So Blessed yet still So Unfair

I have to start out like this... we are so blessed to be where we are and couldn't be more happy with Jasiu's progress. This weekend especially I felt just incredibly blessed how happy, spunky and ALIVE our little warrior really is. We had a weekend full of parties, two big 1st communion parties (one Saturday and one Sunday) and a 90th birthday celebration of my mom's uncle, we all call him Grandpa (he is the one who said the blessing  before our wedding 7 years ago).  Jasiu did wonderfully, took a nap before the Saturday party and was completely ready to go - smiley from ear to ear. When we got there and he saw the hall and the band playing, his eyes just lit up he was so excited and curious the amazement in his eyes was breathtaking. He is just so aware of the world around him. We managed to get through dinner fairly well and than the "dancing" started. He just tore up the dance floor - all by himself he went and danced and danced and danced, waiving his arms, and "dancing" in circles, sometimes bouncing his knees. Everyone was so amazed with his energy and how he wasn't afraid of the adults (probably giants in Jasiu's eyes) dancing all around him... ohh no he wouldn't dance on the sidelines, he needed to be on the middle of the dance floor.  See some videos below of just what I mean. Personally I think he gets his moves from his daddy :) When he wasn't dancing he was running after the other kids back and forth in the hallway. And most of the party he was in motion.

However, all that said, it is still so unfair, it's unfair that this child despite his biggest determination gets tired and winded so quickly. One song and I noticed he was out of breath, he kept wanting to run and was falling probably from tiring out. I would dance with him in my arms and he wanted to be put down. It breaks my hart that I had to pick him up and keep him from something that he wanted to do that most kids his own age can do for hours.. run around like crazy toddlers that is. .. without having any limitations.  One song and I noticed that he was so winded he was coughing uncontrollably.. we rested for a bit, against Jasiu's own will and again barely one song and same thing... I felt so bad that I didn't pick him up sooner to take a break that when he finally calmed down he began caughing again to the point he threw up (in the hallway, thank goodness and not on the dance floor).. but still it's so unfair that things he loves doing have to be halted and affect him negatively because of his heart and we can't do anything about it.  Despite all this after I cleaned him up, what did he want to do?... put on a happy goofy grin and keep going, but I called it quits and we headed home (mostly because we were both puke Stinky :(  ) I know life in general is not fair and I really shouldn't complain but for Jasiu it just isn't fair and I already think about the day I will have to explain it to him. Now seeing him like this makes me think that he will want to do all the things he may have restrictions on and then we'll have to cross that bridge when we get there. Just Unfair because from the outside he looks so "healthy" sometimes people don't even realize why I do what I do for Jasiu's own good.

Today again, we had the two parties and he was all smiles, giggles and dancing and though you can't tell from just looking at him, I know this kiddo is struggling. But God gave him such will power, energy and determination  that I hope he can soon learn his limits and Jasiu won't be mad at mommy for stopping his fun occasionally so that he can catch his breath.

Now for some videos of the fun we had this weekend. ( I have to end on a happy note.. after all we have so much to be thankful for and so many blessings.

Cardiology Update

We had a cardio appointment today, the first one in 4 months ! In pure Jasiu style, the night before he was running too fast and tripped in Emily's room before bedtime and met her Barbie doll house face first and landed a pretty decent scratch on his chin. Nice ! My heart baby is one of the most rugged kids I know, this kid has more bumps and "accidents" than his sister and we were supposed to keep this one on a closer watch... but it's not working, he's just too fast (we were both two feet away from him and still), I digress...






We had our normal 8 am appointment as I like them (first appointment of the day = no waiting). We barely walked into the reception/waiting area and Jasiu's bottom lip started quivering and tears were rolling :(  He calmed down a little while they got our room ready and then we were called back and it started from 8:10 to 9:15 Jasiu was crying hysterically. All through his weight/height check, pulse ox, respiratory and blood pressure. He cried so much that hour that now his voice sounds so hoarse as if he was screaming all night. We saw the nurse practicioner for a while and it was as if his light switch was just turned off, he liked her (finally omeone he liked there!) more specifically he liked her badge, pager and every other thingy that he was interested in, but he wasn't crying, he was showing off his walking skills and how friendly he is, he even danced wiht our Elmo. She got our history since our last appointment and informed us that we won't even talk the F word until 6-9 months from now and that was it. Next the therapists came but we were already on the list for echo so we couldn't get out of line to do therapy stuff so we only saw them for a minute and then the echo tech was ready for us.  Rick, as always was so calm, gentle and likeable that Jasiu liked him too, well... until he saw the echo wand... then he got a little angry, uncofortable and just uncooperative. So we tried our old fashioned way (mommy holding Jasiu in her arms the entire time). Well it worked, he was calmer on  my arms, took his bottle  and began drifting off. My master plan still worked. 1) schedule first appointment 2) tire him out during vitals and all other items 3) hope that he falls asleep during echo. The remaining 30 minutes of the echo were great and Rick took great and accurate pictures.

