That We Might Have Joy: Shelby's Story

February is Heart month and the week of the 7th-14th is CHD awareness week!!  Now you might be asking what is CHD and why should I care about raising awareness?  I felt that same way 4 years ago.  

CHD stands for Congenital Heart Defect or Congenital Heart Disease.  1 in 100 babies are born with some kind of heart defect.  That makes CHD's the most common birth defect, yet the research for this is severely underfunded.  More children die from heart defects every year than all of the childhood cancers combined.  This is a crazy statistic, yet we never hear anything about it! This is why we are sharing our story in hopes to raise awareness.
Our daughter's story begins in April of 2013.  I had just found out that I was pregnant.  Things were going great!  I wasn't very sick, and the baby was growing.  We were nearing our 20 week appointment where we would find out the gender of the baby.  I had been busy on Pinterest trying to decide what I wanted the nursery to look like.  I was excited to finally find out and start decorating.

Our 20 week ultrasound was in August.  The ultrasound started.  They, of course, checked all of the other body parts first to make sure the baby looked good before they told us the gender.  I was on pins and needles.  Then finally, "IT'S A GIRL!!!"  We were so excited.  The ultrasound tech continued checking a few more things.  Then, she was trying to get pictures of the baby's heart.  The baby wasn't cooperating, so we kept trying to move her around.  The tech just kept saying, "I'm not seeing what I need to see."  We were in the ultrasound for about an hour, which is much longer than normal.  She finally told us that the doctor was going to have to talk to us about a few things.

We went back into the exam room and waited for the doctor, not really knowing what was going on.  When the doctor came in, she was very flustered.  She started saying all these things about the baby having a hole in her heart and that there was something else wrong, but she wasn't going to say anything until a specialist looked at her.  She said that we were going to need to transfer care to the University of Utah and go to a high risk OB/GYN. 

My husband and I were very overwhelmed.  What had just happened?  Just a few minutes ago we were so excited, and now we felt like our hopes and dreams of having a healthy baby were being crushed.

We were referred to another doctor, and she did another ultrasound and confirmed that, yes, the baby had a hole in her heart.  Yet again, we were told that there was something else that they were concerned about, but they weren't going to say anything until we had a fetal echocardiogram done.  This is an ultrasound done specially for the heart.  They are able to see things a lot clearer than just a normal baby ultrasound.

So yet again, we had to wait for someone else to look at our baby to give us answers.  We were referred to Primary Children's Hospital, and in October, we went in for our first echo.  The room was dark, and the lady doing the echo wasn't saying anything.  It was a very tense hour.  After they were done taking pictures, we were taken into a consultation room.  There was a doctor, a nurse coordinator, a social worker, and a couple other people all crammed into this tiny room.  We were very intimidated by it all. 

They pulled out some papers that had diagrams on them and pulled out a model of a heart.  They began explaining to us that our daughter had a Congenital Heart Defect called Tetralogy of Fallot, Pulmonary Atresia with a Ventricle Septal Defect, and something called MAPCA's.  This meant she was missing her Pulmonary Artery, which takes the unoxygenated blood to the lungs to be oxygenated.  Her body tried to compensate for not having a Pulmonary Artery and grew a bunch of little veins the size of angel hair pasta and smaller (these are the MAPCA's).  The Ventricle Septal Defect was the hole in her heart.  They also began to tell us that sometimes there are genetic abnormalities associated with this defect.  The most common is called DiGeorge Syndrome.  They said it ranged in severity from she has it and you don't know, or she could be severely handicapped.  They continued on to say that they weren't sure if they were going to be able to do surgery on her when she was born.  They would do an echo after she was born to determine if the MAPCA's were big enough to do the surgery. 

As they were telling us all of this, we were just in utter shock.  How is this happening to us?  Why is this happening?  We just couldn't believe it.  I was crushed and sobbing uncontrollably. We are going through this pregnancy, and now you are telling us that our baby might not even survive?!?!

We left there numb.  What do we do now?  We told our families and for the most part they were very supportive.  When you receive devastating news like this, it takes time to accept it.  You have to go through the grieving process.  I felt like my baby was already gone, and I hadn't even gotten to hold her yet.  Even trivial things were hard.  Do we have a baby shower for a baby that might not make it?  We eventually decided to have the baby shower and try to focus on the positive.  If she wasn't going to be here on earth with us for very long, we were going to try and enjoy her as long as possible.

