#ihearticie

[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]

Pray to breath easy in under a week.

In less than a week Icie will have her 1st echo in almost a year. To say I am anxious is an understatement. She looks and acts like a normal 16 almost 17 month old. She runs, climbs stairs, eats well and never displays any indications that her heart isn’t working properly. Even so, there is always a possibility of an issue. I try to remain positive that her heart function is great, there is no decline in function, her residual vsd is now closed and there is no need for early intervention but the wounds are still new for me and I’m afraid. I read something that said “negative thoughts are like weeds in a beautiful garden. They can easily over run the beauty if they aren’t dealt with” I’m constantly weeding my way through the thoughts of scary things that could happen with Icie but actually getting a look at her sweet mended little heart and seeing with out doubt how well it is functioning is a different kind of fear. Could there be issues with the asd and vsd patches? If there to much regurgitation and the pulmonary valve needs to be replaced sooner? Is her heart pumping efficiently? How’s that BAV? Those are only some of the things going through my mind. I honestly don’t know what could arise during this echo. This is the first time for me since it’s been so long since her last echo, which at the time was only weeks after her ohs. I really don’t know what issues could be present. It’s not something that can be googled and even if it could every CHD case is different. A guideline would be nice though. It’s one of the reason I started a blog on Icie’s heart journey.

Will she need to be sedated, Maybe. Am I happy about that, No. Will her heart be functioning properly and everything looks great, I pray to God yes.

[ihearticie]

Happy 1st Halloween Icie! 🎃 She didn’t get a costume this year. Next year though we will be on it! We just stayed inside and kept warm tonight. Now we are winding down for bedtime❤️I just love her to pieces!! #firsthalloween #loml #daughter #bedtime #afterbath #happybaby #ihearticie #1in100 #chd #dorv #doubleoutletrightventricle #bicuspidaorticvalve #persistantleftsuperiorvenacava #tof #tetralogyoffallot #sheisawarrior #mywarrior #heartwarrior #heartparents #naturalbeauty

[ihearticie]

Everyone knows how much we adore Icie. I never ever want her to feel self conscious about her scars. The thought has crossed my mind that when she is the age to play with barbies, I would draw a zipper scar on one of them. I want to normalize her scar, and having barbies with a zipper scar would not only normalize it but it would help to start a dialogue about why the scar exists. Then I found @withallmyheartdolls . She hand makes dolls and adds surgery scars at no additional cost. I customized and bought one right away! It’s so great that Icie now has a doll that is made to her likeness, with her diagnosis and her name attached. Thank you so much @withallmyheartdolls. ❤️ Icie now has a beautiful doll with the same beautiful scars as her. She will have this doll forever❤️#dorv #doubleoutletrightventricle #bicuspidaorticvalve #persistantleftsuperiorvenacava #chd #tof #tetralogyoffallot #1in100 #sheisawarrior #mywarrior #loml #naturalbeauty #zipperclub #ihearticie #heartwarrior #heartparents

[ihearticie]

Wormy❤️#loml #naturalbeauty #heartwarrior #heartparents #ihearticie #zipperclub #doubleoutletrightventricle #dorv #tetralogyoffallot #tof #chd #bicuspidaorticvalve #persistantleftsuperiorvenacava #sheisawarrior #mywarrior #daughter #tummytime #1in100 #normalbabystuff

[ihearticie]

Wormy is 6 weeks post op! I remember wishing for this day, to see Icie healed and happy again. Here we are! She is so incredibly strong, too strong for words. Life couldn’t exist now with out her. She is my hero. Here’s to the first of many milestones! I love you Icie❤️ #6weekspostop #ihearticie #doubleoutletrightventricle #dorv #tof #tetralogyoffallot #persistantleftsuperiorvenacava #bicuspidaorticvalve #chd #mywarrior #sheisawarrior #myhero #heartwarrior #heartparents #zipperclub #1in100 #milestone

[ihearticie]

Hanging out in our closet today. She was hugging her shoes and stopped as soon as she saw me trying to get Picts of it. I was finally able to get her to look at the camera to get some Picts of us though! I keep telling her that tomorrow she will be 2 years old and she always says “no” as a response. Sorry worm, But yes! #almost2 #loml #ihearticie #shoelover #timeflys https://www.instagram.com/p/BxLEIraAVym/?utm_source=ig_tumblr_share&igshid=abkj7upcbias

[ihearticie]

