For the Love of Mending Hearts

It's been a hard week...

2010-10-06T13:53:00.005-05:00

I have 1 number in my head...nine.

Nine brave kids

Nine fighters

Nine inspiring kiddos

Nine broken hearts

Nine Angels

We lost NINE kiddos just this week that I know of with one earning his wings just this morning! This just breaks my heart that these families are going through such pain losing a child. I can't imagine the pain these parents are going though having to say goodbye to their child long before they are "suppose" to. No more birthdays, proms, graduation parties, weddings, grandchildren...and why? Because they were born with a broken heart and things went horribly wrong.

It brings up so much emotion in me - sadness, pain, fear and gratitude. Why gratitude? Because I am reminded to hold my babies close. I am reminded when I'm with my hubby, to BE with my hubby. I am inspired to PUSH friends, family and yep-even complete strangers to ask questions about their babies heart at their 20 week ultrasounds and PUSH for a pulse ox before they leave the hospital with their newborn! It's why I feel QUILTY when I don't.

Today I woke up to find this on Facebook-

His heart has stopped. Chest compressions and a room full of doctors.

With this an hour later-

Joshua has received complete healing in the arms of Jesus. Please just be silent and thank God for his life.

NO parent should have to post this. NO parent should have to see their child pass in front of them. Do I sound angry!? I AM! Why does this happen to 9 kids (someone's son, daughter, granddaughter, grandson, brother, sister, cousin) in just 1 short week?

CHDs are forever. There is no fix where Cardiologists are no longer in their future. The worries don't stop just because their heart has been repaired. Trust me-that can change.

There's one thing I hold on to through all of this.

Hope.

I hope for so many things. I hope for peace among the families who have lost their child and gained an angel. I hope for more research to be done so days like today don't happen.

I hope and I fight.

These 9 kiddos fought for every day they had here on Earth. They fought to be with their families.

I fight for Jordan. I fight for Logan, Ellie, Conner, Carter, Brekin, V, Liv, Maddi, Andrew, Jilly, Gabe, Vika, Colton, Truman, Gracie, Derrick and more...

And I always will...

It all began with "I think I hear a murmur!" - Blog Event!

2010-08-23T13:42:00.019-05:00

Hard to believe it's been 3 years since our CHD journey started with Jordan. It all really started with "I think I hear a murmur!" When she was born, her pediatric doctor thought she heard a murmur but figured it was a ventricular one that MANY babies are born with and fix themselves. After 2 weeks, she couldn't hear it anymore and no testing was done. Little did we know we needed to push to get some testing done...

Jordan after devouring her 1st birthday cake!

Jordan turned 1 on Thursday, August 9, 2007. The next day we took her to her 1 year well baby visit. That is when we heard those dreaded words "I think I hear a murmur!" We discussed that she had one when she was born but no further testing was done at that time. Dr. Hempy referred us to Dr. Scholz, a peds cardiologist at the University Of Iowa Hospital and Clinics. We were able to get an appointment for the next Monday. The weekend was long but I had myself convinced that it was just an innocent murmur and nothing to be worried about.

Monday we started off with chest x-rays which wasn't a big deal. Getting her to fall asleep for her "nap" for her echo was a challenge. She wasn't sedated for her 1st one since they had planned it around her nap time. Throughout this whole time we have only seen residents, med students, and fellows. After Jordan's echo, the fellow looked at the results and clammed up. He wanted us to come back and see Dr Scholz that afternoon. I had a feeling that something more than a murmur had appeared on the echo but just convinced myself I was over reacting.

Jordan's diagnosis was more than a murmur. She had an Atrioventricular Septal Defect (AV transitional canal), a cleft mitral valve and was in mild congestive heart failure. She was in surgery on August 22, 2007, to repair her defects. This was when everything became real. No one or nothing can prepare you to give your daughter over to a surgeon whom you just met 3 days before to "fix" an part of her body that is essential to live. No one prepares you to see your child being wheeled out with tubes and wires that are all necessary to keep her stable. And no one or nothing prepares you to see your child on a vent to help her breathe.

Jordan rebounded quickly and we were out of the hospital in 5 days. This was "suppose" to be it. She was "only suppose" to have yearly appointments to keep an eye on her and her mitral valve since it still regurgitated due to the cleft. Little did we know that we were not done.

Our family in January

Just this last January, Jordan had surgery again. She had been diagnosed with Subarotic Stenosis and Mitral Stenosis (or narrowing) at her last appointment in December. Because of the stenosis, it was causing the pressures in her heart to go up and putting more pressure on her valves. It had already started to cause the Aortic valve to weaken and regurgitate. She had surgery to remove what was thought to be a membrane. What Dr. Scholz and Dr. Davis didn't know was that it wasn't a membrane but the actual wall of her heart thickening in that area. Dr. Davis did what he could to remove the membrane that did exist but unfortunately it did not "fix" her problem. This is also when he found out she had a partial bicuspid aortic valve.

Jordan within hours of her surgery. While this is a hard picture to see, this is what makes it real for others. This isn't tonsil surgery...

This surgery did make her heart function better however she got staph infection in her chest incision. She landed back in the hospital for another 6 days and had a PICC line for IV antibiotics for another 6 weeks.

Notice the IV "ball" in her hand! It took about an hour to infuse. She had to do this for 6 weeks!

Today Jordan is a vibrant and energetic child who attends preschool and acts just like every other 4 year old I know. She has had some delays in speech and some of her early milestones were reached later than heart healthy kids. Her pressures are down and we are on 6 month visits right now. We know there are more surgeries in her future. We just don't know when-it could be next year or it could be 20 years from now. All depends on how her heart handles her growth. She's been told she can't play football, wrestle or be a heavy weight lifter when she gets older by Dr. Scholz. She handled that news pretty well :-D

Jordan just turned 4! Blow those candles out baby!

Jordan 1st day of preschool was Monday! This is her 2nd year at Bright Starts!

Jordan with two of her biggest supporters-her brothers. Riley and Drew started school last Thursday. Riley is now in 5th Grade and Drew is now in 2nd!

I can't imagine our journey without such wonderful support from not only our friends and family but also from our CHD family. People whom we have only "met" online have become good friends of mine. People who we wouldn't have met otherwise are now some of my closest friends. While I would do anything to take the pain, future surgeries and worry away from Jordan, I really don't think I would trade it for anything.

We've come a long way from "I think I hear a murmur" but a road that is never ending and always changing. We will continue to travel that road where ever it takes us. We have faith in Jordan's doctors, nurses, and most of all God that road will take us to only bigger and better places. It has led me to become more aware of spreading CHD awareness. I have contacted senators and representatives regarding health care laws. We have participated in Heart Walks (Jordan was the Heart Child this year), support groups, and contacting the Governor of Iowa for a Proclamation for CHD week in February. I have also written letters with other CHD moms ( www.ourlettersofhope.com/Jordan1.htm ) to Oprah, Good Morning America, The Today Show, Ellen, all of which have gone unheard. (However, recently Ellen and The Today Show have had clips of CHD families!) While our efforts are not always greeted with open arms or open hearts, we continue to raise aware awareness any way we can. We continue to pray for that "magic" procedure to benefit the worst of heart defects. We continue to support those who have lost their children to CHDs and celebrate those who are beating it.

While Jordan has put her surgeries on hold, our journey is far from over. This is something we do NOT go through alone and praise God for that!

Wondering where I've been??

2010-04-26T13:41:00.006-05:00

Hey all! Wondering where I've been? How is Jordan doing? How did the Heart Walk go? Well I'll tell you :-D

I had to step away for awhile from the CHD Community for awhile. After Jordan came home with her PICC line, we went into survivor mode. Living in 6 hour increments can really take a toll on a person. I have a new appreciation to those of you who have or had to deal with feeding schedules, med schedules, and just overall giving that higher level of care that sometimes our kids need. I felt for awhile that we had a newborn again! Because of my day schedule between preschool and daycare, we couldn't move our 2AM med without causing issues with the others. Luckily, Jeremy and I had switched every other night so that at least one of us was functioning! I would still wake up but I didn't have to get up!

Jordan's meds ended the 1st week of March and the line came out after the culture came back negitive for infection a week later. SHE WAS SO HAPPY! We had let her go back to preschool but asked that she would stay inside for recess. To be able to go out and play with her friends...it was priceless to see her smile that 1st day!

Once I knew Jordan was FINALLY on the mend, I ended up closing down. Part of it was shear exhaustion from not sleeping a full night in months, but a large part of it was from emotional exhaustion. Looking back now, I can see that I was almost numb when Jordan went BACK to the hospital and had to stay because of her infection. To find out that they were treating her for one of the WORST staph infections you can get (MRSA), (THANK GOD those test came back negitive), then finding out we were going to have IV meds for the next 6 weeks was emotionally consuming for me. My worst fears were coming true. Jordan had gotten an infection and it was in her blood stream and possibly in her bones! But you know what? Like everything else that is laid before her, Jordan kicked it and made it look easy. Once I realized that, I started to make my way back to me being me again! It's taking some time but I'm getting there!!

