a huge huge difference, especially for a kid who is about to be put under anesthesia, a hypoplast under anesthesia based on weight, drugs administered based on weight, etc . I think this could have been a disaster, so we finally found a new bigger scale and got 9 kilos, about 19 pounds 12 ounces. Now that's more like it. Plus he doesn't look like he was 15 pounds for months now.

After they were done we got to go see him finally . I was so excited about the good news we got from the cath doctor I left my new iPhone in the waiting room plugged in charging for a good 15 minutes before I realized it wasn't in my possession. It wasn't until a good dose of Tylenol and a nice long nap that we got our first half smiles and then the full blown Jasiu 1000 watt smile. He was also eating pretty decently considering he was intimated and sounds like he either is a 50 year old smoker with a caugh and a horse voice or he was out partying all night and lost his voice. He sounds miserable and sometimes the look he gives us just brakes my heart of the pain he must be feeling. It was the worst feeling of the day when they wheeled him to the back in the crib with complete strangers and he was crying and looking back at us with fear and confusion kind of like "mommy daddy help me" and we couldn't do anything. As he gets older and older I only think that it will keep getting harder and harder handing him over like that. I am dredding it already.

Now he's sleeping again and resting. Hopefully nothing changes overnight and we get to go home tomorrow as planned.

Thank you for the prayers and good thoughts and keep them coming.

Merry Christmas

I hope everyone had a wonderful Christmas full of joy and hope the Baby Jesus blesses each and every one of your families with health and happiness.

We were blessed to spend Christmas Eve and Christmas Day with our closest families for this very special holiday with both of our kids. They were so excited to open presents and loved all the gifts Santa brought them. One of the highlights of the day was Emily in church praying for her family and Jasiu at the manger and I think she is finally starting to understand the real meaning of Christmas, a little more year by year.  Jasiu slept through the entire Christmas mass (it was during his normal nap time) which was a blessing as well since he wasn't the cranky baby at church.  I just love this season and that I'm able to spend it with family.

Love, 
The Krol Family

 Best Chrismas presents under the tree

Our Christmas in a nutshell

Jasiu helping dad set up the tv

Opening presents

Christmas 2011

Big Sleep News

BIG,  HUGE news in our household today ! John slept for 10 + hours completely uninterrupted at 9 months and 3 weeks !!! This was the first time we did not dream feed him at midnight and 5 am since  birth because he had his usual 20 ounces plus 3 or 4 servings of baby food during the day and into the evening. 

Today we will see if he can take in the same amount of nutrition during the day and pull off the similar scenario so that we won't have to supplement at night. Maybe, just maybe mommy can get more than 5 hours of sleep at night :) Wouldn't that be something. 

Though Jasiu does not have the NG anymore and never had a G tube, I felt like he was on continuous feeds throughout the 24 hours because we pretty much fed him around the clock so that he could get the adequate amount of milk to sustain his growth, whether he was sleeping or not, so if he can keep this up this will be HUGE !!! I can't wait to see what happens. I will keep everyone updated. 

Also, still requesting prayers that we stay healthy during the Christmas celebrations and hoping you all do the same.  

Puke Monster

It has been well documented that Jasiu is a poor eater. Never had a good appetite and I'm beginning to think he may never have one.  Though I still pray that some day he will just want to eat and eat and eat... Since he was first introduced to milk, which was delayed because of his first surgery, he was not much of an eater. He was fine at sucking, because he could and still can suck the pacifier so hard we were joking you could pick him up by it... but never good with liquid, i.e. MILK and now with solids...


What has not been so well documented is that Jasiu is also a puker. Between his Norwood and the Glenn he threw up EVERY DAY sometimes multiple times a day. So we thought it was due to the NG, because the tube to his stomach kept his little sphinxter (sp?) open at all times but the NG came out and still puking. We think it may be due to the reflux, but he is taking medicine to control that. During interstage it was awful because every time he puked it meant that those calories he took in by mouth and than what we put down his NG were all wasted and it wasn't used to grow enough for the Glenn. It's still the same fear now. I remember feeding him and praying at that time that the food stays down or when Joe was feeding still hoping and praying that it stays while I was off doing something else or playing with Emily. For his first four months I have written down each time he puked, I have yet to go back and count, but  I already know the number is way too high. An average person wouldn't throw up that much in a life time a this baby has in his first year. It doesn't bother me because we have to change clothing multiple times daily, or wash sheets, floor etc, it's terrible because I have to see him do it and what he goes through. Poor Jasiu struggled to catch his breath, he would start turning colors and you can totally feel his stomach tying in knots when he was doing it.

