Saturday, February 16, 2013

Update

Emma has held down/kept in 1/2 strength formula and pedialyte today. No more IV. Her energy levels are still down since she has not had nutrition for a few days, but she has played some today in between naps and "rock-rock

Friday, February 15, 2013

Sick Baby Girl

Today's Recap:

1. Emma had diarrhea and vomited(once) yesterday.
2. Woke up super lethargic today... Continued to have diarrhea.
3. Called the best medical team Ever at CMC. Got her right in, ran lab work, urine, and X-ray.
4. Labs show dehydration, low sodium, and other labs slightly off... Admitted to 8th floor.
5. Stopped PO(by mouth/tube) feeds started IV fluids.
6. Resting with Daddy.
Thank you again for checking in on our sweet girl and praying for her. ❤❤❤❤








Tuesday, February 12, 2013

Information Booth: Mended Little Hearts of Dallas


Moving on in our journey around the Heartland Amusement Park we find ourselves lost, disoriented, and needing support.  That is when we stumble upon an information booth with info on two groups that can help us navigate this Heartland Amusement Park .  You see, they have been in this park before.  Maybe they haven't ridden all the rides, but they can help you connect to people who have.  These two groups are called Mended Little Hearts of Dallas and Sisters by Heart/Linked by Heart. 

 I am going to feature these two organizations over the next two days and explain how vital they are in supporting and encouraging families, spreading awareness and education, and providing tools and information to help these families through this unbelievable journey. Today's post will feature Mended  Little Hearts of Dallas.  I will explain what MLH of Dallas is all about and spotlight two of our Coordinator's Heart Heroes and one of our Coordinators who is a Heart Hero herself. 



According to our Mended Little Hearts of Dallas Website, 

“A Heartbeat...for many parents, hearing the heartbeat of their unborn child becomes their first, loving bond to that child. It's no wonder, then, that discovering that their child has a heart defect, whether diagnosed in the womb, shortly after birth or during childhood, can be devastating.
Mended Little Hearts, a support program for parents of children with heart defects and heart disease, is dedicated to inspiring hope in those who care for the littlest heart patients of all. Mended Little Hearts offers resources and a caring support network as families find answers and move forward to find healing and hope.”
http://dallas.mendedlittlehearts.net

video


Our Dallas chapter is just over a year old.  We hold monthly meetings at Children's Medical Center in Dallas where we bring in "non-hospital" food, have door prizes, craft projects, guest speakers, and a lot of time to offer each other support and encouragement.  We have just started our Care Bag program.  Our goal is to hand out Care Bags filled with comfort and personal care items to the families in the CVICU and 8th floor during the first visit to Children's Medical Center in Dallas.  There are a couple of us who have completed the necessary training to be official volunteers at CMC, so we go a couple of times a month to CMC's heart floors to visit families in the hospital.  We also have fun family activities as well as helping out with other CHD awareness activities. 

This group has been a great encouragement for me.  It is nice to have other Heart Parents to talk to about the day to day journey of living with a child with a CHD.

If you are interested in helping out our small but mighty group please contact me.  We can always use Care Bag items.  But more importantly if you know of anyone in the DFW area that need a CHD support group please send them our way.   


Meet Some of Our MLH of Dallas Heart Heroes: 


 Jackson Whitehead:
After an uneventful pregnancy filled with sonograms showing my healthy baby, Jackson Thomas Whitehead was born on January 5, 2011. I had a planned csection and by the time we went from the OR to our room the nurses new something was wrong. Jackson was making a hiccup like noise which alerts the nurses that he is having trouble breathing. They took him to the NICU where they were focusing on his lungs. They thought they might be underdeveloped even though I had him during my 39th week. A cardiologist was brought in and an echocardiogram was performed on Jackson. That's when they found his heart defect. It's called Total Anomalous Pulmonary Venus Return (TAPVR) and it's when none of the four veins that take blood from the lungs to the heart is attached to the left atrium. This is extremely hard to detect before the baby is born since babies do not use their lungs until after they are born. We had Jackson at 1pm, they figured out that he had a CHD later that night, he was transferred to Medical City Children's Hospital and had his heart surgery the following morning.  It was a whirl wind of heart break and a fear I have never experienced before. I was only able to hold him for about 20 minutes before he was taken away from me. I was also stuck at the hospital I gave birth at while he and my husband were at Medical City. When I was finally able to leave my hospital I spent day in and day out next to my little boys side. He was my first born and before this I never even heard of congenital heart defects. The surgery was a success and after 19 days we were able to take him home with just one heart med and some meds to help with his withdrawal from the pain medication used while he was in the hospital. He currently has a minor heart murmur and will have to see a cardiologist once a year for many more years to come. The one thing that has to be watched is that no scar tissues builds up in the heart at the surgery site. If that happens he will have to have heart surgery again. Statistics show that if a child makes it through the surgery successfully he will only have a 5% chance of this happening. Besides the murmur he is a happy and thriving 2 year old boy who is so smart and very caring. He is my little survivor! 



