Tanner's Page

Lunch at In n Out With Some Heart Mammas and Kiddos!

2012-03-01T23:05:00.000-07:00

Today Tanner and I got to go to lunch with a bunch of heart moms and their kids.

I love being able to go to these little activities and meeting more wonderful women each time.

What beautiful HEART babies!

I'm sure Tanner can't wait until he is old enough to be able to run around with all these boys. He loved watching them play and would get down and inch towards them, but not all the way! My silly little cautious bugger.

Can't wait for next time!

I am a HEART MOM

2012-02-26T21:09:00.000-07:00

I am a

HEART MOM

and I'm...

Tough * Blessed * 1 in 100 * Inspiring * Pushed to the Limit * Prepared * Knowledgeable * Compassionate * Brave * Special * Tired * Grateful * On an Amazing Journey * a Germaphobic * Fiercely Determined * Selfless * Aware of What Really Matters * Amazing * Hopeful * Strong Beyond Measure * Courageous * Seeking Miracles * Sleep Deprived * an Ordinary Woman Caring for an Extraordinary Child * Living for the Moment * Taking Nothing for Granted * Doing What I Think is Best for MY Child * Loving * Willing to do What's Required of Me * "Okay" * a Cheerleader * a Warrior * Worried * an Example * Strength Personified * an Advocate * in Survival Mode * a Student * Lucky * Pleading * Following My Instincts * Nervous * Stressed * Stronger than I know!

Heart Mom Dinner at Rickenbackers

2012-02-26T13:52:00.000-07:00

The other day we had a Heart Mom dinner up in Ogden at a great restaurant called Rickenbackers.

There were about 100 of us that came and I am so happy that I was able to meet and see so many beautiful and strong women in one room.

A wonderful mom put this all together which I'm sure was stressful. It turned out so great!

There were also a few amazing speakers.

One of them had us all stand up and link arms as she spoke.

She described how we are all there for each other and are there to hold the other up if the floor falls out from under us.

Some wonderful pictures were taken throughout the night. Theses ones are some of my favorites...

I am so happy that I can be a part of a group like this although I never wanted to be put into this world. All of the support and love that we provide for each other is indescribable. None of us have been through the exact same experience, but we all know what each other has been through that no one else would ever know.

Love you ladies!

Home is so Sweet

2012-02-23T13:33:00.000-07:00

One year ago today we were finally able to bring our 20 day old baby home for the very first time.

I remember being so excited and sending posts to FaceBook as often as possible to let people know our progress on the journey home.

Our journey to get home started with waiting for the shuttle to come and pick us up from the Ronald McDonald House in LA to take us to the airport. It showed up pretty close to on time and we were on our way!

The driver was kind of crazy, but I guess that's normal for LA drivers? I remember I kept lurching forward to make sure Tanner was ok with every swerve or break the driver did.

We got to the airport and to the gate with no issues at all. Going through the security check with Tanner and the car seat was a bit of an adventure though. I had to take Tanner out of the car seat and carry him with me through the metal detector. It made me worry since his car seat canopy was my shield for him from any germs, so I had him completely covered up with a blanket. It probably looked like I was nursing him.

Only his little feet were sticking out. Some of the security ladies saw them and commented how tiny he was and asked how old he was. I told them he was one day short of being 3 weeks old and we are finally going home after him having open heart surgery. They were so helpful in getting his car seat through the scanner fast so I could get him back in it and shielded again! The only issue is that the guy that put the car seat through put it upside down with the inside of the canopy touching the belt. grrr

Once we got on the plane I just held him with a blanket covering him the entire flight. And he slept the entire time up until we were coming in to land!

Then we drove home and were finally able to relax and snuggle our baby.

Home Sweet Home!

"Bit" of an accident. (pun intended)

2012-02-17T20:54:00.000-07:00

Today while I was pumping Tanner walked out of the room I was in. I didn't think anything of it since I pretty much give him free reign of the house.

The next thing I heard was a crash and then screaming and crying. I rushed into the kitchen were he was and he was sitting on the ground with blood all over his face and hands. I had no idea where he was hurt because of this!

After I was finally able to get him cleaned up and calmed down, this is what I found....

Poor little guy had bitten his lip somehow. He wouldn't let me look inside his mouth to see if he had gotten the inside as well.

I called Kollin to see how soon he'd be home and luckily he was already almost here. When he got inside he took at a look at Tanner and neither of us were sure if he needed stitches or not. Neither of us really thought so, but still wanted to take him to KidsCare to have him looked at and just be on the safe side.

When we got there we waited for about an hour and then were finally seen. The Dr. said that he didn't need stitches (yay!) and gave us some antibiotic ointment that you could just get over the counter.

I am so glad that he is ok and didn't needs stitches. It just sucks that we had to pay the $40 copay just for some ointment that we could have gotten for a few bucks at a drug store.

Oh well. Better safe than sorry! I just hope it doesn't scar. We'll see!

1 year + 1 week appointment

2012-02-15T20:20:00.000-07:00

Tanner had his one year pediatrician appointment last week. He had been sick, so his weight was pretty low. So our Dr. asked us to come back in this week and have him weighed again and get his flu shot since we didn't want to hit him while he was already down.

We went in today for his follow up and he weighed 17 lbs 3 oz last week. 9 days later he weighs 17 lbs 15 oz! That is a gain of 15 oz!

I asked the nurse if that was good and she said it was very good, that the Dr. looks for a gain of an oz a day. So Tanner did great!

Then he got his flu shot and was a total trooper. But now he's got a fever because of it, so I better go!

Night night!

CHD Awareness Week: Day 8.

2012-02-14T13:49:00.003-07:00

Every 15 minutes a baby is born with a congenital heart defect . 4,000 of them will not live to celebrate their 1st Birthday . I pray and hope just like every other parent who has a child born with a congenital heart defect that more awareness comes soon . There are no cures only repaires or broken hearts !

Although a child is born every 15 minutes with a CHD, research continues to be grossly under-funded in America. Of every dollar the government spends on medical funding, only a fraction of a penny is directed toward congenital heart defect research.

We Need More Awareness for our Babies and families ....

CHD Awareness Week: Day 7.

2012-02-13T13:27:00.003-07:00

* There are 35 different types of congenital heart defects. Little is known about the cause of most them. There is not yet a cure for any of them.

* In the U.S., twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.

CHD Awareness Week: Day 6.

2012-02-12T13:22:00.004-07:00

* The Children's Heart Foundation has directed almost $2 million to 24 different congenital heart defect research projects.

* More than 50% of all children born with a congenital heart defect will require at least one invasive surgery in their lifetime.

I love this video. A fellow heart mom made this for CHD Awareness week this year and put a bunch of our little friends in it. Tanner is 2:45, but all of these babies are so sweet and strong!

CHD Awareness Week: Day 5.

2012-02-11T13:20:00.003-07:00

* The Children's Heart Foundation is the only organization strictly created to fund congenital heart defect research.

* In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research.

CHD Awareness Week: Day 4.

2012-02-10T13:04:00.001-07:00

* Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research.

* Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.

One Year Ago

2012-02-10T12:08:00.000-07:00

One year ago today I handed my 7 day old baby to doctors to save his life.

We were in Los Angeles and Kollin was home in Utah working.

My father was by my side.

I could also feel my mother all around me filling me with her love and comfort.

I had never been so frightened in my entire life.

I put all of my faith and hope in Dr. Starnes and knew that his hands would be guided.

This past year has gone by so quickly.

Looking back I cannot believe that so many things happened with Tanner in the first few weeks of his life.

I am so thankful that we had this experience though.

It has made all of us so much stronger.

When I look at Tanner, sometimes it is hard to believe that the beginning of his life was so crazy.

He is now a healthy (knock on wood), thriving little boy.

Other than being such a pee wee he is so "normal."

He hit all of his milestones around the time when "normal" babies would. Some even earlier.

He is so smart.

He is such a happy, mellow, content and even tempered little guy.

He has some physical scars that I hope and pray that he will always be proud of and not ashamed.

Everyone else has mental scars of what we all went through with this.

I am so overjoyed that we have so many wonderful things that we all have been able to learn and take into our lives from having these experiences and knowing Tanner.

It is like he has two birthdays to celebrate!

Happy 1 Year Heart Anniversary my little warrior!

CHD Awareness Week: Day 3.

2012-02-09T12:58:00.002-07:00

* The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.

* Congenital heart defects occur frequently and is often life threatening, yet research into them is grossly underfunded.

CHD Awareness Week: Day 2.

2012-02-08T12:55:00.001-07:00

* This year almost 40,000 babies will be born with a congenital heart defect. 4,000 of them will not live to see their first birthday.
* 91,000 life years are lost each year in this country due to congenital heart defects.

CHD Awareness Week: Day 1.

2012-02-07T12:52:00.001-07:00

* Congenital heart defects are America's #1 birth defect. Nearly one of every 100 babies is born with a CHD.

* Congenital heart defects are the #1 cause of birth defect related deaths.

One Year Old

2012-02-03T12:06:00.000-07:00

You'd think he'd be a little happier it's his birthday?

Almost 1 year since his surgery. His chest looks amazing!

We have never been happier.

Thank you for joining our family you little miracle!

Our Experience with CHD

2012-01-28T12:21:00.000-07:00

Our Story:

Tanner was born February 3, 2011. As far as we knew prenatally, he was perfectly healthy. After his birth he was still a perfectly healthy baby.

