It's been a hard week...

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!

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??

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?

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!!)?

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...

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!!

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!