I looked at what I was grateful for-Heathly, happy kids, a wonderful hubby, and awesome support around me. Jeremy has been my rock throughout this whole process. Even though he was afraid too, he was always encouraging! He would go home at night and be with our boys so that I could stay with Jordan. While I wanted to be home with them, I couldn't leave her for very long. What would I have done without him, I don't know!! He really doesn't get enough credit :-D

Now we are ALL a happy, HEALTHY family. It has made us each stronger and more grateful for each day. Riley and Drew now understand more of Jordan's heart issues and have seen her at her most fragile state. They are now her fiercest protectors. Riley wanted to do Jump Rope For Heart at school this year! He went around to neighbors to ask for donations which went to the American Heart Association. He also got a good number of kids in his class to jump in honor of Jordan. What a sweetheart!

Last weekend was the Johnson County Start! Heart Walk. We were honored to have Jordan be the Heart Child this year! At first I was a bit reluctant, but after talking to a few people I realized that it would be good to get out and make people realize there is a range of different heart defects. She has full function of her ticker. She's not on medication. Even though we have had weight issues, she hasn't had them bad enough to get a feeding tube of any sorts. I hope by doing this, new parents realize that having your child diagnosed with a CHD does not instantly mean a heart transplant or worse.

Raising money this year...I am in awe! Because of friends, family, and even people I don't know, we were able to raise $1,074.25 for the American Heart Association. A little over half of that will go to the Legacy of Life Endowment fund! Even though the principle will not get touched, the interest earned on it goes DIRECTLY to fund CHD research!! The more research that is done for our kiddos, the more of a chance they will be able to live LONG and HEALTHY lives! I pray that 5% increase of adults who live with CHDs will continue to increase!! I was happy to raise money for the general fund also. We family members who have either died from a heart attack or are dealing with heart issues now as adults. The money raised for education and research will continue to help them also!!

Thank you to everyone who donated in one way or another. From those who donated online, sent me a check or even bought a Heart! Thank you to Collins Community Credit Union, Rage Grafix and Anderson Chiropractic for selling the Hearts for us. My goal next year will be to add to these businesses and to be able to raise even more! It's amazing how much can be raised when you just give $1 or 2. Thank you also to those who may have already donated to AHA this year!!

While this year's walk was again done in the rain, I thought about the kids who have had surgeries in the past year, those who have earned their Angel Wings, and those who have just begun their battles. It could have rained, hailed, snowed and sleeted and it still doesn't compare to what these kids walk through daily. I was happy to be wet and walking. It was SO worth it!!

Jorgie Porgie's Posse-

Front Row-Drew, Julie Kinsinger, Travis Walthart, Me, Riley, Kristy Ward, Kypton Ward, Lauren Melloy and Jenny Melloy

Back Row-Teresa Wenman, Ashley Walthart, Larry Snyder, Jordan, Jeremy, Lyndia Snyder, Becca Booth, Bev Mason, Kelly Kane, Laura Mason, Stephanine Wilson and Avery Wilson

And to the Posse! Jorgie Porgie's Posse raised (unoffically) $2,154!! We had 21 people (adults and kids) walk!

Peds Cardio / Heart Friends Team

(This is only a fraction of who was here thanks to the rain!)

I'm still in awe...

Who KNEW?

2010-02-05T14:18:00.013-06:00

Ahhh....I can breathe again...

Who knew our journey down the road of CHDs would start the year out from here:

To Here:

To Here:

Back to Here:

And now Here:

But that is part of the problem! We didn't KNOW! We didn't know what CHDs really were when I was pregnant. We didn't know just how quickly things can change. SO because we didn't know, we are now helping others KNOW!

Our lives changed once those words "Your daughter has a heart defect and needs open heart surgery." Shock, disbelief, and fear struck our hearts! We Googled and WebMD'd AV transitional canal to see what we were really looking at in regards to Jordan's ticker. We were given a little more than a week to get prepared for that 1st surgery. However, I don't think ANYTHING can really get you ready to see your child out of surgery.

Little did we know that we were going to walk down that road again! December was another eye opener to us~

Since Jordan's 1st surgery, we've joined groups to not only support each other but also to help raise awareness of such a deadly disease. We have made some really great friends who we know we can lean on at any time. People who we have never met in person have become part of our Heart Family. We would do anything for them as they would do for us.

This past year I have joined forces to help raise awareness for CHDs! I want to help new and expecting parents to know what to ask for when it comes to prenatal testing. Some things are pretty inexpensive like a pulse ox test before you go home with your newborn. Others are what to ask when having an ultrasound done.

There are 40,000 babies born with a CHD every year. Too many of them will not see their first birthday because their parents didn't KNOW their child even had a CHD. Others will battle with weight and feeding issues like Jordan. CHD babies tend not eat until they are full. They eat until they are satisfied because they are just plain worn out. We don't think about it but could you suck on a bottle for 15-20 minutes when you are tired? It takes a lot of energy for a baby and if you don't have it, you don't do more than what you have to. This is why some kiddos end up on feeding tubes!

We found out about Jordan's CHD only when she was in congestive heart failure. Because her heart had to work harder, a murmur was thought to be heard. It was the swooshing of blood through her septum wall. Had we asked for further testing when her murmur was first heard at 1 day old, we may had KNOWN more. We didn't get Jordan's heart checked out because it was thought to be a ventricular murmur which many babies are born with. These tend to seal up on their own. Because we didn't KNOW, we didn't push.

This week, February 7-14th is Congenital Heart Defect Awareness Week! I, among others, wrote to Governor Culver for this proclamation in Iowa. It was GREAT to receive it on Christmas Eve. Be prepared to see more awareness brought on Facebook, blog sites, and outside events!

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

Update on Jordan~ Jordan is doing GREAT! She is still getting her IV treatments every 6 hours (that 2AM is KILLER) but we've talked to the Pharmacist who was able to knock down the dosing time from 1.5 hours to 45 minutes. She is still getting the same about of the antibiotic. She's just not getting as much saline with the dosing.

Jordan has joined what I call the "general population" at daycare since Jeremy went back to work on Thursday. We are also looking at starting preschool again on Monday. Because she will still have her PICC line and recovering from her surgery, she won't be able to get rough with the other kids yet, but she will at least be able to be with her friends again. I know she's been missing them!

How will our year end? Only the Man above knows! In our CHD world, I hope and pray Jordan is back to 100%, Jordan's Heart Friends stay healthy, and more money is spent on CHD research to find more ways to help other kiddos!

Until next time!

Tracey

How easy is this (really!!)?

2010-01-29T15:50:00.005-06:00

People are surprised when I:

1. Say Jordan is on IV meds

2. Tell them how easy it is!

So I figured I'd just show it-

This is all we need for one of Jordan's IV treatments!

There is 2 syringes of saline, a syringe of Heparin, a 'grenade' of meds and a backpack. That is all!

This is all that is needed to give Jordan her IV meds! It is pressurized so no pumps, no need for batteries or electricity, no big scary machines that beep at all times of the day and night! Jordan carries this around so she's not required to lay or sit down to give her meds. This takes about an hour and a half so getting her to do that 3 times a day would be crazy (her 4th treatment at 2AM so she's sleeping when she gets it). The backpack make it easy to travel with-just stick everything in the little backpack and she's off! It was a GREAT thing when we were at the hospital Wednesday night trying to get her PICC line re-dressed! Just hooked her up and we were in business!

The only thing that makes me a bit nervous now is how cool the med is and the Heparin. The med has to be refrigerated and we have to take it out well beforehand to get it to room temp. Otherwise Jordan gets a chill when it is being infused. The Heparin can be dangerous if given too much BUT we found out that for her size, she can have A LOT more than what she gets through her IV. The Heparin is to make sure nothing clots off in the line.

If you look closely, her baby has "owies" too. See the stickers? They are to decorate her bandages. Is this a sign Jordan has had a bit too much done to her lately??

Jordan is doing great and had another good day. She even asked for Culver's for lunch! Since she hasn't eaten much in the last 2 days, Jeremy and I got her a cheeseburger, fries and a custard. (See-we are working on those calories too)! She ate 1/2 her cheeseburger, some fries and some of her custard so VERY happy we decided to splurge and get it.

Until next time!

Home Again, Home Again Jigitty Jig...

2010-01-28T14:14:00.004-06:00

Ahhh...Home Sweet Home...AGAIN!

We were finally given the ok yesterday to head home. We just had to meet with the Cardiologist (Dr. Edens), Home Health Care (Lori), go to Jordan's Endocrinology appointment with Dr Tansey, along with countless residents, nurses...it's exhausting just thinking about it all.

The day started of "normal" with the resident coming in asking how Jordan's night went. Jorgie Porgie actually slept most of the night except for waking her up to give her Motrin at 2AM. They didn't have labs drawn since now she's a bit anemic. They aren't concerned about Jordan being anemic since they've been drawing so much blood lately. Still something to keep an eye on so they have told us to start vitamins with her. Just another thing to take :-) BUT we were given the new that IF everything went well that day, we could go home that afternoon.

Things were really clicking along for the most part. We did notice Jordan's incision had opened up more. When Tina checked it out, she told us it was superficial (on the surface) so not to worry too much about it. We can't pack it since it isn't that deep and we can't put more glue on it. Since it isn't a sterile wound anymore, they would be just trapping germs and bacteria in the wound by using the glue.

