Praying at the Manger - (I would like to think they are praying for good health)
We had a wonderful Christmas shared with our closest families that spanned over about three days. We start out on Christmas Eve with a traditional "Wigilia", open presents, go to midnight mass OK, now with kids it's 8pm mass. Christmas Day we go to mass once more and we usually dress up in our traditional outfits and celebrate with a big dinner once again. December 26th, though most have to go to work, I took vacation and celebrated the birth of Jesus once more in church for a mass with just my kids since dad had to work, the remaining of the day we spent putting all toys together and playing with ALL the stuff the kids got for Christmas.
It was ALL great!
So far the best present was that the kids is our health. So far we are all healthy and not any visible signs of colds just yet.. shhhh and knock on wood.
I hope you all had just as much fun as we did and that you got to spend your holidays with the ones that mean the most to you and really experience the real meaning of Christmas, the birth of our Savior Jesus Christ.
Wouldn't it be nice to have a day off where I can just spend the day with the kids, do the usual errands, etc... nope, not around here. John likes to keep us on our toes and this time came down with pink eye, yep, pink eye.
Gross, pussy, pink and swollen eyes. Our kid just needs a break. I know in the grand scheme of things this is nothing, but it's always something. So off to the pediatrician we went today because if it got worse over the weekend there would be no one to see him on Saturday or Sunday besides the ER, and boy do we NOT want to go there! So a quick call to the ped at 9:30 and we are in at 12 pm right after Emily's preschool. I also asked to do a full check because of the swollen eyes made me think if he wasn't gathering fluid so she felt the liver and funny how she just knew what I was afraid of (every heart parent knows my biggest fear) She said that it's not the same type of swelling if he was to retain fluid and be in heart failure, but better to be safe than sorry and I'm glad our pediatrician is on board. While we were at it, we checked the ears and it turns out that last month's ear infection wasn't quite completely gone and there is some fluid still in the right ear so we were given a different antibiotic instead of just drops for the eyes. Hopefully this medicine tastes good just like his Enalapril.
Also, we scheduled the next heart catheterizing for January 11, 2013, because what a way to start the New Year than with a hospital visit... that's just how we roll. I already spoke to the nurses who scheduled it and said that it most likely will be OK to give him a dose of Versed before they start doing ANYTHING to him to make him a little loopy and hopefully a lot more calm and relaxed... than the nurse asked me if I will need some as well... HA! I wish !
This past Friday we had a cardiology check up and it was not as bad as it was last time but I think we are still about 2 years away from cooperative Jasiu at cardiology. So until then, daddy is coming along for the ride. So again Jasiu was not a fan of even the receptionist as we walked in, but we distracted him with some toys and books in the waiting room (this bought us 10 minutes), however since we had an appointment first thing in the morning, as nurses were walking in andsmiled at him saying to each other "ohh look how cute he is" he lost it again. Then when the door opened again for our nurse to take us back and Jasiu lost his marbles... again...
Weight - a whopping 27 pounds
Height - ??? I didn't even get to write it down
Blood pressure - decent
Heart rate - 150 (not his normal but he was screaming for a good 20 min by this point)
Pulse Ox - 79-82%, but again he was screaming so that's not necessarily right.
Echo time was awful tolerable. The poor kiddo cried and cried and we tried everything imaginable - bubbles, lolly pops, cell phone, tablet, books, peek-a-boo, TV, no TV, in my arms and on the exam table, etc. I felt so bad for him, the look I was getting seemed as if he though we were betraying him by holding him down hostage while the tech was doing he scan. Well.. we got a few periods of decent calmness and the tech was VERY patient and was able to get what he needed for the doctor. By the end of the echo Jasiu was so tired that he was almost falling asleep (what we were praying for this whole time) and as he was dozing off, he could see the tech from the corner of his eye and began sobbing uncontrollably... again. My poor baby was so scared and there was nothing we could do.
