Working on our bolus feeds today and then bottle/breast feeds and slowly weaning off of humidified air. Tj and I are taking CPR class today and learning how to administer medicine and feeding tube once we get home. We’ve been talking about discharge more and more each day 🤞🏼💗 and it looks like she’s happy about it! #chd#littlevictors#mendedheart#uofm#goblue#heartmonth#rockyourscar
Happy Valentine's Day from little miss Shirley! We wanted to take time today to participate in the #paperheartproject since it's the last day of CHD Awareness week. CHD is not something that can ever really be "fixed." It's a lifelong condition that our sweet girl will have to battle. She will need more tests, more medications, and more surgeries. Even after her final surgery (who knows when that will be), her heart will still need close monitoring. We pray that with more medical research, discoveries, and advancements, they will be able to make caring for children like our Shirley safer and more effective. #shirleysgrandadventure#shirleyanne#chdawarenessweek
Happy Valentines Day y'all! 😍 & Congenital Heart Defect/Disease Awareness Week! & Tube baby Awareness Week ❤💗❤💖❤💞 Last Year Today we spent it in the PCICU... today we get to spend it together at home <3 We love you Noah James! We are so proud of you and all the progress you have made.
Update: Noah had his swallow Study and ENT check up. His vocal folds are healed. He now just has some delayed swallowing. He passed every liquid thickness, but thin liquid in his swallow study, which is huuuuge progress. He can now eat just about everything, but drink thin liquids. We are working up to that. He will be going to the feeding clinic soon to work towards graduating the G-tube. Thank you all for your support and prayers.
We Thank God everyday for Noah and the blessings and miracles we witness. He is our little Heart Warrior.
Shout out to hubby for being an amazing CHD baby Daddy! Ben
Thank you for the Flowers & Card baby. Your words mean so much to me <3 #chdaware#zipperclub#cchd#hearthero#chdaware#1in110#1in100#heartwarrior#truncusarteriosus#conqueringCHD one heart beat at time ;) #tubebaby#rockyourscar in rocking chair. Lol #mickeymouse#chdbaby#littlehearts#chdwarrior#pcha
Day 7 of our CHD awareness story. (Thankful)
Rather than detailing more about Jace's journey and recovery, today we'd simply like to acknowledge all of those who have been there through the fight. We are humbled and eternally grateful for the many nurse's, surgeon's, Dr's, and social worker's at Children's medical center. It is their tireless dedication and desire to care for children that make Jace's story possible. In our time in and out of the hospital we have seen tragedy, pain, and sadness but we have also witnessed love, compassion, and miracles on a level that is hard to express with words. Heart babies and their familys endure an amount of physical and emotional trauma that one has to live in order to truly understand. Despite the heartache and the constant unknown there is something beautiful about the experience. It has reminded us that life is precious, family is everything, and to never take the little things for granted. We hope that this is just the beginning of our sons story. We pray that the journey will get easier and that it is a lifetime of memories and happiness. For Jace the fight is not over but we are fortunate and blessed to carry on today. He may only have half a heart but it fills ours with joy. #chdaware#warrior#rockyourscar#hlhs
We all have scars that tell a story and I think I’m ready to share one of mine, one that has changed my life forever: When I was 14 years old I was diagnosed with a heart block and I was implanted with a pacemaker. For those that don’t know what that is, it's a device that sends electricity to the valves of my heart when my heart wants to stop beating. It’s a scary thought to hear you have to have heart surgery at such a young age or at any age really. My first thought was - Why me? Why would I have to have this in my chest for the rest of my life? The batteries in a Pacemaker do not last forever, they have to be changed every 8-9 years...But as I got older I became more and more grateful that there was a solution for my condition and it showed me that god gave me a second chance and that I still have a purpose in life! I try not to show the scar on the side of my chest because it sometimes makes me uncomfortable when people ask or look at it...but all that is going to change and I want to embrace the scar that makes me just a little bit different! I know we are all so quick to judge and be mean to others but be kind, you never know what kind of cross someone is carrying. #RockYourScar#EmbraceIt#ItTellsAStory#bionicwoman#strong#imafighter
These are the doctors who have worked on @bdubs_99 here in Memphis at @lebonheurchildrens. Words cannot express our gratitude. For CHD awareness week, I want to celebrate that we have world class medical care right in my city.
Selfies aren't really my thing but you are supposed to #rockyourscar on day 2 of CHD awareness. My scar has always just been a part of me. I have it and a couple dozen others across my body. Most recently Andy noticed the ones on my feet from I am not sure what.... Mom?