Wednesday, December 28, 2011

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.

Tuesday, December 27, 2011

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.

Sunday, December 25, 2011

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.

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

Tuesday, December 20, 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.  

Friday, December 16, 2011

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 !!!

Tuesday, December 13, 2011

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.

Wednesday, December 7, 2011

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