Thursday, February 12, 2015

CHD Awareness Week - Our Story Part 3

Our Story - Part 3

Liam always has his bi-annual cardiology appointment during heart week!  We went yesterday to see Dr. V and the results were great!  NO changes since his last visit last August, so all is good!  His next surgery will hopefully be far away for now (maybe even age 12?  YAY!)  so we are so thrilled for this news!  Praising God for a wonderful report!


Liam's second open heart surgery was June 3, 2010.   This was the "big" one for us, his full repair surgery where they were to close the large VSD and put in the homograft pulmonary conduit and removing the BT Shunt.  We started the day before with a heart cath, that went well, but left Liam congested and needing a lot of help from Respiratory Therapy that night.  The next morning he was whisked off to surgery.

After full repair surgery, June 3, 2010

Everything surgically went as best as could be expected.  It was recovery that was the hard part for us.  Multiple failed attempts at extubation, feeding was a rough road.  We ended up staying for 15 days total, and were discharged straight from the CHSU with Liam on home oxygen.  We think he had a virus going into surgery that decided to surface and cause all sorts of issues.

Recovery - 2nd OHS

Unfortunately, when we found out about Liam's heart defect, we knew he would have to have multiple surgeries.  We were hopeful it would be limited to about 3 or 4 during his lifetime.  With is condition, the conduit has to be replaced due to growth.  We he is about 6 or 7, they should be able to fit him with a conduit that will last him into adulthood.  This being said, you can imagine was a shock it was, when on October 26, 2010, during a routine Cardiology follow up (for a 3 month follow up from the last visit), we found out there had been a "change" on the echo that needed to be looked into...Then on December 2, after a heart cath, we found out the devastating news that Liam would require yet ANOTHER surgery due to his homograft conduit deteriorating.  Too soon.

We were strongly urged to schedule the surgery as soon as possible due to the bad shape his homograft conduit was in.  They explained that sometimes the body rejects a certain type of "prosthetic" and for the next surgery they would be using a different kind, the Contegra Bovine conduit.  We scheduled the surgery for the end of December.  Liam actually did really well for both the surgery and recovery, sailed through it and we were home 5 days later.
Liam's 3rd OHS - December 29, 2010

To say that 2010 was a struggle for us would be an understatement.  It was definitely a year of enduring one thing after the next, with merely a chance to come up for air.  Since then, things have quieted down a bit.  Each year since, Liam has usually had to have a heart cath procedure to double check the flow rates and obstruction in his conduit, but prayerfully we have not had to have one the past year!

2011 was a much brighter year for us, Liam was weaned off his tube feedings finally, as it showed he was doing great orally taking food and thickend liquids.  Today, Liam is fully weaned off thickener, and eats and drinks like a normal 5 year old!  Praise God!  We still have a little work to do getting him to drink from an open cup, but we are working on it!

Every year, he seems to be getting stronger and stronger.  We were involved in occupational and physical therapy for awhile up until and after his third surgery, but eventually, he tested out of all the areas.  He is a normal, healthy boy right now, and we love it that way!

That's pretty much our heart story in a nutshell!  As you can see, having a child with a CHD is a LIFETIME affair - there is no CURE for CHD's, only research to provide better procedures and surgical techniques to help quality of life and delay surgeries as long as possible!  The continuing maintenance of Liam's CHD will be lifelong for him.  We appreciate you taking time to read about our story, and hopefully it helps give an inside glimpse into the life as a heart family!  In the next few days, I'll be sharing some resources and specific ways YOU can help be a part of the awareness campaign!
Liam today, 5 years old!

The following print I designed for a ladies retreat a couple years back, and love it.  It is so appropriate for our journey and reminds me that God is EVERYTHING to us!  I did want to share that while it is my design, I can not take credit for the wording, as I do not have a source.  The Psalm is 123.
Click on the image above for your free printable!

Tuesday, February 10, 2015

CHD Awareness Week- Our Story - Part 2

Ok, Part 2...the broken heart.

Surgery was imminent, as they explained to us before he left us, that he would be requiring emergency surgery.  My biggest fear is that I would be stuck in recovery, while my newborn child had open heart surgery.  Thankfully, they told us he would be having surgery sometime the following week, that they could keep Liam's heart pumping with a medication....more on that in a minute.

