The calm sometimes brings the fear...frustration...

Yep-it hit like a ton of bricks Tuesday. My daughter, who was "suppose" to only have 1 surgery, who was "suppose" to be fixed with that 1 surgery, and who IS happy, energetic and otherwise healthy is going to have her 2nd open heart surgery. Now we aren't talking about a surgery to correct HLHS (hyperplastic leftheart syndrom), or even a valve replacement. No-instead Jordan's ticker decided to grow a membrane that is causing the pressures to go up and her back into surgery. Back to bypass, back to PIC lines, back to chest tubes, IVs and the constant worry of what that loud beep or alarm means. Remembering that she deals better with Nubane than Morphine. And the biggest worry of all-will my baby make it through this?

I know in my head that yes-she will. That Jordan is a fighter and she's shown this before! She's proven that she can handle pain time and time again! Half the time we don't know that there is even something bothering her. That though, it part of my worries.

I know that she is in the best of hands with Dr Davis. He has done some amazing things to not only Jordan but a lot of her heart friends too!

My head just needs to convince my heart.

The part that really stinks about this whole thing is that Jordan has to go through all of this again. Like most parents, I would switch places with her in a minute if it meant she didn't have to experience the pain.

Would I change the whole thing if I could?? I don't know. While I would never wish this on any child, this path set before us has led us to some amazing people and a new part of our family-our Heart Family. Jordan has let us meet people we would have never met before. I wouldn't be active with Heart Friends or the AHA's Heart Walk.

She has also reminded what is important in life. That every day is not a promise but a gift.

Yesterday, I found out that another Heart kiddo will be looking at surgery in the next few weeks also! While it stinks that he has to have surgery, I have to admit it will be nice to see a familar face going through some of the same anxieties, fears, and anticipations for our kids.

Please keep Logan Jacks, who will be having surgery, and Andrew Huegel, who will be having a cath proceedure, both in the upcoming weeks, in your prayers. And of course, please also keep Jorgie Porgie in your prayers :-)

I hope everyone has a very HAPPY NEW YEAR!! Have fun and stay safe!!

Until Next Time!
Tracey

Ummmm.....Yes I am Jordan's Dad

Tracey hates it when I take over her status on Facebook but I figured it was about time that I pop up on her Blog. For those of you that know me personally you are probably "why it has taken so long?" Well Trac just recently made me an admin....not very smart on her part....lol.

As you are aware Jordan is going in again and I wanted to get some words in as a dad. I see all kinds of posts and blogs talking about how mothers of Heart Kids are the best and will do anything. I agree with every single thing out there that is written. Trac has done awesome things but I will tell you everytime I see articles saying "Mom this, Mom that" I get a little mad way deep inside. Moms are great and Dads are just as great. We don't always post every day or join the groups but when Moms are out doing that stuff guess who is doing dishes, laundry, and playing dolls? Ummm....I believe you have all seen the pics she said she deleted. When you read stories talking about Moms every once in awhile put Dad in there just to remember we are here.

So for all of you Heart Dads out there......Here is yours- You rock!!

Other items Trac has not been keeping up with that I think (as a Dad) are important. We are local to UIHC and we love campfires. So if you are in town sometime and need a place to unwind get in contact with us. In the spring, actually anytime, we may light a fire and just relax. We have found rain and snow aren't very good for fires but we always give it our best shot.

Depending on how tonight goes you may hear more from me or I may not be an Admin anymore....either way have a great one!!

The Chosen Mothers

I read this today after I found out yet another kiddo has earned his wings this weekend from an infection and one who earned her wings yesterday after battling a brain tumor.

----------------------
The Chosen Mothers
By Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. Did you ever wonder how mothers of children with life threatening illnesses are chosen? Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard."

Finally, He passes a name to an angel and says, "Give her a child with cancer." The angel is curious. "Why this one God? She's so happy."

"Exactly" smiles God, "Could I give a child with cancer a mother who does not know laughter? That would be cruel." "But, does she have patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has it's own world. She has to make it live in her world an that's not going to be easy."

"But, Lord, I don't think she believes in you." No matter, I can fix that. This one is perfect. She has just enough selfishness." The angel gasps -"Selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them." She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side."

"And what about her patron Saint?" asks the angel. His pen poised in mid-air. God smiles, "A mirror will suffice."

-------------

I found this on Jack Robertson's website. He earned his wings after having battling an infection. He had HLHS and Shone's Syndrome. His website is http://www.jacksheart.com/.

