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!


Wednesday, January 23, 2013

BIG Improvements!!

Tonight we tried giving Jaelyn a bottle (which she hasn't taken since her second open heart surgery back in August) and she did so well! (Insert proud mommy tears here!) She started biting it at first and for most of the time, but eventually, she found her way and started sucking! We are beyond THRILLED and just so EXCITED! We're praying she'll keep up the good work so we can get rid of that dang feeding tube.
My kid is so rad!


Tuesday, January 22, 2013

Brushing Teeth

Jaelyn has discovered brushing her teeth. She LOVES it! She had an especially fun time brushing teeth with her daddy! Check out these cute pics (and yes, I realize she needed her ng dressing changed. No worries!):
I love these two!

Friday, January 18, 2013

Jaelyn's story: Diagnosis of Tricuspid Atresia

January 1st, 2012

  I find it fascinating and not at all amusing that when you've endured something so traumatic or experienced something that has shaken you to the very core, the anniversary of that experience has no mercy. I find myself angry, overwhelmed, irritable, and sad. Sometimes if it's been a while, years even, you forget about the anniversary. But somehow you know. Sometimes and most usually in my experience, it's my environment, my surroundings that bring me back. The leaves start to fall, the coldness in the air, that sun at dusk.. so intense. That's when I know.
  Now and unfortunately, I have a new season, a new anniversary. It's the biting cold out, it's that feeling when all the holidays have subsided and I'm in a new year, and all those feelings start to reemerge. This time for something different. All that I want to do is cry. I want the tears to just run like a river. I want that. I want it, because it's one of the only ways to help me feel better. I want to scream and release my ..."why this child??? Why does she have to endure this? She's so innocent.. so precious." I want to take her place.. every. day. I'm not blaming God. I wouldn't dare. I know He has reasons, reasons at this point, that are beyond my comprehension. But I still have my whys.

  Last year, we were just coming home from our Christmas/ New Years in Utah. We were preparing our house for our first baby; a girl, due at the end of the month. We were having exciting conversations about when I'll start having contractions, if she'll come early, if she'll come late, what she'll look like-- who she'll look like. We needed to get the the house sprayed, the nursery set up (I never had that nesting phase), etc, etc.. We had been told about a month prior, due to many issues in my pregnancy, that our daughter may be missing the right side of her heart, but that most likely, since the ultrasound was so late in the pregnancy, that extremities were probably just in the way, that everything was fine and we were given the impression that it was no big deal.
  January 12th, 2012, I had an appointment to see the pediatric cardiologist, Dr. Stock, in downtown Phoenix for a fetal echocardiogram (to evaluate my baby's heart). George didn't have vacation yet, since it was the first of the new year, and we were pretty sure everything would be okay anyway. He went to work and I went alone to the appointment. I remember filling out the paper work, calling my mom about family history questions, and then being escorted back to the ultrasound room by a nurse. There were three nurses (there to learn more about fetal echoes), the ultrasound technician, and myself. Five people all together in that small room. It was nice to have them though. People to talk to. They made me feel comfortable.
