Tuesday, September 3, 2013

VACATION: JULY 2013!!! (Part 1)

 Every year my husband George goes off to Seattle for an SEO conference for work, and I figured 
that since my grandpa hasn't been doing so well, that we could all try to make a vacation out of it to see him together as a WHOLE family. Surprisingly enough, we pulled it off.
George left for Seattle on Sunday, July 7th. So, we decided that since he'd already be in Seattle that we would just tack the trip onto the end of his work conference. We had family members who lived in Seattle and would be joining us on our trip to pick him up once he was finished and they drove down to where they met us at Rockaway Beach, Oregon! 
We have amazing memories from our childhood of going on vacation and crabbing on the coast. We've all wanted to go back, but it has been so long since we've all gone together. It was practically a miracle!
Driving up, my car consisted of me, Jaelyn and my little sis Gentry. I actually feel really bad for her, as I have extreme anxiety issues on road trips. Lol. But she was awesome and definitely a trooper.
To my surprise, Jaelyn was extremely good in the car. I had no idea what to expect as I have never 
gone too far with her.
A week prior to this trip, I found myself crying in Jae's pediatrician's office scared to make the drive. 
I had concerns about elevation (going through the Blues Mountains) and was scared that she would
 need oxygen or some kind of medical attention.

Yes, I am an overly cautious, concerned mother and freak.

Her pediatrician assured me that "she should be just fine, I just don't want you going to Madagascar or Sri Lanka right now" but that maybe if I had any tanks of oxygen lying around, I should take it.
Yeah, don't have anymore of those... In reply, she gave me a list of great children's hospitals along the drive in case anything happened. Not sure if she was helping me feel better about being paranoid or if she really felt like it was necessary. Either way, she told me to go visit my grandpa and live my life. I felt like I needed that. As stupid as that may sound, I feel like I almost needed permission to be normal again. She did however justify me in being a paranoid freak about Jaelyn. In her words, "as hard and long as you've had to fight for her life, you are entitled to be a bit crazy to keep her." I like that.
As I suspected, driving through the mountains Jae's lips started turning blue. I was a nervous wreck. At that point though, I believe were at the highest and were going to start coming down. Slowly as we made our way down the mountain,  Gentry kept me updated on how Jaelyn looked. Luckily, and quickly, she only got pinker and pinker. I gushed tears of relief and probably drove my sister completely insane.
The scenery was beyond GOREGOUS on the drive up there and Jaelyn was apparently making
herself comfortable!

 We reserved a cute little (BIG actually) beach house where we all stayed in and had only a small walk to the beach. I mean, you could see the ocean from the beach house!

Ahhhhh!!!!  :)

On the way, we pulled over to change Jaelyn's diaper and found the coolest fish hatchery!!! Bonneville Fish Hatchery is what it's called. It was fun and beautiful. Just what everyone needed (in my opinion) to break up the drive. It was right up Jaelyn's alley. She loves any living animal. She ran around waving at all the fish and saying hi. lol. She was one happy girl!

We finally got to the beach house late enough for everyone to just crash. I got to see my awesome husband once again and first thing in the morning we were all at the beach!!
To our dismay, and after Jaelyn gave it a good try; she hated the sand. :(

After a fun day at the beach and exploring the town at night, we went crabbing the next morning!!

We saw seals and one even followed us. So cute! Jaelyn did awesome in the boat. She loved watching the seagulls fly by and also the seal. She would look at the crabs and say, "Aww!" as if they were her babydoll and then look for the seagulls again. Lol.

Friday, June 28, 2013

Tricuspid Atresia, Hypoplastic Right Ventricle, VSD, ASD, Pulmonary Valve Stenosis, Absent Left Kidney... Lord, I believe!

"Should you terminate a pregnancy with Tricuspid Atresia?"

I have been struggling to find the time to update my blog mostly to continue writing about my experience with Jaelyn. And I feel as though I have let someone down. If not someone, then probably some people. I have felt for a while that I needed to get my story out, but never knew why. I shrugged it off as becoming too personal, like it was something I should only talk to family and close friends about or even just put it all in a journal. 
Late last night, I had this feeling like I should get on my blog and check my page views and traffic sources. It was strange, but I did anyway. I saw a few tracks from people I knew, and then a couple Google searches. Oddly, I had never seen this before, and maybe Blogger just rolled it out or I'm just oblivious, but I saw a "Search Keywords- Entry." I hovered over the Google link and what I saw next is something I'll never forget:; "Should you terminate a pregnancy with Tricuspid Atresia?" 

Yeah, things just got real. 