The day we were supposed to be discharged from the hospital and go home with our healthy baby was a day I will never forget.

Our pediatrician came to us in the hospital and told us that he could not feel his femoral pulses (in his legs), and was worried that it might mean something.

So we went to the NICU to have tests done and it confirmed that there was something horribly wrong with our baby's heart.

We were life flighted to Primary Children's Hospital in Salt Lake City, Utah where they performed more tests and found four different issues with his little heart.

1. Coarctation of the Aorta: Part of his aortic arch had a pinch in it that did not allow enough circulation. Later on, we found that it was not just a pinch but a bigger part of the aortic arch was very narrow.

2. and 3. ASD (Atrial Septal Defect) and VSD (Ventricular Septal Defect): Holes in the septum of his heart. The septum is the wall that separates the right side from the left side of the heart. He had a hole in both the upper and lower chambers of the heart which allowed blood mixture between oxygenated and non-oxygenated blood.

4. Subvalvular Stenosis: Ok, this one is hard to explain... it is one of the parts of the wall of his heart where one of the holes are, grew to the side and created a "flap." This flap was now almost blocking the aortic valve and needed to be removed or stitched back so that valve could get circulation and grow.
We ended up being life flighted to the Children's Hospital of Los Angeles to have the surgery done at 7 days old. We were lucky that he has only needed to have one surgery and hopefully no future ones (knock on wood).

This whole terrifying ordeal lasted about 3 weeks (not to mention all the doctor appointments afterward and for the rest of his life). We got home from LA the day before he turned 3 weeks old and we finally had our newborn baby in our own house.

Tanner is now a thriving healthy boy. It almost seems like he never had a problem with his heart at all. I am so happy that he is doing so well, but there is always the elephant in the room in the back of my brain that will always be stressing and wondering if something else will happen as he grows.

Our experience with Tanner's CHD (Congenital Heart Defect/Disorder) was the most petrifying experience of our lives. Another heart mom said this one day and I just love it. She said that she never thought about heart defects or wanted to be a part of the CHD world before our child was born. But now that he is here we would not change our experience for anything.

There is a CHD board on Pinterest that has many more stories of other children and adults that have been affected by CHD. You can read their stories here.

Help spread awareness for CHD week! February 7th - 14th!

Thinking

2012-01-27T01:03:00.002-07:00

Since the 1 year mark is coming up on Tanner's birth (woo hoo!) and also his surgery and hospital stays, I have been thinking and remembering more and more things that I did not include in this blog.

I am very happy that I am remembering some things and never want to forget them. There were so many things that happened both happy and sad in that time that I want to remember. We were told so many different and new things in such a short amount of time my brain was mush and could not get anything back out of my brain during that time. I want to have a record of what I can still remember before any of it becomes more dim than it already is.

I am going to be updating the blog with these little tid bits around the dates that they actually happened. I will put the actual date of when I wrote the post somewhere in there and also label them "after thought" so I, and also others will be able to tell a difference between in the moment posts and after the fact posts.
Wish me luck in remembering things!

I'm Walking on Sunshine! Whoo oo!

2012-01-23T12:32:00.000-07:00

Just short of 1 year old.
We're in trouble.

Heart Momma Dinner at Zupas

2012-01-22T16:24:00.001-07:00

I was able to go to a dinner that a bunch of heart moms had put together so we could meet, get a break and talk. It was not an official IHH event, but we were able to get many of us together nonetheless.

If my thinking is correct, I want to say there were probably about 25-30 of us there. Some of them had already left before we thought to get a group picture together, so some of them are MIA. Sorry!

It was so nice to be able to finally meet these beautiful women. Most of them were "heart moms" like me. In which they also have a child or children with a CHD. Some of them have angels that are no longer with us. There are also "heart kids/adults." One came that was a heart kid herself and one of her children also has a CHD.

It was very informing to be able to speak with these ladies about their children and what they have gone through, and have yet to go though. The strength within these women was palpable and extended to each one even more.

I am so excited that I was finally able to meet some of these women. I look forward to many more activities that we are going to be doing together, and for the love and support I already feel from them.

11 Months Old

2012-01-03T13:06:00.000-07:00

This has got to stop. The growing thing.

But not really.

I am loving every moment of this!

Happy New Year!

2012-01-01T12:13:00.002-07:00

2011 in Review ~ in pictures!

2011-12-30T20:51:00.000-07:00

January

37 weeks pregnant

February

Welcome to the world Tanner!

Tanner @ Primary's

Tanner @ CHLA just after surgery

All of us @ the Ronald McDonald House in LA

5 weeks old

March

April

May

Blessing day

June

Scottish Festival in their kilts!

July

4th of July Fireworks @ Bee's Stadium

Lake Powell

August

September

October

November

December

Merry Christmas!

2011-12-25T23:23:00.000-07:00

Our Heart Baby

2011-12-23T17:39:00.000-07:00

We have always wanted to find a heart ornament for our tree this year because of Tanner's surgery. We were finally able to find one we liked. Also the fact that it is metal and not glass was a bonus since he can't break it!

You can also see his snaggle tooth that he got recently. So cute! No top front teeth, but he's got that fang. Yay!

10 Months Old

2011-12-03T12:08:00.000-07:00

10 Months.

Stop it!

Happy Thanksgiving!

2011-11-24T18:00:00.000-07:00

9 Months Old

2011-11-03T09:15:00.010-06:00

9 months in, 9 months out.

No. Way.

Way Mom. Duh.

I love you buddy!

Our Wizard of OZ family!

2011-11-01T11:36:00.000-06:00

We got this idea when we were in LA for Tanner's surgery.

In the hallway on the way to ward he was in there were plaques all over with pictures thanking the surgeons and their teams.

One of the pictures was a little baby in a Tin Man costume.

When Kollin and I saw it, we thought it was perfect because of his heart!

So, Ta-Da!

Happy Halloween!

2011-10-31T18:01:00.001-06:00

Surgery Day

2011-10-20T13:52:00.000-06:00

Tanner went and had a little surgery yesterday.

We were finally able to get him circumcised and also had a chordee release (straighten his penis out since it was kinked to the side since he was laying on one side in my belly for so long, it flopped to one side and stayed that way).

In his hospital clothes and all ready for what is going to happen!

He had no idea what he was in for, poor little guy.

With his anesthesiologist just before he took him through those doors and away from me.

His surgeon (I forgot to get a picture of him) was so great. He came and talked to me when he was done and said that everything went great. They had absolutely no issues while he was knocked out which was the major thing I was worried about.

Just after I was reunited with him. I was allowed to start nursing him right away!

Hanging out in the post-op area waiting to be able to go home. That green thing on his arm is the IV he had. He was having fun trying to chew on the end of it. woops!

All ready to go! Got the IV out and a cool little reg bandage that Grandpa is showing off.

He has done so well so far. I only needed to give him a couple doses of his pain meds yesterday after we got home, but so far nothing today. He is acting completely normal and not seeming like he is in any pain at all.

Let's hope it says that way. He is such a little trooper still!

Surgery Tomorrow

2011-10-18T15:08:00.000-06:00

Tanner has another surgery tomorrow at Primary's.

He has already been through so much, this one is so simple and easy in comparison.

He is finally able to get circumcised and also having a chordee release (straightening his little pecker out since he was laying on one side in my belly for so long it kinda flopped to one side and stayed that way).

I am feeling very confident and good about it. I have been reassured many times from his pediatrician, cardiologist, urologist and my parents that it is a very quick and uncomplicated procedure.

My only issue, at the moment, is him getting knocked out and that he has to have a special cardiac anesthesiologist to watch him closer because of his heart.

I'm also sure I'll collapse into a fetal position on the floor as soon as they take him away from me. Good thing my parents are going to be there with me.

Wish him luck!

Follow up with the Cardiologist

2011-10-10T21:26:00.001-06:00

So today Tanner had his follow up appointment with his cardiologist to make sure he is still doing ok.

He had an X-ray (which he didn't like one bit) and I got to see the staples and wires in him. It looked pretty interesting.

He also got a bunch of stickers all over him for an EKG.

The nurse was so sweet and cute with him! She even blew bubbles to help him hold still while the tests were being run.

Then his cardiologist checked him out.

She said that he is a little small (must take after Kollin and me) being in the 5th percentile for weight (the last weigh in with his pediatrician said he was in the 3rd, so he's still growing!), but other than that she is still very happy with everything she is seeing and hearing.

His pulses look great.

She said his X-ray looked so good that if he didn't have those wires and staples inside, you would never know he had surgery.

And everything is sounding wonderful.

He has a small murmur, but it was there before and hasn't changed. So she says that is great, it is pretty much how they did the surgery and the way the blood is flowing now it makes a little sound that is different than "normal."

Kollin wanted me to ask her a couple more questions about what he can and cannot do in the future that we hadn't already asked....

One of them was if he can ride roller coasters. Kollin's side of the family are huge roller coaster fanatics! She said that Tanner does not have the type of heart condition that a roller coaster would cause any issues. She said she gets asked that about 10 times a day so apparently a pretty popular question!

Another question was if he could shovel the walks when he's old enough. She said it was a very good question and that he should be just fine to do that as well. Sorry buddy! No excuses to not help Daddy with the snow!

Overall, he passed with flying colors and she wants to see him in 6 months for another echo just to keep an eye on things. Sounds good to me!