Than after the NG tube went out, it subsided a lot to where he puked only once or twice a week at random times because since I was documenting what was happening around the clock I could not find a pattern as to what was causing him to do it. Then we forgot about the puke monster for a while because it became sporadic until Jasiu began to be mobile... The exhaustion and fast breathing combined with mobility and his weak stomach causes it to contract and on top of that his excellent gag reflexes cause my little guy to puke all the time. And now that he had a cold the puke monster is back !!! It first started when he was coughing and the gag reflex caused every meal, milk or solid to just projectile vomit out. Now that the cold is almost over the gag reflex is even more elevated and any new texture or taste causes him to puke. It is happening multiple times a day and poor guy I'm sure is exhausted. What good is 3 ounces of cereal with apples when it stays in the stomach for 10 minutes? ! Not to mention that it takes a lot of energy and effort to even get him to eat that 3 ounces over 15-20 minutes.

It does not look comfortable and on top of everything it's another area where he has to struggle. We even try to keep him occupied for half hour or so after eating so that he wouldn't crawl or laugh too much as to not cause any pressure on his stomach or esophagus and it helps a little but this kid is ACTIVE. He loves to move, twist, crawl, and most of all laugh, how do you forbid all this fun stuff... It's so hard on him I'm sure physically and emotionally but it's just one more thing we have to overcome on this lifelong journey.

Pray with me that the puke monster leaves this house for good and just leaves my happy baby once and for all !!!

Faith, Hope, Love

Faith makes all things possible,
Hope makes all things work,
Love makes all things beautiful.
May you have all the three for this Christmas

and throughout the New Year.

 I found the first three lines while thinking of/ searching the net for nice and thoughtful greetings for my English holiday cards (most of them are in Polish) and I could not have found a more perfect set of words. I'm not that great with poetry and writing in general, actually I'm surprised I've done so much writing on this blog since it was supposed to be purely factual to keep everyone informed about Jasiu and how he's doing, but it has really transformed to a place that seems almost therapeutic to vent, let out my thoughts, fears etc, all while creating an up to date baby book for Jasiu, not to mention cheaper than therapy (just joking here).

As the Christmas season fast approaches and with it the date for the next heart cath (December 27th) I can't help but to think about the fact that our life will always revolve around HLHS and Jasiu's special heart. I don't think it's a bad thing, but it's just our/my new normal, I try not to dwell on it but I find myself thinking about it all the time, instead of less and less even as he thrives and beats the odds every day. 

So those three words mean so much more to me now...

I have FAITH that God will help us through this and let Jasiu beat this disease ...

I HOPE that we have a long and happy life together ... and

I LOVE every day that we are given together.

May you and your families remember the true spirit of Christmas and enjoy this time with your families and thank God everyday for the miracle of life that he has given us.

*** Update on Jasiu ***

Also, keeping with the original purpose of the blog, I feel obligated to update on Jasiu in each entry.

As of today he is still not over the cold he had since Thanksgiving and that delayed his heart cath. The cold progressed from a terrible cough to a runny snotty nose.  Jasiu is a trooper and is pretty good with allowing us to remove the gunk from his nose with the electronic nasal aspirator. For those who are familiar with it, we actually filled two full vials of snot. Poor baby is so stuffed up yet manages to smile through it all.  Instead of fearing that he will cath a new bug before the next scheduled procedure, now I'm fearing that he still won't be over this one. The veteran heart moms weren't kidding when they said a normal cold that usually lasts 10 days for a regular kid lasts twice as long on these heart warriors. As if they didn't have it bad enough. He's coughing much less so he is also vomiting significantly less, which is good for his nutrition and growth, as everyone knows this kid is not a fan of eating, yet looks pretty chubby so calories are always on my mind as well.

I also think his top two teeth are trying to break through since he's been chewing on everything within reach except for food of course. His appetite for baby food slightly decreased and he has been crying at night for a few nights in a row, some Tylenol does the trick for a few hours. I haven't even though of giving it to him until the third almost sleepless night. (though Jasiu is my second baby, we never went though this since we never knew Emily was teething, they just popped up without any other symptoms).