The rest of my pregnancy came and went.  We had lots of ultrasounds and echos and did lots of stress tests towards the end.  It was January 2nd, and we went to the University of Utah Hospital to be induced.  My labor wasn't anything out of the ordinary.  We were, however, in a special delivery room that had a direct window into the NICU.  When she came out, the doctor held her up, my husband cut the cord, and she was sent through the window.  It was a couple hours later that we finally got to see her.  

She had to be life-flighted to Primary Children's Hospital (more like the life-flight team walked her across the catwalk).  The first four days were rough.  We didn't know what was in store.  They did an MRI on her at three days old to see if the MAPCA's were big enough for surgery.  They also took blood to begin the genetic testing to see if she had DiGeorge Syndrome.

We finally got the results back from the MRI-- the MAPCA's were big enough to do surgery.  We were so happy!!  They did caution us that even though they were able to do surgery, we were still not out of the woods yet.

So at four days old, we sent our baby off for an eight hour heart surgery.  I cannot even begin to describe the agony of sitting there waiting to hear how things went.  The doctor finally came out and told us that the surgery had gone as well as they had expected. 

We were in the hospital for 22 days.  She came home on oxygen and a feeding tube.  We had 2-3 doctor appointments every week for the first year of her life.  Again, we were very overwhelmed with having a special needs baby, but we witnessed another miracle.  The results from the genetic testing came back, and she did NOT have DiGeorge Syndrome.

We were hoping that she wouldn't need her second heart surgery until she was six months old, but her little heart wasn’t going to make it that long.  At four and a half months old, she had her second heart surgery.  This one was 12 hours long.  We were in the hospital for 17 days after this surgery.  She wasn't doing very well after the second surgery, and they starting telling us we might need to prepare ourselves for making her comfortable and letting her go.  After countless prayers and blessings, we were trying to come to grips with this.  But she proved us wrong again!!  She is such a fighter.

She continued to need intervention as the pressures in her right ventricle were growing too high.  She had 4 heart caths (going in through the femoral artery and winding their way up to the heart to work on it) over the course of 2 years to balloon open and place stents to try and keep those arteries open and the blood flowing well.  

Then, in January of 2016, after going in for a routine echo, our daughter's cardiologist told us that the pressures were building in her heart again.  She would need another open heart surgery.  He told us that we were running out of options for her, because the ballooning and stenting were not solving the problem.  He told us that the surgeon at Primary Children's would review her case and see if he would be able to do the surgery.  He also told us about a doctor at Stanford.  His name was Dr. Hanley, and he was the world renowned expert for Teagan's condition.  

At first, we were hoping that the local surgeon could do the surgery.  Going out of state for heart surgery would surely be financial ruin for us.  As time went on though, we felt that if this was our last chance for our daughter, we wanted to feel like we did absolutely everything in our power to help her.  After a phone conference with Dr. Hanley, we decided we were going to California.  I started to cry when we got off the phone with him, because I was not sure how we were going to make this work financially.  Our insurance didn't cover out-of-network doctors and hospitals, let alone the cost of hotels, food, and my husband and I having to be gone from work for a month straight.  This was such a big trial of our faith to move forward with this decision.
After lots of fighting with the insurance, we finally got the approval to go to California.  When we finally got our surgery date from Dr. Hanley's office, we were still 6 months out.  This was very frustrating, because we were watching our daughter's health decline.  She would get tired really easy, and if she ran around like a normal child, her lips and hands would go blue.
January finally came, and we drove to California.  They wanted our daughter to have a cath before the surgery, so they could have a better idea of what was in there before they actually opened her up.  The cath went well, but her lungs didn't like it, and she had to be on oxygen for a few days in the hospital.  While we were recovering from her cath, they told us that the surgeon had come down with the flu and that he would be unable to operate on our child.  They were sending us home.  It was very discouraging since we had just driven 13 hours to get there.  So reluctantly, we went home.

Dr. Hanley's office called a few days later and gave us a new surgery date of February 1st.  We chose to fly this time, since the drive was hard with a 3 year old.  We arrived again to the hospital for all of her pre-op testing.  Unfortunately, she had started in with a fever that morning, and it is very dangerous to do heart surgery if the patient is sick.  They were sending us home again!  I started crying, because it was costing SO much money to come back and forth to California.  We later found out that she had come down with RSV.