We had an endo appointment that took almost 6 months to get originally so Dr. Edens told us we could take her down to the clinic for it instead of making us reschedule it. Thank goodness!! It was a bit awkward taking an IV pole attached to a little girl in brown boots and Tinkerbell Pjs but hey! It worked. The IV pump only went off a couple of times :-) As for the appointment itself, we are back to a wait and see holding pattern. Dr Tansey thinks Jordan's size issue is more of a weight issue. He showed us 3 growth charts-one for the height, one for the weight, and one for the combination of the 2. She's in the 8th percentile on her height (she's grown a lot in the last couple of months!) but off the curve for her weight and with taking inconsideration of both her height and weight, she is well off the curve. Right now he thinks it more nutritionally based so now need to pump more calories into the girl! Butter, peanut butter, breakfast shakes...anyway we can get more into her the better. He talked about Turner's syndrome but said it usually happens the opposite way (the kids grow until age 3 and then taper off). He wants to do a thyroid test again before really making any decisions. We will have it done the next time labs are drawn. He didn't want to put her through another finger poking and since she's already anemic, he just held off. We go back in July.

The Home Health Care nurse came to meet us at the hospital too! She gave us a crash course in what we will have to do for Jordan's IV treatments. They are REALLY simple!! Here I thought it was going to be a big IV pump that we've been dragging around with us for several days and it's just a little "grenade" or balls of fluid that is pressurized! No batteries, no pumps, no electricity...just saline and heparin syringes and the IV balls. Jordan even got a little backpack to be able to carry it around in so we can leave if needed. My fears relieved! Lori gave us some supplies to get started and set up a time next week to come and check things out.

SO by 5:00 we were finally on the road to home. Nothing felt so great! The sunset was amazing and I just felt peace. Until 45 minutes later...

We had to have Jordan's dressing changed before we left the hospital. While doing this, her site started bleeding. I could tell the nurses were surprised a bit but really didn't do much about it (at least it seemed to us). They just put some Tagaderm on it and sent us on our way. Well, 45 minutes after being home, we were checking her gauze padding that covers her incision, we found her arm to be pretty bloody under the Tagaderm! It was pooling so bad that it was traveling up the outside of the tubing from the PICC line and started to get on her PJ top. Needless to say FRUSTRATED by this because we knew this is cause for ANOTHER trip to the hospital. We called in to let them know we were coming but then called a friend who is a doc at the U too. She made some phone calls for us and got the PICC nurse, Barb, who put it in originally to stay and re-dress the line again. Barb I'm sure had a long day and was currently in the OR putting in another PICC line. We had to wait about an hour to have Barb change the dressing again. We are so grateful she was able and willing to do it!!

We've come across some really great people during this experience. While I feel some people think of this as just getting tonsils out and what's the big deal, others have really stepped up and helped us out! I know I've said thank you a lot of times but we really can't say it enough!

Ready to walk the halls. I OWN this place! Just ask the nurses!

Hanging with my bros and Daddy! What is this tube for??

This time around Jordan had part of a coffee cup covering her IV to protect it. We put stickers on it to spice it up a little bit! She also had a board and a burn sleeve on it to help protect it even more.

Drunk Jordan Returns...She's coming out of sedation from her PICC line being placed.

We are OUT OF HERE! Let's GO!!

So excited to go home, I can't even stay awake...zzzzz.....

Thanks for checking in on us!!

Until next time~

Tracey

The PICC line is in!!

2010-01-26T22:08:00.003-06:00

WAHOO!! After 5-6 attempts to put in a PICC line (2 yesterday, and I think 3 today if not 4), the line is in! I have to admit it was kind of interesting to watch them do it. Our friend, Holly, was there to admin the anesthesia along with Dr. Thomas. The nurse putting in the PICC line had some issues along the way-finding a vein to do the trick & the line hitting a point and kinking again were the 2 major ones. Finally she went above the anticube (found in the inside fold of your elbow), and found a vein that worked. I felt grateful she didn't give up on Jordan's right arm since she is left handed. We've noticed with the IV in her left hand, Jordan doesn't really use it! It might as well be broken :-) And getting her to eat and drink with her right hand is quite funny. Try it with your opposite hand!

After Jordan woke up from her procedure, she was a happy child. Guess what she asked for 1st! FOOD! This girl hasn't really been eating well the last few days and now BOOM! She wants to eat EVERYTHING :-) She also got Jeremy to walk all over and ride the elevators when I went home to get the boys. Do you think she even had a nap today? NOPE! She was going strong until 7 when Jeremy took the boys home. Then she crashed and has been out ever since.

Jordan's blood culture is still negative which is a huge relief. When we first thought she had an infection, Trudy prepared us with at least a 3 day stay to see if the culture would grow out. It did within 24 hours. Less than 24 hours after the 2nd culture, the docs claimed it was negative and was ready to put in the line. Wait a minute...doesn't it take 48 hours for it to grow out? The big thing with putting in the line while her blood is still infected is that the bacteria could attack or sit on this foreign body! With that SO CLOSE to her heart, I was really worried about the timing. Maybe God heard me and is why we didn't get it in until today :-)

Also-Her white blood counts are now 7,000 instead of the 37,000 which is where it was originally. The can also test the inflammation which was 17 (I guess this is high?) and was worried that the infection had also spread to her breastbone. It is now 3. They will send kids home when it is 2 or below so MAYBE we could be sleeping in our own beds tomorrow night!

Now to learn about this IV treatments! We picked a home health care company that will teach us how to do it before we leave the hospital. Today, a nurse explained how to flush and hep lock an IV. Oh am I glad that Jeremy will be there to teach me at first! By the end of this, I'm sure I'll be a pro :-) 4-6 weeks every 6 hours!? That's A LOT of treatments! Dr. Edens, Dr. Scholz, and Dr. Gomez are all looking at the longer time (6 weeks) due to the possibility of the bone infection. Sad thing is Jordan may not be able to go back to preschool during this time because of trying to keep her calm and not get too rough with the PICC line in-she's 3. That in and of itself could be a challenge!!

We have our endo appointment tomorrow too. Who knew we would be here already anyway! Dr. Edens said that we could probably just head down to the clinic or reschedule it. It took us 6 MONTHS to get this appointment!! We are NOT going to reschedule unless ABSOLUTELY necessary! They have already started some of the testing with testing her growth hormone (and whether or not she is deficient) and took x-rays of her hands to check her growth plates, etc. We'll hopefully find out more tomorrow.

Thanks again for all the prayers and good thoughts!! There are times I get overwhelmed with gratitude when I think about everyone who has helped us in some way or another. The prayers, meals, visits and emails checking in on us has been a blessing!

Later!
Tracey

**Jeremy took his laptop home today so I wasn't able to load pics :-) Those I hope will come tomorrow!

It's been a good day with a minor setback!

2010-01-25T23:27:00.005-06:00

Sorry I didn't update yesterday! I took some much needed time to chill. As a friend put it a week ago, we've been playing the post-op shuffle (2 steps forward, 1 step back). It's exhausting! We've been mostly moving forward though so that is great!

Yesterday was back to being a downer day for Jordan. Dr Atkins came in and had compared it to what she saw Friday night. Jordan slept a good chunk of the day with not waking up until about 11:30AM and then asleep again at 1:30PM until 6-6:30PM. 1 step back. We met with the infectious diseases doctor who knocked down her antibiotic from the big guns (Vanco) to Nafcillin. 1 step forward! It seems to be doing the trick as Jordan's blood counts continue to go down and her 2nd blood culture has come back negative. Another step forward!

Nana came to see Jordan again on Sunday too. Since she was sleeping anyway, Nana told me to get out of the room for a bit. I ran up to the Patient Library to get some new movies for Jordan and some magazines for me. The Patient Library isn't overly huge but seems to have a good selection overall.

Travis and Ashley came to visit that evening too. Travis tried but didn't get much of a smile out of here either! That is actually a rare thing! Travis gets everyone to smile. The guy is crazy!

Today Jordan has been more herself for most of the day. She sat and watched Cinderella in her Daddy's lap this morning. It was priceless to see but did I pick up the camera to catch it...nope. Wish I had! We had another ECHO this morning too which came back with nothing new. It was done to see not only if she has any pericardium effusion (blood pooling around her heart) but also to see if she had any infections in her heart from the staph bug. Another big step forward!!

Kristy and Ben made the trip down to visit Jorgie Porgie. Unfortunately they weren't able to see much of Jordan! Between doctors checking in, her ECHO, and the weather itself, they were gone again by noon. It was great to see them, just wish they would have been able to stay a bit longer :-)

We found out her docs were ready to put in her PICC line today too. Jordan was scheduled for 3PM which meant that she couldn't eat at all until after the procedure. I was a bit nervous about this since blood cultures can take up to 48 hours to grow out. She had just had a culture done the day before so we hadn't hit that 48 hour mark. After talking to several different docs, I felt a little better about it but still a bit nervous.

We talked to the social worker about which company to use for the meds and the rental of the IV pumps. Also found out from the Infectious Diseases doc (Dr. Gomez) that we are looking at doing meds by Jordan's PICC line for the next 4-6 weeks every 6 hours! Jeremy will be there to help this week and probably next but after that, it will be me at least during the day. This could be interesting!