8 Months Old

2011-10-03T17:34:00.000-06:00

This boy needs to stop growing!

At least his hair, because I've already given him 2 haircuts. And he needs another one!

But he's still my little cutie.

I love him so much! Even with all that growing he's been doing.

I never said I wasn't a slacker!

2011-10-03T17:29:00.001-06:00

Oops! I have been neglecting this blog for an extended amount of time. I never said that I wasn't lazy, or if something is out of sight then out of mind. But I think my best excuse for this one is that I'm just that much of a flake.

Anyway, there have been a bunch of things going on since the last time I posted on her...a month ago.... SORRY!

And just to prove how lazy I am, I am just putting links in to those posts.They're pretty cute though, so head on over there and read them!

Here is the 6 Month Old link to start, and just keep going from there.

OR, you can just read the ones that I consider little highlights:

6 month photos
Daddy taught him how to splash
Mamamamama
First big boy bath
Two Teeth!
my little dare devil
7 Months Old
mobility
met his brother
gimme five!

Ok, so that was a lot. But oh well.

Enjoy!

6 Months Old

2011-08-03T12:58:00.000-06:00

6 months? How did we get here?

He is now closer to 1 year old than birth.

I'm gunna cry.

But OH.MY.GAH! is he cute!

Lazy update....

2011-07-30T12:05:00.000-06:00

There were a couple of pretty cool things that happened lately. But sorry, I am too lazy to blog about them a second time on this blog. So here are the links to my main blog again!

Enjoy!

Haircut

Still growing....

Sitting up! (pretty much)

2011-07-28T21:12:00.000-06:00

Starting Solids

2011-07-17T02:32:00.003-06:00

We went to Lake Powell last week, and I guess I was complaining too much about how much work it is to pump milk for Tanner.

Don't get me wrong, I am more than happy to do it. I'll do anything for my little Tanner Bug. But I was on vacation!

Anyway, Gwen suggested to start him on solids so I can start slowing down on the pumping.

We started him on some rice cereal and smooshed banana. He apparently likes the rice cereal better than the banana so far!

Happy 4th of July!

2011-07-04T00:30:00.000-06:00

5 Months Old

2011-07-03T21:33:00.000-06:00

5 months old! 5 months old!
Stop with the getting bigger and older already!

He sure is a cutie though.

4 Months Old

2011-06-03T13:53:00.000-06:00

4 months old. Wow.

Time flies when you're having fun!

Tanner is still being the wonderfuly loving baby that he's always been. We are having so much fun with him around and watching him learn new things every day.

Weight: 12 lbs 8.5 oz
Length: 23 inches

Happy Day

2011-05-20T18:22:00.000-06:00

Tanner was blessed this last weekend at our house.

My Uncle Stan (who Tanner is named after) performed the blessing.

Stan was telling us afterward that as he was blessing him, he felt him starting to squirm. He cracked his eyes open to see if he was getting fussy. But Tanner was just beaming up at him with a huge smile on his face!
Our happy little family.

I had to add this one.... This was the next morning hanging out in bed with one of my favorite boys. My other favorite boy is operating the camera. :)
Congratulations Tanner!

We love you SO much!

xoxo

Mom and Dad

3 Months Old and Still a Trooper!

2011-05-03T14:06:00.000-06:00

3 Months old. Already? Guess so....
He fell asleep just before I wanted to get him ready for his picture. So I was able to style his hair and snap some cute ones while he snoozed.

He even stayed asleep while I posed him. lol Then he woke up and gave me some beautiful smiles!

We didn't have a 3 month appointment, but I took him to the Dr. last week to get a prescription for a yeast infection he has in his mouth. He weighed 10lbs and 3 oz that day. Keep growing kid!

Happy Easter!

2011-04-24T14:04:00.000-06:00

Follow Up Echo

2011-04-08T17:56:00.000-06:00

Today Tanner had a follow up appointment to get another echo at Primary's to make sure everything is still looking ok inside and that he's healing properly.

My dad was able to come with me to help out and translate anything I may not have understood. It was supposed to be a sedated echo, but I asked them if we could try not to sedate him since he always has done so well during echos before. He wasn't allowed to eat for a while before and was throwing a fit cuz he was so hungry, so they ended up having to sedate him anyway.

Everything went very well through! I only cried once. It was when they were getting the IV in him and he was screaming. Other than that, I was ok.

Our Cardiologist said that he is looking great. His pulses are very strong, and everything that she saw from the echo looks wonderful.

We don't have to go see her for another 3 months, and unless something goes wrong, he won't have to have another echo until he's 3 years old. Yay!

2 Months Old and Doing Great!

2011-04-03T16:33:00.000-06:00

Two months old already!

He is still doing very well and we just had his 2 month appointment with his pediatrician today. He is very happy at how well he is doing. He is now weighing 8 lbs 14 oz and is 21 inches long. You go kid!

I was also able to finally get a 4 generation picture with my Grandma Cannon, Dad, me and Tanner. yay!

He has another echo scheduled this Friday to see how everying is doing inside. I'm a little nervous, but what parent wouldn't be I guess?

Just hopeing for some more good news!

Want More Updates?

2011-03-27T14:32:00.000-06:00

Helloooo! I feel like a total slacker on this blog now that we have been home and getting back to normal. I am trying to remember to update it sometimes, but it just doesn't end up happening. Sorry!

I have, however, been updating my other blog quite regularly with updates of our family and especially Tanner.

So if you are wanting to see updates more often check out this blog!

Happy St. Patrick's Day!

2011-03-17T01:00:00.000-06:00

Scar? What Scar?

2011-03-06T12:20:00.001-07:00

People have been asking how Tanner is looking and how his incisions are healing. So here is an update to see how GREAT he is looking! (hey Aunt Callie! This one's for you!)

The two little dots on either side just below the long scar are where his pacer wires were. These should go away completely.

The bigger blob below the long scar is where his chest tube was. There will be a permanent scar there, but it will lighten up a lot. It is looking so much better than just a week ago! It was a little infected before...

Also, the scab from his belly button finally fell off yesterday! He has an official innie! I tried to get a picture without waking him up, but his diaper is covering it, so hopefully I'll get one later.

1 Month Old. Still Settling In.

2011-03-03T14:14:00.000-07:00

1 Month! But only been home for a week.

He is finally back up to his birthweight at 6lbs and 6oz. As long as he keeps gaining weight, his recovery should be great!

Noming Mom... it was so cute I had to get a picture.

Let's Keep the Good News Coming!

2011-03-01T16:19:00.001-07:00

We are all settling in at home very well. It is so nice to have Tanner at home! Now I get to catch up on all the normal newborn stuff I guess.

He is a very well behaved baby though. I was expecting this to be much worse, and much more sleep deprived. He only wakes up a couple times a night to eat, and is great the rest of the time. There are occasions where it is hard to get him back to sleep. You can totally tell he is tired, but he'll fight going to sleep.

He even watched some NASCAR with Daddy the other day. I'm sure it was just all the bright colors of the cars flashing by, but it was way cute.

We went to his pediatrician's office to day to follow up on his weight and make sure he is gaining. He has gained 4oz since his appointment a few days ago! Yay! That means he is back to his birth weight... and almost a month old. sheesh.

He sure did look cute for the doctor today though. This is a preemie onesie that we found at Wal-Mart yesterday while grocery shopping, and it is still big on him. So cute!

He was totally (and still is at the moment) zonked out after the car ride home.
I also wanted to compare him to me. This is me when I was 10 days old. I think I've got a Mini-me!

Kodak Moment

2011-02-24T21:13:00.000-07:00

It is SO nice to be home!

Home Sweet Home.

2011-02-23T19:04:00.000-07:00

We made it home!

It is so nice to be back and seeing Tanner in his own house finally.

Yesterday didn't quite go as planned when I went to go get Kollin from LAX. Of course, I got pretty lost again. I MapQuested the directions to get there, and they told me to go the wrong way! So this time it wasn't my fault.

I ended up in Pasadena, which was the opposite direction I should have been going. I called my dad, and he got me going the right way, and I was able to find it ok. Then on the way back to the Ronald McDonald house, we ended up in Pasadena AGAIN. Somehow we missed the freeway we were supposed to merge onto. Neither of us saw any signs for it! Needless to say, Kollin and I have a hate HATE relationship with California roads right now.

This morning we lounged around a little bit, then got ready to go and wait for the shuttle to pick us up to go to the airport.

We didn't ever end up going back to the hospital to get pictures in our shirts that we got, but that's ok.

We did, however, get the picture by Ronald McDonald that I wanted.

We got through the airport without any issues and the flight was great. Tanner slept the entire time but the landing where he started to get a little fussy. Such a good baby!

We are now home safe and sound. Finally able to relax. Kollin is taking a nap. So is Tanner. I'm thinking of joining in... so tired....

We still have a bunch of doctor appointments to keep checking up on Tanner to make sure that everything stays on the up and up. So it would still be much appreciated to keep us in your thoughts and prayers!

I wanted to thank everyone again that has kept us in their thoughts and prayers. Also for the nurses, doctors and surgeons that looked after our little Tanner. I am so thankful for each and every one of you!

The comments that have been left on this blog and on my FaceBook have really helped me through this tough time. They have lifted me up when I thought I couldn't fall down any further.

I loved reading the comments about those of you that have had similar stories as us, and how your children are doing so well and growing up. It comforted me, and still is comforting me SO much.

Thank you.

Follow Up Appointment ~ Passed!

