As a parent, I learn new things every day. I mean EVERY day. Things I learned this time: 1. My 5 year old can "Spiderman" climb up 5 feet to reach things on top of a bookcase. 2. My five year old can open "child-proof" pill bottles. 3. Mommy can have a heart attack real quick when finding empty bottles.
So... we're at the hospital getting things checked out! Don't worry, he's fine, just upset that he had to have his blood drawn! #Hulk no like needles!
Every new day with this kid just makes me stronger! #heartmama#keegansheart#halfheartwonder#chd#chdwarrior#hlhs#littlewarrior#zipperclub#chicksdigscars#rockyourscar
This sweet girl is EIGHT months old and so very busy! I can't seem to get a photo of her holding still anymore! She has developed so much in the last month, some of her mannerisms and reactions seem very "toddleresque" and I don't know how to handle it. She's waving all the time and giving high-fives. She even said "hi" (while waving) to her GI doctor this week. We were all stunned! She brings so much joy to all those around her. I hope she knows how much she is loved! #shirleyanne#shirleysgrandadventure#truncusarteriosus#8monthsold#eightmonthsold
Guess who’s back!?
Baby girl finally free of tubes! It has been a long road here and to think this girl is two months old and has endured so much this past week. Heart surgery, life support, breathing tube, SVT runs, & so much swelling. She accomplished over every hurdle that came her way. Wasn’t easy and the girl still has a lot to accomplish to be back to “normal” but I know God is in her corner and she will continue to show the world the grace of god and the power he holds! #rockyourscar#girlpower#warriorprincess#chd#tetbaby#picubaby#nicubaby
Shirley is SEVEN months old (+ a few days)! She weighs 14lbs 10oz and measures about 24 inches long. She's now able to sit up on her own for short periods of time! Her two lower front teeth are just barely starting to poke through and she's chewing on EVERYTHING! Lucky for us, she doesn't seem to be bothered by teething, so far. She's so curious... always reaching for whatever I'm holding and carefully observing the world around her. One of her favorite things to do is lean against the backrest of our sofa and peer out the front window at the trees, birds, and passersby. Every time something moves she'll chatter or squeal, and then look over at me to make sure I saw it too! She continues to be one of the happiest babies around and I just LOVE being her mom.
How amazing is this y'all?! Michael Montgomery from the Green Bay Packers is here today @mendedlittleheartsnational encouraging those who have congenital heart defects (like my 5 year old daughter does.) There is hope after open heart surgery!! I sent my husband a picture of the autograph for Teagan and see his response in picture 3 😂 Thank you @iam96gb for being a Godly man, full of encouragement, and raising awareness for congenital heart disease 💜
❤️❤️❤️❤️ Vsd patch is still sealed- yay!
ASD still closed with no leaks- yay!
Aortic Stenosis- Sub-aortic membrane (causing restriction) no growth. Obstruction has slightly worsened. Pressure is higher than last time but still within functional limits. No need for medication or intervention at this time. He said no real worry just monitor for any heart symptoms and come back sooner if needed.
Warned me that apnea can cause cardiac issues (pulmonary hypertension) although there is no concern for that at this time.
So it's not exactly what I would have wanted (ya know- a fully repaired, healthy, strong functional heart that no longer requires cardiology visits lol) it is welcome news. Wyatt seems to love his cardiologist. He waved, shook hands and was full of smiles the entire 2 hours we were in the office. He didn't even give the tech a hard time when she did his echo 🙌🏻 #nailedit#myhearthero#CHDwarrior#anotheroneinthebooks#mendedheart#rockyourscar#chicksdigscars
I'm not crying, you're crying. Juniper had her first day of school today. Today she lived in honor of a little girl who will never have a first day of school but who gave our girl hers. Today she lived for two. Today she reminded all of her doctors, nurses, therapists, friends at Berlin Heart and @donatelifeco, that what they do for a living, matters. The milestones will keep coming and they will keep reminding us to stop and think about a life that almost never was, a life that ended too soon and the selfless parents behind it all. Thank you donor family for giving our family another first with our girl. #becauseofanorgandonor#organdonation
First week of school is behind us. And I can't believe how well my little boy with half a heart did!
If you are a new follower then let me introduce you to my "why Doterra." I wrote this last week on my personal account:
This little boy right here is turning 5 AND starting kindergarten! If you look up HLHS, survival rates by the age of 5 are wretched. In fact, I sobbed until I couldn't breath when I read the statistic just a few short days after he survived his first open heart surgery. We barely had time to catch our breath and feel relief that he survived. We hadn't even considered yet, what rest of his life would look like.... and the reality was earth shattering. His first year was sad, slow, with only little morsels of hope. But then one day he started to fight, we started to see the fire burning in him. We started to see his joy. And he took off- in his own time, in his own way, and with definite style, he has fought to be here.
I didn't think he'd be here today. I really didn't. But now I look at him and think "how could this kid not survive?" This little boy knit together in my womb by a God who loves and knows him more intimately than I ever will. How precious the heartache has become to me! How thankful I am for every day of it! How good is our God!
Bennet's cardiologist, the man who walked into a frantic, panicked NICU when Bennet was 1 day old and calmly diagnosed my son while I cried on the floor, called me recently to say this "well christie, we have certainly come a long way from that moment at the hospital 5 years ago. Congratulations mama, let him fly"
And that's what I pray I will do. Let him fly. I just might need to be reminded every now and then #saundertopia#bennyray#hlhs#heartwarrior#chd#chdwarrior#rockyourscar#chdawareness