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!

18 Month Checkup

Today we went to Dr. Terashima and got checked out for Tanner's 18 month visit.

The appointment we very well I think. He did well with putting shapes into the right holes, stacking blocks and putting a little button thing into a bottle with a small opening.

Terashima sounded impressed when I told him about the Pringle can activity, as well as a couple others we do and that Tanner actually does them and figures them out.

We talked about starting to brush his teeth and to contact a dentist and when they would like to see him. About him talking and being around other children. He really like that I said we have gone on many heart play dates and get to be around other heart kids and that we are taking advantage of the heart group that we are in!

He received his Hep A shot today, and it is the last shot that Tanner's going to need until he is FIVE! Yay!

He is doing very well and Terashima seemed happy with everything.
He's growing, but gaining weight is slowing down a bit. Terashima didn't even mention anything about it so I'm not worried.
Weight: 20 lbs 15 oz
Length: 30 inches

18 Months Old

 Stop growing already, would ya?

 Not so much a baby anymore.

Long Time No See!

Wow! I've been slacking on this blog... Sorry!

As you can probably see, I really only update this blog with Tanner's health and any heart activities.

So no news is good news!

He turns 18 months in just a few days... nooooo! So I will be posting about his 18 month appointment with his pediatrician.

We also have Heart Camp in a couple weekends that I am SO excited about. I'm sure I will have a gazillion pictures and stories to post about that.

Then in September there is the Heart Walk that will be a blast as well.

Here are some pictures to hold you over until then though....

 

His zipper and chest tube scars are looking so great!

 I am in love with these eyes.

So until then!

It Might Be Hope

Intermountain Healing Hearts 5k

We went to the 5k to support our heart heroes and angels today.
Kollin and I are not runners, but my best friend Sara ran it to honor Tanner.
(She's in there somewhere)

She ended up coming in at 6th place overall I think.
Way to go my Sava!

My favorite people!

We also got some sliding time in.

Kollin went exploring with Tanner and found a firetruck! (go fig)

There was a picnic after the race with the heart families. It was so nice to see so many wonderful families that I have already met, and also met a few new ones.
It was also the first time the husbands and fathers came to an event (at least that we've been to), so they were all probably a little overwhelmed at all of the introducing that was going on!
I'm sad that I didn't think to snap any pictures during the picnic, but next time!
All of these mommies are starting to figure out that I'm a little trigger happy with the camera. I'm such a slacker.

15 Month Checkup

Tanner had his 15 month Dr. appointment today.

I've said it before, and I'll said it again.

I love his pediatrician!

Dr. Terashima is the one that caught his heart defect, and therefore, saved his life.

Dr. Terashima was very happy with what he was seeing with Tanner. He gave him some toys to play with to see what he would do. He said it was good that he is pointing to things, kept looking at him as if for approval, babbling, saying little words and very involved with people. He says lots of those are good indicators that Tanner is not autistic.

We talked about car seat laws, eating, doing away with bottles, the results from his sedated echo last month and a bunch of other things. I love how thorough he is!

As he was reading the notes from his echo he mentioned some things that Tanner's cardiologist never mentioned. That kind of disappointed me a little that she didn't say anything at the time, but I'm over it.

He said that it was mentioned in the notes that the echo showed that he is showing a sub-aortic ridge. The post that I wrote about his different defects explain the subvalvular stenosis (sub-aortic stenosis). Well, the ridge is kind of like that, but much much smaller. It is not blocking his valve and not even affecting the blood flow at all. Phew!

I had actually read recently that a sub-aortic stenosis can come back after it is repaired and could warrant more surgery. So this information kind of freaked me out.

Given that it is just a "ridge" and not a "stenosis" there is nothing to worry about right now. And if it was something to worry about our cardiologist would have still wanted to see Tanner every 4-6 months instead of only once a year now. So I am sure she is not worried about it at all and that may be why she didn't mention it. I still would have liked to know everything that is going on with my kid though...

He got his 15 month shots today too. He was not happy about that one bit. But he did well and stopped crying shortly after. What a trooper!

He says that Tanner is growing well and all of his measurements are staying consistent. He said he is actually a little chunkier than he is tall, so that means we're feeding him good! (which is one thing I have been worrying about)

I was really excited to see how much he weighed and how tall he was. He's still growing! Yay!

Weight: 20 lbs 4 oz

Height: 28 1/2 inches

15 Months

 What a little goofball.

 Getting so big and smart!

I need to find the rewind button.

Memories

I got a new purse/diaper bag yesterday. As I was just cleaning out my purse to switch everything over I came across Tanner's first ankle band from when he was born!

I have kept everything from all of his hospital stays and put them in his scrapbook.

When we first got home from LA, I remember going through everything to organize it and save stuff. I could have sworn I remembered exactly where I had put his ankle band since I remembered where I put all the other ones.... But nope. I couldn't find it anywhere! I was so upset and sad since it was the first one. The one he had before everything happened with his heart. When he was supposedly a healthy baby. And it was the cutest one too... See the bears?

Apparently I did remember where I put it. I knew I stashed it in my purse. But when I was looking for it after, I neglected to check a teeny little pocket.

It makes me so happy that I finally found it. I though it had accidentally gotten thrown away with some papers.

And the bonus is that I had it next to me this entire time.

Right in my purse.

Sedated Echo

Tanner had a sedated echo today.

Just after we got there my sister texted me to see if we were there. She works at Primary's so she was able to come snuggle Tanner before she got too busy with work.

My Dad also came to help me out and provide moral support. It was fun hanging out with Grandpa while we waited.

He had to go to a work thing, but Gwen showed up shortly after he left!

It is so great having such a wonderful and supportive family!

The echo didn't take as long as I thought it would, or maybe I just lost track of time...

Tanner got a new blanket and a cute little hedgehog stuffed animal.

He did really well with the sedation this time. Last time he was so upset before they drugged him up, they almost had to knock him out completely.

This time he went right under and would lay there making cute little babble noises the entire time. It was sad, but cute.

Before we even got out of the echo room Tanner's cardiologist, Dr Minich, came in and listened to his heart and let us know she had already reviewed the images from the echo.

She said that he sounds wonderful other than a little murmur that he has. As far as I have known, he's had that murmur since after his surgery because of the way they repaired him and the blood just flows differently now.

She also said that his repair looks wonderful and she is very happy with how he is doing. She said that she doesn't need to see him again for a YEAR! That next appointment in a year will be for a chest x-ray and an EKG. Then another year after that will be another echo and he will most likely not need to be sedated because he will be better at holding still.

As she was saying this both Gwen and I started to cry because the news was so great!

Well done my little hero! Keep up the good work!

Heart Play Date

I just can't get enough of all of these wonderful heart families!

To commemorate the end of "winter lockdown" (winter months where you cannot go ANYWHERE to keep germs at bay) a bunch of us got together at a park with our kiddos and played to our hearts content.

 Tanner had a blast digging in the wood chips.

 He was the smallest one there that was able to walk around and try to play. The bigger kids were so sweet to play with him!

I've said it before and I'll say it again... I am so thankful to know these beautiful families!

Can't wait til next time!