2011-02-22T17:44:00.000-07:00

So today was Tanner's follow up appointment at the hospital. I have been pretty nervous about this since we got discharged. If they found anything wrong, or he had any issues, they wouldn't let us go home.

My dad called the other day and said that my Grandma Cannon wanted to help us. He suggested to her that letting us have some of her Frequent Flyer Miles (she's got a ton) to get tickets to fly Kollin out here, and fly us all home would be a huge help. She, of course being the wonderful woman that she is, agreed to do this for us.

We have already gotten our tickets to fly home tomorrow, so I have been crossing my fingers and anything else that can be crossed, and praying that he would pass with flying colors.

We all got the the hospital today (including Kathy) and the dang parking lot was full. So we had to do a quick switcheroo in the car so Kathy could drive to the other parking lot and Tanner and I could go inside to make it to his appointment. We were already running a little late.

I got the screaming little Tanner into his stroller (he did not like being put in his car seat AT ALL), and grabbed the loaner car seat the hospital let us borrow until Kollin brought ours last weekend. Surprisingly, his stroller is easy to push and steer with just one hand luckily.

I have a little friend here helping me type now, so excuse any typos. She is the cutest little Eastern Indian girl named Miah. Her mom just told me she has surgery tomorrow. I am not sure what for since her mom doesn't speak very good English, but it is not her first one. Her little face has a big scar on it and one of her eyes is lower on her face than it should be. So I'm guessing some kind of tumor. Anyway, she's a cutie.

Anyway, we made it up to his appointment just a couple of minutes late. Whew! The nurse got him all checked in and did the normal blood pressure, temperature and weigh in routine. Of course, Tanner got pissed when the thermometer was stuck in his armpit. He said everything is looking great, and he even gained a little weight since we were discharged. Yay!

Then the nurse practitioner came and checked him out some more, took his stitches out,went over some things with me and answered my questions that I had. She was really nice. We had an adventure trying to hold Tanner still while she took out the stitches, be we eventually succeeded. He is very wiggly.

By the end of the appointment, she said that Tanner is looking great and that we are good to go home! I am so relieved that everything here has gone so well and how FAST it all happened. I was not expecting to be going home this soon, or even getting discharged from the hospital as soon as we did.

We have some more appointments at home later this week. We are going to see his Cardiologist on Thursday and then his Pediatrician on Friday. We're going to need to keep following up with them pretty often too to make sure he is still doing well. So we are not completely out of the woods yet, since so many things can still happen. But we are all still hoping and praying that this is it, and there won't be any further surgeries and he can be as normal as possible.

Kollin is flying in tonight, and I am going to go pick him up from the airport again. This time it is LAX. I'm hoping I'll be able to find it ok this time, and nothing like last weekend happens again when I went to go get him from Burbank Airport. My dad knows his way to LAX pretty well, so I'm sure I'll be able to call him if I get lost.

I am still hoping to be able to get the pictures I'm wanting sometime tomorrow before we have to go back to the airport and fly home. We didn't end up doing it last weekend. Just stayed in our room and spent time with Tanner and each other.

Hopefully the next time I update this we will all be home and in our own beds again. Tanner still has never been home yet, and I am so excited to see him in his own room with his own things!

Weekend at The Ronald McDonald House

2011-02-20T09:42:00.000-07:00

Kollin got into town on Friday night! I went and picked him up from the airport and had quite the adventure. I got pretty lost on my way there, but found it. Then we got pretty lost on the way back. Oh well, at least we made it. The streets out here are terrible to navigate!
We spent the entire day in our room on Saturday since it was raining. We wanted to go do something with Tanner, but didn't want to take him out in the weather. We'll probably do the same thing today unless it starts looking a little better.
Tanner is still doing really well. We are so happy that he is holding up and we are finally able to spend some family time together. Kollin got to feed him a couple times yesterday, and snuggle with him a whole bunch.

This morning, Daddy woke up to this...
It was such a Kodak moment, I had to get a picture of it.

Hopefully today before I have to take him back to the airport, we'll be able to get some pictures that I'm really wanting.

We all got matching CHLA shirts (Tanner's is a 2T, the smallest they had, so it will drown him even more than his newborn clothes), and I want to get a picture somewhere at the hospital in them before we all go home.

I also want to get a picture of all of us by the Ronald McDonald figure here at the House before we check out.

I am still trying to update this as much as I can, but they don't have WiFi in the rooms here, and only downstairs in the kitchen area. Since our room is up on the 3rd floor, it's kind of a pain in the rear to come down here just to get on the computer.

We're having a great day so far, and hope you are too!

Bye Bye CHLA!

2011-02-17T22:38:00.000-07:00

Tanner did it! He went an entire day without needing to be put back on oxygen. That meant that we were able to get discharged out of the hospital today!

We slept like this for a few hours this morning. It was so nice and cozy...
And then there was the good old car seat test.
He didn't like it, but passed! Whew!
Today is also the first day that he wore real clothes. Two weeks old, and finally has normal clothes on...
I realized that we didn't have any clothes here for him, and that we were getting discharged so soon. Kollin is bringing them when he comes into town, along with his car seat. So we had to borrow a car seat from the hospital for now, and I found a Ross and went and bought some clothes to hold us over til Daddy gets here.

He probably needs preemie stuff since he's lost weight since he was born, but they didn't have any. Smallest I could find was newborn, and it drowns him! Still so cute though!

And yes, I cried when it hit me that we were really leaving.
We are now all settled into the Ronald McDonald House. We are going to be here until Tuesday when our follow up appointment is at the hospital with a Cardiologist. After that, we get to go home!

Also, Kollin is flying in tomorrow for the weekend. We are soooo excited to see him, and he can't wait to see us.

I'm thinking a trip to Disneyland is in order. At least to the front gates to get a picture to be able to someday look back at all of this and laugh. (Kollin doesn't think it's a good idea since Tanner is still recovering, but we'll see) We'll show Tanner his private plane ride, and his first trip to Disneyland! lol

Recovery ~ Day 6

2011-02-16T22:57:00.000-07:00

Well, today didn't go quite as expected. We didn't end up getting discharged. This is because Tanner is still having some issues with his oxygen saturation. He has been off of his oxygen all day today though and has being doing great. So hopefully discharge will happen tomorrow.

I don't want to push it though until he is completely ready. Since we are going back to Utah where the elevation is quite different than here, it could cause him more harm than good to go home if he is not stable enough with his oxygen saturation.

Other than this, all of the other updates I am getting from the doctors are very positive and they are happy with his progress.

I have also been able to start nursing him again today. It is so nice, since I can now feed him whenever he is hungry and not have to wait for a nurse to bring me some milk that I have pumped.

They did this last night, and there were times when he would be crying and screaming for almost 30 minutes from being hungry before his "scheduled" feeding. We are now being rebellious, and eating whenever he wants. HA!

So that is pretty much all that went on today. Just playing the waiting game now. But I am more than willing to wait as long as it takes just to make sure he is ok and strong enough to go home without any issues.

Here are some cute pictures that we took today. He is such a little goofball already! Enjoy! Also, excuse my double chin. I was looking down at a weird angle. lol

Yay the Floor! eh...

2011-02-15T21:30:00.062-07:00

Written 1-27-12

It was pretty exciting getting moved to the floor since it was the last step before getting discharged. There were some nice things about it, and also some not so nice things.

When we first got settled of course I needed to pump again. So I went to the desk and asked where I needed to go. At first I got a little frustrated because they didn't seem to know where to tell me to go or anything. But then they next thing I knew they brought me my own pump right to our room! I was finally able to pump whenever I needed to without having to wait for anyone else. The only problem is we shared a room with another patient and his mom, so I had to figure a way to point myself into a corner and position the curtain just right. Also, the sink in the room to be able to wash my pump stuff was on the side where they were. So sometimes I felt like I was intruding, but other than that? Great!

Speaking of that other patient, he was a very cute little Hispanic boy. Probably 3 or 4. I overheard that all of his internal organs were flipped. So what should have been on the left was on the right and visa versa. So I didn't blame him one bit for constantly whining. But the fact that he was also constantly coughing? Kinda freaked me out and made me wonder why they would have put a baby fresh out of heart surgery in a room with a sick kid.

I asked the nurses about his coughing, if he was sick and if we should be moved to another room. They said they would go check on that. .........??? When they finally came back (a couple hours later) they said he was not contagious and not to worry. Thanks for leaving me high and dry and worrying for the last couple hours though ladies!

After we were on the floor I never left the hospital. The only times I would go back to the Ronald McDonald house to shower and change was if Kathy was with Tanner. I loved being able to stay with him overnight and care for him more. But it also made me very cautious of the staff.

The first night we were there, I heard a baby crying one room away from us for over an hour before anyone went in to check on her. Was she hungry? Was she in pain? Was she just lonely? NO IDEA! After that I was all that much more determined to always have either myself or Kathy with Tanner while we were there.

One kind of fun thing was that Tanner needed an x-ray while we were on the floor. I was expecting that we would be rolled off somewhere to have this done. Nope! Next thing I knew, the x-ray guy was knocking on the door and dragged his huge machine into our room. Awesome! Tanner was able to be x-rayed right in his own room in his own bed. It was so nice.

Recovery ~ Day 5

2011-02-15T21:05:00.001-07:00

Our night nurse was finally able to get him to take an entire bottle by himself! No more puking or feeding tube down the nose. W00t!