Passed out during his Echo (pic taken after it was all done)

The next part I wasn't expecting, Dr. H came in to discuss the results of the echo. Instead of the "everything looks great see you in 4-6 months"  we got " we have to try adujusting his Enalapril because his heart muscle is thickening most likely because he still has high blood pressure and his heart is working too hard" Basically he explained it his heart muscle is thickening same as any other muscle would if you were lifting weights heaveier than you should and your arm muscles grow, however in the case of the heart we don't want that, we don't want his heart larger than it should be.  He didn't say this is extremely bad and it's a similar situation we were in when we were originally put on Enalapril his heart went back to normal after we checked him two and then four months later after the medicine began doing it's job controlling the blood pressure. But instead of outgrowing his dose and weaning off, we must increase his dose because his current is now too little for his body weight. So we will go to 0.6ml 2xD (twice daily) for two weeks and then to his required 0.75 ml 2xD and recheck him in two months. So we will have cardio again in 2 months  and another echo :(  It's not completely horrible news since a lot of kids with HLHS are on BP meds and it's something we can control but it's not what I was expecting.

Other than that, heart function looks good, his Glenn looks excellent and the regurgitation (flow from lower chaimber to upper caimber is somewhere between mild and medium but the doctor thinks that this may go back to mild once we get BP and heart muscle under control.  

So all in all we didn't get terrible news, just a little maintenance changes. Though Jasiu behaved better than expected mamma still needed a full glass of wine this evening to relieve some stress that built up all day today.





The stroller is his safe zone, and that is the hospital TV remote





Little Climber and Pre-K

Jasiu barely started walking at 12 months and now two months later he is running, not only is he running, he is climbing, riding and getting into lots of trouble.  It is so good that his heart and all that he has been through has not affected him as much as we were afraid it would. He truly is right where he should be developmentally and cognitively.  He knows that he has to go down the stairs on his belly and knees and sometimes starts off in the middle of the kitchen and ends up scooting back all the way under the table instead of the stairs which makes him pretty mad because he didn't get to where he wanted, so he goes forward again and looks behind him and scoots down the stairs. We still walk behind him, just in case that he would forget and turn around or stand up on the stair and possibly get hurt but this doesn't happen often at all. He also figured out how to move forward on his ride on toys and now loves them.  He can put blocks together and says "bye bye" and waves his hands when I go to work or anyone leaves. He also gives kisses to Mommy and daddy and grandparents and blows kisses to us and everyone else. (We try not to get in too close contact with non family members) Just this week he learned that he can use other objects to get to what he wants, ie. he will use his play golf clubs to get toys he can't reach on the couch, he will bring his sister's little chairs and place them next to the couch so that he can get on it. Yesterday as I was fixing dinner I found him with that same chair next to the coffee table and I'm sure his ultimate goal was to get on top of it. Joe was holding the chair and "supervising" while I just had to get picture of this. We have  baby proofed a lot of cabinets now and have a blockade around the TV. He has already tried to fit his little foot between the slits to see if he can get higher and used the same plastic golf clubs to see if he can "touch" the TV. I tell you he is a handful, a typical boy and though it's tough always having one eye on him, I wouldn't have it any other way.



Ohh ohh mom caught me :0

 



We have a climber









He is an awesome eater now and we are so thankful. I don't even mind having to distract him to eat because he is eating and that is what matters. He could have just finished his meal and Joe or I get home from work and he has to have some of what we are eating. Also he still likes his bottles, though they haven't gotten any larger he takes them on my lap while cuddling. I.LOVE. IT.  I like to think he's making up for the lost time when he was fed through the NG and we never got to feed him in our arms for the first 5 months because feedings were so difficult.



