#doubleoutletrightventricle

[ihearticie]

Remember- a full anatomy scan at around 18 Weeks is a FULL ANATOMY SCAN. It's not just about finding out the gender of your precious baby.

[ihearticie]

34 Weeks 5 Days Pregnant.

[ihearticie]

37 Weeks Pregnant

[ihearticie]

Day 27 of Heart Month❤This goes out to all the heart warriors and parents of heart warriors. It takes a certain type of person to face what we are battling. Some days are easier than others but we always find the strength to stand up and fight. #heartparents #heartwarrior #heartmonth #doubleoutletrightventricle #dorv #persistentleftsuperiorvenacava #tof #tetralogyoffallot #chd #chdsux #chdawareness #fckchd #firsttimeparents #1in100 #ihearticie #daughter

[ihearticie]

Tuesday, April 6, 2021

Icie had a cardiologist appointment at 8:30 am.

We received special permission to bring Violet along since I have no other options the majority of the time. We checked in online and were called to come inside the building once a room was available. Icie and I wore masks, and were temp checked even before heading back to a room. Once back Icie was weighed (30 lbs 10.3 oz ) and had her height checked (3’2.43) then off to have an echo.

Icie has never had a full echo done since she would never sit still long enough but she did extremely well and was very still even though she was not happy about it.

After the echo someone came in to take her blood pressure (109/54) and also check her o2 sat(100%)

After a very long wait we saw the cardiologist. He said that her heart looks strong and that nothing has really changed since the last visit. He said the one thing he would like to do is a lung perfusion test. He said he just wants to be 100% sure her left lung is getting enough o2 bc if it isn’t it will not fully develop which will cause issues. He said he expects it to be ok but wants to be 100% sure. He gave me a “sometime in 6 months” timeline to do it. It’s an outpatient test. It does involve an iv which will suck. She will then breath something In from a mask while x rays are taken. Pretty straightforward but the whole iv thing really sucks. If her left lung isn’t getting enough oxygen then she would need a cath procedure to ballon the vein. Icie has no restrictions currently but that could always change. We are still on the same track of a stress test when she is 10-15 and then having a valve put in high school- college age. I’m praying the best I can that more valves come out that can be placed via cath with chd kids. I asked her cardiologist about the newest approved harmony valve that can be placed w a cath procedure instead of ohs. He said the issue w those is they work w only some kids since w chd valves are deformed. Those cath procedure valves are created w smooth round veins in mind so if the vain is deformed the valve won’t stay put. All in all it was a good visit. I surprised her with a tablet to play On While there since she did so well. It’s hard for me to write these updates up bc it really does give me anxiety. I have erased so many paragraphs just so I can keep it on point. My emotions the best of me. I wish I could just take her place. It kills me that she is going through this. My precious wormy.

[ihearticie]

Sunday November 22, 2020

Just wanted to update! Icie was supposed to be seen by her cardiologist in June but we are unable to go bc of the Covid restrictions. Only one parent is allowed to go with the patient and no siblings. Since I am more of a single parent with Carl’s job now I’m unable to take Icie until the restriction is lifted. I contacted her care team to see if anything could be done so she could be seen and was told that I could bring her sister, Violet who was 2 months old at the time, but would have to leave her in the jeep with my husband. Something about that response was off putting to me. I responded by saying if we lived closer that may be an option but an hour drive up plus 2.5 hours there since they are pretty slow, and then an hour drive home is a bit to much. She would be due to be seen again in December but I’m assuming it will still be the same. It’s upsetting to me bc I like keeping up on her cardiology appointments but it’s impossible to go unless Violet can come with us. Hopefully things get better so we can get back on track!

[ihearticie]

I’m reflective today. I don’t want to make Icie’s Heartiversery about me and my anxiety. On this day last year Icie was strong. She showed us her willingness to fight and her strength to do so. I’m sure As the years go by she will hold more of the reins over this day than me. But for now it really is just a traumatizing day for me. All day long I have been saying to myself “this time last year” and whatever coincides with the time comes to mind. It was horrible. This time last year my baby’s heart stopped its natural god given beat. I hate that I’m so overwhelmed by today that I can’t see the true beauty in it. I do know with out her surgery she would fail to thrive. Her surgeon was amazing. She healed with really no complications besides a blood clot. It was only 8 days where some babies spend months in recovery. I should be grateful and just shut my mouth, but the anxiety overrides my ability to do so. I’m a very emotional person. I think a lot and love hard. Thinking about my emotions a year ago is all to easy for me. But within my storm of anxiety ridden memories, Icie is there fighting. She was steadily healing and constantly fighting. We were there for her but really her strength is what carried Carl and me through. She didn’t have a choice, if she did I’m sure she would say “uh ya I’m good on all that” but she didn’t. So she fought. She fought against odds and she won. I’ve kissed her and told her I love her even more than I normally do in a day. I’ve also hugged her extra long.