 Erin Winsett:

I was born in 1980 with tetralogy of Fallot. In the fall of 1982, I had my corrective surgery. I also had the mitral valve widened in 1992 by a valvuloplasty. I was told by my mother from a young age to not let my condition stop me from having a normal life. She insisted I see a cardiologist yearly and I still do! I have been very blessed health-wise and will be able to have children which is perfect because I am a newlywed!




 Mason Studer:

Our son Mason was born on December 23rd, 2010. He was born with multiple congenital heart defects: aortic arch hypoplasty, aortic coarctation, an atrial septal defect and a ventricular septal defect. Fortunately, a very qualified sonography technician detected the defect at 20 weeks of gestation. Due to this, the doctors were able to formulate a plan that gave Mason the best chance for survival. He had open-heart surgery on January 3rd, 2011 at Children's Medical Center. Only six days post-op Mason came home and is now a thriving 2 year old!



Monday, February 11, 2013

Healing Our Hearts: Part 2


“Life’s not fair!”  I heard these words probably a MILLION times from my Dad.  However, I really thought my life was pretty GOLDEN.  I married the Love of my Life; we were finishing our education, and having a baby.  What could be better? 

Then we hit the Heart Defect Jackpot………..



 I was in survival mode at first and Scott was my right-hand man.  He let me be emotional when I became overwhelmed with the thought of it all; came to every appointment, helped me do normal things like put together Emma’s nursery, and took care of me when I wasn’t feeling well.  After Emma was born, Scott was my rock.  We went through so much together, but looking back, we were pouring everything we had into Emma.  Although we went on occasional dates, we were going through the motions.  We put brave faces on just to get through the day.  Don’t get me wrong, we loved each other, but OUR relationship was most definitely on the backburner.  Conversation revolved around Emma and her care….anything else just felt forced.  We slept in the hospital, ate in the hospital, showered in the hospital…well, you get the picture…private moments did not happen much and most of our schedule happened in shifts so someone could be at Emma’s side at all times.  Imagine living like that for a year.  LIFE’S NOT FAIR! 

The fallout really happened when we got to leave the hospital after Emma’s Glenn.  Emma was 18 months old and for the first time in almost two years (diagnosis and infancy) we were alone to truly face what had/was happening in our lives and how we were going to cope/live with it all.  Scott was/is working in Oklahoma, so he traveled a lot.  I began to resent the fact that he got to leave the house, have adult conversation, and get a mental break from the day-to-day.  My fuse was short and I did not have a lot of patience with Scott.  I spent a lot of time criticizing his way of taking care of Emma, his lack of concern for my needs, and his constant time away from us working.  See a pattern here……ALL ABOUT ME.  Scott was tired of my constant attitude and he began pouring himself more into work and staying out of my way.  His patience was wearing thin.  Fast forward Fall 2012 and I had enough.  Enough of the hot/cold, enough of keeping up appearances, and enough of getting by, so we met with some dear friends and mentors to get advice.  Let me interject for a moment and say that it was not all bad.  We had our happy times, we laughed, and we loved, but it wasn’t how it needed to be and most of those times were during our "get-aways".  Maybe that was because we were in a momentary fantasy world  where the "life's not fair" didn't exist.