I really hope that Jasiu continues to be as smart as his big sister. Emily is going to start her first year in English school this fall. She will  be in Pre Kindergarten for 4 year olds and she will not even turn 4 by the first day of school since her birthday is August 30th and school now starts middle of August, but she still meets the age requirement of 4 by September 1. She will be the youngest in her class and she has not attended the PK-3 because of Jasiu and us wanting to prevent her from bringing germs and sickies home. She knows all her colors, numbers and singing the alphabet with recognizing a lot of letters in Polish AND English. She also started speaking English over the last four months. We really didn't have much of an approach to teaching her English, just turned on Nick Jr. and let it go from there. We now also translate to her most of what we say so that she is better prepared for school. Speaking to me and Joe and grandparents in Polish is still a requirement because we don't want her to forget Polish. She barely started English and is already choosing it over Polish, but I think it's because is something new that she likes. She is like a sponge and can already carry on a decent conversation in English (after only 4 months !!!) Just amazing to me. When I came here from Poland when I was 9 years old and didn't speak a word of English, it took me a full year of school to learn and another full year to be fluent. It was quite emotional to sign her up to school but she is so excited. She got to meet her teacher and see the classroom the day we went. She is pretty social, not shy at all and loves doing project so i think she will do just fine. She will go 3 days a week for 3 hours. I'm sure the only adjustment we will have to make is an earlier bed time.  Since her time flew by so quickly I'm sure Jasiu's is just around the corner.

These two love each other so much and I had so much fun spending all day today with them just playing, nothing else...

These two are the best

She loves to dance

Climbing down

Superstar

More attempts at climbing

Mission : Demolition Barbie house





Details for Walk - June 3, 2012

Today I had a busy day figuring out how to register, register myself and Joe and Emily for the "Kids Dash", set up Team Jasiu and the fundraising web page, e-mails to co-workers for donations and Facebook messages for getting the information out about all the details... It's a lot of work trying to get this thing organized.. but I'm sure it will pay off and it's already proving to be so rewarding. Next year I'm starting sooner!

So here it is -

*** Sunday June 3, 2012  *** 8 am ***

*** Keeler Park 93rd and Keeler Ave *** Oak Lawn, IL ***

If you are interested in joining us for the walk (our team will be walking considering we will have a double stroller with us) you must register on active.com. Click here for the registration website.

Step 1 - Set up your e-mail address and password for active.com

Step 2 - Accept Waiver Choose   "Team Members - Register for your team" then choose  "Team Walkers - Register for your team" then agree to the waiver and type in your name to sign electronically.

Step 3 - Complete Form - you can register yourself and fill in all the information and then once you are done you can choose the option to register someone else (spouse or friend) and then you will only have to pay the various registration fees once per person. ($20 for each walker which includes T-shirt) In this step you must choose TEAM JASIU to indicate you will be joining our team, no password leave this section blank.

Step 4 - Payment (self explanatory) Note a convenience fee will apply.

Step 5 - Print your receipt (it will also be e-mailed to you). 

You will also be able to set up a fundraising website if you choose to raise funds on your own from neighbours or co-workers or you can use my link below if you don't want to bother with that.  

Kids Dash !

If you are interested in also entering your kids in the Kids Dash which will be following the 5K run/walk at around 9:30 you can do so also by following step 2-4 but instead of choosing "team members - Register for your team" Choose "Individual Registration" and then choose Kids Dash $10 (kids will get a t-shirt and a medal). You can register the kids at the same time you are registering yourself once you go through your steps 2-3 and you must sign for your kids. If Kids are in strollers they do not have to be registered for either event.

Donations !

If you can not join us for the walk and still wish to contribute you may do so by helping us raise funds for the cause.  The website to donate can be found by clicking here. From this page you can click on "Home" in the top navigation bar and it will take you to the official website for the Run/Walk and you can get more information.

Running For Hope ~ From the Main Donations website~

In 2011, over 1,400 community members, corporate partners, patients and families attended this event and raised over $80,000. We are excited to announce that the 5th annual 5k event will be held June 3, 2012. This year’s event will once again benefit The Ronald McDonald House® near Hope and Advocate Hope Children’s Hospital. We hope you will join us this year in helping to raise $100,000. Advocate Hope Children’s Hospital is the largest freestanding pediatric medical facility in the south and southwest suburbs of Chicago. The hospital offers a Level 111c neonatal intensive care unit, one of the largest pediatric cardiology programs in Illinois, and an internationally recognized pediatric hematology and oncology division. The 69-bed institution has expanded its services to families by partnering with Ronald McDonald House Charities of Chicago & Northwest Indiana (RMHC-CNI).   The Ronald McDonald House® near Advocate Hope Children’s Hospital provides a “home away from home” for families of children receiving treatment at Hope Hospital. This 16 bedroom House offers comfortable rooms where families can get a good night’s rest knowing their child is close by. The money raised from this event helps with the operational costs of the House. Thank you all for your interest and help in any way you can. It means so much to us. Let's help reach the oveall goal for Advocate Hope Children's and Ronald McDonald House.

