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...
Today we had our cardiology appointment to see if the increase in Enalapril was working to help control John's blood pressure and help his heart muscle not work so had and reduce in size since it was discovered that his heart has "thickened" at the last appointment in May. As you may recall we were supposed to see Dr. H after 2 months (and I made my appointment exactly for 2 months later) but it got pushed back because the doctor was out of town unexpectedly, than John came down with the HFMD and then the Dr. was out of town so the appointment was scheduled for today. Now let me preface that I have been proud of myself that for the last 17 months I have known my child so well that and we have been so lucky that I have scheduled each of his cardiology appointments at a time that I know by the time the echo comes around, John takes his bottle and passes out and the echo is done in a nice dark quiet room while he naps in my arms. EVERY TIME for the last 17 months worth of appointments EXCEPT for today. This unfortunate event is partly my fault and partly the staff at our clinic (and gosh I love those people, but today they were a little slow to meet our needs).
The timing was good, it was before nap time that all the screaming in the waiting room, during vitals and all other routine stuff tired him out. By screaming, I mean from the moment we walked through the hospital door until we left with brief moments of non crying when no one from the hospital staff made eye contact or was within 5 feet of him. At the very sight of the receptionist he went hysterical. My poor kid has the biggest white coat syndrome I have ever seen or heard of. Anyways... once they finally left him alone after vitals, I gave him his bottle and he began to pass out. From all the commotion, I forgot to remove his shirt for the echo but didn't even realize it until much later. Once asleep we got the pulse ox reading and blood pressure reading. So I finally tell the nurse to get the echo tech in there to start the echo while John is still sleeping or else we have a lost cause, we already stirred him while we were doing the blood pressure but he continued to doze off. Well the doctor hasn't written the script for the echo before hand so the tech couldn't start, that took a while and finally by the time he came in to do the echo, I realized I did NOT take off John's shirt and he did not have a button down. I have NEVER forgotten to remove his shirt before he fell asleep and of course when I tried to remove it ever so carefully, he woke up. To say that John is a light sleeper is a huge understatement, once he woke up that was it. The tech gave me 15 minutes to try to get him back to sleep, poked in and that arouse John and then gave us another 5 minutes which turned out to be another 15 minutes of waiting and nothing, still not sleeping and we gave up. We just got one measurement while I was holding down a screaming Jasiu holding both arms and legs thrashing and heart rate nearing the 180's (he head the leads on that told us the accurate reading) (also normal resting heart rate for John is 100-115 beats per minute) NOT fun at all... Ohh and from all the screaming during the middle of the echo he coughed and threw up all over himself, the room and me of course, (the only unscathed party was the tech) so for the remaining hour of the appointment while they finished the echo and the doc read it and we talked ... I smelled like puke... again NOT FUN !!!
SO the million dollar question was if the doctor could tell anything from the echo and pictures that we were able to get... yes... sort of... The heart muscle is still a little thick, thicker than they want it so we are increasing the Enalapril one more time to now 1ml 2x daily in hopes of helping it as well as the blood pressure that was on the high side (and it was taken during sleep, so it wasn't artificially high because of his strenuous crying or anything like that). Next appointment in 4 months and I told the doc to already write the script for that and I will remember to remove his shirt and hopefully we don't have a repeat of today, EVER ! Also, the doctor said that we will begin talks and preparation for the Fontan at our next appointment, which will be based on that echo and most likely will require a pre Fontan catheterizing, which I can't imagine will be any fun for us or for Jasiu. My only hope is that in 4 months he will be a little older and by the time of the cath a little wiser and maybe not so against the hospital, but that's probably the hopeful me talking, the reality is that who knows when he'll grow out of it, if ever.
That's it for now, we will continue to pray that the medicine is working that Jasiu will stay out of trouble and that we can and will try to enjoy our summer as best as we can.
So I finally have some time to blog about our recent activities and instead of all happy updates, I have to share that somehow Jasiu contracted Hand Foot Mouth Disease/ Virus (HFMD). It's no fun... I think the shirt says it all.
Yep, he was pretty miserable for the first two days starting on Wednesday and took him to pediatrician on Thursday (before our scheduled cardio appointment) and the doctor confirmed it that it was HFMD. This is a virus that is pretty common in toddlers and kids but somehow I have not heard of it besides a few heart kids I have gotten to know in the online heart mom's group. There is not much that can help because it's a virus so no antibiotic and it causes blisters in the mouth (in and outside) hands and feet/legs. They don't itch but do hurt when they are pressed and the open wounds in his mouth and on the tongue I was told hurt, so naturally his appetite has gone down but he still continued to take his bottle without any problems, so from what I hear we got the mild version of the virus. Besides the fever at the beginning and the increased irritability he seems much better. He does want to be carried more because of the blisters on his little soles of the feet and under and on top of the toes. It sure doesn't look comfortable. Poor little guy. Ohh and all weekend plans have been rearranged so that one of us is at home with Jasiu all weekend because it's contagious. Currently Emily is still not showing any symptoms. The pediatrician said his whole body is working so hard to keep the ticker going that all else including his immune system are much weaker. He has been sick now twice in two weeks. We have no idea where he picked it up but it may have been at our 4th of July traveling. Lot's of public places and a very active toddler equals many a many opportunities to pick up germs and it's hard to keep him in the stroller at all times, plus a hotel room which I apparently didn't wipe down enough.
On 4th of July, one of the hottest Independence Days in the Midwest EVER, we headed out to Holland Michigan. (when I booked the trip the weather wasn't projected that far out ) It was a nice ride and we timed it just during John's nap which was great since he is not much of a traveler. Though we didn't get to walk around the shops too much because it was SO HOT, the town was charming and we will definitely come back. The kids liked the fireworks for about 5 minutes and then they were over it, but they were really nice.
They did LOVE the beach though. It was a hot day but the cool Michigan Lake water was very refreshing. Then from Friday through Sunday we spent back at Bass Lake and did a little boating, beach and just relaxing. Besides a small incident and Jasiu's cold that he caught on the first day there that caused him to puke all over the hotel in Michigan over the two days we stayed there it was a very very nice getaway. We are really lucky that the kids are so easy going. :)
Family Pic
Her Posign face
My little Firecracker
Dutch Village
Beach Day
Silly Girl
This is Emily waiting to be seated for lunch
This is Jasiu waiting not so patiently
True rays of sunshine
Jasiu not so find of his life jacket (the smallest we could find)
Finally, there is no cardiology update because once I called the clinic to tell them that John came down with the HFMD they told me not to show up for at least 2 weeks, OK, but in 2 weeks Dr. H won't be there so we have an appointment in 3 weeks. It has been now moved up twice and it is really bothering me because the reason we needed a May appointment is to see if the Enalapril increase in dose was working for his blood pressure issue and I'm getting nervous. So let's pray that the medicine is working, visibly he seems fine but you never know with the heart. So next appointment date is August 2.