He is also crawling everywhere now. Totally on the move to the point where we will be bringing down the baby gates. The video just shows him how quickly he can go from laying flat to grabbing whatever is all around him. I have yet to upload the crawling videos.

So we keep praying that he will get over this bug in the next two weeks and does not catch anything new during the Christmas celebrations. I hope that the cath will give us some answers because I can really see him struggle to even catch his breath when he's trying to crawl too quickly or even laugh too much and I hope it's nothing that serious because he has done so wonderfully developmentally.



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 !



Tree time, I think this is the best one yet!



Jasiu and Santa

Emily and Santa, ( I really had a bad spot for pictures)

Jasiu exploring



Beginning to stand up



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..

First Tooth !

Jasiu's first toot broke through on October 21st, just 4 days shy of his 8 month birthday.  I even tapped it with a tea spoon to make sure it was really out and clicking... It did and it was so cute. He never ceases to amaze me... I really didn't know he was teething or even thought about it because Emily didn't get her first two until 9 months and then for 6 months NOTHING... at 15 months they ALL started coming in almost at once.  So far no fevers, no grouchiness or any other symptom of teething that I know of. This is great news for us, maybe, just maybe we'll have one thing that will come easy for Jasiu. As our home nurse and friend said, Jasiu went through so much already teething should be a breeze !!!.  Let's hope so for Jasiu and mommy's sake. As any mom, I would hate to see him in pain and discomfort after all that he has already endured.

Now thinking in retrospect, all last week he refused/ was even more hesitant to take his bottle and just REFUSED to open his mouth for the spoon. This kid loved his baby food that I made him and just like that in one day shut his mouth closed and  no one, not me, not Joe, not either of the grandmas could get Jasiu to open it for the spoon feedings. It was kind of funny ... really... I would put him in his high chair and Jasiu would just smile with his mouth shut tight and laughing at me still with his mouth shut, I would try but nothing, I take him out and finally when I put him in the car seat does he laugh out loud with his mouth open. I think he needed to be far away from the kitchen to not feel threatened by the spoon. So we continued to try but didn't force.  The determination in him is just incredible and beyond me. I guess that's a good thing in his case, I just wish it wasn't for refusing to eat.

However yesterday and today he was already much more cooperative in the high chair . He ate some apples and tangerine concoction his grandma made him. He ate some mashed up banana and even a little rice cereal (made with water, he hates when I make it with breast milk and we have Johnny tight lips again) Today I bought him baby yogurt and offered him some. He LOVED it. I mean LOVED it, I have not seen this child open his mouth so quickly after he swallowed for more ever. It was amazing. Since it's the first time I gave it to him,I wanted to only give him a little, but he just kept opening his mouth and ate the whole 50 ml serving, that's almost 2 ounces! I almost had tears in my eyes that he was actively pursuing food but then I started thinking, that this kid will most definitely be a picky eater. Only time will tell...

For now we will look every day for more teeth and keep an eye out on Jasiu to make sure he is tolerating it well. You never know with these kiddos. He even gave ma scare this Friday where I had to dust off the pulse ox to just make sure he was fine. After his nap, his lips seemed to be completely purple, out of the ordinary for him, I changed his diaper and picked him up again and then they were very pale almost grayish like. So I got the pulse ox and held his foot down and it finally began registering and it was 87-90, it was actually beeping for high alert because it was still set at 75-85, as his docs wanted him to be in that range before his Glenn. I kept him still and occupied so that the pulse ox would get an accurate reading for longer than one minute (this kid also likes to move) and the numbers calmed my nerves a little, but all day I was just a tad bit nervous. These heart kiddos have a way to keep you on your toes more than the rest of them, though Emily is now starting to come up with some amazing stuff also to make me keep one eye on her and one on Jasiu.. ohh joy !

We did make it out to the pumpkin patch this week as well. That was fun for Emily more than Jasiu, but he got to see some sights as well and took a few nice pics and enjoyed the day as a family of four. We also got the kids passports applied for since we are hoping all will be well and (doctor approved) for Jasiu to take a trip to Poland next year to visit Joe's sister and his goddaughter on her First Holy Communion.  I couldn't believe how  big this baby already is. Almost 8 months !