It looks like all it took was all a matter of a different nipple and keeping him upright for a while after.

Smooches from Grandma Stark... awww :)

After one of the times I fed him, our nurse put him up on my shoulder to burp him. I was so afraid to do this before since I don't want to hurt his little chest. But she said he is fine, and we can burp him that way if we want. It was so nice! He just snuggled into my neck, curled up and fell asleep there for hours. I just haven't gotten a picture of it yet!

They've still been trying to take him off of his oxygen, but he keeps dropping in his saturation numbers, so it gets turned back on.

It has actually been off for the past few hours and he's been going up and down, but staying pretty stable this time. So hopefully he can stay off it this time!

Some really great news today though. He got moved to the floor, which is great. I have a much bigger role in caring for him now, which I love. He doesn't have any wires holding him to machines now, and just a little box that lays in his crib with him that is attached to the monitors stuck on him to monitor his heart beat and other things. It makes it so much easier to be able to pick him up out of bed and hold him!

Also, TANNER GETS DISCHARGED TOMORROW! This doesn't mean we're going home yet though. We have to stay in the Ronald McDonald house until his follow up appointment, THEN we get to go HOME!

As of right now, they are telling me his follow up appointment will be at the beginning of next week. But I am trying to see if I can bump it up to the end of this week. Kollin flies in again on Friday and leaves Sunday. If we are able to just go home with him on Sunday, that would be SO nice.

Of course, it all depends on if Tanner is ready and well enough for the trip. So I am keeping my fingers crossed that we can fly home with Daddy!

Are you kidding me?

2011-02-14T19:01:00.063-07:00

Written 1-27-12

Ok, so this one is kind of negative. Just warning you. But it really ticked me off and I can't seem to get it out of my head! So hopefully if I get it in writing I'll let it go... or not. We'll see.

Anyway!

The first night that I was able to hold Tanner was great. The nurse that we had was very good. She was the one that finally let me hold him. The one that showed me that I could burp him on my shoulder without hurting him. The one that figured out how to get him to eat more by switching to a different kind of nipple.

After everything she did that was so positive, there is still one thing that just royally pisses me off. It was the first night that she was our nurse. She was taking care of him and getting his vitals and everything. I was sitting on a chair blogging and Kathy was standing by Tanner's bed watching.

The nurse (I can't remember her name now) and Kathy were chatting and out of no where she asked if she wanted to hold Tanner! I popped my head up from my laptop right as she said this and started to cry and about ready to flip out. I am the mother, shouldn't I be the first one to hold him after not being able to for 3 days?!? (of course I am such a wimp, that was internal dialogue) Luckily Kathy said something along the lines of letting me hold him first and then she would if I was ok with it.

I was so happy that she said something because I still could not believe what that nurse just did and that I would not have been the first one to hold him (besides the nurses). I got all situated in a chair to be able to hold him and was handed my baby for the first time after surgery.

The pictures of this show my crying. To tell the truth, there were two different reasons that I was crying. One, of course, was that I was finally holding my little Tanner again! And the second, was that I was sooooo pissed off at that nurse for what she did.

I never told her or Kathy that was another reason that I was crying. But I sure called Kollin afterwards and told him. He wasn't too happy either. We were trying to think why she would have done that, and the only thing we could really think of was that for some odd reason she possibly thought that Kathy was the mom or that she thought I had already gotten to hold him before that? Other than that, we were stumped.

At least the nurse made up for it with all the other great things she did for Tanner and me.

Recovery ~ Day 4

2011-02-14T18:17:00.001-07:00

Last night was the first time I was allowed to hold him since before his surgery. Of course, I cried.

And then we fell asleep.

He has been eating very well on and off. Sometimes he will take his whole bottle, other times he'll only take a little and they have to feed him the rest through the feeding tube in his nose. Either way, I'm happy he is handling food again and getting more nutrients than through his IV.

Today has been a pretty eventful day. He got that fragile IV with the splint taken out, the IV in his shoulder, and also the pacer wires that were in his belly. He has also been taken off of any IV fluids and all of his medications are being given to him orally now.

That means we are that much closer to going to the floor and out of the CTICU, which means that much closer to going home! They are saying he may be going to the floor tomorrow or the next day. I cannot believe how well he is doing, and how quickly this is going! What a little trooper.

The last time I fed him, he didn't take very much through his bottle, and we gave the rest through his nose. Apparently it was given too fast, and he puked it all up a couple minutes later. Oops!

So I have to wash his blanket that Aunt Corey gave to him again. That thing is going to get some good wear and tear while we're here!

He got a bath and all washed off after, and looked so cute just snuggled up in his bed.

Just a little bit ago, they switched him out of the bed that he was in, into an actual crib. As we were making the switch, his nurse did a check up on him.

Every time he gets his temperature taken, he flips out! Most of the other check up he is just fine, he just does not like getting that thermometer stuck into his arm pit. As you can see, he turns all red and cries like crazy. Silly kid.

Now he is looking as snug as a bug in a rug in his new crib. He looks so tiny in this crib compared to his other bed.

So cute!

Recovery ~ Day 3

2011-02-13T19:13:00.001-07:00

Today is a little bit of a bitter sweet day. Tanner is still doing awesomely well. But Kollin, my dad and Gwen all flew home today. So I am once again a crying basket case for not having my Kollin here with me until next weekend. It was so nice to have him here though, even if it was for such a short time!

We miss you already Daddy!

Anyway, today Tanner has been making more improvements. They are lowering him off of more heart medications and other things that I can't remember what they are or what they do. All I know is that he doesn't have as many pumps putting stuff into his little body.

The medication that helped to produce more urine apparently worked VERY well. He is actually getting a little dry, and he is peeing so much, they are having to replace some of his electrolytes to compensate. He has also been peeing so much, he soaked completely though his blanket that Aunt Corey made for him, so I have to go get it washed so we can use it again! That's my over achiever for ya!

We were able to start bottle feeding him again today. When they first tried early this morning, he wasn't coordinated enough to suck so the nurse push it. My dad and Gwen came to see him before they all had to leave, and Gwen helped him with his bink and worked on teaching him how to suck again. It was so cute!

A few hours later the nurse was able to get him to eat a little. A few hours after that, Kollin got him to eat even more.

Then a few hours after that, I was able to get him to eat a little, but not as much as Kollin was able to. I don't know how he does it! He has always been able to get Tanner to eat more than anyone else can. Too bad he is gone now!

And of course I got to clean up after him...

Also today we were able to remove the oxygen from his face since he has been breathing pretty well. So he looked normal without anything on his face for a little while! (cept all the red from where the tape was)

This didn't last too long though. His oxygen level kept dropping for a while so they decided to put it back on. Oh well. No biggie.

They were also getting a little worried about his blood pressure and heart beat. His blood pressure was really low, which is where they want it right now while he heals. But his heart beat was a little raised.

They gave him some liquids by IV to see if that would help. It did, but not for long. One of the doctors then decided to give him a quick echo to see if everything was in working order and if something may be wrong inside.

Everything looks great! So apparently, there isn't anything to worry about.

The doctor that did the echo was also very surprised that he was throwing a fit just before the echo, but a couple minutes into it, he fell right asleep. She couldn't understand why he likes it so much. Usually babies will not put up with getting that cold gel on them and having the ultrasound probe all over their body.

Tanner on the other hand looks like he loves it, and that it soothes him for some odd reason. I suggested they should keep the echo machine parked by his crib, and whenever he starts crying to just start probing at him to get him to calm down.

She thought it was a pretty good idea, but still took it away when she was done. Darn!

Now it is just Kathy (Kollin's mom) and me here. I am so glad that everyone has been able to come out here to help support us, and so I don't have to be all alone.

I am now watching Kathy as she is trying to get him to take his bink and keep his hand away from his face.

In the pictures, you can probably see that one of his arms has a big splint on it. It is because the line they have going into that arm is pretty fragile, and it is for measuring his blood pressure and when they take blood to test stuff.

At the moment, he is trying to suck his thumb on that hand and keeps whacking his face with the splint. It's pretty cute watching her fuss over him. Such a cute grandma!

Breathing with some Phantom

2011-02-12T16:16:00.017-07:00

Written 1-27-12

One thing I forgot to mention was when the Respiratory Therapist (he is the one guy who's name I didn't get! doh!) was working on Tanner, taking his breathing tube and feeding tube out and adjusting his oxygen, he was humming Phantom of the Opera songs to him.

He would hum "Think of Me" and "All I Ask of You" to him and it made my heart just melt.

I don't ever want to forget that, and I can still remember his soothing humming voice.

Recovery ~ Day 2

2011-02-12T16:15:00.001-07:00

Daddy got into town last night! Yay! He was so excited to see Tanner and me. He was a little nervous to see him with all the tubes and scar, but he said it actually looked better than he was thinking.

They tried to take him down from completely assisted breathing last night to just pressure support. This is when he is pretty much forced to breath on his own, and if he goes too long without taking a breath, then the machine will kick on and breath for him.

It didn't work too well. He was letting the machine still breath for him too much, so they backed off and switched the machine back on full time to let him rest some more. That's ok though. Nothing wrong with that at all.

This morning when we got to the hospital, they said that they ended up being able to put him on pressure support at about 5 in the morning or something and he was handling it much better and doing great!

Next step is to get that dang breathing tube out!

His poofyness is also pretty much completely gone. He is finally back down to my skinny little baby.