The other kiddo who earned her wings is Nadia Smith. She had only been diagnosed in October with a tumor on her pons area of her brain stem. She put up a great fight and will be missed by those who were touched by her. Her website is http://www.caringbridge.org/visit/nadiasmith/journal.

Please keep these families in your prayers.

Until next time-

Tracey

It's Here! It's Here!!

Christmas is finally here!! Wahoo!!

One thing I got this Christmas that I was moved deeply by was an envelope from Chet Culver, the govenor of Iowa. O'l Chet signed the proclamation! It is officially Congenital Heart Defect Awareness Week Feb 7-14!! Yeah!!

The thing of it is, I really don't think it's hard to do. Just sad more people don't do it! I didn't do it last year and felt guilty from it. I won't let that happen again!!

Now on to SANTA and FAMILY!

A tradition growing up was to always go into my Mom's room when we woke up Christmas morning. It has been a tradition that I now share with my kids. Usually the kids don't come in until around 6 or 7. This year?? 2AM!! I shoo'd them back to bed and told them not to come back in until at least 6. Well...they made it until 5:30 before they camped out on the floor of our bedroom. Drew fell back asleep FINALLY but didn't wake back up until almost 7 after some poking and prodding!

FINALLY the crew is up and ready to see their Santa loot!!

Drew got a guitar-do you think he's happy??

Drew has "practice" his guitar a couple of times now. I definately need to find a tuning device of somesort. Sounds a bit off :-) He is truly wanting to learn!

Riley was totally stoked to get Tony Hawk for the Wii! Comes with a sensored skateboard to do tricks!

Jordan was happy to see her "unk" of Fairy Dress up Clothes!

Jordan decided she had to try on her new dress up clothes!! It was too cute! She had even Daddy getting into it-I, however, got yelled at for taking the pic!

Jeremy got his Blu-Ray player. Of course now there is talk of a new TV being needed...AGH!

And for me? A MUCH NEEDED NEW CAMERA!!!!!! YEAH!!!!!!

After opening our gifts and checking the Reindeer Dust (Santa's reindeer must like oatmeal too because some of it was gone!), we went to Independence for the family lunch. This is really the only time I get to see my aunts and uncles so I am always happy to be able to go! We had decided we didn't have a very recent "family" picture so we tried to get one.

I heart them! Lt to Rt-Travis (Bro), Kelly (Ma), Riley, Curt (Uncle), Drew, Howard (Uncle), me, Kaleb (Nephew), Pam (Aunt), Jordan, Jeremy, Laurie (Cuz), Kristy & baby Ward (Sis), and Ben (bro-in-law).

More of the Thomas side of the Family-Love them!! Lt to Rt-Seth (Cuz), Howard (Uncle), Pam (Aunt), Kelly (Should be cuz by now :-)) and Sofie (Cuz's daughter)

After lunch and pics, we hit Jeremy's parent's home. We ate again (maidrites! MY FAVORITE!!) and opened (yep-you guessed it) more presents! A doll house for Jordan and race tracks for the boys. We weren't able to bring home the tracks yet since Mother Nature surprised us with 1 1/2 inches of snow!! It was a slick ride home but we were able to make it on the deserted roads.

The day was very fun and couldn't get enough of the kids giggles and out right laughing! Still, Jordan's surgery lingered over me. I caught myself with tears in my eyes as I opened the envelope from Culver, and while I was wrapping her presents...I caught them again when she was opening them. As we approch her surgery date (Jan 12th!), I have a feeling they will come more and more.

BUT Christmas was a good day!! The day was mostly filled with laughter and just being with my family. We have 1 more Christmas get together with my Dad on Sunday. Can't wait!!

Until next time!

Tracey

Christmas Eve at the Snyders

Merry Christmas all!

We've been blessed with a wonderful Christmas this year! Another year of family, friends, and giggling kids...who could really ask for more?

Christmas Eve has been a day we've made for our kids and us. This year we went to the movies and saw ...

Alvin and the Chipmunks 2-The Squeakqual.

Jordan was even able to sit through most of it! I heard A LOT of loud laughter coming from Riley and Drew too. It was a very cute movie and can't wait for it to come out on DVD (or I guess Blue Ray now) for another family movie night.

We then proceeded to church service at 5:00. Service was full and we were surrounded by people who were just giddy with the Christmas spirit. We sat by our friends, the Gryps, who in return took Jordan to hang with them. I think Dani has a soft spot for her :-) Anyway after our candles were lit (and boy that took some doing for some reason!), we headed home for supper of nachos! Yum!