My heart dropped as if it had literally fallen and I needed to hold it in place. My eyes began to well and my thoughts ran to what this person may have been led to on my page. I prayed that this person read or saw all of my blog posts in hopes of seeing that Jaelyn has become a VERY healthy young girl in spite of her medical conditions. If you are the one who googled these words and have (hopefully) come back or are brought here because you are new to the diagnoses of a child with a heart condition, whether it be Tricuspid Atresia or any other, PLEASE HEAR ME.. my life would never be the same if my daughter Jaelyn who has Tricuspid Atresia, was never born. If we had not gone through what we did with her, we would have never grown into the people we are today. I have grown so much in the last year than I could have ever expected. I wouldn't have been able to see the strength that Jaelyn has inside of her, or the strength of even ourselves. Of course I hated seeing my daughter in every second she was in pain, but she is such a blessing in our lives and certainly in the lives of others. I could not imagine terminating my daughter in pregnancy, especially now, seeing the normal healthy girl that she has become. As hard as it is to say it, if it meant that I had to go through this all over again to keep her, I would do it. And as I see her completing new milestones everyday, something tells me that she would too. I believe she chose to fight so that she could stay here with us on this earth. 
Every child is different. Even though our daughter has had to fight vigorously for her life, doesn't mean that the next person with Tricuspid Atresia will have to. This was our own family trial. In fact, most children will go through this and be out of the hospital within 7-10 days. Our experience was just different.

Jaelyn had her second open heart surgery, The Glenn, on Aug 1st, 2012. A few days later I noticed something was wrong. She wasn't getting better. After a few consultations later with doctors, they decided that she needed to go into surgery right away and find out what was going on. Once they got back they told us that she had an infection and for some reason after her surgery, Jaelyn's chest never did any kind of healing and nothing had been mended. They kept her chest open under bandages, which was terribly unsettling and difficult for us. But that was what was needed for her to get better. A few days later, she seemed to be getting better and then she'd collapse a lung and then another and then another and so on and so forth. With each day bringing something new and scary. It felt like she couldn't get a break. It felt like she would crash with no oxygen and she'd need CPR at any moment. There was a time when one of her nurses was screaming down the hall for the person in charge of the machine that Jaelyn was (at that point) completely dependent on to get to the room to save her life. She wasn't supposed to yell like that in the ICU, but what other choice did she have when Jaelyn was crashing fast? There were many instances like these, but just when it would hit that low point, she'd bounce up again... slowly. 
There were moments in the Cardiac ICU that we thought we'd never see her again. In fact, most people don't know this, but the doctors were saying that they didn't know if she'd make it through the day on several occasions and to never leave too far. Although we had a feeling like she'd pull through, we called our family and offered them the opportunity to see her one last time and say goodbye in case she didn't make it, just to cover our bases.
My husband has said before, "You can only be as happy as your child." There's a lot that goes into that simple phrase. And it's so true. One night when Jaelyn was struggling at her lowest, so were we. For those who are unaware of the CICU/PICU at Primary Children's Medical Center, there is not much room for privacy. We were given rooms in the ICU to stay close by in case something happens, but at this time, we were without a room and Jaelyn was not okay. Like I said, we were at our lowest. I pulled George aside and told him we should pray together for Jaelyn. We didn't have a room and the the foyer was filled with sleeping families and people coming in and out. It was hardly the place. And so we went into one of the bathrooms and knelt on the hard, cold and disgusting floor. But our circumstances were so dire that it didn't matter. George asked me to offer it since I was inspired to have the prayer said. I won't tell you what was said in that prayer because it was so sacred, but know that I was truly inspired as my husband had mentioned and words were said that were not my own. We put every ounce of our faith in our trusting Father in Heaven. We were so humbled at that moment. The veil felt so thin and we could feel our Savior's Love. We knew of the infinite price that was paid for the pain and suffering that Jaelyn had been through and the sorrow of what we had experienced. The atonement had never meant more to either of us before. My testimony grew so much stronger right then and there, leaps and bounds over what had previously been instilled throughout my lifetime. My Savior lives. He loves us, protects us, humbles us, and gives us peace. 
Jaelyn continued to fight, and she won. We won.
I was later reminded of this experience to the fullest extent, that following April in The General Conference of The Church of Jesus Christ of Latter Day Saints, as I listened to Elder Holland give his talk entitled, "Lord, I Believe." Comparing my husband and I to the man pleading for help and giving all of our faith on behalf of our only child. Miracles happen. They did in our case. Multiple times.
Our daughter was born with Tricuspid Atresia, Hypoplastic Right Ventricle, a small VSD, a large ASD, Pulmonary Valve Stenosis, and an absent left kidney... Lord, I believe!

Jaelyn today (17 months old)

 There are many resources for families facing congenital heart defects.
Here in the mountain west region there is a wonderful support group on Facebook called
Intermountain Healing Hearts (IHH), here they take families of all heart conditions and all ages from the intermountain west region.
Heart Mommy Exchange no specifications or rules for this group.
Tricuspid Atresia (heart defect) where anyone and everyone around the world with Tricuspid Atresia or relatives with Tricuspid Atresia can join and take part of this group.
Mended Little Hearts (Facebook) one of the first places for resources that I went to. They also have a website Mended Little Hearts that gives a lot of information on multiple heart defects.
I'm also willing to help by talking to those who need it. Feel free to comment on my blog posts or email me.

Friday, February 1, 2013

Past, Present & Future

Today I attended Graham's funeral. I was in tears almost the whole time. The Spirit was so strong there and gosh, it was beautiful. This picture on the right has a story behind it. Every time they sent Graham down for a heart cath, or surgery or some kind of procedure, they would say, "Be brave." I can relate. They passed out this picture with that saying in honor and memory of him to help others to remember to "be brave." I love it. I love it SO much! Heather and Jake are the strongest people I know. They were so positive and .. strong. I hope that one day, I'll have the strength of even half of them.