Running for Hope 5k Run/Fun Walk

I decided to sign up Team Jasiu for the Running for Hope 5K Run/Walk.

Sunday, June 3, 2012 @ 8:00 AM

Keeler Park, 93rd St. & Keeler in Oak Lawn

I know it's kind of late ( a little over a month's notice) but I always say better late than ever and usually now with 2 kids in tow, we are late a lot :(  To my defense, I just found out about this event this Saturday and decided that Team Jasiu is on.

The donation proceeds that are raised will be used for Advocate Hope Children's hospital and the Ronald McDonald's house right next door to the hospital. You can read more about the walk on the official website description here. 

We love Hope Hospital, we are lucky to be so close to an excellent hospital with such a wonderful heart center that I feel like we have to give back in any way we can since it has been such a major part of our lives this past year.

Jasiu, Emily, Joe, my two sisters and me are Team Jasiu (so far) !

I hope to raise awareness about this event in hope to recruit runners or walkers (we will be walking) to join our team. I am in the process of creating the team website where each person will be able to register. I will post it here and on my Facebook page as well. If you can not join us for the walk any donations are truly appreciated. I think our first year we won't set an official monetary goal but see what Team Jasiu  can do. I know we have a lot of fans and supporters so we can't wait to see how much we can raise.

Stay tuned for more information.  Let the training begin...





Easter 2012

I'm happy to report that Easter 2012 was a success and we were back to our old routine and the kids loved it.

Last year during Easter Jasiu was "interstage" (time between  the first two surgeries which often is the most fragile time for a child with HLHS). Since we wanted to spend the Holiday as a family of four together and didn't want to leave either parent at home with Jasiu our family was nice enough to bring the Easter celebrations to our house. It was different, but still spent with the people we love the most.

I keep saying it over and over, but truly, what a difference a year makes !

This year we almost spent Easter at home again but for a different reason. On Tuesday night Jasiu was awfully cranky and totally not himself. On Wednesday early morning (3am) when he woke up to eat, I noticed he was really warm. I fed him gave him some time to cool off and took his temp. It was 99.5ish. Since technically this isn't a fever, and he went back to sleep no problem, I didn't give him anything until the morning to see if  it was just temporary. At 7 am his temp was 101.4 (officially a fever). During the day grandma was monitoring the temp and medicating with Tylenol but the lowest it went was 100. I called the doctor's office to let them know and to find out the right dosage of the Tylenol because the last time we were using it was when Jasiu weighed a lot less. (We were lucky he wasn't sick with a fever and haven't used Tylenol since the Glenn) I also made an appointment for the following day just in case things got worse, and worse they got! Thursday on top of the Tylenol we administered Motrin because the Tylenol was just not working. The combination of the drugs worked during the day but as they wore off the fever came back and when I took Jasiu to the doctor on Thursday after work it was 6 hours since his last medicine dosage and his fever hit 103.  It turned out that ears were clear, he had no runny nose or cough, it was just his throat, some sort of virus and we just had to keep an eye out on it just in case it got worse or other symptoms occurred.  But by Friday night he was back to himself and even his appetite increased. On Saturday he already had breakfast and bottles as usual, no fever and mood was completely back to normal.  However today (Tuesday) Jasiu's nose started running, so I think he wasn't completely over that virus, or it spread to his sinuses and Emily is now snotty as well :( ohh such is the life with toddlers.

So we took Jasiu with us to bless our Easter baskets and dressed him up in the Polish Highlander traditional outfits. Emily and Jasiu looked so cute.  On Sunday, we passed on the early morning Resurrection mass at 5:30 am since we didn't want cranky children for the remainder of the day and just attended a regular Sunday mass at 7:30 am, breakfast and brunch at the Klimek residence and then dinner at the Hyc residence with the Krol side of the family.  Emily and Jasiu got to spend time with cousins on both sides and they had a blast.

Before going to bless our Easter baskets



After blessing  at Grandparent's house




Easter day after brunch - Kids playing (story time with uncle Damian)


We are so blessed to  be able to spend another holiday as a family and outside of the hospital and with Jasiu doing so well. As I thought about the events of the Holy Week and how Jesus' mother had to witness her son's death so that we all could be saved, I couldn't help but to pray the same prayer that thousands of mothers pray each and every day "God, thank you for this day and please spare my son's life so that we may have another day. Amen."