  Before the ultrasound tech started, she explained that across the hall was Dr. Stock. He would be watching the same fetal echo on a TV in a private room, making notes. I would meet with him after to discuss what was seen. Then it started, the fetal echo, and we were all chatting. I had been through countless ultrasounds at this point, but seeing my daughter never got old. And now, it was really cool to see an up close view of her heart. About 40 minutes later, Dr. Stock came through the door. He immediately asked her to stop the ultrasound and go back about 30 seconds. He wanted to review that part more closely. The room fell silent. He was serious. Instantly my eyes began to well up. He then turned to me, placed his hand on my shoulder and said, "Hi. I'm Dr. Stock. I apologize for coming in so quickly without introducing myself. I just needed to make sure I'm seeing things clearly. This happens all the time. Sometimes it's difficult to see things clearly on these things, so we have to take extra precaution. Don't worry." He gave me a big, comforting smile and continued on with the ultrasound tech. I felt better. After, he told me that he would finish the rest of the echo in the next room and that we were just about finished. Ten minutes later, we were done.
  The ultrasound tech guided me to a room across the hall where Dr. Stock would join me shortly. I waited maybe 5 minutes, when Dr. Stock and a woman came in. She was beautiful, a lot like my mother. She was introduced by Dr. Stock as his assistant and fetal nurse coordinator. She smiled and said, "hello."
  I sat there waiting for one of them to talk. It felt like forever. Finally, Dr. Stock opened up, "Is it just you here for the appointment?"
  "Yes. My husband needed to be at work today. It's just me."
  "Okay, we have a lot to discuss... I'm afraid that your daughter has a heart defect called Tricuspid Atresia." He went on to explain the condition in full detail... and I couldn't get past that part.. "your daughter has a heart defect.." I started sobbing. I couldn't control it. The tears kept streaming down my face and I was gasping for air. I felt like I couldn't breathe. Dr. Stock stopped talking at the moment of my tears. He explained that I could have all the time I needed to cry, that this was a lot to take in and there has a been a loss for a normal and healthy pregnancy and child. They could stay if I wanted them to stay, or I could have some time alone. I asked them to stay. Then he asked if we wanted to call my husband and do a conference call, so he could hear the news from them and go over everything. I said no. I wanted to tell him myself. I asked for clarification about the heart defect and if it was something that I did. Could I have taken some medication when I wasn't sure yet if I was pregnant? He told me that it was nothing that I did and that I had done everything right to take very good care of myself and the baby. 'These things just happen." He continued to explained that Tricuspid Atresia is a heart defect present at birth (congenital) in which one of the valves (In Jaelyn's case, her tricuspid valve) between two of the heart's chambers hadn't formed. Instead, there's solid tissue between the chambers. Her blood can't flow through the heart and into the lungs to pick up oxygen as it normally would. The result being that her lungs can't supply the rest of her body with the oxygen it needs. He continued to tell me more; that she also has two holes in her heart. Two holes (ASD, VSD) that are presented as openings in the atrial and ventricular walls to allow the blue blood to mix with the red blood on the other side. He said her skin color would be cyanotic (blue) at times, until and at that point, when she'll need a series of three Fontan heart surgeries. He was however, pretty sure that she'd be able to skip the first surgery until she would be about six months old when she'll need the second of the three. Because I was such a mess, he drew me a picture to help me comprehend the anatomy of a normal heart and then the anatomy of how her heart is. He's obviously done this before. Lynn the woman in the room, Dr. Stock's assistant, gave me her card. She told me to call anytime if I had questions, needed references and so on. Dr. stock interrupted and told me not to look it up online and not to look at other people's blogs. Every case is different.
  They asked if I was okay to drive home since I was about an hour away. I said yes, but deep down, I was weak. I was broken. How could I drive home? How do I move on? How do we move on? We... George. Oh no, I have to tell George.
I looked up, lost in thought, realizing Dr. Stock was talking to me.. "sorry?"
  "Would you like to call your husband before you leave, in case he has any questions?"
  "...Okay."
  "We'll be right outside if you need us."

