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.

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.

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...