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Friday, March 3, 2017

Let's say NO to shame today

So I was walking and bouncing Adeline around for the 127th time today to get her to take a nap and I start to feel the weight of it....my dirty, disorganized house.  I'm having some of my closest girl friends over to dinner tonight, so naturally I am trying to clean up a bit.  But life starts getting in the way....I am getting frustrated at my youngest son for dropping his plate of lunch ALL. over. the. floor....my little girl who just WILL NOT nap today....and my oldest who bless his heart, has been asking a TON of questions about his schoolwork today.  It adds up to one defeated momma, even before I can have my first cup of coffee.

I struggled between wanting to just be a mean mommy all day, crying my eyeballs out and taking a nap (the nap almost won!).  But then I started shifting my perspective as I started to pray.  I thought about how manipulating our enemy can be, how he knows exactly the buttons to push, so we hide in the dark and feel the lies being fed to us.  My anger soon turned to laughter as I realized the way we can be strong in the Lord is to expose our weakness for His glory and put our hidden struggles in the light.  I have let shame run my emotions for too long and today, I'm hoping to gain a little peace and relief.  And not in an ordinary way, but I'm going to share some of my mess.  And realize IT.IS. WELL. WITH. MY. SOUL.  My mess is not WHO I AM, but rather a hopefully temporary (hopefully!) state of my environment.  The lie comes when we believe whatever it is we feel shame about, is who we are, what defines us.  The truth is we can be thankful for our weakness, because it's an oppurtunity to share His light and His glory with others.

SO here it is folks (warning some messy, unpretty, NOT Pinterest worthy shots are below)
All these bags hanging out in the corner of my bedroom = BLESSED - it's all the clothes that have been given to us for Adeline (and clean laundry in the basket!)  THANKFUL!


And un-made, messy bed, means I actually got SLEEP last night with a 3 month old.  PRAISE to God!
 
This is some unpacked odds and ends still waiting for a home in our new home we were blessed with last year = GRATEFUL for the BLESSING this home is to me and my family!

This is our office....WHEW!  This disaster is also a blessing because it means I have work to do.  And BLESSED with a job I can do from home and be with my littles.  GLORY to God!

Underneath all that clutter is the kitchen of my dreams being built.  And the mess on top is mostly from the little who are my biggest gift ever.  THANK YOU Heavenly Father!

This unorganized mess is again, my kiddos, who I am so thankful they are curious little people who love exploring!  And they are so creative using the gifts God gives them.  And yes, LOVE Veggie Tales on T.V., which makes momma happy and keeps me sane!

My little work station in our living room - Even in my busy season of life, I am thankful that I can be in the midst of such beautiful people, my family, everyday.  I will continue to be grateful for all this seeming imperfection. 

I will praise the Lord at all times; His praise will always be on my lips. 
I will boast in the Lord; the humble will hear and be glad.
Proclaim Yahweh’s greatness with me; let us exalt His name together.
I sought the Lord, and He answered me and delivered me from all my fears. 
Those who look to Him are[c] radiant with joy; their faces will never be ashamed. 
This poor man cried, and the Lord heard him and saved him from all his troubles. 
The Angel of the Lord encamps around those who fear Him, and rescues them.

Taste and see that the Lord is good. How happy is the man who takes refuge in Him! 
You who are His holy ones, fear Yahweh, for those who fear Him lack nothing.Young lion lack food and go hungry, but those who seek the Lord will not lack any good thing.
(Psalm 34:1-10)


Friday, February 17, 2017

Cardiology and Cookie Crumble



Dr V performing the Echo

Liam had his bi-annual cardiology checkup yesterday afternoon.  This was the first time EVER I have not gone to his cardiology appointment…sigh…but with a nursling and a toddler afoot, it only made sense to keep them at home with me and have dad take him.  Because sometimes the appointments take an hour and sometimes 3!  Thankfully yesterdays was in, out and uneventful!  Dr. V actually performed his Echo which is kinda cool, and reports that Liam’s heart has remained unchanged from his previous reports, which is GREAT news.  We have time on our side for sure, and a good, good God who hears and answers our prayers.   So, we get another 6 months in the all clear zone!