Beads of Courage

I found out Children's Hospital has this program called Beads of Courage. There are different types based on illness and Icie is in the cardiac program. Icie will be given beads that spell out her name on a string to begin with. And when she has a procedure done she will receive a different bead indicating what happened. From what I could see it's something like this: black beads for iv, blood draws or pokes, blue beads for clinic visits, orange beads for central lines, glow in the dark beads for echos. There is a bunch of different beads for all kinds of things. It's really a cool thing. It tells the story of Icie's treatment in beads. I was thinking I would do one for her that recognizes what she went through before surgery. I have it wrote down what type of beads she would need. There is more black beads on the list than anything. 😔 Her bead list so far goes like this: 1 Orange -center line 3 glow in the dark -echo 2 white -learn new meds 10 black- pokes blood draw 3 light green. -Tests ekg xray sonogram 4 Clinic visit -blue 7 yellow -impatient nicu stay I just have to find beads I like and build it up. There are some really cute ways to display them also. I've pinned a few things on Pinterest that I really like. I think when Icie is older it will be another cool way for her to show just how strong she is. Having all these beads that she earned, although she really won't understand till she is a bit older.

[ihearticie]

You have over come more at 4 month of age than I have in 32 years. You are the bravest, strongest, smartest, most beautiful baby I know. You have faced an obscene amount of pokes, pricks and prods and still end up smiling. You make me so jealous of that, and I will try very hard to never taint that quality in you. I love being your mommy Icie, I am so proud to say that you are mine. Your heart has been mended, but your journey with CHD will never be over. Life throws us curve balls Icie. I don't need to remind you of that because even while healing we encounter unexpected things. Our prayers have been answered and you are now able to continue down the winding trail of life as daddy's little girl and mommy's world. You are officially a heart warrior. You have the scars as proof.#1in100 #ihearticie #strength #surgery #doubleoutletrightventricle #dorv #tof #tetralogyoffallot #chd #bicuspidaorticvalve #persistantleftsuperiorvenacava #daughter #loml #heartwarrior #heartparents #zipperclub #sheisawarrior #mywarrior #myhero #youaremine

[ihearticie]

1 Day. It's scary her surgery is 24 hours away. It takes us closer to recovery though. She is such a smart strong little girl. She is a little goofy too.😍#surgery #countdown #loml #sheisawarrior #mywarrior #heartwarrior #heartparents #doubleoutletrightventricle #dorv #persistantleftsuperiorvenacava #atrialseptaldefect #bicuspidaorticvalve #chd #tof #tetralogyoffallot #ihearticie #1in100

[ihearticie]

3 Days. My view waking up. The best view in the world.❤️#countdown #sheisawarrior #mywarrior #heartwarrior #heartparents #daughter #ihearticie #dorv #doubleoutletrightventricle #persistantleftsuperiorvenacava #bicuspidaorticvalve #atrialseptaldefect #tof #tetralogyoffallot #chd #1in100 #loml

[ihearticie]

2weeks old and 12 weeks old. She is such a smart, strong, beautiful baby. I love her more than words can say. August 22 keeps getting closer and closer. My sweet little baby. I’m terrified for your surgery but with out it your heart will eventually fail. We will continue to fight along side you, our warrior Icie. You are so undeniably worth everything we have to give. We have forted up in preparation, but now it’s time to begin our march forward. Never assume the tears in our eyes is weakness, it’s an honor to fight alongside you, we are ready. #heartparents #heartwarrior #1in100 #chd #doubleoutletrightventricle #persistantleftsuperiorvenacava #bicuspidaorticvalve #atrialseptaldefect #tof #tetralogyoffallot #dorv #loveofourlives #ihearticie

[ihearticie]