While Liam was getting all settled in at the city hospital, I stayed to recover back at our local hospital.  The nurses let me keep my epidural in that night, just so I could get some rest, knowing how stressful the past 12 hours had been for us.  I was grateful for this.  I did have some pretty major tearing during labor, as they had to use the vacuum extractor to get Liam out, after a solid 3 hours of pushing.  Needless to say I was exahausted.  Then throw on a diagnosis like we had, I was physically a bit of a disaster!  However, God was good and put great nurses in my path during my recovery who encouraged me to start pumping milk.  And that was my focus the next 24 hours of my recovery and the next few months...pump my heart out for my little boy.

3 days after birth, before surgery
Meanwhile, Liam was undergoing some testing and received another echocardiogram.  This gave our cardiologist, Dr. Verma, information to make an official diagnosis: Tetralogy of Fallot with Pulmonary Atresia.  This is a combination of 4 different defects, with 2 major ones that require immediate surgery.  Basically Liam's heart was completely absent of a pulmonary artery and also had a large VSD.  They were keeping him alive pre-surgery by giving him prostaglandin, which kept his PDA open.  The PDA usually closes within a short time after birth, but this was being used in Liam's heart as a bypass to his Pulmonary Artery, so it was imperative they keep it open.

One of our first family pictures
Liam underwent his first open heart surgery, to place a BT Shunt, when he was 5 days old.   The shunt was used to bypass the pulmonary artery while still providing blood flow throughout the heart.  Because the shunt causes oxygenated blood to mix with unoxygenated blood, Liam's O2 saturations would be low until he was big enough for his next surgery, sometime around 8 month - 1 year.
Morning before 1st open heart surgery, October 5, 2009

Following 1st open heart many machines and meds.
In recovery after 1st heart surgery

Liam flew through surgery with little to no complications.  He was in the NICU for 23 days…released on my original due date, October 23.  The only real complication he had was a paralyzed right vocal chord, which caused aspiration issues with his feeding.  We were discharged on NPO orders {nothing per oral} only being allowed to feed Liam through an NG Tube.

Our arrival home for the first time as a family was bittersweet.  It was overwhelming to be responsible for such a daunting task of caring for a newborn, let alone not be able to do things "normally".   For the most part, Liam tolerated his tube feedings fairly well, and we were able to keep him on a “normal” feeding schedule. However,  four months later and multiple swallow studies later, after using an NG tube for all feedings, we decided to have a G-Tube placed, as Liam's aspiration issues did not improve, nor did his vocal chord recover.  He had his G-Tube surgery on January 19, 2010.

Going home! October 23, 2009
That spring we also realized how a simple cold could turn into a hospital stay, something the doctors warned us about when we brought Liam home for the first time...that anything he caught could turn into a bad situation, fast, because of his heart and low O2 sats.  Devising a schedule and plan to keep him home 24/7 {thanks to my amazing dad and mom for watching him day in and day out for us that first year} it was still not enough, as Dustin and I both had to work full time outside the home, and thus risked exposing ourselves to viruses and such.  We took him to the ER one April night due to "dusky" color and wheezy breathing to find out his O2 sats had diminished into the 40's and required immediate admission.  That was a frightening night for us. Although he made a full recovery, we had to reschedule his full repair surgery to summer because of his illness.  That "full repair" summer surgery was a rough one.....stay tuned for tomorrow's post!
FREE printable has expired - Please visit my Etsy shop to find this print ;)

Monday, February 9, 2015

CHD Awareness Week- Our Story - Part 1

Today I thought I'd share something personal.  A glimpse into the life of a heart family and what living with a child with CHD looks like as a family.  Although all heart journeys are unique, I believe it would be fair to say there are some Crazy {with a capital "C", mind you!} ups and downs.  Fighting for your child's life one day, and fighting for a sense of normalcy the next.

Our CHD journey began on September 30, 2009, when our little bundle of joy, Liam, was born.  After 9 months of a wonderful and uneventful pregnancy, I went into labor naturally that morning, headed to the hospital and Liam was born a few short {well, long in my book!} hours.  Because I went into labor one day shy of full term, 36 weeks, 6 days, (can anyone say God’s perfect timing??) the NICU team was on stand by as a precaution. Shortly after birth, the NICU team noticed Liam was not getting enough oxygen and also had a "slight" heart murmur….they assured us they dealt with this all the time and that Liam just needed to be monitored for awhile on oxygen.  While to doctor continued work on me, the nurse anxiously handed Liam to me all swaddled up,  telling us to give him a quick hug and kiss, snap a picture and that we would see him again real soon.  She whisked him off after only a quick introduction and about 5 hours later, we got the news that changed our world forever.

