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Three months old!

These two goofballs always know how to cheer me up! Fighting the good fight! #BAVD

A. Normal aortic media. B. BAV aortic media associated with degraded elastic lamellae and increased risk of aneurysm and dissection. The mechanism of this isn't well understood but the aortic valve and aorta form from the same group of embryonic cells. #heart #health #cardiology #aorticstenosis #aorticregurgitation #bavd #bav #congenitalheartdefects #zipperclub

Ava and her cardiologist, Dr. Sharma. We've been blessed. He's confident -which is a plus when he's caring for your baby's heart- but always makes sure our questions are answered and is willing to spend as long as it takes with us. Ava took to him so well today, which surprised me because she's been super clingy lately. Yeah, I'm the mom that has my cell camera out in the doctor's office.🙈🙊
#avadarlin #babyava #littlesweetheart #BAVD #bicuspidaorticvalve #CHD #childrenshospital #knoxville #tn #iphone6 #vsco #vscocam

Малиновото ни вино е в добри ръце.🍷Благодарим сърдечно на @dobro.hrumvane.vet.clinics 💕, BAVD - Bulgarian Association of Veterinary Dermatology и д-р Себастиан Вио за срещата по време на Iви Конгрес по Ветеринарна Дерматология.

MOST RECENT

Three months old!

Between meds and supplements these doctors are killing me. I have a dr appointment every day this week. Went to dr today they have been treating my pericardial rub for a month now and it hasn't gotten any better. My blood pressure was thru the roof so they tripled my beta blockers from 50 to 150mg per day. I feel drained I'm supposed to leave on vacation soon and now I am wondering if it's such a good idea.

As a mama of kids with CHDs I see their illnesses and injuries in such a different way than before Will was diagnosed. While managing my stress regarding their hearts is hard, overall my stress for day to day bumps and bruises is low and since Will's OHS my tolerance for blood and medical procedures in general is much higher. I also know just how strong and resilient these little people are which gives me hope even when it feels scary. • On Saturday Will had a tumble from a stool and hit his mouth on the corner of a table. After calming him and sopping up the blood I immediately thought of endocarditis, inflammation of the inner layer of the heart which can happen if bacteria is introduced through the blood steam. An easy way for this to happen is during dental work/disruption to the gums. • After the accident happened we emailed our wonderful pediatrician who got back to us right away, yes on a Saturday, and said that the banged up gums would warrant taking an antibiotic. Luckily we already had a prescription for the preventive antibiotic and I was able to give it to him that day. Yesterday he got in to the dentist who thankfully doesn't think any damage was done to his teeth. He just has some seriously banged up gums. 😫

Good news today. I was worried I would never be able to get more ink💉my doctor told me I can get all the tattoos I want after my valve settles in which takes about 90 days. Gonna go see @andrewozimek and the good people over @scotthilltattoo for my CHD awareness tattoo, I suggest you do the same. 💪🏻👊🏻

Yet it receives half the funding. October 1st is the awareness walk in NJ please join us, volunteer, donate. Link to the @chd_coalition in my bio check out all the hard work and love these volunteers give. One day you might be a heart mom/dad warrior/angel

Phase 2 of my cardiac rehab it's about time I can't sit around on my ass any longer time to get in the gym and see what this new heart can do 👊🏻

Lucia will be eight weeks old tomorrow! I had so much fun taking these pictures a few days ago. I got a sneak peek at the professional ones done when she was 12 days old and was inspired.

Good morning i hope you have a happy day. I'll be here stuck in my house if you need anything 😕

Not only did this rockstar surgeon save my life with minimally invasive heart surgery but he purposely saved my tattoo thank you Dr Anderson @hackensackumc @joseecd @lastritestattoo @paulbooth

8 day average stay I'm out in 3. They said a year of rehab screw that I'll be grounding and pounding in six months 👊🏻👍🏻

Top is my diseased aortic valve , bottom is the new cow valve. Amazing what these doctors can do!

Oxygen is off all my tubes are out another day or two and I'm outta here as long as I keep progressing then we start the rehab

Round one was 6 hours and it hurt me bad, but I made it and I live to fight tomorrow. To all my family and friends I love you.

Weakness compels strength! If your going through hell keep going. Accept the reality and embrace the pain, but keep going. Fight hard thats how you survive, and God willing you'll come out stronger than you were before. This next part is out of my hands but when I wake up Ill be ready for a fight 👊🏻

Our first trip as a family of four was a blast! We spent a few days at the sunny windy beach. The change of pace was welcome after learning about Lucia's CHD.

As a parent to kids with CHDs I love hearing the perspectives of adult CHD survivors. Kelsie @heart.full.of.health has a great Instagram feed and blog. Her recent post is all about traveling with a CHD which I find inspiring and helpful. • #Repost @heart.full.of.health (@get_repost)
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New blog post up this morning! I'm sharing my 10 travel tips for traveling with a Congenital Heart Defect and a pacemaker! Click the link in my bio to read and share!

So it dawned on me while laying awake in the middle of the night, mind racing and trying to understand this new diagnosis, @heartwarriorwill needs to evolve 😩 So here we are: @heartwarriors.will.and.lucia

This heart warrior is one month old! Last week we finally got the images we needed and Lucia was diagnosed with a CHD. While this is not the news I wanted I am grateful to finally have some answers. • The latest echo confirmed that she has a bicuspid aortic valve. It also turns out that she has a Patent Foramen Ovale (PFO). I hadn't heard of PFO, which is similar to a PDA, and essentially means that the normal hole between the atria that is present in all babies before birth didn't close when she was born. It's similar to an ASD but smaller and still has a chance of closing. • On the bright side, her heart function is good and she will just be monitored for now. Her next appointment will be in three months. Additionally, my husband and I will need echos because bicuspid aortic valves are often inherited. While I definitely knew this diagnosis was a possibility, and was more prepared for the news than I was when Will was diagnosed, I'm slowly processing a range of emotions. It seems our CHD journey is just getting started.

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