Monday, February 25, 2013

Miracles at play...

Have you ever seen this many smiles on a heart cath day??  I am loving my little miracle man...

Chilling in the pre-op room, waiting for lab draws
More smiles!

After some much needed nourishment, smiling and laughing watching new Mickey videos - only 4 hours post op!!

Smiley boy most of the day!
Today was THE best hospital experience we have ever. had. period.  It was a great day...despite what we were here for.  I would say this was a miracle day in many, many ways for us, and I am reveling in God's grace and mercy He has shown us today...thou art Faithful!

First, this morning, before anyone even stirred in our apartment, I was sitting by Liam's beside at 5:30 am about to wake him so he could drink some Pediasure before the 6 hour fast that would start at 6 know the anxious momma syndrome when you plan every last detail into the minutes to be sure your child has the best advantage for a procedure....or is that just me?? Anyways, as I was sitting by his side as he slept, I brushed his hair and softly whispered to him to stir him awake....he turned a few times, but really wouldn't wake.  I sat thinking...what if he doesn't drink this??  He will be SOO hungry later...I really at least want him to have SOMETHING of substance today...worry, worry, worry.  I stopped and prayed and felt like the Lord asked me to surrender those worries to Him and asked me back gently, "so....what if?  Can't I handle that?"  I immediately felt a peace about leaving Liam to sleep some more while I gathered up my bible and went to spend that time in His word, rather than worry about the order of the day.  Miracle #1....Liam woke up around 6:45 (praise God, for I got another 45 minutes of sleep after perusing the Book too!) and he never complained about being thirsty...or hungry before the cath.  He only asked for juice once.  Amen.

Also, there was no traffic on this Monday morning, on a complete construction zoned route to hospital...we can call that Miracle #2 (people in Dallas will here me on this one!).

Once we arrived at the hospital, check in was on time (praise!) and when checked in, NO deductible or co-pay was due today, even after we had already called the insurance to verify the deductible we'd be required to pay for this (beginning of the year especially)....could be a fluke, but I am charging this as Miracle #3.  This stuff just doesn't happen.

They gave Liam the "goofy juice" (Versed, for all my medically inclined friends) and we sent him back to the "special nap room" where the doctor "was going to look at his heart while he slept".  No tears, just big hugs, waves and sweet goodbyes!  Couldn't have been any easier....

Procedure went "better than expected" and Liam's heart looked "better than expected from his recent echo findings".  Huge news for us...Miracle #4.  Doctor said no intervention was required, as all his pulmonary arteries only had mild stenosis and not one warranted any intervention at this time.  So the cath ended up just being a diagnostic, instead of an intervention - YAY!  The only really relevant "finding" for now, was that the pulmonary valve is leaking more than what the echo showed - moderate leakage as opposed to minimal.  And this is what is causing the Echo to show increased pressures (our recent notes showed the echo measured the gradient at 58), however doc said today with his measurements, the actual gradient is closer to 25, only upper range of mild stenosis, instead of being the upper range of moderate stenosis....Miracle #5.

Recovery was pretty much smooooooth sailing.  Liam had his tearful moments, of course, but he was able to communicate so much better than a year ago and that helped TREMENDOUSLY.  Plus, they were able to give him some Fentanyl (pain med) and Zofran (anti-nausea) which did the trick for him.  He only got sick once in the PACU and remained calm after that.  We moved to the pedi floor in record time for us, 1 hour (which is the  minimum PACU stay post-op).  Once on the pedi floor, Liam was calm and relaxed, watched his new Mickey movies and ate and drank like a pro without any sickies....I just can't get over how well he has done today post-op, especially with eating and drinking.  Miracle #6.

We had a nice wagon ride before bed, walking daddy down stairs to go home for the night, came back, watched a show, read a book and now Liam is down and out for the night without a tear or whine.  I am sitting here, totally in awe of today.....just remembering our past and how did we get HERE?  God has done this for us, I am for certain.  We did nothing on our own, except put our trust and faith in Him to takeover the day and make it His own, and boy did He ever.  This momma is humbled and thankful tonight....and finally resting easy. Thank you all for your prayers today, and as you can see, certainly Miracles do happen.

Monday, February 18, 2013

Let the count down begin...

Just a quick update....Today is 1 week until Liam's heart cath {if you missed that post from last week, you can read it here} and last night he was up every hour...This morning he was complaining that his ear "felt funny" and I asked him if it hurt and he says, "Ya"....which explains the night time fiasco we had....great.  I took his temp and it was 100.4...fantastic.  Ugh, we already pulled him out of school last week and he is scheduled to be on house arrest this week to keep him healthy until next Monday.   I gave him some Advil and the temp has gone away and when I ask if his ear hurts, now he says no.  Now I am debating taking him in to the doctors office, where he could catch something else, or waiting it out....decisions, decisions - and lots of prayer...

So we are home bound today, except for maybe going to the health store to get some garlic oil drops for his ears...been reading those can help....Maybe to the doctor, or not.  Praying for wisdom....

Tuesday, February 12, 2013

CHD Awareness Week - 3, 2, 1....Action! {FREE Printable}

Now that I've shared the AWARENESS, 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.
  • Advocate to your state legislators about greater funding for CHD's and laws regarding mandatory pulse oximetry screening in your state. {CHOP in Philadelphia has some great resources for advocacy}
  • Share CHD information {especially this week!} 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!

{Printable can be found in my Etsy shop - Free download period has expired}

Monday, February 11, 2013

CHD Awareness Week - Resources {FREE Printable}

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 - 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.
 {Printable can be found in my Etsy shop - Free download period has expired}

Friday, February 8, 2013

CHD Awareness Week - Our Story - Part 1 {FREE Printable}

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

{Printable can be found in my Etsy shop - Free download period has expired}

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. 

Thursday, February 7, 2013

CHD Awareness Week Kick-Off!! {FREE Printable}

I'm excited this's going to be a fun time here on my blog, a little more laid back and casual than in years past, but nonetheless, doing the important work of spreading 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 3 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! 

{Printable can be found in my Etsy shop - Free download period has expired}

Monday, February 4, 2013

Planning and Prepping!! CHD Awareness week is coming soon!

I've got some special things planned for CHD awareness week and I'm designing away over here, so get ready! I'll start my official posts this Thursday, February 7th with the start of awareness week, so you won't want to miss out....stay tuned!

Friday, February 1, 2013

Wearing RED!!

Wearing red today for Liam and CHD awareness!!