After the echo was read, Dr. H came in to do his exam and discus the next steps. -
The echo looked "good", doctor's words. Although the heart muscle is still a little bit thickened, the doctor said that the function is great and is pumping really well. He said the Enalapril is doing what it should be and we are staying on the 1ml twice a day as we have for the past year. He ordered us to have a heart catheterizing done in the next few months and we asked if it's fine if we have it done after the holidays and he said it was fine, so we are waiting for a call to schedule it and I plan on doing it in the first few weeks of January, depending on availability. This puts us a little at ease because we can enjoy Christmas and New Year celebrations with family but at the same time we will have to be on higher alert so that we try to prevent him getting sick before that cath. Even a cough, runny nose or anything along those lines, as little as it may seem will defer the cath because a lot is at stake with anaesthesia and the evasiveness of procedure so this is a big deal. The results will tell us if we are a good candidate for the Fontan (which right now it seems as it is but we need this diagnostic test to tell us). Once this is complete, Jasiu's case will be brought before the surgical and cardiology team to discuss and tell us to schedule the Fontan.
So this is where we are. We are in a good shape and trying to enjoy the season with our family and making memories and spending good quality time together as much as we can. The first fun thing we did this December was to see Santa... well it was fun for everyone but Jasiu- he was not a fan of Santa :( but we had fun, nonetheless.
I must preface this blog post to just say that despite this complaining blog post, I am blessed to be able to complain about it and just the fact that my kids are able to go through these colds at home we are lucky. Many are not so lucky and would love to have their kids to be at home... just putting things into perspective.. but it still sucks for us.
Well it started since Emily started preschool and brough home the first cold, at least that's where I think it originated. She then proceeded to get better and we were hopeful that Jasiu's flu shot will do its magic, well it hasn't and the next few weeks it was Jasiu coughing on and off and then Emily the next week and this continued for over two months. Nothing that seemed too alarming, just the normal every day stuff, which got slightly worse at night, but they slept though it. We cranked up the humidifiers, rubbed in the Vick's and tried all homeopathic remedies we could think of.. This Sunday it got a lot worse for Emily to the point where I thought her cough was croupy and I already made the decision that Monday she would not be in school.
Well Monday she spiked a 103 fever and vomited. Fun times. A few hours later, Jasiu- also fever.. go figure. Anyways, we make an appointment with the pediatrician for late afternoon after work and here is the verdict
Emily - a sinus infection most likely from the prolonged cough and snotty nose
Jasiu - right ear infection most likely from the prolonged congestion
Both - amoxicillin for 10 days and acetaminophen (as needed for the fever)
So I ask for prayers for my two little sickos that they get better soon and we get some good nights rest (ALL of us!)
I am also pretty tired of changing and washing the bed sheets and comforters EVERY DAY from a different bed :( and cleaning puke from everywhere. We are at the point where last night there was a puke bucket in Emily's room, Jasiu;s room and in our room just in case they decided to spend part of the night in our room (not unlikely).
Must also give many thanks to our grandma's and aunties who watch the kids during the day and are able to care for the kids so Joe and I don't have to take too much time off of work. If we had to we would, but again we are blessed with excellent caregivers for our childern.
Also an update on Jasiu - I am diligently working on getting him the Synagis shot set up through insurance to protect him from RSV. Synagis shots are VERY expensive and insurances try to get out of covering them once a baby is a certain age or what they think is not high risk, but according to our doctor and the American Board of Pediatrics John should still qualify and would benefit from it. The cost outweighs the risk of RSV, even with our insurance the copay was 50 dollars per shot (and this is actually fairly cheap compared to many people's co pays).
So lift us up in prayer as the kids get through the cold/flu season because the Thanksgiving and Christmas are our favorite holidays and we would like to enjoy them in health.