Try telling a baby to hold his head straight...




Emily did great




At the pumpkin patch




One more of my  big guy :)



I Don’t know what to call it…

Today marks the one year anniversary of the day we found out about Jasiu and his special heart.  I feel like anniversary is not the right word because to me it has a connotation of a celebration and it’s not something I would think to celebrate. Remember, yes; celebrate never. It’s a day that will forever be in my memory as the day our world changed and our eyes really opened up to the harsh reality that so many people face.  I remember everything up to the moment we found out about Jasiu’s heart, it was a happy day that ended terribly. We were excited to find out whether Emily will have a baby brother or sister; she was also so excited, even made room in the bassinet she was laying in for her the new baby while we were getting ready to drop her off to grandpa’s, gosh we even stopped at a garage sale on the way to the ultrasound. We really didn’t even know how lucky we were up until this point. 

Within 20 minutes we were thrown into a whole new category of parents, we learned we will have to become “heart” parents and one of many many many families affected by CHD’s.  The two weeks that followed October 16, 2010 are all a blur. We had two separate cardiologists do an echocardiogram and the same diagnosis. We had an amniocentesis test done, numerous additional ultrasounds, genetic counseling, surgeon consultation, etc... During those two weeks like so many newly diagnosed parents, we were given very grim chances for our son. Most of the information we received was not very good and negative. They kept repeating that termination is an option and to really think about it. It was scary to think that I would bring this baby to term and he would have to suffer for the rest of his life.  Based on what we were told the future would be very difficult for us and our baby and the quality of his life is uncertain.

However, after the initial shock wore off  I learned from the internet of course, that the heart community is large and the network and support is out there all you have to do is reach out; turns out that Facebook is a great resource to reach out to others in the same situation and connect. The next 18 weeks of my pregnancy were very scary and full of questions of the unknown.  There were so many heart warriors struggling and so many angels earning their wings that I found it hard to see the positives.  However somehow I stumbled upon a group of women who set out to create hope with their little warriors as examples that there is SO much hope out there and the quality of life for these kids with HLHS doesn’t’ have to be a grim one.  I received a package from Sisters by Heart. A package from a complete stranger, I thought it was the weirdest thing, that someone who didn’t know me, barely just “met” me and learned of my situation could relate so much. It helped ! I began to finally read positive stories and see that there is hope and lots of it. I began to feel a little better and try to stay positive, nonetheless we were already changed and we didn’t share our son’s diagnosis with extended family members and friends until just before Jasiu was born. We sort of put on an act, when asked if we were going to have a boy or girl, we happily with pseudo smiles on our faces answered “a boy” but in my heart I was so scared for him, hopeful, but scared. It was hard to be happy when we knew what was waiting for him on the outside, hospitals, doctors, surgeries, constant medication. It all seemed so horrible for an innocent baby to have to go through this. It turns out that some people who really pay attention already knew something was not right. I had a long conversation about this a few weeks ago with an uncle and aunt of mine who revealed to me that they noticed we were not “ourselves” at a large Christmas party just a few weeks before Jasiu was born.  The closer we were to Jasiu’s arrival the more nervous we were. We continued to pray that maybe, just maybe the doctors were wrong and he would be born heart healthy. We hoped and prayed!

Now, fast forward one year and we have Jasiu, a bouncy and happy as a clam 7 and a half month old. What a year it has been. He has been through two surgeries, spent  only a month in the hospital, total, and has pretty much met all of the milestones a healthy 7 month old has.  Amazing ! With the grim news we were given that horrid day one year ago I wouldn’t believe you if you told me it would be like this though many people assured me that things will be “fine”.   It’s tough to accept, because they don’t know, no one knows it will be fine. I’m so grateful and thank God and pray each day that it will be “Fine” but no one really knows.

Yes it was a tough year and a tougher 7 months for Jasiu, but he is here, growing, smiling, playing with his big sister and giving us a reason to get up every day.  He is proving all those doctors wrong, the quality of life for HLHS can be a good one.  I can only hope that he will get a chance to grow up, thrive and be able to tell his own story one day.  Hope is so important in these cases because I don’t even want to think of the other options we were given.  Our only option now is to fight right along with Jasiu and help him along the way.  I will always remember this day and reflect upon but for now we have our own normal life, a new normal, but I love it.  I would want to say I wouldn’t want to change a thing since we are so happy, but there is only one obvious thing I would… But, under these circumstances we were given I really wouldn’t change a thing. I have two beautiful babies at home and that is what counts !