It’s been a challenging week for me…I think the week before his appointments always heighten my stress levels, and add in a nursing 2 month old and 2 year old and we have a whole other animal in itself (as I’ve been dealing with strikes, near-mastitis, and other lovely things this week also!).  It’s also a busy time in my work life with a lot on the table at the beginning of the year.  Phew!  Sometime I just need a break, and sometimes I’m thankful that I have a baby to make me stop and take a deep breath!  

With all of that and it being Friday, I was in for a little treat.  I started making this quick cookie crumble a few weeks ago after going dairy-free for, yep…. you guessed it, the nursling.  I needed something sweet so I could feel somewhat human after giving up all my favorite dairy-laden treats.  This has been my number one go-to treat, so easy and so yummy.  It is almost too easy to make, and if you’re not careful, you could easily get addicted and start hiding it from your kids, haha.  So here is a la recipe:


http://www.johnsonheartbeat.com/2017/02/cardiology-and-cookie-crumble.html

Quick Cookie Crumble 

1 ½  Tbsps. Butter or Non-dairy butter (I use Earth Balance)
3 tbsps. flour
1 tbsp. brown sugar
1 tbsp. quick-cooking oats
¼ tsp vanilla extract
1-2 tbsp of chocolate chips (or a handful, you know, depending on what kind of week you’ve had, I use Enjoy Life brand)
Additional healthy add-ins if you feel too guilty eating it plain as above: fresh fruit and/or nuts of choice

In a small bowl, measure out flour, brown sugar and butter.  With a fork, cut the butter into the flour and sugar until it becomes a small crumbly mixture.  Next add in the vanilla extract and oats and cut in to the mixture with your fork.  Last, add in the chocolate chips and mix.  Eat your sweet little treat (in the pantry, away from your kids, trust me on this!) and make everything right again.

Happy Friday!

Tuesday, February 14, 2017

CHD Awareness Week - Action!

Let's talk about simple things we can all do to help - ACTION! 

  • Financially contribute to the Children's Heart Foundation or help volunteer or organize a fundraiser for your  local CHD support group.
  • Donate blood - most children with a severe heart defect that require surgery, will at some point need blood.  Liam required donor blood for 2 of his heart surgeries.  It's simple and facts show one donation can save the lives of up to three people.  You can get more facts about blood donation and it's importance on the American Red Cross page
  • Become an organ donor - a simple check on your driver's license.  Many children with severe heart defects will require a heart transplant.  One organ donor can save up to 8 lives.  Find out more information about organ donation here
  • Participate in a heart walk sponsored by a CHD group.
  • Share CHD information and heart blogs on Facebook and Twitter
  • Tell your friends and family members who are pregnant about pulse oximetry screening and give them the "5 Questions Flyer" for their 20 week ultrasound.
  • Watch "Something the Lord Made" - a documentary about the man who invented the "BT Shunt" {that Liam had} and pioneered surgical techniques for children with heart defects, specifically Tetralogy of Fallot.  It is a fantastic movie, with the plus of being about CHD's and showing how research is vital to our children's survival.
  • Pray for families affected by CHD's - this may sound simple, but the prayer is powerful.  We have a lifetime of care that will be needed for our children, and prayers do work!
Take ACTION! You can make the difference in the lives of children affected by Congenital Heart Defects!

Monday, February 13, 2017

CHD Awareness Week - Medically Organized

 

Medications, procedures, feedings, appointments...information overload, especially for a new mom.  Organization made it so much easier to track all of Liam’s care, plus have everything handy and in one place should we need to quickly get to our closest ER.  In fact, my parents have actually used this notebook at the ER when Dustin and I were out of town.  It’s presence in our life is irreplaceable.  We even made a copy of this notebook for the daycare, when Liam was attending, and it made everyone feel at ease, mostly me.

