Halloween 2012

Jaelyn has officially cut her first teeth. One on Sunday and another on Monday. Back to back. She's one tough chick! I have to say, it is darling though. She's been sleeping through the night up until these babies came out. Now she'll wake up shrieking in the middle of the night in pain. I feel so bad for her. Hopefully it'll get more and more bearable as time passes.





On Halloween, George and I decided to dress up. I was an evil fairy and George was one of those cool guys with the 2nd skin. He looked awesome. Jaelyn was a cute little kitty. She was so stinking cute! Here are a few pics:

We had a wonderful time getting to see everyone all dressed up. I was thoroughly impressed with everyone's costumes. We had Wolverine (Cody), Effie Trinket (Cody's girlfriend, Tara), A football (Tyler), Domingo Ayala (Gentry), A cool white ninja (Drew), 2  gorgeous princesses (Katie and Kylie), a darling scarecrow (Paisley), and the awesome Iron Man (Roman)! Hopefully next year we'll be able to take Jae trick-or-treating. (We didn't want her to get sick this year, since she's so fragile from surgery and didn't see much point since she can't even eat the candy.) Hopefully you all enjoyed yourselves this Halloween as much as we did!

I have a feeling we'll be cooped up in the house again this cold and flu season, so I better get to crafting! Pinterest, I'm sure, will become my best friend! A fellow heart mom recommended this poem to display at my house for those people that visit others when they're sick. Hopefully people will respect it so we can keep away from all the sicknesses out there.

2 years and still kickin it!

The world has grown suspicious of anything that looks like a happily married life. For what it's worth, I want to keep them on their toes.

Graduated July 14th, 2012 from Western Governors University in Marketing Management

My husband is hands down, the HARDEST WORKING PERSON I KNOW. When Jaelyn was born, he had a heck of a job to finish his college classes by the end of May and be able to graduate by July. He had put off his hard classes for the last 3 months (expecting to use during his paternity leave) but with all that came with Jaelyn's birth, you could only imagine how difficult it was to be dealing with the stress and stay focused at the same time. But George amazingly finished his undoubtedly difficult business classes in the wake of Jaelyn's open heart surgery while in the hospital and during our move to Utah (in which he practically did all of, since I stayed with Jae.) He just graduated last week and has made me one awfully proud wife.
George doesn't just stop there. He has a full time job working for an inventory software company (Fishbowl Inventory) and works with his own clients on the side doing SEO (search engine optimization) and social media with his business Netdawg. He has taken on jobs to be able to secure me as a full time mom, wife and homemaker. To be able to pay for our very expensive (but TOTALLY worth it) daughter and her medical bills, and for the pleasure and satisfaction of seeing the fruit of his labors. In turn for myself, I see him becoming what will hopefully and I'm sure will be, (TBMOE) the best marketer on earth!
 George continues on to his now favorite role as a father. He has gone above and beyond of what I ever expected my husband to be as the father of my child. Jaelyn can't help but smile at him every time he comes

home from work. You can definitely tell she's missed him throughout the day. If I had to think of one word that summed up their relationship-- it would be laughter. Almost every time I see them together, George is making her laugh and of course he can't help himself either. Laughter comes so easily with him. Between the two of them, it's the sweetest sound I've come to know.

July 15th, 2010

This July, we mark the 2 year anniversary of when George and I married. Of when I became the smartest version of myself, and said yes to the man I love so dearly. He has made my life so much more complete than I ever could have attempted by myself.

July 15th, 2011

July 15th, 2012

George- people often say, "I can't imagine my life without you!" Well, I've put that to the test and stopped to think about what it would be like for me. And when I think about it.. I'm unhappy and let down. I saw myself trying to fill the void of a man that could not possibly be filled by anyone other than you. I saw myself in a world of hurt and endless torment of single life dating. lol. I am so grateful to you for your hard work to provide for our family, I'm grateful for the wonderful relationship we've had, I'm grateful for you being the daddy to my daughter in the best possible way, and I'm grateful for your fun personality and keeping things light in tough situations. I remember when I first talked to you on the phone. We talked for hours, in laughter and happiness. Thank you for keeping that alive in our marriage. President Monson said, "Choose your love. Love your choice." I just can't believe I made such an amazing decision. Thank you for being my forever love and my best friend. And thank you so much for the best two years of my life. I love you so much Cowboii!