Happy Heartiversery Icie. A year ago today you had to fight with everything in you and you emerged victorious. You are strong. You are thriving. You are beautiful with your zipper scar. You are everything to me, to us. We love you sweet wormy. This day is yours.

[ihearticie]

John Q and You, but Mostly Us.

I saw a movie called John Q while I was in high school. Ever hear about it or watch it? Major spoilers are about to occur here so if you want to check the movie out and not have it ruined for you, you should stop reading now.

It’s about a boy who goes into heart failure from an undiagnosed CHD. Since the time for heart repair is long gone the only way to help the boy is through a heart transplant. Since his condition is congenital it predates the fathers insurance plan which recently changed unbeknownst to him making it a pre existing condition, so a transplant is not covered. Long story short the dad ends up holding a bunch of ppl hostage in a hospital until his son gets a heart transplant. When I first saw the movie in high school my reaction was “damn.” As in that shit was intense. I watched the movie again about 10 years later and my reaction was “such a good movie.” Watching the movie a few weeks ago with Carl while Icie was asleep next to me my reaction was nothing short of how I imagine a physicist criticizes movies.

There is a scene where the heart defect is explained to the parents. Before the CHD life that scene was just a bunch of medical mumbo jumbo with intense feelings. After CHD life I understand every word. Septal defects, myopathy, pulmonary edema, and malignant ventricular ectopy. Meaning many holes in between heart chambers, muscle disease or weakness, condition from fluid in the lungs and extra or abnormal heart rhythm in the lower chambers of the heart. I am becoming an expert in heart anatomy and defect terminology, but who wouldn’t given the circumstances. I was shaking my head at how they had the room set up while the boy was in heart failure knowing damn well that isn’t how it would look. The surgery scene was the most redic to me. I was looking at Carl saying “where is the heart lung bypass machine? They are no pumps in his heart! That boy looks 98.6°F he can’t be warm for surgery he should be looking gray from being 89°F! Why aren’t they tilting him head down after?” ( If you weren’t aware the blood is cooled in the bypass machine during surgery. We are typically 37°C and for heart surgery are cooled to 30-32°C. I was told it fights infection to be cooled.)

It’s hard. We shouldn’t even know these things.

After snooping around googling the movie I found out the director is a heart parent. One of his daughters has a CHD. He also produced the movie My Sisters Keeper which is also a medical heavy movie. With all the issues I had viewing the movie this time around the worst was the main point of the story. Even with medical coverage heart transplants and surgeries are not covered bc it’s pre existing. There are bills that are being introduced as we speak to allow CHD to be a covered expense. It’s still in it’s infancy and hopefully it’s a covered condition by the time Icie is 18.

After receiving copy’s of Icie’s medical claims and totaling up her 8 day hospital stay it came to over $400,000. That is what her insurance was contracted to pay, so who knows how much it would be for a different insurance. Do you know anyone who can shell out that kind of money? Is it fair that money is something we have to consider when it comes to saving our daughters life? Luckily we have medical assistance for her. So very lucky. Some families are not eligible.

I wonder if wayyy back in high school me seeing this movie was a big hint to me, created by my spiritual guide. It’s another one of those things in my life that just lines up neatly. Carl said he also saw the movie and was thinking of it the day of Icie’s surgery.

We try to not make Icie’s life about CHD but it’s hard. It’s hard to ignore especially when we are locked up in the house all winter, or when Carl can’t be around Icie if he thinks he is coming down with something. Thankfully she is little and we can work out the kinks before she starts recognizing what we are doing. When she is older and can say what is wrong with her and is more in tune with her own body things will be much easier. She can regulate herself at that point. All children have to be taught how to cover their mouths when they sneeze or cough, or how to wipe properly after using the bathroom, we just have a bit more to teach. “Slow down if you have shortness of breath. “Let us know if you have any chest, arm or leg pain.”

Together we will master it. For now Carl and I will just critique movies and enjoy life at a slower pace with Icie. She sets the tempo and she will certainly let us know when she is ready to speed things up.