 

We attended a marriage seminar this past weekend.  It was entitled a Marriage that Endures.  We really focused on Ephesians 4:17-5:33.  I highly suggest you read through it.  The end of Ephesians 5 focuses on marriage and Christian households, but if you go back and read from the middle of Ephesians 4 then you will clearly see how it applies to the marriage relationship. 

Areas of Importance:
Improve Communication
Give Daily Compliments and Attention
Find Time to Talk Alone
Never Ignore Partners Feelings
Live Like Christ
Tenderly Forgive When Wronged

Scott and I are now INTENTIONALLY working on our marriage.  We have a few books we are going to begin reading through, but more importantly we are going to refocus our lives on God and read HIS book because, no matter what is happening in your life, if your eyes are fixed on the Cross of Christ and the eternal then the list above will more easily fall into place. 

Our speaker, read this quote from Tertullian in 202AD:

"How beautiful, then, the marriage of two Christians, two who are one in hope, one in desire, one in the way of life they follow, one in the religion they practice.

They are as brother and sister, both servants of the same Master. Nothing divides them, either in flesh or in Spirit. They are in very truth, two in one flesh; and where there is but one flesh there is also but one spirit.

They pray together, they worship together, they fast together; instructing one another, encouraging one another, strengthening one another.

Side by side they face difficulties and persecution, share their consolations. They have no secrets from one another, they never shun each other's company; they never bring sorrow to each other's hearts… Psalms and hymns they sing to one another.

Hearing and seeing this, Christ rejoices. To such as these He gives His peace. Where there are two together, there also He is present, and where He is, there evil is not."
This was written so long ago yet has so much pertinence today.  We are not promised that life will be easy, but maybe instead of focusing on the negative I will focus on the blessings, both big and small.  After all, I do have an amazing husband who works hard for this family and can make me laugh when I can't seem to find a reason to smile.  We are together forever...through the good and bad and sickness and health.  As our dear friend Steve Minor told us years ago, we burned the ship (story here) and no matter what we will find a way to get through it and come out stronger.  


Once again, thank you for allowing me to be vulnerable.  And I challenge you to be INTENTIONAL in your marriage.

As always, God is Good!  All the time!  God is Good!

Sarah 


                  

Saturday, February 9, 2013

The Love Boat (Healing Our Hearts Too) Part 1


Intro:
Another ride in the Heartland Amusement Park is called The Love Boat.  This is supposed to be a "happy/easy" ride--a water ride that gently wound around a tropical paradise in which one could sit down, relax, and take a break from the other crazy rides in the park.  The ride began as tranquil as promised--we floated effortlessly through this paradise ride.  Then, all of the sudden, our boat dropped straight down off of an unexpected waterfall.  We were at loss for what was going to happen next.  The stress of it all created tension between Scott and I.  There are other couples on this ride.  We all thought this would be easy and that it would bring us closer together and none of us were truly prepared for the fall.  




My Inspiration to Write This:
One of my fellow heart moms, Amy Bennett, wrote a series on her blog entitled: Healing a Hurting Marriage.  I read these posts and felt like Amy had opened my heart---had wrote down my feelings.  So, I am going to quote, with her permission, directly from her blog:


"Having a medically fragile child, particularly with a diagnosis like Hypoplastic Left Heart Syndrome, involving multiple open heart surgeries, can put an unbelievable amount of stress on a marriage. Before your diagnosis, it’s like your life is a nice tiny little ball of neatness (for the most part). Then, you get your diagnosis and the ball gets thrown in the air and completely explodes. Then, until your baby is born and for the first 6 months to a year of your child’s life (sometimes longer, depending on your child’s complications), you’re trying like mad to keep the pieces in the air as much as you can. You’re trying to keep things from hitting the ground. And you’re so busy trying to keep the important pieces (you know, keeping your kid alive) up in the air, you’re pretty much ignoring the unimportant ones. You’re making spur of the moment decisions on what’s unimportant enough to hit the ground.

Then, once things settle down,  and you’re far enough past the Glenn that the surgical experience starts to fade and the Fontan seems light years away, you finally have some time to look around and examine all of the pieces of your formerly tidy little ball of a life. Some pieces are bent, some are broken, some are just flat out missing. Where’d they go? God only knows – you were too busy juggling the other pieces to notice. And you try to scoop everything up into that tidy little ball again, desperate for order amidst the chaos.  This is what I lovingly refer to as “post-Glenn Fallout” period.