Today we get to celebrate 20 months of Jasiu! On our way to the pumpkin patch last week I was planning out the remainder of our fall and scheduling a possible getaway for New Years and I was saying wow, I can't believe he will be 20 months this week, Joe looks at me and says noooo 18 months and I said that was 2 months ago, so we both acknowledged that time is just moving way too quick for our liking. He has become quite the chatterbox with more words pronounced correctly every day. The last word he learned yesterday "piwo" (beer in Polish) I think it's pretty funny because for those who know Jasiu if you give him a teensy taste he gets so happy, I think we may have issues in the future but I digress... he was so proud of himself when it came out correctly the way he heard it from us, I think he amazed himself. We try to spend as much time as possible with our kids because in the end they are what matters, so last weekend on Friday we went to visit a friend and I did the bare minimum of house work, Saturday we went to the aquarium with ciocia Aga and spent the evening with the grandparents and Sunday we did pumpkin patch and then visited with Joe's sister in the evening... I came across a few quotes that seem cliche but so true...
"Our house is clean enough to be healthy, and dirty enough to be happy."
and
"In 20 years from now you will be more disappointed by the things that you didn't do than by the ones you did do..." Mark Twain
I'm saving the heavy duty house cleaning till the weather goes bad! So here is what we have been up to lately in pictures. We can't wait for the remainder of the year with our favorite holidays approaching. We will take it all in and soak up all the memories as they come. The kids had so much fun and that's all that matters.
Today, last week and at least every month since I entered the heart community I have mourned over the passing of a complete stranger's baby. I have never met any of these babies and yet every single one of them who was called to our Lord way too soon has had such a profound impact on me. Today it was sweet Addison, last week Mia and two years ago, the very first child I mourned, was Travis, even before Jasiu was born. I still remember most of their names and their faces and pray for them and their heartbroken parents each night and then thank God for today and pray for more days with both of my children. I can not imagine the pain of those parents who had to say good bye to their children, to turn off the life support, to plan a funeral. I mourn along with those parents and can't help but to think that it could very easily be me mourning my own child and I fight to hold back the tears. Today is Pregnancy and Infant Loss Awareness Day and wanted to do my duty and spread awareness so that we all cherish every moment.
Two years ago on October 16th as I was celebrating the end of yet another busy season at work, we were told the most devastating news of our lives, like so many parents we were so lost and all I could remember were terms like half a heart, termination, quality of life, open heart surgeries... I can't believe it was already two years... We were so heartbroken ourselves because we didn't know what was ahead of us. I think the unknown scares everyone, yet before all of this I never really paid much attention to it and until you have some sort of encounter with a real possibility of danger/ or a "close call" than you don't really know the other side... and just like that in a matter of minutes without any warning we were thrown over the fence.. to the "other side". At that point the reality that I could possibly lose my child hit us very hard and it was such an awakenkng that this "hart community" actually exists and that there is so much pain and joy out there for these babies and families. Had I known what was before us and how our life is now the last year and a half would have been so much different, but we don't and can't know. The cliche that "we don't know what tomorrow holds" becomes much scarier with a medically fragile child. Knowing that a simple flu, ear infection, or anything really, can lead to heart complications and turn into a downward spiral really fast is the scariest thing on this whole journey thus far. Just because we are sailing through at the moment doesn't mean that it is guaranteed that is how we will go through the next set of events and though we live a pretty "normal" life that awful mourning thought is always in the back of my head... always lurking.. because my reality is that we have much higher chances. Hayden went in for a relatively simple G-tube procedure and suffered massive complications and passed away, Mia was on her Make-a-Wish trip in FL and got sick and passed away, Travis never recovered from the Glenn, Brooklyn passed away in her sleep. it's just so devastating yet we must put on a brave face every day and seize the day. Live our lives and hope and hang on to the hope that we will have a long and healthy life together.
However, today I also CELEBRATE. I am celebrating the milestones that Jasiu has made and the battles that he has won and the good things that his journey, our journey has taught me and the doors it has opened up for our family. Because not just our days but everyone's days, weeks, years are unknown, Jasiu has taught me to really cherish life and bring light to the fact that we need to live in the NOW. He has made such progress and he makes me so proud that he's such a fighter he makes me want to not give up when things get tough . Yes, I still lose my temper sometimes and complain about the little things that go wrong but overall I try not to let those things distract me away from the big picture and that is to thank God for each and every day. John and Emily bring such joy to our lives and I can't imagine it any other way.