3:00 rolled around and we took Jorgie Porgie to the exam room to have the PICC line put in. Long story short, even after 2 doses of Versed, the poor girl was just not having it! The PICU nurse who was putting in the line could not get it in after 2 pokes. She kept trying to thread it through but the line kept kinking up and not getting past a certain point. After trying it twice, she called it quits and told us it would have to be tomorrow when Jordan can be knocked out. The nurse didn't know if it was because Jordan was so upset and her veins clamped down or if they were hitting a valve. Regardless, the poor girl was so upset and exhausted from it all, Jordan fell asleep shortly after getting back to her room and continued to sleep for 2 hours!

SO tomorrow should be the day. I talked to Holly (who actually used to be our neighbor!) from Peds anesthesia about the drugs being used, answering some of Jordan's health questions, etc. We are hoping that if Jordan is knocked out, she won't be as upset and then her veins will open better to get the line in. They are squeezing us in so hopefully this will work. Once we get the line in, we could be talking about the h-word within 24 hours!

There are a few things yet to hurdle before the h-word happens. One is the inflamation levels in Jordan's blood draws. They are going down, but Dr Gomez wants it at a certian level before we leave. Also, she needs to be fever free and eating/drinking. Hopefully she'll cooperate!

I will hopefully get some pics loaded tomorrow. Right now, I'm having issues getting them on right now! AGH!

Until later!

Some answers ... more questions...

2010-01-23T23:22:00.004-06:00

Just a quick post...

Today we found out that Jordan is on the antibiotics for the long haul! The MRSA test came back negative (YEAH!!) however it is a staph infection and the blood cultures started to grow so now it is in her blood. We don't know the sensitivities yet though so she's going to stay on Vanco. Simply, finding the sensitivities requires testing the bacteria against different antibiotics and seeing which ones fight it and ones that are resistant to it. We will be meeting with the infectious diseases doc tomorrow to find out what the next step is to fight this infection.

Good news is Jordan got up today and walked around with her Daddy and brothers. And when I say walked around, I think we've covered every inch of the halls of this unit :-) We found a 2nd fish tank and that this unit just goes and goes. Luckily a lot of the beds are empty!!! I find that to be a GREAT thing!!

Thanks all for the prayers and good thoughts. We are feeling them!!

Tracey

Opps...so it WAS an infection!!

2010-01-22T23:22:00.004-06:00

We have had an interesting couple of days to say the least at the Snyder house! The first couple of days this week were spent watching movies. We've seen Monsters, Inc., Tinkerbell, Shrek, Aliens in the Attic...the list is endless. Trying to keep a 3 year old down to even rest has been a task in and of itself! Overall she has been a non-stop kiddo who if you didn't tell someone she just had open heart surgery, they wouldn't have been able to tell!

Wednesday night we noticed some yuckiness coming out from the bottom of Jordan's incision. It didn't look to alarming but put some triple antibiotic on it with a bandaid and she went to bed. Jordan hadn't acted any different that the day before so really didn't think much of it.

Thursday morning things started to change. Jordan woke up cranky. Now there are some days that she just doesn't wake up happy and takes a bit of time to really wake up. I had just brushed it off to that. She started to act "normal" for a couple of hours but then really started to crash. I noticed her breathing rate had increased, she was agitated and couldn't get comfortable. Poor girl couldn't even stand up straight! She kept saying her tummy hurt but was pointing to where her chest tubes were located. I finally paged Jeremy to tell him that I was either taking her into the hospital to have her checked out at the clinic or to her GP. Jeremy had already talked to Trudy, one of Jordan's awesome nurses, to tell her about the incision so after hearing about this she had us come in to have some tests done.

We started off at the clinic with chest x-rays, blood work, and another ECHO. Jordan did really well for her chest x-rays-listened to the tech and even held her hands above her head for one of the side shots. She even laid really still for her ECHO! We may be able to do un-sedated ECHOs in the future! That could be huge for her considering it can take us anywhere from an hour and a half to 2 hours to get her to finally give in and go to sleep when she's being sedated!

Anyway, after everything was said and done, it was decided Jordan had a viral infection. Dr. Davis and Tina had looked at the incision and thought it looked good. (By then it was dried out and nothing was coming out of it when poked and pushed). Her blood work had come back with the white blood count being high, but Dr Edens couldn't pin-point it to anything other than it being viral.

We went home and tried to get her comfortable again. When she was awake, she either was crying, whimpering, or grunting. It didn't happen easily but finally she crashed and was asleep for most of the night.

This morning the story changed. When Jordan woke up, she was again crying. I went in to check on her. She didn't want me to really move her but when I noticed she had wet the bed, I had a feeling something was up. Jordan hasn't wet the bed in a pretty long time! When I went to move her and try to get her cleaned up, she had a look of agony on her face. And that is when the draining started. The bandaid from the bottom of Jordan's incision was soaked! It was constantly trickling down her stomach. She seemed to be in a lot of pain too. I immediately called Jeremy and Trudy.

We came into the hospital around 9AM this morning. Dr. Edens swabbed the site for infections including MRSA**. We won't know anything until the cultures have been grown out which will take 2 days. Jordan started on Vancomycin this afternoon around 1 and will have a dose that takes 90 minutes every 8 hours. Because of this drug, the IV sites don't last long-around 36 hours-so we might have to have another IV stuck. It took 3 times and a PICU nurse practitioner to get the 1st one in so it may cause Jordan to get a PICC line. These lines are meant for more of a long term IV use and could cause some discomfort. We are hoping the one in her hand lasts as long as it needs too so Jordan doesn't have to get one!

**MRSA or MERSA is a staph infection that is ONLY treated by Vancomycin. Vanco is also a high powered drug and really a last resort drug according to Wikipedia. This could be hurtful to her kidneys so she will be closely monitored. Once her test results come back and it's not MRSA, she will be taken off of it and will be put on something else.

She is comfortable right now. Jordan is still on her Motrin around the clock every 6 hours, Lasix twice a day, Tylenol every 4 hours (to help get to the next dose of Motrin and to control the fever), and Pepcid to help with controlling the stomach acids from her Motirn. Her appetite isn't the greatest and her activity level isn't the highest right now. We are also trying to get her to drink more fluids but also on an IV for them.

Most of our day was like this...

When Nana came, it was like this for a bit!

We got some smiles and activity out to Jordan when Nana came. It was good to see a smile on her face where it had been missing the last couple of days!

We believe this all started because some Tagaderm had taken off some glue off the bottom of her incision far too soon. (The glue is there to protect the incision along with being used instead of stitches on the surface to help with the scar). We were concerned originally when we saw it being put on the glue but just let it go. I really don't thing THAT is going to happen again!

Thanks again to everyone for your continued prayers and concerns. It has definitely been felt here!

About Day 6 and bustin' out!

2010-01-18T12:26:00.006-06:00

What a crazy day! Very up and down emotionally which ended on a good but exhausting note!

Around 3AM, Jordan's night nurse came in to tell us that if Jordan didn't go potty, she would have to be cath'ed. She had 2 doses of Lasix and hadn't gone potty for over 12 hours. SO knowing being cath'ed would involve a lot of screaming and crying, I convinced Jordan to at least try. She ended up going and avoided the cath! YEAH! However, because she had not gone for so long, they decided she was dry so hooked her back up to an IV for fluids. And here we go...on Lasix for having too much fluid in her little body, and then adding fluid because they thought she was dry...Then there is the puffiness of her face and belly yet. Luckily, her weight (11.7 kilos) wasn't too far off her pre-opt weight (11.4 kilos) so it could be she just needs more time and more activity. We will just have to keep an eye on it.

When the docs came through for rounds, I really wasn't surprised when Dr Moriss had said they would have a chest x-ray to check for fluid around the heart done on Monday morning and then we could go home. Since Dr Law had mentioned Saturday or Sunday as our going home dates, Jeremy had asked why it got moved to Monday. After some discussion, Dr Moriss said that we could go home Sunday after the chest x-ray was done.

While we were waiting for the chest x-ray to be done, my Uncle Curt and Aunt Pam came down to visit. It was great to see them and perfect timing for us :-)

The chest x-ray was done after lunch and came back normal. We were literally getting ready to go-bags packed, balloons gathered-when I felt Jordan's head. She felt a bit warm so wanted the nurse to take her temp. Yep-she had a fever! AGH! She had Motrin and Tylenol in her system but it was still 101.2. Now the resident told us that was a deal breaker and we are going to be staying the night. A lab was done to see if Jordan is fighting an infection. While we were waiting for the tests to come back, we found out the blood they took clotted and had to do it again! REALLY!?!? Jordan had to have her finger poked AGAIN. She definitely wasn't liking it!

Wasting time in the playroom until the tests come back - We love Hungry Hippo!