Kollin and I went out for a walk, and when we came back he was awake! It was the first time that I had seen him with his eyes open since before surgery. It was so stinkin' cute to see him looking around at everything. I could tell he was uncomfortable because of the breathing tube, but we still had to keep it in for a little while longer to make sure he was ok to breath on his own.

Eventually, the Nurse Practitioner came in and was able to remove his chest tube! Woo hoo!

Shortly after that, our nurse removed his catheter! Boo ya!

Then shortly after that, his Respiratory Therapist came in and removed his breathing tube and feeding tube! Yay yay!

Now he is looking more and more normal without all that stuff taped to his face and tubes coming out of his chest and diaper. Also, within a few hours, we will be able to start feeding him again. Only thing is, I have to start changing his diaper again.... oh well! I'll take it!

He doesn't have a voice right now because of this throat being irritated by the breathing tube. It is so sad to see him cry, but no sound come out. It sure is cute though since he has been a vegetable for the last couple days, I am just ecstatic to see him moving, opening his eyes, and crying.

Our nurse asked if he likes to be swaddled, and I told him that he loves it. Whenever he is throwing a fit, as soon as we wrap him up, he zonks right out.

So I finally have the opportunity to use the new receiving blanket that his AuntCorey made for him and sent with Kollin.
Well, that is everything I have for now. The next steps are to take some of his IV's away, and we will be able to start holding him again. Hopefully this will happen soon!

Recovery ~ Day 1

2011-02-11T14:08:00.000-07:00

Tanner is doing really well today from what I am being told. He has a whole bunch of tubes and wires coming out of him, but he should be getting some of them taken away today.

The first bit of good news that I got when I got to the hospital today is that he passed the MRSA test, so we don't have to wear gloves and gowns to be near him anymore! Yay!!

They have given him a couple of doses of morphine for pain, and the doctors are saying that he doesn't really need something that strong, and to see if we can ween him off of it to something better. If he does well on this other medicine, we may be able to remove his breathing tube sometime today, and may even start to feed him again tonight!

This is pretty good news, since I wasn't expecting the breathing tube to come out for at least a few days, and not be able to start feeding him for a few days after that. Of course, it all depends on how he handles everything, so I am not expecting much until it actually happens.

A funny thing is, his nurse keeps trying to position him in ways that should be more comfortable for him to be laying. But as soon as she does, he squirms and moves to another weird position. Guess he takes after his mommy in being able to fall asleep in any position!

He is looking really puffy right now, so they have given him some medication to help him produce more urine. So far it is working. He needs to hurry up and pee a bunch though! I want my skinny little baby back!

His face, eyes, ands and feet are so swollen right now, it's making him look funny. But oh well. That was to be expected, and I know it will slowly but surely get better.

My Gift from God, Given to Me Again.

2011-02-10T17:06:00.000-07:00

I received word that he was out of surgery and being taken into recovery. They said I could come meet him in the hallway as he rolled by to give him a kiss. So that is exactly what I did. I was walking so fast down the hallway, my dad even commented on how fast I was going especially since I NEVER walk fast than my dad. (his legs are about twice as long as mine)

I was able to catch them and see my baby! He looks great! He has color in his face, which I was not expecting. I was expecting him to be white as a sheet. His little cheeks are a little rosy, and the rest of his face looks pale, but peachy.
Dr. Starnes (the surgeon), came and spoke with me and said that everything went very well. He was able to do the surgery the way that we were hoping, and will not need anymore surgeries. They were even able to close up his chest, instead of leaving it open like we were told may have to happen depending on fluids and swelling. (Kollin is VERY relieved to hear this one)
So YAY! My little guy passed with flying colors! Now we just need to pray for a fast and good recovery!
Thank you to EVERYONE that has been thinking of Tanner and our family during this, terrible time. I am hoping that we can look back at this and be stronger because of it, and be able to share our story with other families like so many of you have shared with me about your little ones that have gone through similar ordeals.

I will keep updating on the recovery and everything else. So please keep us in your thoughts and prayers.

Thank you again and again and again and again..........!

In Progress

2011-02-10T14:36:00.047-07:00

Written 1-27-12

During Tanner's surgery my parents did a great job of trying to keep me distracted and not freak out too much. They said they would call me on my cel with updates and when everything was done.

Just after he was taken away my dad and I went downstairs to the lobby and found Gwen. Only two visitors were allowed in the CTICU at a time, so we had to shuffle a lot. We found her and sat down. I called Kollin to let him know that our little boy was in the surgeon's hands now. I couldn't handle it anymore. I started to break down and collapsed into my dad's lap.

I remember laying there and getting tears all over the leg of my dad's pants as I was bawling into the phone to Kollin. I think I stayed on the phone with Kollin for a good 10 minutes or so with him just listening to me cry and trying to comfort me. I don't know how he was able to keep himself composed, although I know he was at work and was trying his best not to think about it and break down himself.

After I was finally able to compose myself enough, my dad and Gwen took me to the hospital cafeteria to try to get something to eat. I don't think I was able to eat all of what I got, but I remember being surprised that I was able to eat at all.

After we ate I was in such a daze I can't remember if we did anything else or just went up to the visitor's lounge and sat in there until we got the call that he was done.

I remember at some points I did get phone calls letting me know that surgery was started and what different procedures had been done. At some point I just gave the phone to my dad because I just couldn't fit anything else in my brain at that point and he could translate for me easier anyway.

My dad told me that the surgeon did some part of the surgery (now that I'm thinking about it, of course I can't remember what part) in 20 minutes. Apparently this was impressive because he told me that he was very amazed with all of the intricate things the surgeon was able to do in just that amount of time when he can't even suture a finger in 20 minutes. At least that got me to smile.

Gwen had also found out at some point that Tanner's surgeon had also done a heart proceedure on Arnold Schwarzenegger about 7 years or so before! I thought that was pretty interesting and have always said that if Dr. Starnes (love him by the way) is good enough for the Govinator, then he is good enough for my baby!

A Letter to Tanner

2011-02-10T12:46:00.000-07:00

Dear Tanner,

Well, here we are in California to get your little heart fixed so you can grow up to be a big boy. The doctors just came and took you away from me to do this surgery. I have been with you this entire time, and am still with you when you are away from me in their good and talented hands. Daddy is going to be here tomorrow! Daddy had to stay home and work so we can have a home to go home to once this is all over.
I am so scared right now, I don't know what to do other than write you this letter of how much you already mean to me and that I love you.
I know I've only known you for a week now, but I have been waiting for you for so long. I could not imagine my life without you already. You are such an angel baby, and I finally have something that is MINE. Related to me by blood. My biological family. I have never had this before.

Don't get me wrong though, my family is the bestest family that you could ever ask for, and I am so happy and proud that I am adopted, and was adopted by MY family. It is just a whole different ball of wax to have someone that actually resembles me and has come from me.

I can't write very much more right now before I have a complete break down. But just know that both Daddy and Mommy love you so so so sooo much. We are waiting for you to come back to us. Please be a good boy to the nice doctors that are going to fix you so you can stay with Daddy and me.

Dr. Starnes (your surgeon), seems like a very good man. He came and talked to me before they took you away, when I had been told that he wouldn't be. It was so nice of him to come and talk to me, even if it was for just a couple minutes. He said that he is 80% sure that he will be able to do the surgery that we are all hoping for, and that your aortic arch is large enough to be able to repair. And only 20% that he may have to do the other surgery that we do not want. But of course, he will not know until he can actually see everything.
There are so many people thinking and praying for you and our little family right now, it is so amazing what our wonderful families and the internet can do! Lots of people care about you that haven't even met you or me. Please be ok and come back to me.

And make sure they are fast! I don't know how long I can wait! (but not too fast to not do the best job that they can)

xoxo
mommy

Pumping Troubles

2011-02-09T21:59:00.001-07:00

Written 1-27-12

Shortly after I got to CHLA with Tanner, I really needed to go and pump. To put it lightly, my boobs were so engorged they were killing me after that long flight!

So the nurse that was assigned to Tanner showed me around quickly on what I needed to do to go and pump milk for him and get it stored.

Here are the steps I had to take, and why I love Primary's SO much more!

Step 1: Go to the main desk in the CTICU (the unit Tanner was in) and ask for the "pump key."
~ what?? That was my first thought that this was going to get rediculous.
Step 2: Once you get the pump key (sometimes it took a little bit of tracking down), go out the big double doors to get out of the unit, down a few hallways, around more corners into the "visitors' lounge."
~ The pump room at Primary's was IN the CICU. And if that one was busy, there were other actual "pump rooms" that could be easily found.
Step 3: One of the overnight rooms for parents to reserve the day of to stay in overnight is a make shift pump room. Unlock the door with the key and go in and pump.
~ ha. Ya right. The first time I tried to go in while the nurse was showing me around there was already someone in there. Even the nurse was stunned on how they got in. The husband came to the door (with an attitude no less) and said that another unit said for them to come to this room, and if it was unlocked then to just use it. (so that just made the pump key irrelivent!)
~Also, that same couple (with attitude included) were in that room probably about half the times I tried to go and use the pump. I ended up finding a spare pump somehow and pumping in the visitors' bathroom no less. Ew.
~ And that make shift pump room was always gross from whoever used it for the overnight room.
Step 4: Take your pumped milk back to the nurse that is watching your baby and ask them go and put it in the freezer.
~ At Primary's we could just go put our milk in the freezer ourselves. Each baby was assigned a little tub to put the milk in so it wouldn't get mixed up with other babies'.
~At CHLA, I didn't have access to the freezer and felt like I was making the nurse go out of their way to go and put it away. There were even times I had to ask them a few different times to put it away because they kept forgetting.