The video below shows how much we have to be thankful for each and every day. Just the regular boy that we have so full of life. (Emily was napping so pardon her grogginess and our messy house)
Another thing we celebrated last week was an award I received from my work. I was nominated and won the Working Mother of the Year at the company I work for. This was the first year they were doing this and I'm humbled and honored to be even nominated by my coworkers. It was a pleasant surprise. I was nominated in the "Inspirational" category and that is directly related to our journey with Jasiu and HLHS. Once we found out about his heart, I had to create a plan with my firm for my leave and if it was going to be 8 weeks, 12 weeks, 6 months... or forever, all depending on how Jasiu would be doing. Me being a planner and my area of public accounting being fairly cyclical and client service oriented not having a plan could result in inadequate client service. My firm was so understanding and so supportive and respectful of my feelings and fears that they worked with me closely to make sure things were taken care of while I was away and had a back up plan. I really like my job and worked hard to develop my career but my family always comes first even if I had to sacrifice my career. But I was really lucky when Jasiu did so well as to allow me to go back to work and have my husband, my mom, mother in law and sisters help with taking care of John and Emily. But working, even though it is a reduced work schedule, and the numerous appointments and the stress of all that came along with HLHS was very difficult at times but somehow I managed. To me I was just doing what I felt I needed to make sure my family was taken care of, John and Emily got all the care that they needed and my work got completed and clients served well. My co-workers found that as inspirational, I call it just surviving and trying my hardest to strive at home and work and somehow balance it all even if I felt I was sinking at times. Besides the honor of being named the Working Mother of the year at the firm, our story will also be featured along the other Working Mothers of the Year as chosen by their top 100 Best Companies for women. This story will be featured in the Working Mother magazine December/January issue and I am beyond thrilled to be spreading the word on HLHS and CHD's. You can find the story by clicking here.
Additionally I got to bring a guest and be honored along side the fellow Working Mothers of the Year at a WM Magazine Gala dinner in New York City. Naturally I wanted my husband to join me in celebrating and we even got to bring along Emily. We both felt that John was too little to make the trip or sit through a 3 hour fancy dinner so he stayed home with grandma. It was a little bittersweet because this was an honor I received was because of him but it allowed us to have three days one on one with Emily, who during this journey often took the back seat to the spotlight that Jasiu received. Well in NYC, she was the star of mommy's show. Here are a few pictures of our celebration.
August 25th marked Jasiu's HALF BIRTHDAY. I can hardly believe that he is already half way done with being a one year old. I think the time is just flying much faster these days. Also special is that this is my 100th post, which I think is kind of cool. August 25th was also Emily's 4th birthday party so I have some cool pictures of that too. I think 18 months is a pretty big milestone we are reaching here with Jasiu that I wanted to document all of his accomplishments.
So Jasiu at 18 months is doing the following - walking running all over the place, saying mama, tata, daj (give) , tak (yes), auto (car), copka which sounds like kopka (hat) and sometimes dziadzia or babcia (grandma and grandpa) and Aga (which is my sister's name). He just recently started mumbling the ABC song and just LOVES it and to dance to it on when it plays on any of our toys. He can figure out how to climb onto pretty much anything, and brake just about EVERY thing he touches if you let him, is mostly happy except when teething. He has such a strong personality and expresses his anger in a very clear way (head banging on any hard surface or screaming until he gets his way). He loves the water and being at the beach, doesn't care for story time or books just yet. He will eat just about everything if distracted enough and is almost completely off of baby foods and eats all table foods even bigos, kwasnica and galabki (polish dishes that have a pretty sour and a distinct taste). He knows to point to himself when you ask him where is Jasiu, mama tata or Emily, etc. Knows his nose, ears and eyes though he sometimes confuses them. He recently started drinking from the big bottle at night and morning a whole 6 oz (just to remind you for the first 18 mo. he has never drank more than 4.5 oz ) and today he sat at the table in a booster seat (he's not a fan but I'm so sick of the high chair, I want my kitchen back). He weighs a whopping 24 and a half pounds, not sure on the height :( but still fits into all of his 12 month onsies but for the fall I had to upgrade to 18 month pants because the spring 12 month ones are too short. He is doing pretty well cardiac wise and only on one medicine for blood pressure twice daily and on a vitamin supplement once a day. I also supplement a homeopathic syrup that is supposed to boost the immune system and give it to him when I see a sniffle here and there or during the flu season.