After we got the final tests back, the resident told us we had to stay "for sure" especially since her fever kept going up! By that time, it was 101.8-again after having Motrin and Tylenol in her system. It was 6:00. All of this had taken 8 hours and we were here for another night! I wasn't too upset because if she was still puffy and now had an unexplained fever, I'd rather be at the hospital than put her through the stress of coming back because of some infection or complication. We said our bye's to the boys and Jeremy for the night and was getting cleaned up since we didn't really have a chance to earlier in the day. Shortly after they left, a different resident and Dana (Jordan's day nurse) came in and said we could go. Cardiology was ok with letting her go home since we lived close and all they were going to do is watch her with Tylenol and Motirn. While I was happy to go home, I was nervous. Why all the back and forth!? First we are staying, then we're not, then we are, then we're not....very frustrating and nerve racking as a parent! This isn't like trying to decide to go home from a hotel. It's a hospital and there's a reason why we are here. So for them to decide it's important enough for her to be here and then not all day long, made me EXHAUSTED!

We're going home? YEAH!!

SO in the long run, we got to go home. If you would have even asked me Thursday if going home Sunday was possible, I would have said been hesitant but would have said maybe. Then the flip switched in her Saturday and Jordan started acting like Jordan. She still has her moments but it's only been a week since her surgery!! There are other times when we have to tell her to take it easy. She's back to the 3-year-old attitude -"I do it myself!"

Jorgie Porgie is on Lasix (2x a day) for now along with Motrin (every 6 hrs) and Tylenol (every 4 hours). If her fever gets higher, then we are suppose to take her back in through the ER and then she'll "probably" be re-admitted. Hopefully we won't have to put her through that!!

I'm home!! There's no place like it!!

Please keep these kiddos in your thoughts and prayers!
Logan Jacks (cp: loganbear) He has had a bit of a rougher time than Jordan recovering from his surgery on Thursday. The docs think (after Stef and Ryan keeping tabs on his symptoms!) he has Pericardial effusion. This is when the sac around the heart is either inflamed or blood is pooling in it. When a chest x-ray was done, they noticed fluid surrounding his ticker. It will possibly add 3-4 days to his stay. He was doing better when we left yesterday but still pretty weak.

It was great to have them as neighbors! I will miss seeing Stef and our chats every day!! Thinking of you guys!!

Derrick Carter (http://carolinacarters.blogspot.com/) He is in surgery right and just got the update that he is off bypass! Yeah!!

Thank you for all of your support and kindness!!! We can't ever repay you for everything you all have done for us.

Right before bedtime...like it should be :-)

Until next time ~and it may not be tomorrow ;-)

Tracey

Day 6- WE ARE HOME!

2010-01-17T20:04:00.001-06:00

I will post about today's CRAZY DAY but for now just know that we are home. Now to snuggle in and enjoy being home :-)

Thanks to all of you for your good thoughts and prayers! They worked!

Tracey

Day 5

2010-01-16T21:06:00.006-06:00

Today has been the most exciting day yet!!

Our adventure or our game...However you look at it, we are even closer to going home!!

When the cardiologist (Dr Moriss) and fellow (Dr Agoudemos) came in today, we discussed what we need to have Jordan do before we can go home. It was nice to see Dr Agoudemos since she has seen Jorgie Porgie a few times for appointments and had followed her with her 1st surgery. There are 3 things she needs to do before going home-getting up and walking around, eating and drinking, and peeing some of her excess fluids. They decided to change up her pain meds too. Now we are just on Tylenol and Motrin. While I was a bit hesitant in taking Jordan off the Lortab, I was willing to see what this would do. She still shows pain but in Jordan style, she doesn't let it get her down. The kicker is even though she shows it on her face, rarely does she show it in her stats. Her heart rate rarely goes up nor does her breathing rate. She SOOOO does not want to take medicine that she just tells us that she doesn't have ow-ies. Frustrating!

Grandma and Grandpa visited us. Jordan spent the time in bed but was at least happy! It's been awhile since we have steadily seen her smile and giggle! Ahhh...what a sound it is too! I love it!

After Grandpa and Grandma left, I was able to get little miss out and about. Angie, her day nurse today, gave us a traveling pack (this way she can still monitor Jordan's stats). Once we got things connected and it was reading on her computer, we hit the playroom. I have to admit, I was a bit hesitant in having Jordan play in there. After all we are in a hospital surrounded by sick kiddos. However, it was great to see her playing with the kitchen and "fixing" dinner. Soon she found the bikes and starting to ride one all over the unit! She couldn't wait until Daddy came with her brothers to show them her bike and the playroom. It was great to see considering yesterday, she was screaming, standing at the edge of her bed, and begging to be put back into bed!! Up and around - Check!

Jordan has eaten better today than she has in the days past. The nutritionist was here yesterday helping us with her weight issue. On of the things she suggested was a high protein, high fat, high calorie shake. These can be chocolate or vanilla and are cheeper than the Pedilite or Pedisure. The nutritionist has asked these are delivered to her as snacks but they have become more of her meals. Well...if eating about 10 small bites constitutes a meal...She has also eaten a quarter of a graham cracker, 3/4ths of a cheese stick, 3 chocolate donuts, and part of a choc chip cookie. I claim that Jordan's diet has a baseline of chocolate and while Dr Moriss doesn't really care for that, I'm just happy she's eating. The nutritionist is on the same page with me too :-) Eating-1/2 a check...

Drinking has also been a challenge. While she's getting better, she still has only had a carton and a half of milk today and a couple sips of water.

One way of battling her fluid issue was to increase her Lasix to have a dose put directly into her IV. The also took off her potassium this morning hoping that by taking Jordan off her fluids, it would make her drink more and therefore make her output increase. Well, even though I am no doc, I think it backfired. They put her Lasix in her IV around 2pm. She hasn't peed since then. It will be interesting to see what she weighs tomorrow. This could be our stickler! Peeing excess fluids-no check....

Poor girl was so energetic today that it took a bit to calm down and take a nap. Completely opposite as the last couple of days, today no naps were taken! Since Jordan was seeming like she was itchy again (she's rubbing her nose and eyes like CRAZY), she got some Benedryl tonight and finally fell asleep around 6:30. Other than her meds around 8:30, she has been asleep ever since. I really hope she sleeps through the night.

We found out a great surprise this afternoon too! One of Jordan's heart friends, Logan, was going to be our next door neighbor! He was moving down from PICU after having surgery on Thursday. I think it was a surprise to his parents since even though he has had 2 surgeries, Logan keeps them on their toes and has long stays in the PICU. Stef came over to visit after her little man was settled in. Oh was it nice to see another heart mom. When she came over, we both vented and gave each other hugs. Later, when I was out roaming around going to grab some grub downstairs, I ran into Ryan (Stef's hubby) who offered to grab me a sub. THANKS RYAN!!! It was yummo!!

LOOK! Only leads!! No more IVs!!

Jordan is starting to get her groove and smile back!!

I need to say a quick thanks to Help-a-Heart too. They supplied Pitas from Pita Pit yesterday (Friday) for lunch! YUMMO!! They have also sent a Tinkerbell balloon to her which she loves.

Until tomorrow~

Tracey

Day 4 The game

2010-01-15T23:56:00.004-06:00

It's already Friday!? This week has gone by pretty quickly!

Today was pretty uneventful other than the temper tantrams and puffiness. Yep-Jordan's getting stubborn-imagine that!! And a game was played-Jordan Vs. Mommy and Daddy

Round 1-The Right to retain fluids-

I had noticed yesterday before we left the PICU that Jorgie Porgie had started to get puffy and swollen. Her right eye was swollen and by the end of the night, the right side of her face was a bit puffy. Dr Law started her on Lasix and got her to go potty a BIT more. Hoping this would "fix" the problem, I was reminded that Jordan is the leader here and puffed her stomach out. The resident came in after I noticed this, but proceeded to tell me that all was fine - that her stomach was soft and had good bowel sounds. Sorry but the girl's deep belly button is all but missing! Dr Law came in this morning to do rounds and immediately said that he dind't like the way she looked. I thanked him for making me feel NOT so crazy anymore by saying that! She's on more Lasix now and trying to lose the water weight. Not so much today but hopefully she will lose more.

Jordan - 1, Mommy & Daddy - 0

Round 2- Getting up to walk-YEAH RIGHT!

Yeah right! This girl wanted NOTHING to with getting up to walk! We tried just about everything. We had taken her to the potty and had her walk back along with her going out to nurses station and have her walk back to her bed. She threw a COMPLETE temper tantram which kind of served the purpose! She ended up stomping her feet and well shortly everything but throwing herself on the ground. What ever gets the juices flowing baby! It is hard and just sad to see her stand beside her bed and just "want my bed, Mommy". The temper tantrams and wanting to go to bed just aren't things she usually does or wants.

Jordan 2, Mommy and Daddy, 0.

Round 3- Echo.... Echo

At around 2:15 or so, an Echo was ordered. One is usually done prior to leaving so again 1 step closer to bustin' out of here! We weren't given much notice so didn't get a chance to prep Jordan with what was about to happen. On top of it all, she was asleep and never wakes up well when she's not ready to be woken up. We had to carry her down to Peds Cardio to havce it done. Once we got there, Jordan really let us have it. She calmed down after a short period of time and fell asleep during the Echo. This allowed the tech to get a great look and she wasn't even sedated this time :-)

Jordan - 2, Mommy and Daddy - 1

By the end of the day, our little girl is just plain pooped. She was out for most of the afternoon and evening. Even when Nana and Becca came, she really didn't do much but say no and sleep. Jordan ended up getting the itchy nose thing going on so has had a dose of Benadryl. Hopefully this will help knock her out for the night and get some good, solid sleep.

