Heart to Heart ~ a Gathering of Women Affected by CHD

This weekend I had the privilege to attend the Heart Mom luncheon. This is the one big Heart Mom get together of the year and it was just as good as last year's if not better. The heart moms that put this together did an amazing job. We went to the Hailstone Event Center at Jordanelle, and it was absolutely beautiful. The building was perfect, the decorations were amazing and most important the women I was surrounded by were exquisite.

Our new IHH President Mimi gave us a sweet message. She is the mother of Mia who passed away last October. She is so beautiful, strong and caring. I was so happy to see her! By the time she was done speaking I don't think there was a dry eye in the room.

The speaker we had this year was Tiffany Peterson. She is a life coach and speaks at many different types of events. She said she is usually speaking about sales and corporate/leadership training. When she came to speak to our group and knowing what we were about she mentioned she felt intimidated when she usually never is. 

She asked us what we would like to hear from her before she started and there were many women that gave her some great thoughts. She said that some of the comments she received were already so inspired and that she was surrounded by "spiritual giants." I absolutely love that term, because it is so so true. While going through this heart journey it is almost impossible to not be closer to your spiritual self and whoever you call "your maker."

There were so many wonderful little tid bits that she said while speaking I had to write them down so I wouldn't forget.... 

While speaking with us she said that we had heightened senses and with what we have all gone through it is as if we are experiences "emotions on steroids."

Event + resonse = outcome

We are stronger than we ever knew we could be.

Adversities are gifts wrapped in unattractive paper.

Has your capacity to love grown? (I think so, YES)

If you're going through Hell, don't stop and build a house.

After Tiffany was finished we went outside to have a group photo. It was pretty cold, but I think the love that was surrounding all of us kept us all warm and cozy. The photographer that took our group picture was also taking pictures throughout the entire luncheon. I cannot wait to see them!

We had amazing food and got to visit with friends and I met some new friends. 

It is so wonderful and inspiring to go to these events and have the opportunity to meet and be surrounded by such amazing mothers. I can't wait until next year!

Annual cardiology appointment

Today we had Tanner's annual cardiology appointment. It is so nice to only have to do this once a year. But it also gives you way too much time to build up anxiety in your head for what they may or may not find.

On the way to clinic. The anxiety has kicked into full gear now.

We got to clinic about 45 minutes before his scheduled appointment and it worked out wonderfully! They were able to get us back to do his x-ray right away, and didn't have to wait at all to go back for his EKG.

See the sternal wires holding his sternum together? Cool hu?

He did so well and cooperated much better than I thought he would! I had packed my purse with movies, suckers and a blanket that he could snuggle to try to bribe him to hold still during the tests.

Waiting to start the tests.

We did not need any of them! We only gave him a sucker before the nurse even started putting the stickers on him to try to distract him from taking them off. But I don't think he even put it in his mouth until everything was said and done.

Goof ball.

It's octopus time!

Peeling off the stickers like a pro.

The only little issue we had was with the blood pressure tests. Those are always the worst part and he has always hated them! The sucker wasn't working, but the awesome nurse had bubbles. That did the trick and we were able to get it done. He absolutely refused to put the pulse ox meter on his finger though. When Dr. Minich came in, she said he didn't even need it. So it was ok that we didn't get test done.

Bubbles!

When she first came in the room she mentioned how active he was and I was wondering how she would know that? Then later on she mentioned the bruises on his shins and it clicked. She said his legs look like any other kid his age, which is great!

She said she was happy with how he is sounding and looking. She did not have anything specific to say about him which I guess no news is good news.

I had some questions for her about some research I've been doing and other stories I've been hearing about his sub-aortic stenosis and she helped answer them and ease my curiosity and mind. At first she seemed a little mad that I was getting answers about things from our heart group and not her, but I explained that I understand that no 2 stories are the same even with the same defect. 

If there was anything that I was really worried about I would have called her and gotten the answer directly from her. But since I wasn't losing sleep I was just fine with waiting for his annual appointment to ask my questions. I just feel that I don't want to bother her unless it is something that I feel she would really need to be bothered with. Like any new symptoms or a worry in my mind that just won't go away. She seemed happy with my thought process for that.