I hope everyone had a wonderful Easter as well.

Walking Walking Everywhere

This will be really short ( I forgot to include in yesterday's post.. how could I forget !)...

Jasiu is walking !!!

He started right on his birthday and in the month since his birthday party he has been getting better and better with now being able to stand up from anywhere and not just by hanging on to furniture. He does stand up and fall on his bottom when he is quite tired at the end of the night but that doesn't stop him. He is also choosing to walk most places rather than crawl, so even he knows he's getting better and faster.. look out we will have a runner in about a month. Scary for mommy to even think about. 

 Here are a couple of videos of our little guy taking his confident steps.

The other video is of my two wonderful kiddos playing in their play room, don't mind me and asking Emily questions (you can tell her English is picking up really well).  My two silly monkeys.

(Note, I only speak to my kids in Polish so for my English only readers, sorry :(  )

Lucky to be where we are...

Today I read an article in a Polish newspaper of a little girl with HLHS and I realized how lucky we are to be in the United States during Jasiu's battle with HLHS. For one, her mom did not get a prenatal diagnosis (though this still happens in the US it's much more prevalent in Poland), second her mom had to literally BEG the doctors to go the 3 stage surgery way and was even told bluntly 'Why, she won't make it anyways', and third she is now 18 months old (post 2 surgeries) and though she's doing well they still are seeking funds/approval for a pulseoximeter machine. I can't imagine how that woman survived the interstage without a pulse ox. Though I had to learn how to "read" John on my own I can't imagine going through that without a pulse ox. Just before Jasiu's first birthday I got a letter from our insurance company that the pulse ox we were renting is now ours since the insurance paid enough rental fees to own it, so we are proud owners of a Masimo hospital grade pulse ox. It is bulky but it is also accurate and it gives me a piece of mind. In the first year I have used it religiously, we still sporadically use it but that's not the point.

We are also lucky to be at this stage in the battle because frankly I'm not sure how much more my mom, mother in law, husband and I could handle with the feeding difficulties Jasiu had. Jasiu is now an avid eater ! He LOVES food and still likes his milk. He's fascinated when he watches food cooking/ water boiling on the stove (safely from his high chair mostly) and also by the microwave. He prefers home cooking like made soup and lately since we had amazing weather e already tired food prepared off of the grill and loves that too, he even tried some finely finely mashed up steak  and chicken. He still eats his oatmeal and baby foods (vegetables and fruits) I prepare in the steamer/blender. It really puts tears in my eyes just thinking about it. He is also doing wonderfully with feeding himself.. he enjoys ladyfingers wafers, chewable chips, yogurt melts, etc... We also found a sippy cup that he Loves. We literally have almost every sippy cup/straw cup (spill proof) on the market. it's a sippy cup with a soft flip straw and I love it because it's spill proof. We have had some interesting cups and he either doesn't  have enough strength to suck it through the spill proof valve, the straw is too soft or too hard or it spills because it;s too soft.. ohh it was a battle itself to search for one he likes. It was also by accident that we found it for him, the particular cup he loves was bought for Emily (it's Kai Lin one pink and one darker blue/purple) and Jasiu loves the PINK one :) ohh well at least he is drinking on his own.



Yummy

We are also lucky to be in an area where we have so much support and not just from the on line community but from the hospital and others who live relatively close to where we live. Since we are where we are on this journey I feel like I can finally help others and give support and hope for the future. I had the pleasure of meeting little Kubus and his family last weekend. He has HLHS like Jasiu and is also having feeding difficulties. I would like our support group and payer warriors to say an extra prayer for Kubus that he starts eating by mouth soon because his mommy and daddy can really use the break. He didn't have such an easy recovery from the Glenn and an infection brought all of his eating progress back to zero, but I have full faith and pray for him and progress. Go Kubus Go !!!
We are also enjoying life which is as normal as I never thought I would have even been able to imagine. We have a beautiful spring (in March in Chicago) and are enjoying ever last minute of it. Here are a few pics of the kids enjoying the weather and the outdoors.

Bottle Breakthrough...

I just had to update on this remarkable breakthrough... yesterday Jasiu longed for his bottle and almost took it all (5 ounces) before bath time. We usually wait until he is bathed and in his jammies and then eat and sleep... yesterday (even though he ate almost an hour prior to this happening) he grabbed the bottle from my hands while we were walking up the stairs to get ready and went at it.  I was soooo surprised, I just let him have it and held him while he drank with almost tears in my eyes. Then after the bath he finished the rest, also distraction free.