Tried to bribe her to get out of bed...yeah didn't work but then also couldn't get the boots off without a lot of crabbiness...

Until tomorrow!

Tracey

Day 3

2010-01-14T22:12:00.003-06:00

We are on Day 3 of our adventure. I say adventure because this has definately been one. We have had surprises, excitement, and only a few setbacks.

Jordan is chest tube and pacermaker wire free! These were removed around 10am. We are hoping that now they are removed, she will be more willing to get up and move a bit more. Trying to walk just even to go to the bathroom has been challenging. Right now she takes 2 steps and then looks at one of us to pick her up. Any of you whose kiddos have had surgery know picking them up is a challenge in itself since you can't pick them up by under their arms for fear of hurting their sternum and the incision! Instead you have to scoop them up. Anyway, after she gets back to bed from her little trip, she's plain exhausted and is out for at least an hour.

This morning we also found out we were moving to the floor!! I was a bit hesitant but know that we are just 1 step closer to going home. We were down on the floor by 2pm. The downfall is now we have to "share" our nurse. In the PICU, Jordan was one-on-one with her own nurse. It was nice since I would start talking to her and didn't feel like I was intruding or taking her away from someone else. We could almost always find her just outside Jordan's door if we needed anything. Not so true on the floor. Jordan doesn't need as much now though either. Monitoring, pain meds, and help going to the bathroom is about all we need right now. She's been sleeping though most of the day anyway, but if she wakes up more and gets to walking around, we might be able to hit the playroom. Well maybe play in her room with her new toys and colorbooks......

Because of the move, we had someone pick up Riley and Drew from school and hang with them for the afternoon. Around 5, Jeremy went to pick them up and took them to BWW to eat some wings. I feel bad that I can't be there with them but I feel I need to be here. They understand that I need to be here and if it was either one of them, I would be here for them too. This just stinks all the way around. I did get an email from Drew's teacher saying that he seems to be doing well with the whole situation. I've talked to Riley about it and even though there are times for him to think about what is going on with Jordan, he knows that I have to be here for her. I don't think being able to go to a new friend's house along with going to BWW has hurt at all either!!

When Jeremy came back with the boys, I was able to stop by the Heart Friends meeting. It was nice to just walk down the hall to the meeting knowing that if I needed to, I could be back in Jordan's room within seconds. I was also surrounded by people who knew what I was going through. After the meeting was done, Jordan was showered with gifts. It was very sweet and really meant a lot. Their kids even got into it and made pictures for Jordan's room. They are now on her wall for all to see :-) Thank you Ladies!

Jordan has had a bit of a rough night so far tonight. After Jeremy took the boys home, we have tried to give Jordan some pain meds. She is off now off Nubain and now on Lortab (Tylenol and Hydrocodone) and Lasix (diuretic). She decided it wasn't all that great and vomited it back up. Then we noticed she had a pretty bloated tummy. The resident came in to check it out and is going to keep an eye on it.

Jordan also started Lasix tonight. Even though yesterday she needed fluids because she was dry, today she started to retain water and getting puffy. I noticed her eye was puffy this morning and by tonight, her left side of her face looked a bit puffy. The Lasix should help this and also make Jordan go potty more!

I have been really overwhelemed with the support and gifts this time around. Don't get me wrong-the last time Jordan had open heart surgery, we had support. This time feels really different though. We always expect our family to be behind us-after all it is their grand-daughter or neice that we are talking about here :-) Our friends have really stepped up too! We have people who we didn't have in our world 2 years ago, offering to pick up Riley and Drew from school, meals prepared for us, gifts for Jordan and pictures to put up on her wall in her hospital room. We can not say thank you enough! Everything you have done has help us be able to concentrate more on Jordan's recovery!

Stats look great while sleeping!

Chest tube free and the tell-tell tale of CHDs present in our baby's little ticker...Dori is going to look over her tonight!

Until Tomorrow's adventure,

Tracey

Day 2

2010-01-13T22:42:00.008-06:00

Oh my goodness! It is amazing what happens when a poor little girl gets some sleep!

The night didn't get better until around 5AM! Our poor little baby just couldn't go to sleep. She was good for the first 15-30 minutes of her dose of morphine, but shortly after that amount of time, she just couldn't get comfortable and acted like she was in pain again. After our constantly asking why not just use Nubain for her pain, FINALLY at 4:30 they gave it to her. And what do you know? By 5, she had been out and more comfortable. Jeremy switched with me and watched over her. I was finally able to get some sleep then too.

Believe me, people heard about not giving her Nubain earlier too. Don't mess with our baby! We do know a thing or two about how she reacts and how her pain can be treated. We weren't lying that she just gets ticked with morphine!

The day today was good though! Even though she slept through most of it, she was able to lose her J-line (**I had been calling this a PICC line so I stand corrected), Art-line and her catheter. Yahoo! More and more things for her to not have to move around and be hooked too. We are having issues with her urine output but pushing more fluids so hoping that will help.

Another EXCELLENT thing that happened today was Riley and Drew were able to make Jordan smile. TWICE! She hasn't smiled at anyone else yet so it was nice to see her do it. Hopefully we will be seeing it more and more as the days go by!

Well-I wasn't going to post so late tonight but Jordan had woke (yes I did get some sleep tonight) me up and now am wide awake. I'm going to try to get more rest now but here are some pics!

Trying to catch some zzzz's before the big day. Yep-we cheated and let her sleep with us. Welll...I let her sleep with us and Jeremy just didn't fight me this time :-D

"Daddy! Let me paint your face with my Polly Pocket!" Waiting in Day of Surgery for anesthesiologist to come get us.

Shortly after Jordan came back from Surgery. I thought she looked pretty good. That cordal block did well for her I think!

And tonight! She's happier now that she can move around without laying on her J-line!

Nighty nite all!

It's 2AM!

2010-01-13T02:02:00.004-06:00

I'm sitting here in the dark wondering...It's 2AM! Why am I still awake? Why are we here? Why do we have yet new worries now on our plate?

Jordan is waiting for another dose of morphine but is snoozing now. She is just plain pooped but can't stay asleep. We know her stats are good and she's not on any meds for her ticker but she's on morphine every 2 hours. It's frustrating because she just doesn't know what she wants and we can't really tell if she's in pain. AGH! She doesn't want medicine. Good thing she's got what...I think I counted 10 lines so needless to say PLENTY of ways to get it into her system with out her knowing it. For her lines, she has:

1. 6 in her neck. This is her PICC line and goes directly to her heart. The best way I can discribe it is 2 "panels" of 3 ports (I don't know if this is the right terminology but I think you understand what I mean). She has her blood work drawn here and her morphine put in here.

2. An IV in 1 hand. Here is where she's been getting her antibiotic.

3. An IV in her other hand. Doesn't lead to anything right now.

4. She also has an artieral line in her wrist. This has 2 ports.

She's been definately needing the O2. We tried to start getting her off of it because she just wasn't having that canula stuck in her nose. When she has it on her O2 is in the mid to low 90s. When she's off, it definately dips in the 80s and when she's mad, it dips even lower. I think I've seen it as low at 68 now but it jumped back up fairly quickly. So instead of the canula, she's getting blow by. This is where they let the O2 run from the mask into her face. While she still gets a bit annoyed with it, she's at least not trying to rip it out of her nose!

She is also has leads on that constantly tell us her blood pressure, breathing rate and how deep her breaths are, venous pressure, heart rate and O2 rate.

The other news we heard today is that Jordan's journey with CHDs is definately not over. What we thought was a membrane was actually more scar tissue than a membrane. Dr Davis was able to cut most of it out but it is still narrow leading to her aortic valve. THEN there is the aortic valve. Dr Davis has told us that she has a bicuspid aortic valve. Typically this means that she has 2 leaflets instead of 3 (the valve looks like the Benz logo normally). After talking to Dr Scholz, we found out that it is more of a hybrid of a bicuspid valve. It is more at the outside of the leaflets where it is fused together just a bit. SO again-more of a hybrid problem for her like her AV canal. But definately more of a worry for me.

The good news about it is that it isn't bad enough where we will have to restrict her activities and "normal" everyday life. She still won't be on any medications for now either. It may need to be replaced still later down the line but who knows when. That is in Jordan and God's hands. We will know more as the week unfolds too.

Well she is starting to stir again! I will post again later.

Update #...oh I forget...

2010-01-12T22:50:00.002-06:00

Jordan is doing pretty well. We are working with the doc for her pain meds. Before when she had morphine, it was a LONG 1st night. We talked to the docs about it this time around and decided she would start off on Mophine to see if maybe she has grown out of it. She has it about every 2 hours so hopefully we can keep on it. If..ok more like when...she gets mad, boy she lets everyone know it. Her stats go way up, alarms go off, her O2 goes down so...she quickly rebounds when she's not mad anymore.

Problem with Jordan and pain is that she is a stinker! Her pain tollerance we've decided is high so there are times that we don't know if she's getting aggitated from the Morphine again or if she's actually in pain.

She is also running a high fever. Her nurse took a blood sample to culture and is treating her with Tylenol. Her platelets are rebounding and hasn't had any blood transfusions. Her drainage is already starting to turn colors (from a deep red to more of a koolaid color) which is good too. We had another chest xray done but it looks good and is comparable to the one they took yesterday.