 "Your child’s heart is broken and he has to have surgery to fix it."

When the cardiologist initially came in, he was saying Liam had a complex heart defect, and to really get a good diagnosis, he would need to be transferred immediately to the hospital down town.  Shocked and scared at this news, we were devastated.  HOW could we not have known this?  WHY have we never even heard of this?  It must be a VERY RARE condition, we thought to ourselves.  Our faith in God proved us well and encouraged us to know He was in control and had Liam in His hands, the best place he could be.  But the questions never ceased in my head...what if, how, WHY....

Later that night, Liam was transferred to the big city hospital in one of those clear cocoons {or so I call them}.  It seemed very surreal to me seeing him in that big clear "box", what I had only really seen on TV and in movies.  In fact, when we were saying our goodbyes, the nurse cut off my "mommy wristband" {the ones you and your baby both wear to make sure the nurses can see they match up for security purposes - ours actually would set off an alarm if the baby went more than a certain distance from me} and I had no recollection afterwards of that even happening.  I remember very clearly though, being wheeled back into my hospital room with empty arms and silence awaiting me....babies crying down the hallways, in all the other rooms, except for mine.  The stark contrast of that moment was heart breaking for me and something I will never forget.  While Dustin followed Liam in the ambulance to the city hospital, I sat recovering in our now empty room.  My mom and dad were there and I am so grateful they were, but in my mind, my arms were empty, aching and I was alone.....

.....Stay tuned for Our Story - Part 2 on tomorrow's post

FREE printable has expired - Please visit my Etsy shop to find this print ;)

Are you new to my blog??  Welcome!  And if you are, I want to say THANK YOU!  For taking the time to help spread awareness for our country's #1 birth defect. 

Saturday, February 7, 2015

CHD Awareness Week - Kick-Off!

Today is the first day of CHD Awareness Week!  I've decided to link back to what I did a couple years ago and include free heart printables each day.  Join us this week as we help spread awareness for Congenital Heart Defects.  If you are a first-time visitor to our blog, welcome!  You have probably arrived here via someone you know or love who is affected by Congenital Heart Defects or maybe you have no idea what that even is...either way, I am so glad you stopped by.  Your presence here is important to our cause!

First, I'll start off with the facts:
  • Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.
  • Congenital heart defects are the #1 cause of birth defect related deaths.
  • Congenital heart defects are the leading cause of all infant deaths in the United States.
  • Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood.
  • Each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood.
Pretty startling, right?  I know I was.  Our journey with CHD's started just over 5 years ago, when our son Liam was born.   Long story short, we had no idea what a "CHD" was, or how common it was, nothing.  Just a scary diagnosis and a lot of prayer.

Unfortunately, our kind of diagnosis happens...a lot.  One time is one too many.  CHD awareness is critical in order to provide resources, gain research and offer support for the thousands of families who must walk this journey each day.  YOU are an important part of this equation.  Just by reading these facts and understanding a little bit more about Congenital Heart Defects, you are helping awareness succeed.

So why, you ask, if this is so common, do we really need an awareness campaign?  Great question, and here is the WHY:
  • Congenital heart defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease.
  • Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research.
  • Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.
We all know a critical component of any disease or defect is RESEARCH:
  • In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research.

Throughout this week, I'll be sharing stories of our life with a child who has a complex CHD and introducing you to resources that have played a vital role in our journey.  And that's not all!  For only $9.99, you can receive...haha,  Just kidding there!  But I do really have some more for you, a little something to help spread that awareness thing I was  talking about and to get people here to read more about CHD's.  I have designed 7 different "heart" scripture printables that will be available to download FREE off my blog this week.  One each day of Awareness week.  The only thing I ask in return is that you share this with someone, and not just the free printable {you have to make them pinky-swear they will read the blog post first!}, but the information, stories, resources either off this blog or the numerous other CHD blogs and sites that will be hosting similar events {see my sidebar to the right for other great Heart Mom blogs!}.  THANK YOU for helping to spread awareness of our country's #1 birth defect! 

FREE printable has expired - Please visit my Etsy shop to find this print ;)