Today is "National Wear Red Day." It's to help raise awareness for congenital heart defects (CHD). It seems so appropriate on the day of Graham's funeral, the day we say goodbye for a while, because of a CHD.

 And so, I wore red today, in honor of Graham and Jaelyn and all others that have and are struggling with a child with a CHD. Others on Facebook and Instagram posted pictures of them wearing red today
for Jaelyn too. I was blown away by those who did it. People can be so rad!

Today has been so emotional, from one spectrum to the other. But one of the coolest and most amazing things happened today; my niece. Sienna gave birth to an amazing little girl, and I was lucky enough to be a part of it. It was beautiful and Sienna did such a great job. She is simply remarkable. In every way. Complications arose with the delivery however, and Sienna went into emergency surgery due to loss of too much blood. We are SO blessed to have her.

At the end of the day, the Lord is all powerful, almighty, and sends His sweet and tender mercies to us. We owe Him so much thanks for all that we have. I am so grateful to have the knowledge of the gospel that I do and am so proud to be a member of The Church of Jesus Christ of Latter-Day Saints. It's comforting to know that we will be reunited with our loved ones again and that angels are watching over us, protecting us, and celebrating with us in triumphs. I have felt The Savior's love so much today and I am, oh so humbled.

Tuesday, January 29, 2013

Snow Day

Ok, so this has been the CRAZIEST snow year I have yet
encountered. It's been a lot and constant. 
I like snow. It's beautiful and so much fun to play in. But, when it comes to driving... I'D RATHER NOT! So, I decided to look for better ideas (after forgetting to purchase some snow melt the night before) and googled what my options were and voila! BAKING SODA. Who knew?
I shoveled the driveway and sprinkled down just enough to lay on top of the cement and it stayed gorgeously clear ALL DAY! I used up a whole 2 lb box (enough to cover the whole driveway) And let me tell ya, it was snowing HARD today! Problem solved. So, if ever in need, there ya go! You're welcome! 

Also, this is what was going on inside today. :)
A picture speaks a thousand words! 

Sunday, January 27, 2013

Heaven's sweetest angel boy, Graham

Tonight my heart hurts badly for a sweet friend of mine. We met and became great friends last August as each of our sweet babies became neighbors in the Cardiac ICU. We would go to lunch and dinners together with them and their family, we'd check on each other, share our worries and struggles with our babies, and cry on one another. 
I first met her as I was standing out of the way in the hall of the CICU, as doctors and nurses tried to save my daughter's life as she was losing oxygen quickly. My husband had taken a quick trip home to grab some necessities, and I stood there crying alone. She came over and extended a sweet and loving arm to comfort me. She was more of a friend to me in that short amount of time in the hospital than anyone I had known. I don't know how well I would've gotten through those months, if it weren't for her and her beautiful smile and completely contagious laugh. She knows just how to light up a room. 
This morning I received a message saying that Graham had passed away. My heart shattered. It doesn't seem fair. This family deserved him to stay. But sometimes life isn't fair and we learn the most from those moments as much as we may hate it. 
And so, today heaven gained the sweetest angel, her beautiful baby boy Graham. She was there for our hardest struggles, I only wish I could've been there for hers.  I'm hoping and praying that she and her family can find some kind of peace tonight. Graham will forever be remembered and loved.

Saturday, January 26, 2013

Jaelyn's 1 Year Photo Shoot

Ok, I know I know, I say it a lot, but my daughter blows me away. She is so beautiful. So, without further ado, check out these stunning pics. This was her 1 Year Old Photo Shoot. Taken by the amazing 
Sienna Jepperson! Love ya sis, thanks for these!!

Yeah, she's pretty much my favorite!

Friday, January 25, 2013

Happy 1 Year Jaelyn!

January 25th, 2013... wow. A whole year has passed since I gave birth to this little beauty.

It has been such a roller coaster, but I wouldn't trade a second of any time spent with my sweet, sweet angel! She has just been everything that I have ever needed in my entire life. 
How did I get so blessed? 

If any of you know Jaelyn, then you know that she LOVES Dr. Suess! 
So, of course I decided to buy her the book (she loves books too) HAPPY BIRTHDAY TO YOU by Dr. Suess. I thought it would be so fun to start a tradition of reading this book to my kids on their birthday in our PJ's. And so, I did just that. It was a success. She LOVED it!

I spent the day over at my parents' house... 
... and Gentry showered her with gifts!
Here's just a cute picture of her in her birthday dress!

 Later that night we had a little birthday celebration with
just the 3 of us. I got her a cupcake from  The Sweet Tooth Fairy
and hoped for the best!
Needless to say, she loved it and ate it very well!
She dug right in!
That face!

Not too long after her cupcake we received a knock on the door. 
Her uncle Todd had sent her flowers for her birthday! She loved those too!

Dad and mom with the birthday girl!

Happy birthday angel girl. Mom and dad love you so much it hurts!