We have the tradition of also opening 1 present on Christmas Eve. The kids opened their Snuggies. Yep-we fell into the hype and got the boys Hawkeye Sunggies and Jordan a pink one (they just don't make Hawkeye Sunggies small enough for her-what's the deal??).

Who ever thought...

...Snuggies could be...

...so cool!

Once the kids opened their presents, it was time to put out the Magic Reindeer Dust. Every year one of our neighbors gives the kids a baggie of oats and sparkles to put out for the reindeer. For those of you who don't know, you throw a little in the yard and then put the rest on a plate. The sparkles reflect of Rudolf's nose and the oats are a little snack for them during a long night. The kids love it!

1..2..3..Throw!

It was raining...hope reindeer like oatmeal too!!

After setting out the cookies and milk for the Big Man and one last check of NORAD, we saw that Santa was getting close so off to bed for the kiddos! Mom and Dad followed long after the presents were wrapped. When am I going to learn to wrap BEFORE Christmas Eve?? Oh well...there's always next year!

See our next post about CHRISTmas!!

Tracey

It takes a village...

Even though in the last few weeks we may have had times where it felt like the wind was knocked out of us, there were some good times too!!

Drew had an open house at school to show off his village. The 1st grade classes collected milk/juice cartons and made them into homes, hospitals, Wal-Mart, malls...you get the point! These kids were pretty clever! They also made ginger people to go with the village. To "decorate", they were given a set amount of "money" to buy things. What a great way to combine math and social studies!

The Village-With hospitals, Wal-marts and people too!

Drew with his Hospital. Notice the "Iowa" on top? Hum...wonder where his daddy works?

Drew and his house

And what a village it was...

Until Next time!

Tracey

Once a heart family, Always a heart family...

Today I have a lot of why's?...

Jordan had her yearly cardio appointment on Thursday. We started the day off with trying to keep Jordan from eating or drinking anything. That in and of itself is an interesting feat...she's 3. She doesn't understand the why. She just knows she's hungry and wants "milk in a cup". We really don't think she will stay still to have the ECHO done so she has to be sedated.

**These were taken with my phone...I forgot my digital camera in the van...

Start of the day...we were waiting PATIENTLY for the meds...

Sedation has been interesting to say the least when it comes to Jordan. Last time, she had 2 doses before she conked out. She fights it until she is just delirious. I have nicked named her "Drunk Jordan" during all of this! This time was no different. She fought sleep for an hour...a LONG hour of counting, of soft music, of rocking, swaying, of laying down...

of playing with her mouth...

...of giving kisses...

We tried just about everything you could think of. FINALLY she started crying and just couldn't get comfortable, which, by her waking up in the middle of the night and trying to get her back to sleep then, I knew she was close. I picked her up, swayed again for a few times and BAM. Out like a light. Jordan was out solid too. GOOD!

Finally Jordan is OUT! Not sure how a towel on the noggin' is suppose to keep her warm but oh well...what's going on in your ticker, Jordan??

While the ECHO was going on, I was looking over the shoulder of the technician. She seemed to be looking at specific spots for longer periods of time, taking lots of pics and really not talking to us. I kept trying to stay calm but something told me that there was something wrong. I had noticed too that a valve looked like it was slapping something when it opened but again thought "well maybe that is 'normal' for her" but I didn't remember it from last time. Jordan's O2 stats were fine so what really could be wrong?

The verdict?? We found out that Jordan's subaortic stenosis has progressed significantly and will need open heart surgery in January to remove the mass right next to her aortic valve. Her gradient was 65 (up from the low 30's last year). What I saw slapping was the aortic valve hitting the mass. It can't be seen on the ECHO whether or not it is actually attached to the aortic or the mitral valve. Dr Scholz wants to do the surgery as soon as possible since her condition worsened as quickly as it did. Right now the walls of her ticker and her aortic valve haven't been damaged by the pressure in her heart. We want it to stay that way. Once the valves get replaced, then she's in for a lifetime of surgeryies to have them replaced as she grows or as they wear out. There may also been the need of a cath for her mitral valve since he noticed some minor narrowing there also. He is going to let Dr Davis (Jordan's surgeon) decide whether or not a cath is needed. Dr Scholz thought maybe that was how it was constructed after her cleft mitral valve was "fixed".