BEADS OF COURAGE

The Beads of Courage program is something special. In fact, it's a gift. After Jaelyn was life flighted to Phoenix Children's Hospital, we were checked into and set up with a billion and one things to know, to do, and to have. As things slowed down a bit and we were able to process everything, I noticed a booklet and a bag with a few beads inside. It was the Beads of Courage program. The hospital quietly set us up with this wonderful program to help us remember Jaelyn's experience. This booklet had already been marked up and dated with which beads Jaelyn had already earned. With these beads we're able to tell a story of what she's had to endure and how she fought through her heart condition with the odds against her. They'll be a teaching tool for us to show Jaelyn as she grows older and starts to understand it all. And I'm sure eventually, she'll take these to school one day for "Show and Tell" and explain them to her friends and classmates. It's a beautiful idea, these beads. They'll be a physical reminder to her as she goes throughout other struggles and trials that she'll be okay, because once before she's conquered this.

3 Month Photos & Update

JAELYN AT 3 MONTHS

How darling is she? I cannot get enough of her!!! We had her 3 month photos done by Armi Gorrell and she did a wonderful job. Here's a few of my favorites:

 

UPDATE:

 Last week Jaelyn had her cardiology appointment where we did a chest x-ray and found some fluid in her lungs. She also had blood labs drawn and showed high potassium levels. So she was admitted to Utah Valley Hospital for that and a need for inserting a feeding tube. We were sent home a day later and sent up to Primary Children's Medical Center a couple days after that. She needed to be monitored since we had put her on Lasix for the fluid in her lungs, and Enalipril for her heart. We found in an echocardiogram that the left side of her heart (the good side) wasn't functioning as well as they would like it to. Apparently that's a typical thing to happen in situations like hers, since that side tries to compensate for the other side. We were able to get discharged on Mother's Day which was a wonderful gift! So then at this week's cardiology appointment we decided that we'll place a heart cath within the next few weeks to find out more about the heart and to see how ready she is for surgery. As of now, Dr. Hoffman is thinking her next surgery will probably happen mid to late July. Hopefully we'll get answers soon. The unknown is killing me.

A SHORT LIVED LIFE OF NORMALCY

There's been a lot of things I've wanted to say, to write down.. to express. To share Jaelyn's journey with her heart condition. I have drafts of blogs upon blogs ready to post and yet I can't seem to do it. Maybe I'll write a book someday. About all of this. That is, if Jaelyn's okay with it.
Right now, my heart is heavy as we approach Jaelyn's next heart surgery in the upcoming months. This time in between has been wonderful. Even normal. We brought her home from the hospital.
We've shared the little things that bring us such happiness, like the smiles, the "goo-goo ga-ga" sounds, the tender, sweet moment when she falls asleep in my arms, a precious mommy-daughter glance.. of recognition. These things I try not to take for granted. I try not to spoil the moment of her crying with frustration. Instead I try to cherish the fact that I have a daughter that is crying. And that is blessing.
I got off the phone with the cardiac surgery nurse practitioner up at Primary Children's Hospital yesterday, and I cried.
On a weekly basis I have to weigh Jaelyn at the pediatrician's office and report her weight to her cardiologist and the cardiac surgery nurse practitioner every Monday. This Monday was the last straw; "Well, I called over to Dr. Hoffman's office (cardiologist) and had a chat about Jaelyn's weight. At this point it looks as though Jaelyn will need to have a feeding tube put in."
This cardiac surgery nurse practitioner (too much of a mouthful anyway) said it without even blinking. (I'm sure of it.) I wanted to cry. And sure enough, here they came, pouring out of me like a bucket of water. "You'll need to schedule an appointment with Dr. Hoffman early next week to get that placed. Or you could come up here and we can do it." Did she just say that with a smile?
All of these things come and go for them. This is their job; but for me, this is my child. My daughter, my angel, my sweet baby with a heart problem.
I know it's just a feeding tube. And I know we've been blessed to not have to come home with anything except a pulse oximeter to spot check her oxygen with. I guess I could be more positive, more grateful. I mean there are some good things about it. Like being able to give her the rest of her food without a struggle. It's exhausting for her to eat. This will give her what she needs to gain more weight. She won't fight her meds that I have to give her every morning either. I assume it's the fact that I'll have to look at that stupid tube on her precious, and gorgeous little face and be reminded.. all day, every day.
It was like the day after we got home from the hospital and we were having dinner and enjoying Jaelyn being home cord free. When a knock came at the door, it was Apria Healthcare. Unexpected, he was here to get Jae set up with her pulse ox. He ran us through how to use it, and as he put that cord on Jae's foot, it ate at me, until I broke down.
I've been meaning to get Jaelyn's pictures taken professionally and now we have a short window to get them taken without anything on her sweet face. I'll see what I can pull off this weekend.
So, today I've been on Netflix trying to find a new show to delve into and stumbled upon Grey's Anatomy. I like medical shows and I've heard the hype about this one in particular, so I tried it out. First episode, wasn't too bad. Then episode 2. The story line was about an intern who's trying to find her way as a respectable doctor. She has a bad day and decides to go to the nursery to watch the newborns to find some peace of mind. She's looking about, adoring these beautiful babies, when she sees one start to turn blue. My heart stopped. I've sadly seen this before... on my newborn; just a few days before her heart surgery. Come to find that this child has Pulmonary Atresia. This is similar to Jaelyn's heart condition, Tricuspid Atresia. I found myself again, in an endless lake of tears. George knows someone whose grandchild has pulmonary atresia.
I'm trying to gather myself together and not have a pity party for myself. I try so hard to see the good and the positive parts of this journey. But some days get me down, like the last two days. I keep hearing, "Be still, for this too shall pass."
And so, here's to one more week...