  The phone rang and George picked up, "Hi sweetheart, how'd the appointment go? Everything's okay?"
  ".... She has a heart defect..... It's called Tricuspid Atresia", I sobbed.
  "Wait, what?!"
  "She has a heart defect, George. She missing a part of her heart."
  "........."
  "George?"
  "Yeah, I'm here."

  We talked and cried for a while, and then George offered to come home to be with me. It was a lot to handle. I told him no, and that I just wanted to go home and take a nap. Maybe sleep will make it go away.
  I got off the phone and tried my hardest to regain my composure. I walked out of the room and Dr. Stock and Lynn were there waiting. They asked if George had any questions and I said no. I had done my best to explain to him what our daughter had. They were both very impressed to hear back what I explained to George. They told me that after getting news so shocking, it's not too common that people remember the details that I did. Dr. Stock offered to cancel a meeting later that afternoon so he could meet with George after work, if he changed his mind and wanted to meet with him. I thanked them for being so kind and promised to meet with them soon. The conversation concluded and I was left with a new pregnancy, a new baby, a new life.
January 1st, 2012
  I walked my way down to my car in the parking garage, got inside, sat there and cried. I cried so hard I felt like I was going to throw up. I spent a good while trying to gather myself. I was in no condition to drive and yet, I had to get home. I couldn't stay here watching people come and go at a hospital. I realized I would be doing too much of that on my own in the future. I turned the radio on in search for an upbeat song, and praying that Kelly Clarkson's voice would stream through my speakers. Instead, I stumbled upon The Band Perry's, "If I Die Young." I remember the song so clearly. It was now a new song again, as I started listening to the lyrics, "If I die young, bury me in satin. lay me down on a bed of roses..." I kept listening, imagining if, and then praying that it wouldn't be me.  "...Lord make me a rainbow, I'll shine down on my mother, she'll know I'm safe with you when she stands under my colors. Oh, and life ain't always what you think it ought to be, no. Ain't even gray, but she buries her baby.."  Why is this song on??????!!!!!!! Just my luck, something sad and depressing. My life is changed. I will hear and see things differently from here on out. I changed the song, and laid back in my seat. After a few upbeat songs later, I got on the road.
  I made it to about Mesa (30 minutes out) and had to stop. I needed to stop. Who was I kidding? I can't drive. Noticing the exit for the Superstition Springs Mall, I took it. Besides, I needed to pick up my ring that was getting diamonds replaced anyway. I looked in the mirror to fix my makeup. I was a mess. My eyes were bloodshot and puffy, and my makeup was practically gone. I was in no shape to be going out in public. But I figured the air would be good for me and I would just stop in really fast, pick up my ring and get out.
  I walked in and showed the lady my papers. She knew me. I was in often for my ring. I was always losing the diamonds on the halo part. She came back, showed me my ring and asked if I was okay. I blabbed out, "No. My unborn baby is sick." She didn't need to know that. I just blabbed it. I was a volcano erupting unable to control it. Embarrassed, I told her thank you, and that my ring looked beautiful. I gave her my signature before she could say anything and bolted out the shop. I could only imagine her thoughts.
  I arrived home, feeling relief from being away, somewhere I didn't want to be. I heard my dog so giddy that I was back. I opened her crate and sat on the couch. Immediately Zoey jumped up, excitingly kissed my cheek, laid her head down on my lap and stayed. Who cares that all of that training disappeared? In that moment someone knew how I was feeling and knew just what to do to comfort me as best way she knew how.
  I laid backed wanting a nap, but couldn't find sleep. So, I called my mom. I thought I had a good handle on my emotions, but as soon as she said hello. I started sobbing. I explained to her what happened at the appointment. She cried. We talked and I asked her to tell the rest of my family, because I couldn't tell them myself. After, I had to get off the phone. I couldn't take it anymore. She called George's step mom, concerned for me, being out in Arizona without any family. I received countless phone calls and texts from family and friends in that short period of time. None of which I answered.
  At the time George and I had only one car and since I had my appointment, I had to pick him up from work. I trailed all the way back to Tempe to get him. He came out and we hugged and switched places so he could drive home. He didn't look well at all either. He told me he couldn't concentrate at work. That his heart dropped when I told him the news. He was depressed the whole day, but he wanted to be strong for me, and he was.
  We got home, crawled into bed and held each other close. We talked a lot about what's next, what to prepare for. We went against Dr. Stock's advice and looked Tricuspid Atresia up. We clearly should've listened to him. There were too many scary things to look at. Too many stories.
  After a while, I realized that I had a baby shower later that night that some women in my church put together for me. I just couldn't fathom going. I wanted to cancel or not show up, but that would be impossible. How do I go to this thing and talk about my baby without having a melt down? It was beyond me. Instead, I showed up late. Like, 20 minutes late. But not on purpose. I got lost. I had never been to the house that was throwing my shower, but I was greeted with loving arms, and smiling faces. So, I put on a smile myself. I looked around and thought, "nobody knows." Turns out, it was just what I needed. A (somewhat) kind of distraction. The night came to an end and George wrapped his arms around me as I cried. Tomorrow will be a new day.

   I'm not sure why I'm sharing this today. Maybe I'll end up deleting it, but I guess I just feel like I need to get our story out. Please bear with me as I go through this. It's a learning process on how to deal with all of my feelings. I'm so thankful for the ones who have followed us through our journey with Jaelyn. The letters, the prayers and the support. I love you guys!

Newest Obsession

Jaelyn is now completely obsessed with her feeding tube extension. I'm pretty sure she's formed an attachment now. It's gotten to the point where she can't sleep without it. Here's some grainy, yet suitable pics to show her attachment. Oh, the joys. :)


Tuesday, January 8, 2013

My Darling



SHE GETS ME EVERY TIME.




Monday, January 7, 2013

COLD & FLU SEASON.. Ugh.

I was watching the news and heard that it is currently the

 BIGGEST Flu outbreak in a decade! Not to mention the 

things like RSV, Whooping Cough, and Rhino Virus running 

rampant in the grocery stores and not to mention children's 

hospitals like PCMC!! That place is freakin me out right 

now!! My worst fear is Jaelyn getting sick with one of these. 

Her immune system just simply could not handle it. Her 

doctor mentioned that it would be "devastating" if she 

contracted one of them. DEVASTATING?


CONSIDER. US. 

HOMEWARD. BOUND.






I made this sign a couple months ago to help people 

understand the significance of coming to our house with 

sicknesses. (It's nowhere near perfect, I know! But it gets the 

job done.) So far, we've been successful!