I know this is choppy. Some of it is because I just wanted to get it out for our journaling-the other part is I'm just plain tired :-)

Extubated and Doing Well

2010-01-12T14:52:00.002-06:00

Jordan has been extubated already and getting off her meds. She is doing well. We found out some other news but will update more on it later. She looks much better than she did last time so already a huge difference!!

Until later,
Tracey

Update #2

2010-01-12T13:21:00.001-06:00

Jordan's PICU nurse just got a call to go down and get her. I'm taking this as she is off bypass. She will be on the floor in 30-45 minutes.

Update...

2010-01-12T11:45:00.003-06:00

I had taken Peanut to the OR around 8:00. Dr Davis was able to start going though her scar tissue around 10:20. It took about an hour and started bypass at 11:20...

Lord...She is in your hands...

2010-01-12T08:55:00.002-06:00

Yesterday was a hard day. We brought Jordan in for her pre-opt screening and all the feelings came rushing back. The thoughts of her coming down the hall with her vent, hooked up to so many machines, medications, and the tell tell tale of the day's outcome-the insision down the middle of her chest and the chest tubes hit me like a ton of bricks...

Jordan did really well though until it was 12:30. She was hungry, wanted to go home and we still had to see anestesia. Finally at 2pm we left anestesia but THAT is a whole other story that I'm just going to let go for now...

This morning we arrived at 6AM. By 7:40 the anesthesiologist fellow and attending were talking to us and giving Jordan a dose of something to calm her nerves. She was practically stoned by the time I took her into the OR. She was out within minutes and didn't even fight it this time. Was it the Twizzler chapstick they rubbed into the mask or the medicine they gave her before she left? Hummmm...

I don't have the "luxury" of not knowing what to expect this time. While I don't know the outcome (oh I pray for no complications), I know what she will look like coming down that hall. I know she will have issues coming out of the morphine if it isn't addressed. I know it will be hard to hold her that 1st time with the PICC line in her neck.

I also know that she is in the best of hands here. I know that the Children's Hospital is one of the best in the country. I know Dr Davis will take care of my baby. I know God is watching over her.

Please keep these other kiddos in your heart and prayers this week too...

Logan Jacks - He will be joining us in the PICU on Thursday having open heart surgery. He will be having the Rastelli procedure.

Andrew Huegel - He will be here Friday for a cath proceedure. Please pray that he this turns out well and surgery is far out in the future.

Derrick Carter - He will be having his second open heart surgery on Monday.

Please visit his blog to send some words of encouragement and good thoughts their way!

I will add pics when I get a chance. I'm not using one of our computers so no access to USB.

Until then ... Lord, She is in your hands...

Tracey

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

2009-12-30T13:54:00.004-06:00

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

2009-12-28T14:20:00.002-06:00

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

2009-12-28T13:22:00.003-06:00

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!!

2009-12-26T11:03:00.010-06:00

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

2009-12-26T10:10:00.005-06:00

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...

2009-12-20T22:22:00.004-06:00

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...

2009-12-19T21:45:00.011-06:00

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

2009-12-11T10:36:00.010-06:00

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

I'm Tired...

2009-11-13T13:05:00.005-06:00

I'm tired...

Yep-I'm tired. And not just physically. I'm tired of hearing about another angel earning her wings. I'm tired of hearing about how another Mom has to bury her baby. I'm tired of a Daddy wondering what it would have been like to walk his daughter down the isle on her wedding day. Instead, they now have to plan where to lay her to rest. Instead, they have to "accept" now she is gone and "just move on" the best they can. I'm just plain tired.

I think some people wonder why I obsess over different things. For example, the Children's Miracle network vote not long ago, I had a couple of people say they couldn't wait for it to be over so they didn't get my daily (sometimes 2-3 times a day) reminders to vote for the Children's Hospital. They wonder why I want to raise so much money when they feel they themselves are feeling the stress of the economy right now. Don't they understand? Don't they get tired of it all too?

This is the life of a Heart Family. You get a call or you get an email about a new "Heart Mom" and you do everything you can for her knowing that you've been there too. You may have never met her. You may have never met her family. Yet you have accepted her with an open heart ready to do whatever is needed. Prayers, support, a shoulder to cry on, or to share victories with. Whatever is needed, it is provided somehow, someway!

While it doesn't end with Heart Families, I think we are less heard. CHD research is SO UNDERFUNDED but yet the number #1 killer of children. I am NOT downplaying pediatric cancer. It kills me that kids have to learn about things that some adults can't understand. I am continuiously praying for these kiddos and their families. What I am saying is we need to have CHD research funding equal to pediatric cancer research. I know in our case, we had heard more about chances of Spinal Bifida, Down's Syndrome, Genetic Disorders and Cancer that we had ever heard about congenital heart defects. Some of these same diseases have affected my family and closest friends. No-I'm not down playing them.

What brought all this on? What was the last straw? Last night I was given the news Amelia LeBert earned her wings. She had a heart transplant about a year and a half ago when she was just an infant. She was watching Little Mermaid with her Mom when she left this world. They performed CPR for 45 minutes and could not bring her back.

Kiddos like Amelia are why I'm obsess.

This is who opened my eyes to CHDs and the need for more awareness.

My ways of rasing more awareness are through projects. One of them is Our Letters of Hope for Broken Hearts. While we still haven't heard from Oprah (even after the fiasco with that!), I am excited to report I have been contacted by a local radio station who wants to run 15 second public service announcements on their website regarding CHDs and Our Letters of Hope. They may even mention it on air from time to time! Be looking/listening for it on KHAK (98.1), KDAT (104.5), KRNA (94.1), KKRQ (100.7 The Fox), and 96.5 (WMT). These are all Clear Channel stations. It is a small step but yet a big one!!

Another project I am working on is Cuddles from the Heart. I am doing good collecting blankets for kids in the hospital but I want to do better (when don't I?)!!!! These blankets are for infants to teens so all sizes and styles are needed. They can be homemade or bought from the store. They do have to be new. I am having a blanket making party at my house from 7-8:30 on Tuesday, November 17. If you are interested in this, please let me know if you haven't already. My sister has also started collecting blankets for this project. If you can, please consider what you really would be doing by giving a child a cuddle. Think of yourself when you are sick. I know when I am, all I want to do is cuddle up with the quilt my mom made with love for us. These kids feel the same!

What I'm not tired of? HEARING GREAT NEWS!! One of the kiddos I have been following for quite some had been battling SVT. In common terms you have a very rapid heart beat for extended periods of time. He was an infant when he had his first ablation. His 2nd was just this last Monday. The good news (Ok GREAT NEWS) is his docs could not trigger SVT again after his last ablation. He now has a 1% chance that his SVT would come back!! No around the clock meds, no more monitors, no more...What a great feeling it must be!!

Thanks for letting me vent. Thanks for letting me be tired...

What a busy couple of weeks!

2009-11-08T14:18:00.009-06:00

My goodness how time flies when you are having fun! October had been a pretty busy month for us! First with my sis's wedding, flying out to Vegas, and then adding the boys' football games, our volleyball games, and me working the Hawkeye football games...it definately has been a great month!!

My Halloween Characters-Riley a/k/a/"Albert Pujols" , Drew a/k/a "Ninja Warrior", and Jordan a/k/a "Princess Jordan"

Halloween was great! The Hawkeyes played at home so I had to work but I was able to get home in time to go trick or treating with the kiddos! We stayed in the neighborhood this year and let the boys go ahead of us. Jordan ended up having me go up to each door with her but had no fears taking candy! It was funny!

Trick or Treat, Troy!!

We can't take a pic without doing the "crazy faces"!!!

Princess Jordan

Some exciting news!! Jordan is now on the Johnson County Heart Walk page!! Go to http://www.johnsoncountyiaheartwalk.org/ to check it out. The pic is the one from the calendar shoot and I love it!! We are looking for team members to walk, raise awareness and raise money for AHA with us!! There will be more details about it soon. I have a Heart Friends meeting on Nov 19th where Angelica (Johnson County's AHA regional director) will be talking to us about it.

We are also still taking orders for the Creating Hope Calendar! This is a calendar full of kiddos who have CHDs. Jordan is September! For those who have placed orders already, I will need payment ASAP. Thanks for helping raise money for CHD research!! If you haven't made an order yet and would like to do so, please email me at tracey_snyder@southslope.net! We will be taking orders until November 18 so ORDER NOW!!! Think Christmas gifts :-) Yep-Christmas is coming up!!

We still need blankets for the Cuddles from the Heart project! This is a project started by Stefenie Jacks last year who wanted to bring a smile and a little bit of comfort to kids who are stuck in the NICU, PICU, 2JCP (step-down floor) and the Pediatric Cancer Unit. I have scheduled a blanket making "party" at my house on Tuesday, Nov 17th @ 7pm. Bring your fleece, sissors or rotary blade and make some blankets for some kiddos who are stuck in the hospital. Make a difference!