That is one more entire reason I hate it here. It's not like I don't need to deal with anymore stress!

Gloves and Gown

2011-02-09T21:10:00.001-07:00

Written 1-27-12

The reason we had to wear the gloves and gowns was because they do a MRSA test on all new patients. It doesn't matter where the patient is coming from or if they have some reason to think they would have it. They do it for all patients. And until they get the results of the test back and it is passed, the gloves and gowns have to be worn. blah

Draw! ....or not?

2011-02-09T21:08:00.029-07:00

Written 1-27-12

After we got back to the hospital and allowed into the CTICU to see Tanner, my dad wanted to see if someone could explain the surgery options to me again in person since it was not easy to understand over the phone.

We spoke with a very nice lady (I can't remember exactly what she was... doctor, nurse, NP?) and asked her if she could explain everything to me again of what they are planning to do, and possibly draw me a picture like they did at Primary's.

She started explaining the surgery to me and I had to stop her because everything was going in one ear and out the other because I was already on information overload and couldn't comprehend anymore. My dad asked again if she could draw a simple picture so I could have it to look at when I was a little more coherent.

At that point she kind of looked at us like we were idiots and why did we want her to draw a picture? She said she wouldn't draw a picture, but would try to look something up on the computer to print up for me.

After a long time she finally came back with a few different papers. All of them with very intricate heart images on them. She said she couldn't find any images of exactly what they are doing, so she just pointed to the different parts and told me what their plan was. She didn't actually mark anything on the pages, so I couldn't refer back to them at a later time if I wasn't able to remember. So all of that was completely pointless.

Everyone was actually pretty surprised that I was picking up as much hospital lingo as I was in such a short amount of time. But that was only after I had a chance to relax a little bit and actually wrap my brain around everything.

Other than that, I am just so glad I had my parents there to translate and remember things for me.

Stressed Out in LA

2011-02-09T21:07:00.001-07:00

Well, we finally made it to LA today. I was able to be transported with Tanner, which was a huge bonus and relief. We took a tiny little plane, which was pretty cool, but really scary as we came in to land. Small planes are bumpy!
When we got to the hospital, they started messing with Tanner and wouldn't let me near him while they were getting him settled. They then told me that I can only go close to him if I am wearing a gown and GLOVES. If I wasn't already bawling from hearing my baby scream and cry from them transferring him from the Life Flight people to the hospital bed, that just got me going even worse. I can't touch him skin to skin. There has to be a stupid blue glove between us.
He also is sharing a room with 3 other patients. In Primary's, he had his own room. One of these patients was just getting out of surgery about an hour or so after we finally got Tanner settled into his bed. So they kicked me out. I figured that worked, since I still had to get checked into the Ronald McDonald house.

My room is awesome by the way. That is about the only good thing that has happened all day since I've been here it seems...

While I was checking in, I got a phone call from one of the surgeons to go over the consent stuff to do surgery tomorrow. As she was going over the risks and everything I was pretty much ok. I have been expecting this stuff. But when she got to the part that once they get in there, and it is different than they were expecting, what their back up plan is... that freaked me out.

We are once again on the subject about his aortic arch being too small. If it ends up being too small to be able to repair, they will treat the heart as if it only has a single ventricle, and connecting the pulmonary artery with the aorta as one. And then using a shunt. I'm sure I missed a bunch of the details in there, but that's pretty much it.
But then, that is still just a back up plan, and may not even happen if his aorta is large enough to be able to repair the way they are originally planning. So with that being said, everyone please pray and hope and do whatever you do for his aorta!

Other things that are piling on top of all of this, is when I went back to see him, apparently one of the patients in his room is having issues, and they are performing a procedure on them. So I am STILL not allowed in there.
I have not been allowed to see my baby since about 4:30 pm, and it is now almost 8:30 pm. I have gone back a couple times to see if I can go in yet, and the nurses have gotten to the point that they told me they will just call me when I can go in. I take it I'm getting annoying...

But come on! My baby is going into surgery TOMORROW (I still don't even know what time by the way), and all I want to do is spend as much time with him and hold him as much as possible until then.

That's all I ask. But no.

Anyway, sorry about my little rant. I hate it here, and wish we were still at Primary's. I miss Kollin, and I am just getting more and more pissed off and emotional about not being able to see Tanner.

Sorry that all you get out of this update is negativity, but that's all I've got right now. I just need some good news for once, instead of things just getting worse and worse.

WOW! I just got a call from Tanner's nurse saying I can go up. Bye!

Going to CHLA

2011-02-09T13:51:00.001-07:00

Written 1-27-12

The doctors at Primary's told us that they do not currently have a "senior" surgeon since he had retired not too long ago due to him getting pancreatic cancer. All of the other surgeons were considered "junior" surgeons.

They said they could do the surgery, but felt more confident in sending us to a surgeon that had more experience and confidence. The main thing that the junior surgeons would not be completely confident about was the subvalvular stenosis. Everything else they would be good with.

So from my knowledge, the main reason we are going to a different hospital other than Primary's is because of the subvalvular stenosis.

(I also found out afterward that the other hospital could do everything in one surgery and not have to stage the surgery into 1 or 2 different ones. yay!)

Just a Quick One ~ UPDATED

2011-02-08T14:35:00.001-07:00

Looks like we're going to the children's hospital in LA instead of Stanford. The doctors here say the surgeons there are just as great as Stanford, and my dad agrees. They would not suggest this place if they were not confident in them.

All because of insurance reasons. It is so comforting to know that the doctors here are looking out for us in that aspect!

***
UPDATE
***

Just received word that there is not room for him tonight in LA, but we are getting transported out at 8am tomorrow (2-9-11)! Should be arriving in LA around noon... not sure if noon is still Utah time or CA time...

This is all I know. We'll see what happens! At least the ball is rolling!

On a Happy Note

2011-02-08T09:28:00.000-07:00

I figured I would have a happy post while we are having the calm before the storm. I happened to be reading an old friend's blog when she had happened to post some beautiful words for Tanner.

She hit the nail on the head by saying that we couldn't be called high school "best friends," because we were more than that. We were inseparable, linked at the hip and had our own language.

She has always had such an eloquent way with words that I never have had. The things she posted about my son brought tears to my eyes, I could barely get through her entire post without the effort of blinking through the tears.

Her kind and touching post can be found here.

Thank you so much for making my day, Bean. Even though the different paths we have taken in our lives, I know that we are still inseparable in ways that no one would understand. I love you.

I have also posted pictures of a happier time before we knew about all of this that is going on.

These pictures were taken by my wonderfully talented, beautiful, amazing step sister when he was about an hour old...

These pictures were taken by Kollin as the Bella Babies photographer came to our room in the hospital to take cutie patutie pictures of the little guy...
He is such a perfect and content baby. He never fusses unless the nurses are messing with him with all the tests they have to do. He just lounges around either sleeping or looking at you and studying your face.

I will always love these pictures. They will remind me of a better time, and a time before he was given away to doctors and came back with scars.

I know there will be happy times ahead of us, but these will always make me smile. I hope they do the same for you.

Stanford Here We Come!

2011-02-07T19:28:00.000-07:00

Well we just had a whole new bomb dropped on us today....

The doctors ordered another echo on Tanner today to see if there have been any changes since the last one since a lot changes in newborns in just a few days.

The doctors came and talked to us after they reviewed everything with what their plan is now.

What is now going on, is there are still the two holes in his heart that need to be fixed. The coarctation is not technically a coarctation, which is just a small kink in his aorta, but the entire aorta is too small and narrow and needs to be repaired.

There is also something else that I don't really understand about a valve, and a part of the muscle that did not grow right and is blocking the valve that needs to be repaired as well. This is their main worry at this point.

This is the worse case scenario that we were hoping would not happen, and what I was saying would cause two surgeries instead of just one. However, what the doctors are saying, is that they do not want to stage the surgeries (have two separate surgeries), they just want to do it all in one surgery. Which is a silver lining, that this will all be fixed at once, and we will not have to put him through this a second time.

The bomb that was dropped, is that they feel that the surgeons here at Primary's do not have the experience to be able to do this surgery with as much confidence as another surgeon with more experience would. So they have referred us to other locations, and to other surgeons that have more under their belt and can handle it better. All of these other locations are out of state.

We have decided to go to Stanford in California. The hospital is working on the arrangements to transport Tanner out there tomorrow, and hopefully still do the surgery in the next day or two. I am crossing my fingers that they will be able take me with him so I do not have to be away from my baby in the air, for hours on end on a separate flight. The nurses here are telling me that I will most likely be allowed to be transported with him.

Most likely, I will be out there for 2 or 3 weeks. Kollin is going to stay here, because frankly, we just can't afford for him to take that much time off work. He is going to be working and will try to come out on the weekends, and then take time off of work when Tanner is released and comes home.

Stanford is the #1 place the surgeons are recommending to take him. My dad and Gwen both agree. It may also be a good sign since Stanford is Tanner's middle name! Let's hope so!