Here are some promised pictures from the Hope Children’s annual picnic. After looking at thiese pictures how can I feel anything else but lucky.



Family of Four !



He's getting so strong on his legs

my loves

Jasiu and Dr. Illbawi (our wonderful surgeon)

Three heart heros

Hope Picnic

What a wonderful day we had today at our first Hope Children's Annual Picnic at Brookfield Zoo. It was perfect weather, the kids were happy, we left on time.... and I left my camera at home :-(  I was so sad, it was our very first Heart picnic and a first family outing in a pretty long time but after a while it was a little liberating to not be constantly running around taking pictures, rather I saved the 24 pictures I was allotted on the disposable camera I had to purchase for pretty special photos.  I hope they turned out as I have to wait at least 24 hours so that we can get them developed tomorrow. Really, I don't know how we did it 10 years ago when we had to wait for photos to be developed before we got to enjoy them. But just as photo technology has changed for the better, so did medical technology. And that is why we were at the zoo in the first place...

It was a day of celebration. Personally I celebrated our small and big achievements with Jasiu this year, well 7 months and one week to be exact. Today we got to meet so many amazing families with amazing kids just like Jasiu who are all such strong warriors words don't do them justice. Its hard not to get emotional, but I finally got to see the children behind the numerous blogs and caring bridge pages I read about every week. They are all doing so well, you would not be able to tell that any of these kids is sick, yet alone gone through multiple open heart surgeries. Today, there were just having fun and enjoying the day, sun and friends. Most of the kids in our circle of heart friends are still quite young so the kids didn't get much out of it as the parents did, but it was almost therapeutic to see families that know EXACTLY what you went though and are experiencing and feeling and to see each and every one of those kids thriving and sharing our stories and words of advice, etc.

Jasiu was his usual happy self and showed off his killer smile all over. Emily was also a great big sister and was pretty well behaved, such a big girl she is already. We got to see so many of the wonderful staff from Hope that we would have loved to thank each and every one of them personally, but there were so many people and just not enough time.  We did however stay in a quite a large crowd, because we can hardly call it a line, to see our beloved Dr. Illbawi. Every time I see him, I get goosebumps, this man and his team of surgeons literally held our son's heart in his hands. He did his magic, two such precise procedures, his hands guided by our wonderful God to do such miracle work. It is just amazing to think about and something I still have a hard time grasping. It's so overwhelming to think that these babies, kids and young adults are all here because of this very man. He has such charisma even if you didn't know him he would probably smile at you walking down the street.  He got to hold Jasiu for a picture (on my disposable camera so I hope it comes out). I did get a small video which is not the best quality, but it will be cherished forever.  I can't even describe our gratitude and though it's his job, taking the time out to see these kids, meet the parents and just see us for a few minutes at at a time is just so good of him. He won't remember all of our names, but we so remember him and pray for him to keep doing what he is doing. It's just so wonderful, wonderful wonderful !!!!

There is one thing that really struck me today and it was before we even entered the zoo. A woman also on her way to the heart picnic noticed I had my tickets in my hand and asked if were also going to the picnic. I smiled and said yes as she was holding the same envelope. Than she asked me something that wouldn't seem like anything significant, except to probably another heart mom. She asked "Which one, which one of your kids [both sitting in our double stroller] had the heart surgery". It was so amazing that our Jasiu looks so good to the naked eye he doesn't look like there is anything remotely wrong with him. It meant so much to hear that I can't even describe it, I'm literally tearing up while I even type this. We are truly blessed that Jasiu even with half of his little heart can be doing so well. Truly just amazing and I don't think I will ever be able to grasp it.



Now since I did not have my camera and our camera phones are so outdated, I only snapped these up on the marry-go-around.  Emily is a pro at these and it was her idea to go, but it was Jasiu's first ride and boy did he hang on to that bar for dear life. The look on his face was priceless as the animal he was sitting on started moving. Just too funny.  So here they are, not great quality but visible. When we finally get out other prints from Jewel ( and they are half way decent) I will share.



Almost holding on all  by himself




The marry-go-around PRO :-)





Jasiu and Dr. Illbawi