Johnson County has H1N1 shots. I was able to get mine on Friday. It was weird that I was able to get it before the rest of my family but because my OBGYN's office had them, I was able to get in. The rest of the family will be getting theirs from the Johnson County Department of Health. Jordan would have been able to get one because of her CHD, but I had to do some convincing that the rest of the family needed one too. The girl on the phone finally agreed once she heard that I have infants in my daycare and Jeremy, Riley, and Drew have contact with them. I would have thought that Jordan would have been reason enough for her. Guess not! Anyway, Johnson County Health will be having clinics on Wednesdays with hours in the morning, break for lunch, and then in the afternoon until 4:30. They got 900 shots the first time around and will be getting more when they become available.

Until next time, Stay Healthy!!

Tracey

Reasons to smile!

2009-10-26T10:51:00.011-05:00

Have you ever had a weekend where you looked back and just smiled? I am about this weekend. Nothing life changing happened, no family birthdays, no family or friends over but yet I still smile.

One of my reasons to smile! Last week Jordan was hit with what we believe to be the H1N1 virus. She finally broke her fever on Friday and had a great weekend! Her fever didn't get crazy high and other than the fact she didn't want to take her Motrin/Tylenol, she did well. A bit groggy at the beginning but once her meds kicked in, she told me several times "Mommy-I not sick anymore!" Since she didn't get bad, we didn't take her into the doc so not 100% sure she had H1N1 but her preschool teacher had it. Now I am hoping and praying that the rest of my family doesn't get it!

Reason 2 to smile! Saturday was a great day! The boys had a birthday party to go to but other than that we could just hang out at home. I was even on my way to take the boys, ran into a neighbor who was taking her son to the same place and offered to take my kiddos with her! THANKS AGAIN AMY!! It gave me a chance to take care of "stuff" at home but you know what? I didn't do a thing! It's been SO LONG where we have had a weekend to just hang!

Reason 3 to smile! Anyone watch the Hawkeye football game? Holy Cow what an ending!! I know a lot of people are still taking about it even today. Now those of you who know me know that I wasn't always into football-just wasn't big in my house growning up. In fact, we rarely had the Hawks on when they played. Now it could have been because my parents are divorced and my mom just didn't watch a lot of sports or it could have been because when we did watch the Hawks play, I would laugh and tease my mom for yelling at the TV. Now I am doing the same thing! I know-like they can hear me right??

Reason 4 to smile! Sunday was a full day of games. Jeremy and I had volleyball and Riley and Drew each had their football games. Even though we don't keep score for football, I was told by each of them whether they won or lost. Riley tied and Drew lost. Next weekend will be the end of football for this year but never fear, baseball is here! Yep-Riley will being baseball practice for the Trojan baseball team in November. Luckily it is just on Saturdays for now and only a couple a month. I know he is super pumped about it so again a reason to smile!

Wondering how we did at volleyball? We got beat. Now I could say we were missing a person and played with 5 or I could say that we weren't playing our best game. Truth is we played a great team :-D Not saying they would beat us next time though ...

Reason 5 to smile! At the football games, we had someone who came up to use asking if any of us used to work at Subway. In my high school and college days, I worked at Subway in Independence, Coralville and helped open the one in North Liberty where I ended up becoming assistant manager. The guy who came up to us was no other than Mark, the manager at the time. The memories of working until 3 AM (yep-even when I was 17!) and surviving lunch during football season or boating season came rushing back. We chatted for awhile while watching Drew and his niece play football. I love running into friends and reconnecting who I haven't seen in years. I think it's been at least 10 years since I have seen Mark! I have found him on Facebook so he better watch out!!

One of my biggest reasons to smile is my family in general. We are all healthy, happy and active. I have a wonderful and loving husband who keeps me grounded and is the love of my life. I have 2 boys who are into all sports and keep us busy. I have a daughter who is just one big smile and who has opened my eyes! She has made me stand up and make people aware of the world outside and around them. She has made me want people to become more aware of CHDs. She has made me step out of my comfort zone and do things I never thought I would ever do. I love them all with all my heart :-)

Now...what makes you smile??

Now for a Change I Can Handle!

2009-10-20T14:24:00.007-05:00

Sooo...I have been bitten by the bug and made the switch. Call it jumping on the bandwagon or whatever but with Carepages acting up and others not wanting/needing an account, I figured now is time. Another Heart Mommy designed it for me of which I TRULY appreciate it!! Thanks Stef!!! I'm still learning how to tweak, post - well I'm still learning how to do everything so please know that this blog will be under construction a lot. I do love how it looks now though! You can subscribe to have copies of my blog posts sent directly to your email too!

We have had a lot of fun things happen to us in the last few weeks!! To start with, my baby sister, Kristy, got married!! While the day started off with snow (REALLY!?!? It's only OCT 10!), it was beautiful and was happy to have Ben officially join our family. Boy Ben-watch out! I'm sure Ashley and Jeremy can give some tips to handle us :-)

The wedding was in Marion. I was one of the Matron of Honors, Jeremy was a Groomsman, Riley and Drew were the Flowergirl Escorts and yep-Jordan was the Flowergirl.

Princess Jordan - Thank goodness Nana made her a shall!! Oh boy - it was COLD!

(L to R) Drew, Kaleb, Kristy, Jordan, Ben and Riley

We had a great time and wish only happiness for them and their already expanding family. Can't wait to meet my little nephew/niece in February!

You may have known (especially if you have me as a Facebook friend) that the Children's Hospital at the University of Iowa Hospital and Clinics was in the running for an Ultimate Gameroom from XBox and Children's Miracle Network. I know I annoyed people with the CONSTANT reminders (sometimes 2-3 times a day) to vote their 10 daily votes but it paid off. The hospital WILL be getting one of these rooms. It got quite hairy at the end so thank you to all who voted! It was amazing to hear from my Facebook friends who are in Michigan/Vegas/Arkansas -everywhere outside Iowa-who not only voted for us, but had their friends vote for us too!!! WOW! I hope we don't have to use this room, but feel very grateful it will be there for the kiddos who are stuck there!

Jeremy and I also just got back from Vegas! It was a great trip meeting up with some great friends and family. Jeremy and I had our 1st trip to Vegas 10 years ago and now have lost count how many times we have been there. Jeremy's brother, Pat, moved there last November to be with his girlfriend, Megan and son, Gibson. Megan is the marketing manager for the Freemont Street Experience and takes care of the events and obviously marketing of them downtown. She even can take care of the shows shown on the canopy. Anyone who knows me, knows that I LOVE KISS. Well, it didn't play like it was suppose to on Saturday night at 11pm. Megan made a call and POOF, it was being played at midnight! I loved it!

We went with friends, Jeromy Vance and Julie Kinsinger. They got to go do a ride-along at the Las Vegas Speedway. WHOA! I can't imagine what it was like to go 160 mph near a wall...YIKES! Julie hadn't been to Vegas before (and Jeromy hadn't been there in a long while) and it was nice to see it through fresh eyes again. We went up in the Eiffle tower which is always amazing. Thanks again Julie and Jeromy for inviting us along and making it happen!

It's so FRIGGIN' TALL!

Vegas at Night-You gotta love the lights!

We also got to meet up with some friends we had made the last time we were in Vegas. It was great to hang with Derrick and Nicole again! The next time you go to Vegas, you HAVE to go to the Golden Gate on Freemont. It has great atmosphere, better dealers, and some awesome bartenders. If you see a blond at the bar when you first walk in, just tell her Tracey sent ya!

The most amazing thing happened to us right before we left on Friday. Jordan has been chosen to be the Heart Child for the Johnson County Heart Walk in April 2010! Some time ago we had been approched by the American Heart Association for Johnson County for a short bio on Jordan. I had sent something in thinking she wouldn't be picked. We had an email the day before we left saying she had been picked. I, for once, was speechless. An amazing feat-I know! When Jordan's heart defects were first explained to us, we were told her conditions were on the minor side of heart defects, so when I first got the email-I was shocked!! We feel very honored to have Jordan chosen! So much for Jeremy's desire to be "under the radar"! She's now going to be all over! There will be more info on this soon. If you are interested in joining Jordan's team, please let me know!! We had a great team last year and would LOVE to see it grow!!!

Jordan in her Survivor Hat-Heart Walk 2009

The CHD calendar is out!! This was put together by a Heart Mommy out of Cedar Rapids. She took pics of several kiddos with CHDs and put this amazing calendar together! Jordan is September. The link is on the side bar. Her pic is so cute (I know I'm biased)! Heidi did a great job! We are talking orders with full payment until November 20th. They are only $20 (add $5 for shipping if you like or aren't local to me). They would be great Christmas presents so order many!! The proceeds will be going to the American Heart Association!

One last thing-I am helping Stef get some blankets around for a program she created called Cuddles from the Heart. There is a link on the side bar discribing it more in detail but the main point is that we are looking for NEW blankets to donate to the Children's Hospital. I have a few but would love A LOT MORE! Last year, Stef was able to donate over 300 blankets but I think we can do better this year. These can be homemade OR store bought! Just remember they have to be new! They are going to the hospital for kiddos who are stuck there and need just a touch of home with them as they are struggling in the NICU, PICU, 2JCP, and the Pediatric Cancer. Can you help us? Please contact me ASAP with this. Believe it or not, we ONLY have until November 30th and it's coming up fast!

Until next time~

Tracey

Test Post

2009-10-03T11:27:00.000-05:00

This is a test post on Jordan's page.