Friday, January 4, 2013

Weight Check

The last few months have been a struggle for Jaelyn to gain weight. We've been working with PEIP (Provo Early Intervention Program) and they've been helping out tons. The thing is, she only does what she wants, regardless of my efforts... at least so it seems. Here's a pic of our recent visit to the docs office for a weight check. We've been going in once a week for checks. She loves seeing herself in the mirror! I gotta get this girl to gain weight! She only weighed in at 15 lbs and in the 4th percentile at 11 months old. :(  She'll take sips from a sippy cup, but only with help. Other things this month; she's been crawling using her forearms, she'll stand at the couch and she's starting to babble. So cute!


Tuesday, January 1, 2013

New Years Eve! (2012-2013)

New Years Eve was spent hanging out with George's family. We watched fireworks go off on the balcony, we had a wonderful yummy dinner. Then, we went to my brother's house and played games and had some snacks. I ended my night kissing the man I love and gave my beautiful daughter a smooch too!

Friday, December 28, 2012

Jaelyn's Hand Surgery

Jaelyn had hand surgery yesterday. :( For those who didn't know, she was born with an extra digit. Or in other words, an extra thumb. It was what the doctors call a "trickle effect" from her heart condition. They say that when you have something as serious as her heart condition, they will sometimes have this trickle effect of other things going wrong. She was also born with only one kidney and only until after she was born did we notice her extra thumb. 
In the delivery room, there were so many people (docs, nurses, etc) in anticipation for Jae's delivery, and so much anxiety and emotions that were running... I mean, I can't explain how overwhelming it was to give birth to this angel. It was SO important to me to be able to hold her right after delivering, but only if everything was looking good for her. I was blessed enough to hold her for a few short seconds before they swept her off to the nicu. While George went with her, I was left to recover (which I HATED) and texting was all I had to stay close to them. I was asking all about her, how she was doing, what they were doing. "TELL ME EVERTHING!" I texted. A few minutes passed and George texted me; "She has an extra finger digit. I call dibs!" ..... Now imagine the minion from Despicable Me saying. "Whaaat?" 

I thought he was joking. Literally, a straight up joke. I didn't find it funny. It was fine if it was true, but it didn't seem real, only because we had countless amounts of ultrasounds. I'd be surprised if we missed it. Sure enough I saw it for myself a couple hours later! It was just one more thing to add to her beautiful and very special body. Anyway, surgery went flawlessly. Finally one surgery that went her way!! She did amazing! I'm so freaking proud of her!!!

















Wednesday, December 26, 2012

CHRISTMAS 2012

  I've been really, really excited for Christmas this year. I mean, really excited. I guess having a kid helps to bring back the magic of Christmas. I couldn't wait for Jaelyn to wake up and see the lights from the Christmas tree and the shiny presents that lied beneath. I about peed my pants every time I'd think about it. I wanted a color theme this year and I loved how it turned out.
On Christmas Eve we read scriptures together and ended the night with the book, The Night Before Christmas. I read it pretty animatedly, so Jae thoroughly enjoyed it. There was something about the feeling that I got at that moment, as we sat there enjoying the illumination from the tree and watching Jaelyn. George put his arm around me and we basked in the spirit and the love that we had for each other as a family. We felt whole and at peace with our lives. That is how I want every Christmas to feel like, because that was a perfect night.  
After I put Jaelyn down and George and I went to bed, I waited for him to fall asleep. Then I snuck out and I put out the rest of the presents under the tree. I finally had a glimpse of what it felt like to be Santa! I loved the thought of being the person to put out the presents under the tree and set up the house for that glorious Christmas morning. I wanted to see the surprise on everyone's face as they saw the transformation from the night before to the morning of. I skillfully placed each present in a way to showcase its beauty. Each present was delicately wrapped to the best of my ability, and if I could toot my own horn, I would because for me, I did a pretty dang good job! I was one proud mama and wife that night. I slipped back into bed around 2AM and fell asleep. 
  That morning I woke up early to make George breakfast. I made some killer Mexicali Omelets (courtesy of my pops secret recipe) and waited for Jaelyn to wake up. 
  Well she finally did and she was one grumpy little girl. She was cutting a tooth so not much made her happy. But Merry Christmas Jaelyn, you have a new tooth!! That made tooth number four. She cut number three 2 days earlier. Poor thing. Aside from the let down of her being grumpy, she still enjoyed somewhat of the morning and enjoyed her new presents. She mostly wanted me to hold her, so I didn't get many pics. But I'll post what I did snap. We celebrated with George's family the day before and went over to my parents house later that day to open presents and celebrate. We had so much fun!