For a kid who had to have CONSTANT distraction and a tremendous effort on our part in order to get him to eat, this is HUGE and I am so proud of him. It took over a year for him to WANT his bottles, good things are always worth waiting for and he just did it when he was ready I guess. It may also have something to do with phasing out the formula and phasing in whole milk. We are now at 1 oz formula to 3 oz whole milk and he may just prefer milk over formula and I don't blame him. 

For table foods, he has some favorites that he will always go for without a struggle and some of the stuff he needs to eat needs some distractions but he will eat them. The iPhone apps and cartoons are still our go to distraction and I will take what works.

We also had our 12 month appointment a 2 weeks ago and he is doing great health wise. The pediatrician is happy with his progress. He took his vaccines like  champ and we were given the green light for whole milk.

We also had our last Synagis shot last week which means that flu and cold season is nearing the end. This means that hopefully I can relax a little more about the caughs and sniffles going around, though I hardly doubt it, I will want to protect him forever as much as I can. The weather is getting much nicer in Chicago as well so I envision us going on afternoon/ evening walks soon. It will be nice to get out and show Jasiu the outside world.

Next Cardio appointment in May, please pray that his heart function is still good, that the leaky valve is still mild and that we don't have any surprises. Until then.. we take it one day at a time! Thanks for your continued support and payers.  

Norwoodversary

One year ago on March 1, we handed our son over for his very first open heart surgery.

It was the hardest and most difficult day of our lives and we knew that this was going to be the first of at least three dreaded times we would have to do this. We walked with him as he was rolled over to the operating room, kissed him goodbye and left him with the surgeons to have him be put to sleep, on a ventilator, body cooled, heart stopped, put on bypass and have his heart (the size of a walnut) and cardiovascular system reconfigured so that he could have a chance at life.  We waited and waited for what seemed like an eternity for updates praying, deeply praying as we saw people enter and exit the waiting room for the next 8 hours. By the time we left the waiting room, we were the last ones there. Both Joe and I felt like we were the only people in the world and just so damn lonely and scared just waiting for an update.  For full details on this date click here.



One Year ago - Fighting Hard



For the past couple of weeks as we were preparing for Jasiu’s first birthday and party, I was an emotional wreck because we were celebrating such a milestone and this “anniversary”.  I was completely overjoyed that we made it this far, extremely sad that Jasiu has had to go through so much. Faithful and hopeful that things are turning around for us and that our food and eating issues are behind us. I was also mentally exhausted just thinking how hard it was for both Jasiu and us as a family. The toll it took on Emily and so on and so forth.  Thankfully our biggest struggle post surgery was feeding. Jasiu was on the NG for 5 months, just refusing to take the bottle. I kept thinking to myself  how sad and terrible it is that we have to struggle so much to get him to eat. At times I was even angry, how can he not be hungry or interested in food… “normal” kids eat, why couldn’t he just eat. Than I would feel ashamed of myself, how could I think such things, we should be happy he’s alive, but when you are in the middle of a battlefield it’s hard to think positive, all you see is the struggles and pain that you and this little baby are enduring.  The one reassuring thing is knowing that he will not remember any of this. I think it’s enough that one of us has to and I will take it any day.

Thankfully the tough times passed for us for now and now we are enjoying a somewhat normal life. Jasiu is eating much better, gaining weight well (though I continue to stress about it) and is just the most happiest baby ever.

He has come such a long way from that 4 day old infant hooked up to so many tubes and wires, chest opened and eyes swollen shut. That image will forever be engrained in my mind and now as he is getting older and getting into trouble, I remind myself every day that this is our walking miracle, defying a lot of odds stacked up against him.  He is currently kicking some HLHS butt and we can only pray that he continues to do so.  

Part of the purpose of this blog is to show hope to parents who may be in the same exact shoes I was last year because when I was there, that’s where I drew my strength. I saw so many kids with their “then” and “now” photos on their blogs or Facebook pages and I prayed so hard that that would be us some day because I couldn’t bear to think about the alternative.  So if you are an expectant HLHS parent please know that there is a lot of HOPE for these children. Medicine is moving forward and these children are stronger than any of us combined. They fight each day for their life first in the hospital and then in real life, even if it doesn’t even seem like it.  No one can tell just by looking at him that he is sick, that he is fighting this battle, this is the curse and blessing in one.  

Jasiu is our warrior and March 1

was the day he won his first battle.