All in all, everything was fantastic. While I was asking my questions I asked if she had any kind of statistic or percentage on where she thinks Tanner's heart journey will go. She said that any need for further surgeries or procedures is a very low, but not zero.Of course I could let that mull around in my brain and get me worked into a ball of stress. But I'm hoping that I won't let that happen.

After the appointment we went to Target to let him pick a prize for being so good at his appointment. I think this will be a good tradition to have so these appointments will hopefully not be so scary.

Of course. His favorite guy ever!

I think Buzz will be a new favorite for a while.

We are happy and excited with where we are. We are taking things a day at a time and enjoying every bit of it! I wouldn't have ever asked to join this Heart World, but now that I am a part of it I wouldn't ever take it back.

It was a perfect rainy day to wear these.

Two Years Ago

Two years ago today. 
It was the hardest and most terrifying day of my life. 
As well as the happiest. 
I don't believe I have ever felt so much fear and relief all at the same time, let alone on the same day. 
A miracle happened, and I am thankful every single day for that miracle and the talented hands of my hero Dr. Starnes for performing that miracle to be able to keep my Tanner. ♥

Today, it is as if all of this never happened.
Tanner is a normal, happy and healthy little boy.

The only reminders we have are the memories and his faint scars.
These reminders I will always treasure.

Miss Me?

Since there isn't so much going on with Tanner's heart at the moment, I have only been updating our family blog.

There is always a TON going on in the Heart World (which I am always following and praying about). Things are just peachy with Tanner's particular heart. I am also just too lazy to try to keep up on two blogs.

So please come over and visit us! 

HERE

I look forward to knowing you've been there. So leave me some love. I adore comments. :)

Sweet Mia

This heart world that we are in can be full of miracles. I live with one.

It can also have many tragedies. 

Mia and her mother Mimi are some of our sweet heart friends. Both of them were born with the same heart defect. Mia required a complete heart transplant. At 4 months old she received this ultimate gift from a sweet angel named Jacob.

She is now 4 and has been doing so well.

Recently she was granted a wish by the Make-A-Wish Foundation to meet her idol, Minnie Mouse. Mia and her family were granted a trip to Florida to go to Disney World so she could finally meet Minnie.

Mia had been a little under the weather a few days before they left, and everyone was assuming it was just a cold. When they got to Florida she had gotten much worse and was hospitalized in Orlando thinking it was pneumonia. After an echo it was found that she was in rejection (her body was rejecting the transplanted heart) and her heart was functioning at 40%.

They took her in to do a biopsy of her heart and during this procedure her beautiful little heart stopped. She was put on ECMO (life support) and was transported to the All Children's Hospital in Tampa to their transplant team.

After a few days they were hoping that she would open her eyes and show brain activity. This devistatingly didn't happen. She had been deprived of oxygen for too long.

The doctors told her family that there was no hope and nothing that could be done. Her family was forced to say good-bye and they decided to take her off of life support on October 8, 2012.

She never got to meet Minnie.

I always knew that being in this heart world I would eventually be going to children's funerals. Children who are friends with Tanner. But I never expected to be attending Mia's funeral. 

Not this way.

She was doing so well! She was such a strong and spunky little thing. Her cardiologists were happy with how she was doing. It is so scary on how fast this happened. It has reminded all of us how fragile our heart babies really are.

My heart is breaking for Mimi, John and her brothers and sister. 

On the day her family released Mia back home to Heavenly Father we all wore red and release balloons in her and Jacob's honor.

We did 4 red balloons. 1 for each "extra" year that she was given because of organ donation and the compassionate decision that Jacob's family made. As well as 1 blue balloon for Jacob.

Mia will never be forgotten. 

She has touched so many lives. 

I had the privilege of meeting her at heart camp. Her laugh and her smile were contagious. You were just drawn to her perfect little spirit.

This world and our heart community now feels empty because of the loss of sweet Mia.

Heaven is now sweeter. Fly high little Miss.

Hearing Test

Last week I received a letter in the mail from the state saying that they have record that Tanner failed his newborn hearing test in his left ear.