You have to spend time getting to know this new life, this new “normal.” Maybe you allow yourself to process the grief – maybe you don’t. After all, your child is thriving, so what right do you have to feel any sense of grief? In so many ways, this life is SO MUCH better than the life you had expected. But it’s still different. And you can’t ignore the ways it’s different. And, as tempting as it is, you can’t ignore its effect on your marriage or relationship."



Our Back Story
Scott and I are high school sweethearts.  We met at church when we were 15 and 16, started dating at 16 and 17, married at 19 and 20, and had Emma when we were 25 and 26.  So, as you can see we have been a part of each others lives through many milestones.  We could not have been more excited to have a baby.  We thought we had everything planned out.  Scott was finishing up Pharmacy School, I was going to "retire" at the end of the school year, and we were more than excited to move into the next phase of our lives.  We had our share of disagreements before Emma, but when we said "I do" we burned the ship so-to-speak and we would work through whatever trivial disagreements we had.  Our foundation had really never been truly rocked and tested.  Along came Emma's diagnosis, moving to Texas, Emma's complex and complicated medical conditions, living in the hospital for a year, making difficult decisions about her care, almost loosing her 6 times, being away from our support system, Scott traveling a lot for work, me trying to finish my PhD, etc. and we not only fell over the edge of that waterfall, but we fell out of the boat and felt like we were drowning.  However, we were pretty good at making it look like we were still in the LOVE BOAT enjoying every second of the ride.........

Way Back in Younger Years
Two Were Joined As One
And Baby Makes Three

I will write PART TWO of this series tomorrow.  What steps have we taken to help bring us back together, restore our marriage, and live like God intended us to?  I have gone back and forth on writing these posts.  I hate to be vulnerable like this, but I was so encouraged by Amy's posts.  And, my goal is let others know that they are not alone in feeling this way when their WORLD is rocked by unexpected tragedy, illness, etc.  And, why Scott and I are INTENTIONAL in working on our marriage and strengthening the foundation.  

Thank you Amy for opening your heart and allowing me to share!
Here is a Bio on Amy's ADORABLE SON Bodie:

Bodie Isaac Bennett was born on February 16, 2010. He had his first open heart surgery, the Norwood, on February 22, spending 5 weeks in the hospital before coming home. He was home 3 weeks before being readmitted to the ER for low oxygen saturations. On April 26th, he had his second open heart surgery, a takedown of his sano shunt, and addition of a bt shunt and pacemaker. He flew through recovery, returning home a mere 2 weeks later! 4 days later, he was readmitted to the hospital for blood in his stool. He then spent 66 days in the hospital, battling c-diff, parainfluenza and MRSA (medically resistant staph). He came home 8 weeks later!

He then spent almost 2 months at home before having his bi-directional Glenn surgery on September 13th, returning home just 5 days after surgery!!! He will have one more "scheduled" surgery, the Fontan, sometime this summer.
Despite Bodie's rough start, he is amazing. He has caught up developmentally in every area and will be starting preschool next week. He continues to inspire us and we are grateful every day that God chose to bless us with Bodie.

I mean seriously, he is ADORABLE!

Bennett Family

Sweet Heart Mom and her Heart Hero



God is Good!  All the Time!  All the Time!  God is Good!

He is giving us the strength to get through and praise HIM through it!

Sarah 









Friday, February 8, 2013

The COLD HARD FACTS of Congenital Heart Defects

At the "Heartland" Amusement Park there are several shows to participate in when you need a break from the rides.  One of these shows is called 1 in 100.  You are asked questions regarding Congenital Heart Defects and asked to give an appropriate answer.  I am going to give you a "Cheat Sheet" so-to-speak just in case you ever find yourself as a contestant in this game.  Some of these facts may seem unbelievable to you.  Trust me, they are very true.  So study up, you never know when you might need to know these things to help a friend, acquaintance, or even family.