The BIG binder with EVERYTHING!
The portable emergency binder
I thought I would share what we keep in our portable emergency binder.  Granted, I have a much BIGGER organization binder with EVERYTHING we’ve ever received medically for Liam, but this portable emergency notebook includes everything that would be needed should we not be the ones providing his care.  We used a flexible red notebook with sheet protectors to contain all the info.  And at the end, if you want some extra resources, I've provided free downloads of all the forms I've used (most are re-done in a better format, the ones I currently have in the binder need some updating!). 

First page:  Emergency Medical Summary Sheet


I decided to create this first sheet as a snapshot of all the pertinent information the other sheets have, but only what would be critical to know as quickly as possible in an emergency situation.  Our cardiologist told us, if we ever went to the ER, he requests that he be notified immediately, no matter what.  So you can see above at the top, I clearly have that stated.

Second Page:  Consent to Treatment of my Child

This is important if others are caring for your child (or when you will be out of town, etc.).  This is a release you sign to allow those “others” to sign off on medical treatment for your child while you are unavailable.


Third Page: Emergency Information Sheet

This is a continuation or more detailed version of the first page, and includes places to list things like blood type, allergies (although these probably should be added to the summary sheet also), name of preferred hospital, religion, Emergency contacts, etc. 

Fourth Page: Insurance Information


While a copy of your insurance card would be completely acceptable here (and I recommend you insert a copy of it on the backside of this form - see below pic), it’s good to write out all the information, including the policy holder’s information since the cards usually don’t include that.  Also, if you have secondary insurance or Medicaid, you can group everything together on one page for easy reference.

Fifth Page:  Medical History (optional)


During one of my attempts to get Liam approved for therapy, the therapy group required that I submit a  report on his entire medical history (surgeries, procedures, swallow studies, hospitilizations, etc.).  Talk about overwhelming!  Thankfully, he was still less than a year old, so things were still somewhat fresh in my mind (and my calendar!), so I buckled down and about 4-5 hours later emerged with this lovely Excel spreadsheet (right side of notebook pic) with EVERYTHING (I even include doctor’s appointments) that he has been through medically.  While I can’t say this is completely necessary, it is nice having a complete history in case it’s needed down the line – as it was once for therapy approval.  Once the back-tracking was done, all I do now is update it every time he visits a doctor.  (Although, I need to update this, I'm a little behind as you can see!)

Next Tab – General Information


Child and Family Information – Includes parent and sibling information, addresses and emergency numbers.


Health Care Providers – Includes a detailed list of all your child’s doctors, specialists, therapists, preferred hospital and other health care providers (can also include here medical supply companies, home health, etc.)


Copies of all current medication bottles – prescription and non-prescription that your child is currently taking.  I started this when I was frequently asked the potency levels of his nebulized treatments, and at the time I didn’t know, I just knew the name of the medication and what dosage we gave.  I also include a copies of any supplement, vitamin and OTC drugs (which you can usually find print outs online, especially for supplements) I am currently giving. 

Next Tab – Heart Notes


The next tab I file all of the letters we receive from our cardiologist after each check-up.  I also have a copy of his Contegra Conduit medical device implant card filed with these.  



Last Tab – Other Information



This is where I file the Care Guides for Liam’s Mic-Key button and his helmet when he had it.  I also filed a sample feeding schedule here when he was tube fed, and would probably recommend for infants or children with varied/different feeding procedures.

That pretty much sums it all up!  I recommend creating separate binders with this information for any person who cares for your child on a regular basis (daycare, grandparents).    I added links below for printables and downloads of all the medical sheets I described above.  I have both a PDF fillable file (unfortunately you can’t save it filled in unless you have Adobe Pro) and printable Word documents.  I also included an excel file for the feeding schedule. The only one not included is the excel file for a medical history.  If you'd like this one, please email me and I can send you the format and I'll say some extra prayers for patience for you while you create it =).