Jaelyn Marie Nielsen

Meet Jaelyn Marie Nielsen

Born on January 25th, 2012 at 2:14 pm

5 lbs. 6 oz. & 18.5 inches

 

If being a mommy isn't the most amazing gift in life, I honestly have no idea what is. Those who are parents, I'm sure get this. But being a mommy to a "heart baby", is so incredible. 
Jaelyn was born with Tricuspid Atresia, Hypoplastic Right Ventricle with a small VSD, large ASD, with two significant heart murmurs, Pulmonary Valve Stenosis and one kidney. It has been a terribly frightening road, but with our faith in the Lord it has become an absolutely sacred and special experience that George and I have been able to share together. Jaelyn is our little heart angel and we're so proud to be her "heart mom and dad". 
This picture was taken when she was only 4 days old. And this wasn't her first smile. George and I have heard that babies can't connect mentally with smiling this early, but we say that's not so. She's got so much to be sad, mad and confused about, but she's been smiling from the beginning. She's got a broken heart, but that doesn't keep her from loving life.

“Life is not measured by the number of breaths we take, but by the moments that take our breath away.”

Baby News, Baby Shower, & Christmas

Well, we went to our appointment and learned that our daughter is now in the 16th percentile of weight, when measured up against girls, since girls are typically a half pound lighter than boys anyway. However, while at the appointment, our doctor was unable to locate or see the right chamber of our baby's heart. Whether it be that extremities were in the way, I was going into this kind of appointment late into the pregnancy, she wasn't in the right position, or that simply she has not developed the right side of her heart. So, the "specialist" has referred us to see another specialist, a Pediatric Cardiologist.

We have tried to speak to our OB/GYN about why this didn't come up earlier in the SEVEN ultrasounds we've already had, since they are supposed to have a checklist of what they need to look at while doing them. But they would rather us come in for an appointment so we could talk to them in person, since we found out only a couple hours before our flight to Utah and have needed to deal with part of this while being up there. So we rescheduled my check up appointment, so that George could be there and we could discuss what has happened within the ultrasounds performed previously. 
All in all, George and I feel as though everything will be fine. We of course are concerned, but are choosing to gain further knowledge until we can say one way or another what is "actually" happening.

On a lighter note, I was barely able to receive permission to fly to Utah for Christmas, but succeeded in doing so anyway and had a wonderful time! We had a fabulous Christmas and New Year and was able to spend some quality time with our family and friends. My family put together an awesome baby shower for me which went great. I'm so grateful for all my friends and family who were able to attend and support. Thank you! Thank you!