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 ;)

Sunday, December 28, 2014

What a wonderful year

Enjoying our sweet family so haven't had a lot of time to blog, but wanted to post up some pictures for all who still follow us along - we love you all and are so blessed to have such amazing friends and family surround us!  We wish all of you a very Merry Christmas and Happy 2015!

Thursday, October 16, 2014

5 years and 5 weeks!

Liam turned 5 at the end of September!! Talk about time flying by -- I struggled so much with what to do for his birthday, but we decided to just do a family outing at his favorite park for dinner.  I'm hoping to do some kind of party for him this month, but still undecisive - mainly just don't want to get any germs around Noah, and it's not the best time of year to avoid them!! 

Liam is such a good big brother....I just can't get over how in love with Noah he is...and I am so thankful for that!  It's funny, he likes to be "in the know" with everything Noah is doing - very big on knowing what kind of diaper he has (wet? is it poopy? big poopy? what color...etc) and he often remembers for me what side I last nursed on, which is very helpful when I am sleep deprived during the day and can't remember.  In fact they recently started snuggle time on the couch in the mornings (don't worry, I don't go too far away from them)  but it is the sweetest. thing. ever.

 Noah is 5 weeks old!  Man, time is flying by - He is doing great, gaining weight like a champ and just a really good baby.  We are so blessed to have him home for the first weeks of his almost felt like we had never had a newborn before!  With Liam being in the NICU for the first 3 weeks of life, the nurses mostly had the overnight duties and a lot of the day to day care, so it's been new for us for sure!  Thankfully Noah is a pretty good sleeper at night, although he does wake about every 3 hours to eat still.  But at least in between he sleeps =)

Noah's 1 month appointment showed his weight up to 9 lbs 8 oz (a gain of 2 lbs since birth!) and everything healthy as can be. He is happy for the most part when he is awake and sleeps well.  He is just started to follow things with his eyes and be awake for longer periods during the day, which is fun.  

All in all, we are doing wonderfully adjusting to having Noah in the family.  It's always busy busy around here, but when was is not? LOL  More to come soon!

Thursday, September 18, 2014

Our newest addition!

Our sweet Noah Henry was born 9.10.14 -- 7 lbs 7 oz -- 18 inches

Lots of blonde hair!  And he looks exactly like Liam when he was born!
Right after delivery

Noah's first family picture

Going home!

Noah is doing great and we came home the next day after birth.  My labor was a little longer than I expected being this my second child I always heard they came a lot faster than the first.  But I am thankful he come on his own in the timeframe we were looking for! I started having contractions shortly after my OB appointment Tuesday morning of last week.  It was a slow going until the next morning, and Noah came pretty quickly and arrived at 9:05 Wednesday morning.  I opted to forego pain meds and epidural, and was successful, however I am not sure I would do that again! LOL  But I am glad everything went smooth and I recovered much faster this time around.  He has been feeding great, gaining weight and being a normal baby.  We did have a slight jaundice issue which prompted some home phototherapy treatment last weekend.  I actually got a little emotional when they delivered the equipment to our house, mainly because I am hormonal!  But it brought back some memories of Liam's birth, and those feelings came unexpectedly.  But all is well, after much prayer and hearing from the Lord about it, I am at peace.  It is so sweet for me to see both my boys together - Such sweet precious miracles they both are!

We have been adjusting to life at home with a newborn and trying to maintain some sort of consistency in our days for Liam sake -- it's been a challenge, but we have wonderful family and friends here who have helped out this past week and we are SO appreciative! 

More to come!  I'm off to feed our lil guy!  Love and hugs to all - thanks for keeping up with us!

Wednesday, September 3, 2014

Progress Reports and Back to School!

Thought I'd better post another update before the baby gets here and you don't see me for awhile again, haha.  I'll be 37 weeks tomorrow and we are counting down the days until delivery!  I've started on some Evening Primrose Oil to help things along, so it could be anytime!

About 36 weeks here!
 Liam had his 6 month cardiology appointment last Tuesday, and it couldn't have gone better!  I think this was the best visit he has EVER had - news and all!  So, Dr. V has been watching him for some isolated high pressures in the 70's in his conduit they have been seeing on the Echo at each previous appointment....I was so very hopeful, this would be the year with NO medical interventions being needed (aka, no heart cath!)...Praying very hard for favor and a break to say the least.  Well, it turns out, Dr. V reported that they didn't even see ANY isolated high pressures on his Echo this time, and pressures were consistent in the 40's!!  You can't even imagine how sweet that news was to our ears!  We serve a mighty God, who hears our prayers!!  So we go back for a routine visit next February.  SOO very thankful!!

Liam also had his first "official" day of Pre-K yesterday...He is growing up so fast!  He still is going 2 days a week at a local church right down the street from us.  His teachers are super sweet and have already sent multiple communication emails, which gets a HUGE A + plus with this momma!  He had a great first day, although he did say he was a little "nervous" and then asked me what that meant, lol.  He is very excited they do not have to take naps this year too, and I am grateful we do not need to lug his nap mat up to school anymore, ha!

Ms. Kim and Ms. Jen at meet the teacher

First day of Pre-K!

Mommy and Liam before class starts

Cute first day picture taken by his teachers - so thoughtful and sweet!!

We are also "trialing" a year of homeschool Kindergarten on our days at home.  I have always gone back and forth with a decision to homeschool, but I feel like there are a lot of great reasons it will work well for Liam and our family, so decided to do a test run this year, since he won't officially be Kindergartner age until next year.  We are mainly focusing on learning to read, handwriting and math.  He loves the idea of me being his "teacher" and having "lessons" at home.  My parents will also be helping some in his teaching, as my mom is a grade school art teacher and my dad is a musician, so it has become a family affair!  I opted not to start with an actual curriculum set, but instead, researched and chose several books to help guide us in our goals for his learning this year:

Devotional: (REALLY loving this devotional for little boys - perfect in length and content!)

 Teach Your Child to Read in 100 Easy Lessons
Engelmann, Siegfried

Character building:
Coriell, Ron

Barden, Christine H.  
Science:   God's Marvelous works; Book One by Teacher's Edition (1975) - I found two editions at our local thrift store and bought them on a whim -- Indeed they are a little old, I love the way it presents science in relation to God's creation, and I am excited about doing some simple experiments and reading out of them, hopefully for a few years!
History and geography will be more play (puzzles, games) and bible story based.   

I am holding onto all my plans for the year loosely and just letting God take control and direct our steps.  I know with the new baby, there will be a lot of changes, so I am at peace knowing things may or may not work out, but I am hopeful homeschool will work out and be a fun process.

That's about all in our world right now - We have a lot on our plate, but are full with God's blessings and provision.  We are excited about this new stage as parents and a family and can't wait to see all God has for us in this season!  Thanks for journeying along with us, we are so grateful for all the loving support and prayers you all provide us!