Medical Notebook Sheets - MS Word Files - Download Here
Choose this link if you would like to take the basic sheets to print and fill out by hand or to edit them to save as a Word document.  The formatting may appear different initially in Google Docs viewer, but if you click (upper right) to download the file, it returns to normal when you re-open it in Word.

Medical Notebook Sheets - PDF Files - Download Here
Choose this option if you want a fillable form to fill out and print from your computer.  You will need to download the file in order for the "fillable" feature to come up.  You won't be able to save typed data unless you have Adobe Pro.  

For another resource, I adapted numerous forms for my binder from this site: Medical Home Care Notebook

This is a great site and very in-depth for other medical information and condition-specific forms.

If you have any problems with the downloads or files, please contact me and I can send the originals to you.

Sunday, February 12, 2017

Valentine Fruit Snack DIY and Free Printable


I'm sneaking this post in to share a simple Valentine idea and printables for those school parties coming up Tuesday.  Im not a huge fan of store bought valentines, really because I can never find the kids favorite characters because I tend to shop for them very last minute and I'm cheap! Haha. Anyways, Liam is very much into anything Mario these days so I designed his with Mario characters and Noah loves trains so i did Chuggington for him.  Cut em out, fold over the fruit snack, tape or staple close and boom, done!



So simple!  You could easily design this project yourself and use whatever characters your kids are into and use whatever snack or treat you desire. Mine are shared down below, just click and print...Enjoy an easy Valentine's Day!

Mario Valentine PDF

Chuggington Velentine PDF

Click on the Image to download the free PDF

https://drive.google.com/file/d/0Bz2ijOxyW8lIZVBNUmhTY2JrQkU/view?usp=sharing



https://drive.google.com/file/d/0Bz2ijOxyW8lISTM2UldIaF9tdFk/view?usp=sharing

Saturday, February 11, 2017

CHD Awareness Week - Resources

Thanks for taking the time to read our CHD story the past few days.  I'll be closing this week with some specific CHD information, support and resources that have helped us tremendously along our journey. 

When Liam was first diagnosed, we had no road map to navigate our way through medical terminology, prognosis, support or care for our child.  Because we had never heard of a CHD, didn't know just how common they are, we didn't know where to get to get the support we needed.  We also were not in a state of mind to process a lot at that point either, given that we did not find out about Liam's condition until after birth.  Granted we did have excellent medical care for him and a local support group that consistently pursued us to come to meetings (Thanks ALH!!), beyond that it was up to us.

Resources and support are important because if you don't know what you are dealing with, you don't know what questions to ask.  Educating myself on Liam's condition was extremely important in handling his care.  And knowing the right questions is also very important.  Parents are the best advocates for their children and we must have appropriate resources to make the day to day decisions.

Below I listed some resources I have found very helpful in my quest to educate myself on Liam's condition and caring for his special needs with feeding.  This is not an exhaustive list by any means, and I did include here some support information, as well as information you can provide to others in useful ways.

Heart Research

National Heart Lung and Blood Institute - Research for specific CHD types, also gives common treatments available and what to expect.

MayoClinic - Researching different types of CHD, with great multimedia presentations for visual learners!

It's My Heart - Publication that discusses CHD's, types of CHD's and also the procedures and surgeries, in layman's terms.  Created by the Children's Heart Foundation.

American Heart Association - Guide for parents of children with CHD's.  This site also has a very nice FAQ section of "What if my child needs..." type of scenarios,  with linked information for common diseases and disorders that are frequently found in children with CHD's.

Congenital Heart Defects.com - Although slightly outdated, this website has a host of links to online resources. 


Please also check out my sidebar, where I have links to some of our favorite CHD related sites, under "Links We Love"


Prgenancy Awareness Resources for Others

5 questions to ask at your 20 week ultrasound appointment - vital information you need to ask about your baby's heart. - Important information that can help detect heart anomalies, and questions to ensure the sonographer has thoroughly checked the heart.