This is all of the information I have for now, and will hopefully still be able to get this all done and over with in a timely manner. No matter what, the surgery is going to happen this week (it NEEDS to happen this week), we're just hoping Stanford will be able to squeeze us in. If not, we will have to go to another location that the surgeons have suggested. (Wisconsin, Boston or Philadelphia)

I'll keep everyone posted!

More Information from Grandpa Cannon

2011-02-06T16:34:00.000-07:00

Here is Grandpa Wayne's description of Tanner's condition:
Tanner is settled in at PCMC. The tests all show that he has good circulation and his body is getting enough oxygen and nutrients. He is stable. He is in much better shape than most babies with this condition when they arrive at the hospital.
There are new concerns. It turns out there are 4 problems besides the coarctation that could not be determined with the less precise equipment used at a regular hospital. He is in the cardiac ICU at PCMC. He has a good cardiologist and intensivist.
The new concerns are 1) the whole aortic arch is a little too narrow. It will all need to be repaired by placing a graft to make it larger, 2 and 3) The hole in the lower chamber of the heart is quite a bit larger than expected. This has problems of its own. But also with a hole there part of the septum (the wall in the heart) has been like a window drape, kind of hanging free in the flow of the blood and has blocked the aortic valve. As a result, or maybe totally unrelated, the aortic valve is too small. It looks healthy, but there is concern if the aortic valve is large enough to handle all the blood flow from the left ventricle. If they do the repair and it is to small he will go into heart failure and need another major surgery. It is borderline and thus they are weighing whether to risk fixing him or doing a less helpful temporary surgery and then a follow up in 6 months. Anyway, the hole (called VSD) will have to be repaired at the time of surgery. This means that Tanner will not only require a repair on his aorta, but an incision in his heart (open heart surgery) to repair the hole, and pull the septum out of the way 4) The hole in the upper chamber is large enough they may have fix that at the same time.
The experts will be discussing this over the next couple of days what they will do and when. So there you go.

Can we get dealt a good card please?

2011-02-06T13:06:00.002-07:00

Written 1-27-12

After we got to Primary's, they gave Tanner a few different echos to take a look at things. At first we only knew about the coarctation. He was originally diagnosed with this at Jordan Valley before we were transported to Primary's.

After each echo it seemed like there was one more thing that they found. First it was the coarctation. Then they found two holes in his heart (ASD and VSD). THEN then found the subvalvular stenosis. It is hard to explain but from what I can understand it is one of the parts of the wall of his heart where one of the holes are, grew to the side and created a "flap." This flap is now almost blocking the aortic valve and needs to be removed or stitched back so that valve can get circulation and grow.

I remember Kollin asking me if we could please just get some good news and stop having all of these terrible cards dealt to us each time he has and echo!

This is a drawing of a diagram of Tanner's heart that one of the cardiologists drew for us to help us understand what was going on, and what needed to be done. I am so glad they did too since I could vaguely remember the different parts of the heart from Jr High or High School. The different colored arrows are the different issues going on. The BLUE arrows are the ASD and VSD. The RED arrow is the subvalvular stenosis. The GREEN arrow is the coarctation.

Today... 2/6/2011

2011-02-06T11:08:00.000-07:00

We went to my dad's last night and spent the night in an actual bed! It is so nice that my dad and Gwen live so close to Primary's and have offerered us a spare bedroom.

We got to the hospital this morning right when the doctors and surgeons were meeting and discussing Tanner. They have decided to do another echo on him tomorrow to take a look at his aorta again to decide if it is large enough to repair, or if it is too small, and will have to do another kind of surgery, which will be more invasive.

Either way, he still needs open heart surgery this week, and will still be ok. Just may be a longer recovery time, and an additional surgery if the aorta is smaller than they are hoping.

That is all I have for right now. Here are some sweet pictures that we have taken today... enjoy!

Little More Info

2011-02-06T11:06:00.001-07:00

Here is some information my dad wrote up about what is up with Tanner. It is a little technical, but hopefully everyone can understand....

Little sweet Tanner is on his way up to Primary Children to get his coarctation of the aorta repaired. We have had some concerns about this over the last couple of days but things were not conclusive till this am at which time there was enough concern to do a heart ultrasound and it showed that he did indeed have a coarctation.

A coarctation is a narrowing in the aorta. It usually occurs just below where the blood vessels leave to the head and arms. The normal aorta is about 6 to 7 mm (about the size of a straw in a soft drink) and the narrow area is 2mm (about ½ as thick was a normal piece of spaghetti. This blockage over time would be bad for the part of the body below the arms plus the heart would become tired and go into failure from pumping against the blockage. So it needs to be fixed as a newborn when it is this tight.

During pregnancy blood bypasses the lungs as there is no oxygen there, through a blood vessel called the “ductus arteriosis”. After birth this closes off. Fortunately for babies with coarctations, this vessel enters the aorta about the site of most coarctations so blood actually flows through that for a while and helps out. When that closes off things go down hill. There is medicine (which Tanner is on) which helps keep that open and helping the circulation until there is time to fix the coarctation, (usually surgery though occasionally it can be fixed with a heart catheter and a balloon procedure. ) So he is very stable at this point, and the next step is evaluation by the heart experts at Primary Childrens to decide what method to use to repair this.

This is one of the most common newborn heart related surgeries. The prospects are good, though it is still of course critical.

Hopefully the pictures below will help explain what is going on.

Love you. Pray for little Tanner.

Xo
Wayne and Gwen

Here are some pictures. This is a schematic representation of the “ductus arteriosis” that helps blood flow continue to his lower body till the coarctation is fixed. 1 is the coarcation. The red bar represents the “ductus arteriosis” which keeps blood flowing better to his lower body. He also has an opening between the upper chambers and lower chambers of his heart (the white circles). These help now as they help the blood mix so the blood going through the ductus arteriosis has higher oxygen levels. That helps. Things would be ok without that, but it helps. As time goes on these may close off, or may need some attention but for now they don’t seem to be causing concern.

Diagnosis at Jordan Valley

2011-02-06T11:00:00.068-07:00

Written 1-27-12

The first day after Tanner was born I met the on call pediatrician that had done his first checkup. He was Dr. Terashima and was very nice. He sat and spoke with me about Tanner, myself and Kollin, and also answered any questions I had.

After we had spoken for quite a while Dr. Terashima mentioned that there was one thing he was a little worried about. He mentioned that he could not feel Tanner's femoral pulses (the pulses in his legs). He said this could be an indication of something that could be wrong and that he wanted us to go to the NICU to have his blood pressure taken on both arms and legs to see if the numbers are comparable.

We went and did this and the numbers all came back just fine. I called my dad afterwards to let him know what happened and he explained that they were testing for a "coarctaion of the aorta." He said that it is a big indication that a baby may have a coarctation if you cannot feel their femoral pulses. That the part of the aorta where the coarctation usually is is right where the flow of blood would go to the lower extremities. So therefore, no pulse in the legs if there was a coarctation. Phew! Dodged that one!

Then the next day when we were getting packed up and ready to be discharged and go home with our new healthy baby, Dr. Terashima came back. He said that he was still worried about Tanner's femoral pulses and wanted his blood pressure checked again in the NICU. He said that he had found out that yesterday they had only taken his blood pressure in his arms and not his legs in the NICU. Then they compared the arm numbers from the NICU to the leg numbers from the system the use in the normal nursery. He said he didn't didn't like that and since it was two different systems, he didn't trust it.

So we went back to the NICU to redo the tests. This time there was a discrepancy in the numbers between the arms and the legs. It was a good possibility that Tanner had this coarctation that my dad told me about yesterday.

They kept him in the NICU and started hooking him up to IV's and started doing an echo. During this I started to freak out and both Kollin and I didn't know what was going on or what to do. I called my dad and told him that they are suspecting that Tanner actually does have that coarc- thingy that he told me about and that he is in the NICU and that they are poking him and prodding him and I don't know what's going on AAA!

Him and Gwen came right to the hospital to be there with us and helped translate what was going on to Kollin and me. While the NICU nurses were doing the echo Tanner was being a little fussy and I was too distraught to know what to do (also they wouldn't let me go near him). Somehow my dad was able to get in there and calm Tanner down by laying his hand on his head and speaking softly to him. I remember sitting in a chair a little ways away from the bed Tanner was in watching all of them and just feeling so grateful that my dad was able to be there with him since I couldn't.

Afterwards the NICU doctor pulled us into this room and explained that it was indeed a coarctation and that Tanner had to go to Primary's to have it fixed. At first they were hopeful that they would be able to just fix it by going through his umbilical chord depending on where the coarctation was and how big. (obviously that didn't happen)

So off we went to Primary's in an ambulance and we began the most terrifying few weeks of my life.

After all was said and done, we decided to stay with Dr. Terashima. Although he was just the on call doctor when Tanner was born, he still saved his life. If he wasn't as thorough as he was and came back to have him tested a second time, we all would have been so much worse off!

Hi.

2011-02-06T10:59:00.001-07:00

I figured I would start this blog to help keep family and friends updated on our little angel of a baby.

Tanner was born February 3, 2011. A couple days after he was born, it was found that he has a Coarctation of the Aorta that needs to be repaired. We have also found out since then, that he also has a couple large holes in his heart that need to be closed.

He needs to have open heart surgery for this, which will happen later this week. He is at Primary Children's Hospital, which is so wonderful that we have in our backyard! I could not imagine a better place to have him at. Even if we did not live in Salt Lake City, and in another state, I would still want to come here.

I will be trying to update this as often as possible, so check back for more info!