CHD Facts

  • Congenital Heart Defects are the #1 birth defect worldwide
  • Congenital Heart Defects are the #1 cause of birth defect related deaths worldwide
  • About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect in the United States (approx. 40,000/year)
  • Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for Congenital Heart Defects
  • Each year worldwide 100,000 babies (under one year old) will not live to celebrate their first birthday
  • Each year in the United States approximately 4,000 babies (under one year old) will not live to celebrate their first birthday
  • The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year
  • Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research
  • The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD
  • Though research is ongoing, at least 35 defects have now been identified
  • Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood
  • It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications
    • http://www.itsmyheart.org/index.php?option=com_content&view=article&id=46&Itemid=417 




    Normal Heart vs Emma's Heart (except Emma's ASD was highly restrictive)

    My 1 in 100

    Thursday, February 7, 2013

    Day 1 of CHD Awareness Week 2013

    I will be sharing a list of statistics later today, but I wanted to do a quick post to remind everyone to:






    Monday, February 4, 2013

    No Turning Back

    In my first post for this month, I discuss the "no turning back" aspect.  I have entered the amusement park fully aware that I made the choice to come and ride these potentially crazy and uncertain rides, so it was now my choice on how I was going to view the rest of this adventure.

    I was asked by my DEAR FRIEND Lacy Crowell to do a podcast for Come Fill Your Cup.

    Come Fill Your Cup is a wonderful tool for ladies to dig a little deeper in their spiritual walk, listen to encouraging podcasts, attend retreats, participate in Bible studies, and read encouraging articles by our fellow sisters-in-Christ.  Here is what the website says regarding this wonderful service:

    "Grab a cup of tea, coffee, cocoa, water– whatever. Sit for a moment and take time to fill your spiritual cup. This is a space built just for ladies. It’s a space for you to read other ladies’ thoughts on scripture, love, life, God, our Savior and the Holy Spirit. It’s a place for you to be filled, but also to fill others’ cups. You’re invited to share your comments and thoughts, your ups, your downs, highs, lows, sorrows and triumphs. It is our most sincere hope that you will find encouragement to help you toward fuller service to God."

    Visit Their Website Here: 
    http://comefillyourcup.com  


    Click Below to Listen to my podcast:

    Fresh Blends Recording: Sarah's Story


    I was VERY HONEST in this podcast.  I truly said my deepest fears, feelings, guilt, jealousy, etc.  I hope when you listen to the podcast that you can see my heart.  I hope when you listen to this you will know that what I say does not mean to be harsh, judgmental, or a pity party.  It is just me.....telling my honest feelings.  


    As I was listening to the Podcast there are parts I feel like I was maybe too honest.....because you see I only reveal a lot of my true feelings to a few close friends/family.  A few things I would like to clarify.  First of all, we appreciate the medical staff at CMC in Dallas.  Yes, there are times that I felt their egos kept them from truly listening to us, but overall the staff worked very hard to give Emma the best chance possible.  We made a great choice in bringing Emma to CMC and we have never second-guessed that decision.  Secondly, Social Media (aka Facebook) can be hard for me at times.  I would never wish ill on anyone else, especially an innocent baby; however, I would be lying if I said that it is easy to see the “normal”, if that really exists, of so many people when Emma struggles every day to simply survive.  Let me also say that I have met so many amazing mothers during this journey.  Moms who are doing this on their own, young moms, adoptive moms, older moms, and other caretakers who have to be in the "mom shoes".  Most of us did everything "right" in our pregnancies.  However, in this process I have also seen some of these dear sweet babies lay in their hospital beds without any family encouraging them along the way, and/or families discussing the money they will receive from having a "special needs" child.    This is my struggle….envy that is.  I ask that you continue to pray for me as I do my best to take care of Emma, encourage and support others going through something similar, and maintain a Christian-like attitude. 

    I really do appreciate your prayers, support, and encouragement.  Being Emma’s mom has taught me so very much.  She is my greatest gift and biggest blessing.

    Thank you for allowing me to be open, honest, and vulnerable. 

    God is Good!  All the Time!  God is Good!

    Sarah     

    You made all the delicate, inner parts of my body and knit me together in my mother's womb.
    ~Psalm 139:13