Information about newborn pulse oximetry screening tests - A simple test done at birth that can save your child's life.


Support and Other Resources

Book - Your Critically Ill Child: Life and Death Choices Parents Must Face - This is a great book for all parents of critically or chronically ill children.  This really helped me see how the PICU operates and what the limitations and challenges the doctors and nurses face when dealing with critically ill children.  It is written by an intensivist and he openly and honestly expresses his thoughts on different situations to support parents in making decisions for their families in critical times.  It also empowered me to be a better advocate for Liam when in the hospital setting and provided me the insight and encouragement needed to do so successfully.

A Different Dream for My Child, by Jolene Philo - This is a meditation/devotional book for parents of critically or chronically ill children.  It is a wonderfully insightful, powerful and intimate look at caring for your child, from diagnosis and beyond.  Using scripture to reference the various "stages" (such as diagnosis, hospital life, home life, long-term care, etc.), this book reads very much like a devotional.  Very handy to have a copy on hand for anyone you meet who has a newly diagnosed child....I truly believe it would be a blessing to have a copy from the beginning, but more than worth it to read wherever you are in your journey.

Blogs and BabyCenter Groups - These have been vital for information that is specific to each child individually, but also can help you to look to the future of your child's issue and help find resources specifically with what your child is going through.  A good resource for finding out what to expect during hospital stays, procedures and surgeries.  The list of blogs I follow is on my sidebar.  These amazing families have helped me in all sorts of ways.  Please take some times to visit their pages!
A thorough list of resources can be found here, at this amazing heart mom's blog page.

Friday, February 10, 2017

CHD Awareness Week - A Lesson from The Great Physician

I’ve learned my coping mechanism and I’m learning how to believe the Great Physician.

I need to remind myself of the fresh perspective God offers us…what “truths” am I claiming in my life, especially in regards to Liam and his journey with his CHD?  As I have been pondering all the things I’ve learned while riding this CHD journey, this was a big lesson for me…probably maybe even the biggest lesson of them all.  Looking back, I have struggled with choosing other’s words as truth instead of choosing what God says about situations.  And I have recently come to the conclusion that this was (is) a coping mechanism for me, in a sense.   It especially magnified when Liam was born and continued throughout the first couple years of his life.

I’m a very practical, realistic person at heart.  I try to live positively, but I also try to be honest with myself.  No sugarcoating for me, just give me the real, hard facts.  Maybe it’s because I’ve been hurt in the past…or maybe it’s because I’ve been disappointed too many times in expecting the best that I rarely consider the best is going to come.  I realized through lies of the enemy that the lower my expectations, the less hurt I feel when things don’t work out.  Either way, when our journey began, this so-called- “being realistic persona” began to manifest itself in me in ways I didn’t expect and allowed fears to grow inside me that didn’t need to be there.  Needless to say, this area needed some major weeding out…and a renewing of my mind to set me straight.

Most often times, it began with a diagnosis, or even a prognosis for different things negatively impacting Liam’s health.   I remember very clearly during Liam’s repair surgery in June 2010, after the second attempt at extubating him had failed and they had to re-intubate him, my mind immediately went to the worst case scenario.  I had convinced myself in a matter of minutes that he would not recover from this.  In order to protect myself from disappointment and hurt, I began to accept what had not even come to pass yet, as truth…as our new reality.  I also began to let other’s experiences define our future, even allowing them to make decisions for us at times, all because I had a fear for getting hurt.   My husband would even get frustrated because I would speak these things over our family as truths (of course I saw it as “being realistic” and “preparing myself for what lies ahead”).  But claiming all of these so-called “truths” was doing a number on me and my family.  Numerous arguments and worry began taking over.  I struggled with even accepting the victories we were receiving along the way, because I was so focused on what I thought lie ahead for us.  Although I didn’t realize it at the time, that was a turning point for me, spiritually.  And though it is still an area of constant struggle, the Lord slowly began a work in me…