Dr. Hanley's office called yet again, and we had a new surgery date of March 8th.  We hibernated in our house until then and finally made it to the hospital healthy and ready for surgery.  Our daughter's surgery ended up being 13 hours long.  We met with Dr. Hanley after, and he said that he was able to bring her pressures down significantly.  He also said that hopefully she will never outgrow the arteries that he was able to create for her.  It was such wonderful news!!  We knew immediately that we had chosen the right decision to have surgery in California.  We were in the hospital for two weeks, and then we were able to come home.

Our daughter came home on a feeding tube again, so that was another hurdle that we needed to overcome.  She also had some vocal chord damage from the open heart surgeries, so she was aspirating thin liquids.  The nerves for your vocal chords run down by your heart, oddly enough.  She ended up having to have a surgery to help with that also.

It has now been just about a year since her 3rd open heart surgery.  After countless days and hours in the hospital, doctors' offices, and therapies, she is now eating on her own and off of the oxygen.  She is growing and developing.  I can't even begin to tell you what a blessing she has been in our lives.  She has touched the lives of so many people.  She has strengthened our faith along with many others.  She has provided many opportunities for others to give service.  So even though this journey has been SO hard, we wouldn't trade it for anything.  We have had the opportunity to see the hand of the Lord in our lives and meet so many great people that we never would have gotten the opportunity to if she hadn't been here.  While she still has a long road ahead of her, she goes through it all with a smile.  She is a miracle.  Each day we get with her is a miracle.

I have come to accept that our daughter will never be out of the woods, but a friend once told me that "sometimes the woods can be beautiful too!"  Despite your situation, you can choose to be happy.  Some days you'll have to fake it 'til you make it, but we were meant to have joy!  Just because we are a "good" person or just because we are "religious" does not mean that the hardships of life will pass us by; it simply means that as we try to live a good life and lean on our Savior, we will be better prepared to weather the storm.

President Russell M. Nelson said in his talk about joy and spiritual survival: "Men are, that they might have joy."  He goes on to say that "life is filled with detours and dead ends, trials and challenges of every kind.  Each of us has likely had times when distress, anguish, and despair almost consumed us.  Yet we are here to have joy?  The answer is a resounding YES!"

How do we find this joy?  How do we not focus on these hardships that seem to take over our every thought?  How do I be a good mom, when every time I look at my daughter I wonder how much longer I will have with her, and I just want to hide away somewhere and cry?  

The answer?  "The joy that we feel has little to do with the circumstances of our lives and everything to do with the focus of our lives."  A thankful heart is a happy heart!


Depression Isn't Always Sad

I know depression is most commonly associated with sadness and crying, but it's definitely not limited to that.  It has only been in the last couple weeks that depression has started to show itself in the form of crying again.  For the last few months, depression has been:

Struggling immensely to get out of bed every morning.

Getting back into bed 100 times a day, spending hours in bed each day, and not knowing how to get through life any other way.

Wondering every morning why people get up and do things and where the motivation comes from.

Feeling absolutely nothing at all, until it builds up for long enough and comes out in a day of intense crying, before going back to feeling nothing again.

Knowing that I'm not keeping up, but not caring enough to try to actually keep up.

Wishing I can change, but feeling completely overwhelmed the second I start to think about how.

Feeling discouraged before even starting a task, so I don't start at all.

Staying inside for days at a time and not seeing anything wrong with never leaving the house or doing much of anything.

Having this feeling of wandering aimlessly and wishing for some kind of purpose to life again.

The desire to do anything that can make time move forward, even if that means wasting time for hours on end.

This kind of depression is so hard to identify, and possibly even harder to work through.  I feel nothing, do nothing, and only occasionally does that bother me.  Of course, I was really sick with pregnancy for those few months too, but it was only recently that I realized how much I have been struggling without really knowing it.  I guess this has become almost like a new normal, so it doesn't feel so different anymore.  Yesterday and today I have been really sick again, but once I start feeling better, I am determined to start doing more with my days again.  And when I feel overwhelmed or hopeless, I will remind myself that this is a season, and so soon I will be able to get help with a medication again.  There are happier days ahead!

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