Not liking his first time in the booster seat
Trying the pulse ox on mommy's foot
Life is so "normal" right now that I can't believe we are 6 months closer to the Fontan procedure. I also started preparing Jasiu for our next cardio appointment by dusting off the pulse ox and first letting it hang out on the changing table next to him (rest assured the first time he saw it on the table again he screamed bloody murder and I didn't even open up the case). Then the next day we opened it, then took out the probes, a week later when he was "OK" with it being there I turned it on and on the first beep he shed some tears but I wasn't hooking him up to it so he calmed down. Now we are at a point where he sees me putting it on my finger and toe while he's playing after bath time and he is warming up to it. He even touched it and played with the probe.. next step is to attach him to the darn thing without an outburst... After that I'm digging out the stethoscope and the process will be all over since that is another crying trigger for him. I am running out of ideas to get him to like the doctor's and the equipment he sees in the hospital but I hope this stuff works. The only other thing I can imagine doing is wearing scrubs... and we actually tried that experiment with my sister's pharmacy lab coat and Jasiu was not a fan...
Finally, Emily's birthday party was a hit. We had many guests and the hit of the party were the ponies by far! Emily at first did not want to share and wanted to ride all afternoon, so thankfully we booked two. It was a nice time with family and friends and a nice way to close out the summer.
horse rides
cake time
Piniata Time
Next day.. the aftermath
Sweet angels
Also, meet Sparkey, our newest member of the family.
Our last days of summer were spent on a great day at the beach and my beach bums loved it.
I can hardly believe it... Jasiu these days is a little piggy.. not quite the bottomless pit but mostly looking for something to eat. He has started to begin to feed himself and is quite good at it.. mostly. All he needs is his "charlie and the numbers" and he will open wide and eat and eat. One of our biggest prayers have been answered and our determination to keep experimenting with food and keep introducing patiently has paid off. We are so blessed.. See for yourself.
Next update... Jasiu is quite the handyman... he even helped dad and grandpa with the swing set the kids got for Emily's 4th birthday...
Next... Can you believe my little girl will be 4 next week.. that's FOUR, I feel like she was a baby Jasiu's age just a few minutes ago and she is sooo big and smart. She is in the 95th percentile for height and weight so that makes her look like she is 5!!! Take a look :)
Finally, this Friday I had a very special play date at our house... It was a Heart Buddies play date ! I had 5 HLHSers all that go to Hope for their surgeries and are Dr. Illbawi alumni.
**Jasiu the youngest at 18 months - Post Glenn
**Austin - 20 months - Post Glenn
**Jonah - 2 years and 1 month - Scheduled for Fontan for October 1st.
**Kylan - 3 years and 3 months - - one year post Fontan
**Josie - 6 years - 3 years post Fontan and one year post 4th heart surgery
These 5 kiddos and two of their siblings Emily and Morgan (Austin's big sister) played so nicely together, enjoyed some pizza and snacks and the mamas got to talk in a language that a year and a half seemed foreign to me. We just "got" each other and were able to share stories and for those of us pre Fontan (which is fast approaching for all three) this was a great experience to talk and get a lot of our questions answered that even the doctors can't answer. In a heart community that recently faced so many heartaches, it was so refreshing to see these kids be so normal. It really gives a lot of hope.
Jasiu with Josie (HLHS) and Morgan
Emily with Jonah (HLHS)
Jasiu with Kylan (HLHS)
Jasiu with Austin (HLHS)
4 HLHSers and 2 big sisters (the fourth is Jasiu's but hanging out from the slide :)
(left to right) Josie Emily and Morgan
Today we went to a Polish Mass in Indiana in our traditional Polish outfits and I think my little highlanders look so cute in their outfits (I may be a little bias here.. but hej.. it's my blog). Jasiu is quite the ladies man...