I don’t think God uses the words “Let’s be realistic here…”  I believe He commands us to fully trust, fully love and fully believe in HIM and His plan for us, and as the Great Physician himself, to truly believe in healing, restoration and completeness and that yes, He can do that.   Even if He chooses not to work in ways we were expecting, we can always trust that “He works for the good of those who love him”.  Through continually seeking Him in prayer and with thanksgiving, we can choose to let God give us the peace we need to live fully now, and truly believe He will protect us and hold us, even if the world’s prognosis turns out to be our reality. 

I want to tread lightly and not sound as if I am in any way saying to not trust doctors, medical profession, surgeons, etc. – for we all know in our heart worlds, they have truly been angels sent by God to help save our little ones.  But when it comes to the prognosis, the answers to the questions like, will my child live a normal and full life, what is the chance he will need this treatment or that therapy, what can we expect our future to be like…Why do we keep believing the future given to us by others…or even ourselves?  Why do we continue to think about our future plans, hopes and dreams in regards to what someone else says who does not know what will happen?  While we still can value and take encouragement or preparation from the guidance given to us through our medical advisors and other heart families, only God knows the true outcome of all of it.   It has been tremendously hard for me to lay the words of men down at the cross, and take up my own cross of His truths for our life.  The enemy always keeps worldly truths and possible realities in close distance, looming over our head and seizing opportunities to distract us with them.   I really don’t want to believe a lot of what the “statistics” say anyways…why would I (only because of fear)?  I had to learn how to be an educated advocate and serve Liam’s needs, but also believe in God’s plan for his purpose and ultimately his life.

“For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11

So while I am not saying that we should be unprepared in our journey, I am saying there is a difference in preparedness that stems from fear of what may come and preparedness for what HE has spoken to us. One includes fear, the other HOPE.

So I encourage you to take God at His word, beyond the statistics and prognosis to the eternal perspective of God’s plan.  Let God have control of your family’s future, and know he holds it safe and secure, no matter what lies ahead.  God is the only one who KNOWS...

For you created my inmost being;
   you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
   your works are wonderful,
   I know that full well.
My frame was not hidden from you
   when I was made in the secret place,
   when I was woven together in the depths of the earth.
 Your eyes saw my unformed body;
   all the days ordained for me were written in your book
   before one of them came to be.”  Psalm 139:13-16

In our journey with CHD’s, it is easy to get caught up in fear – it’s ALL AROUND US.  Grim statistics, seeing our children being tortured by this disease, experiencing loss…But God does have a plan and it is GOOD.  Seeing our journey through His eyes is a daily submission of faith and trust, and it’s far from easy.  But when we choose to believe what He says, WHO He is and who He created our children to be there is no doubt that His power can move our mountains, calm our raging seas and replace our fear with peace. 

Last but not least, I write this as my personal experience in my faith and to quote Paul “I came to you in weakness with great fear and trembling. My message and my preaching were not with wise and persuasive words, but with a demonstration of the Spirit’s power, so that your faith might not rest on human wisdom, but on God’s power.”  1 Corinthians 4:3-5

Thursday, February 9, 2017

CHD Awareness Week - Our Story - Part 3

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 issues...it 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.  Liam has had a few more heart cath procedures since his last surgery to double check the flow rates and obstruction in his conduit, but prayerfully we have not had to have one the past several years!  He will require one more surgery at least, and we are just waiting until the peak time to have that one performed - ideally in a few more years, so that the new conduit can be big enough to last into adulthood.

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 7 year old!  Praise God! 

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 - 7 years old

Wednesday, February 8, 2017

CHD Awareness Week - Our Story - Part 2

Ok, Part 2...the broken heart.

Surgery was imminent, as they explained to us before Liam 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 surgery...so 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!

Tuesday, February 7, 2017

CHD Awareness Week - Our Story - Part 1

Our heart story - 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