So my why's. Why does Jordan have to go through another open heart surgery when her original diagnosis was on the "minor" side of CHDs? Why does my baby have to go through another surgery which causes her pain? Why were we told in the beginning that her heart should be "fixed" with her 1st surgery? And bigger ones like why didn't I take her in sooner regardless of what anyone said? Why did I somehow know that something like this was going to happen again?

I sometimes hate "mother's instinct". I've had this pit in my stomach for sometime now that something wasn't right. Jeremy and I were talking the night before when he asked me what I thought the doc was going to say. I outright told him I thought her pressures were going to be high, that her stenosis was worsening, and that something was going to have to be done. I couldn't give him any concrete or medical evidence...somehow I just knew. I wish...Oh how I wish I was wrong!!

SO...when Jordan comes out of sedation, it is just about as funny after she sleeps as before. She is happy, CRAZY, and hungry!

No-I'm not foaming at the mouth. I just ate 3 powder donuts and had some apple juice. (Mom and Dad paid for that later!! YUCK!)

See my hands? I have powder on them too!!

We should know more Monday if Jordan's case is presented. As of Wednesday, she was the only one to be presented. It may not be until January though before we know anything due to the holidays. Please keep Jordan in your prayers for a successful surgery and for a quick recovery.

Please also keep these other heart kiddos in your prayers as they will be going through their own surgeries and cath procedures also! **These were taken from another Heart Mom's site but it is amazing how we all tend to follow the same pages!

Logan Jacks has his cath after Christmas and a possible open heart surgery to follow.

Derrick is undergoing his cath on Monday and will have his second open heart surgery soon.

Andrew will have his cath in January and faces the possibility of another open heart surgery.

Please also keep the kids who have are going through recovery from sugery and also have parents who have lost their kiddos to CHDs this year. Unfortunately there are WAY too many angels to mention, but one in particular is Jess Twigg. She is having a rough time just trying to understand and get beyond the hurt of losing her child.

Most of all, please keep the doctors, surgeons, researcher...EVERYONE who could affect and does affect kids with CHDs. These are the people who keep our kids hearts a tickin'...

Until next time,

Tracey

Has it really been almost a month since my last post?! Sorry!

Things have been going pretty well here. Earlier this month, we delivered blankets from Cuddles from the Heart! I felt blessed and humbled to be a part of such a great project this year. Over 520 blankets were donated this year!

*Pic from http://www.cuddlesfromtheheart.blogspot.com/

This is only a portion of what I was able to collect and included 2 additional heart mom's 21 blankets! I was able to collect over 130+ blankets! My sister and a good friend back in my hometown helped collect or picked up many of them! It was overwhelming to feel the support even back home!


*These are just a FEW of the 520+ blankets donated!

There was a 4-year-old boy in the PICU who squealed in delight and all it "cost" was a dinosaur blanket. It was priceless. We gave out about 125 blankets directly to the kids and then an additional 50 each to 2 JC (Step-down until) and 3 JC (Peds Cancer Unit) at their request. When I went back with another heart mom to deliver extra blankets to 3 JC, I was told that we caused a lot of smiles that day. Some who may not have had something to smile about for awhile. You guys helped us with that. THANK YOU!!

AND because of the generous hearts of all of you, we were able to spread the Cuddles across Iowa. Many of us were able to take blankets home to our "hometown" hospitals. The rest went back to Stef's to have a start for the next donation. I am still accepting blankets so if you have one you would like to donate, please let me know. It was a great feeling to be a part of something so rewarding. Thank you Stef.

Winter has finally set in. We knew it had to at some point-we do live in IOWA after all! I think the final snow total around here was 12-13 inches. Hard to know with all the drifting! The street north of us had to have a Cat come in to scoop the snow out the drift was so high!!

It was a bit windy too!!

Because it was so cold and windy outside, I wasn't able to let the kids play for long periods of time in the snow. In between times of snowball fights and snow fort building, the boys would come in and play with Jordan. At first it started with "doing" her hair. By the time lunch time rolled around...

...we had a tent village. These lasted all day! ALL the kids-yep-even Riley and Drew, played in the tents. It may have been cold outside but the warmth of true sibbling love was felt inside.

**Sorry! Not open yet!!**

**HEY! We are taking a nap here!**

**Even Riley got into it-His comment after this picture was "You are going to put that on Facebook aren't you!" Yep-I did!!

Jordan will be having her Cardio appointment on Thursday. These appointment make me VERY nervous. I think a big part is because we haven't had an appointment where her doc has said "Yep. No changes since last time." Each appointment there is something different that has come up. I guess we'll just see what happens this time!

Until next time!
Tracey