I was already aware of this and was told that he still had a bunch of gunk in it from birth and they were going to do another one.

This was before his diagnosis of his heart condition.

After his surgery at CHLA, they did another hearing test and he passed. I remember it said in his discharge papers that they wanted him to come back for another hearing test.

I talked with our pediatrician about it and he said that it must have been a California state thing, and that he didn't need another one if he had already passed if we didn't want to.

So at that point I chose to let it go and never thought another thing about it until I received this letter.

Between this time I had learned that medications that Tanner was on, as well as his extended ICU stay could have caused hearing loss. So I decided to do a follow up hearing test just to see.

We already know he can hear since he talks, mimics us and freaks out at really loud sounds. I wanted to make sure he didn't have any minor hearing loss that could affect anything and be able to do what we needed to do as early as possible to help him. And also for peace of mind.

We went and had his hearing test today.

The lady had me sit in this little room with Tanner on my lap. there were different things on the walls that made sound, lit up and moved to get his attention.

At one point of the test I was getting nervous. There were sounds that alternated on the left and right that sounded like crickets and applause. They were so quiet I could barely hear them, and I could see Tanner was not responding to them at all.

Once the test was done and the lady came and let us out of the room I mentioned that some of those were so quiet! She said that she actually turned those ones down even lower than she usually does because he was doing SO well with the rest of the test. Phew!

She did a couple other test by sticking some ear buds in his ears and we were done.

She said that he did so well, that she was actually a little impressed.

She mentioned that she bet it was so nice to have boring results for once.

I couldn't agree more.

Heart Camp 2012

This weekend we went to our first Intermountain Healing Hearts Heart Camp.

I have been so excited to go to this for months!

We got there in pretty good time and started to unpack our things to set up our tent. After Kollin got the tent all laid out, he realized that there were no tent poles! You would think how OCD we are that the poles would have been with the tent.

He figured out that a while ago he had taken them out of the bag with the tent to get to something else and forgot to put them back in. Woops!

So he drove back home to pick them up and hoped he would make it back to camp before the canyon got locked.

Luckily he was able to make it back with about an hour to spare and we were able to get everything set up pretty quick after that.

Tanner even liked "helping" Daddy set up the tent.

That night we had dinner, played bingo and minute to win it, and watched a movie.

I had put Tanner down to sleep before we went to bed and he did so well and went right down. But when Kollin and I went to bed he decided it was time to wake up and play.

At first we figured to let him wander around the tent and he'd go back to sleep when he felt like it. But he started throwing anything he could get his hands on at us. I would try to snuggle him in bed with us but he would just scream and cry and I didn't want him to wake up the entire camp. Eventually I just stuck him in between us, held him down and sang "5 Little Speckled Frogs" to him about 20 times before her finally went to sleep. I tried all lullabies that I knew and he didn't want to hear any of them, but "5 Little Speckled Frogs" worked. Who'd a thunk? 

Once he was asleep, he was out for the rest of the night. It was heaven!

It had rained pretty good that night and the next morning was beautiful.

I asked some of the other tent dwellers if they heard Tanner the night before and they said they really only heard that rain. Phew!

We had breakfast and started to clean up camp. 

This boy Porter just LOVED Tanner and took him on a ride in his wagon. He loved it.

Then the parents had a symposium with a couple of people from Primary's that gave us some great information about what is going on up there.  There is a new program that is being implemented for heart babies that have very critical defects. And also we learned about some financial options that we can do to be able to help our kids with disabilities their entire lives.

They had some fun crafts for the kids over 3, so unfortunately, Tanner had to come to the symposium with us. 

He got pretty bored and decided to go on a walk with our cute little heart friend Mason. 

These little heart kids are so stinkin' cute!

On of our families also brought their puppy up there (but shhhh, no pets allowed). So she was our Heart Mascot. Her name is HEARTly. Perfect, isn't it?

She was a little nippy, but Tanner didn't seem to mind. He loved her.

We had lunch and then cleaned up everything else. 

And we took a liquorice break.

After we got everything packed in the car, Tanner was so worn out from all the fun he was out cold about 5 seconds after and the entire drive home.

It was so much fun, and I can't wait to go again!