Saturday, October 22, 2011

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 :)

Sunday, October 16, 2011

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

Sunday, October 9, 2011

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

Saturday, October 8, 2011

Welcome to Holland...

Another mom found this and posted it.  It sums our new normal perfectly... try to imagine... though HLHS is not a visible disability, it has it's challenges and rewards and I am no different, This is almost exactly how I feel at the moment.

Welcome to Holland ~by Emily Perk Kingsley

How do you describe the experience of raising a child with a disability-to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo, David. The gondolas of Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""HOLLAND?!?!" you say. "What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay.The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place... After you've been there for a while and you catch your breath, you look around...and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandt's. But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever go away...because the loss of that dream is a very, very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, very lovely things....about Holland.

Amsterdam International

Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything---you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.

You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . . but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.

(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this goddamned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)

A flash of realization---your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.

(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all.

And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits to close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)

You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how (s)he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing.

(Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up---you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious---how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?)

And what you keep thinking but can’t bring yourself to say aloud is that you would give anything to go back in time a few months. You wish you never bought the tickets. It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.”  But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.

Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”

Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.

But you will leave the airport. You will.

And as you learn more about Holland, and see how much it has to offer, you will grow to love it.

And it will change who you are, for the better.

© Dana Nieder 10/2010 All Rights Reserved

Please feel free to forward this, blog about it, post it places, etc.  My intent in writing it was to reach families in the early stages of processing having a child with special needs and to let them know that they are not alone.   If you do blog about it, post it on a website, forward it, etc, please link back to this blog (or cite my name, Dana Nieder) and include my email address ( so that I could be contacted if anyone wants to reach out.