Heart Mom Thoughts

I’ve mastered the silent cry at night. I kiss Icie’s head and say goodnight and it always breaks me down. It’s so unfair. My poor little girl will have to go through so much. I’m just so scared for her. Anticipating what will happen, how she will look right after surgery, how much pain she will be in, is only a few of my worries. I was asked at my 6 week postpartum midwife appointment if I needed to talk to someone bc of the stress I feel surrounding Icie’s heart defect. It was the first time ever that I said I may need help, not so much right now but possibly in the near future. I read somewhere that hospitals are now putting a support system in place for parents of children with heart defects. The article said 1/3 of parents report symptoms of traumatic stress. I believe it. Being a parent is tough as it is. Every parent worries about their child. Some dread the necessary vaccinations that occur frequently the first year. Some worry about the “what ifs” that are probably never going to happen. What us heart parents worry about have a pretty high probability of happening. For us it’s not really “what if” but “when.” We have to sign papers agreeing not to sue in case the “ what ifs” we worry about actually occur. We have to remain calm for our children during procedures that scare the hell out of us. We act brave and then some of us cry at the end of the day in the dark so no one notices. Carl and I talk about everything, but at this time we have talked about everything that scares us so far and there isn’t a response that hasn’t been said. I don’t want to constantly remind him of the impending situation, especially right before bed. It helps to see someone being strong through hard times. It helps us both keep moving forward. So I just cry silently, get it out and move on. As a heart mom I feel the stress even more. I’m not only a mother but a wife. My husband is going through the same shit I am. One parent is allowed to stay overnight while Icie is in critical care at Children’s. I will be that parent, but guilt comes with that. My husband will be alone if I stay with Icie. But I can’t leave Icie, she is having open heart surgery for christ sake. It weighs heavy on me. Carl and Icie are the absolute loves of my life and at a critical time I have to choose one or the other. There will be guilt with whatever decision I make. There is no way around it. It is traumatizing. It is inevitable. There are so many little pieces of pain that emerge from Icie’s situation that no one could understand unless they went through it. Some may say “ oh stay with Icie for sure while she is in the hospital ” because logically that makes the most sense. But that isn’t just it. It’s just not that easy to decide. My husband and I are each other’s best support system. We will be the ones to make decisions about Icie’s care. I need to nurture and take care of that relationship as well. He is the reason Icie is here. Our love, is Icie. She is our everything. Carl and I have odds stacked against us. Marriages that have children with complex medical needs fail a lot of the time. Stress and money issues are the leading cause of divorce for parents of a medically fragile child. Him and I need to be strong together and be there for one another. If I’m with Icie and he has a breakdown in the middle of the night I won’t be there to let him know I’m right there mentally too and that it’s alright. We would then cry and be angry together. But I really do want to be with Icie. I want to care for her as much as I’m allowed. Carl doesn’t need my help after going to the bathroom or with feeding and hygiene like Icie so it makes sense I be there for her. It will help bring some normalcy for Icie and myself if I’m the one taking care of her instead of the nurses.( Fun Fact: I have in fact asked Carl if he wants help in the bathroom and hygiene department and it’s usually followed by him shouting “ Pervert ” down the stairs.😂) Our family is always there for support as well. We are all feeling the pain of CHD. But when it all said and done no one really understands. Until they are force feeding their baby medications, driving back and forth to different appointments every week to see just how “massive ” the hole in their baby’s heart is, waiting to be told a date for your child’s heart surgery, they will never know. And that’s fine. Thank god they don’t know. It’s horrible. Speaking of God. I consider myself a Christian. I wasn’t a crazy bible thumping Christian but I did pray every night and tried to be a good person daily. My prayers always started off with thanking God for giving me another beautiful day to live and thanking him for keeping my family friends and loved ones safe. I always asked him to guide me the next day to be a better person. I’d ask him to walk with my family friends and loved ones and keep them safe. I believed everything happened for a reason and that thought got me through a lot of pain. That has all changed. I haven’t successfully prayed since we discovered Icie’s heart defect. I tired to figure ways around why my God would want this for Carl and Me. I came up with some scenarios but in the end I ended up angry. Why would I pray to God for strength, through a situation, that God put us in? I’m angry. Especially when I see horrible people doing drugs all through pregnancy having healthy babies. And I have actually had a social worker say to me “ they are seemingly healthy babies”. I wanted to punch that cunt in the face. Like really!? I don’t see those babies cut open every 3-5 years for heart repairs. She totally missed the point. And as I’m sure you can imagine that was the last discussion I had with that thick headed hoe. Anyway… I can’t pray. I’ve tried. I say something and the last word I said just keeps getting repeated over and over again in my head. I don’t know. It’s hard to be positive and find good in things when I have a sweet, innocent, beautiful spirited baby in front of me being given such a bad deal. I know things could be way worse. But thinking like that does nothing for me. I’m just scared for my baby Icie. I’ll continue to have my silent cries at night and hopefully things get better after Icie has her surgery.

[ihearticie]

We have regular baby activities to attend also. 2 mth old shots did not go well. Poor baby screamed her head off, it was awful. 😔She seems ok now. Little bit of Tylenol and milk seems to be working so far. A nap is in the works but the construction vehicle beeping outside the house is making that tricky. The path to becoming a warrior isn't easy, she is well on her way though. #heartwarrior #ihearticie #2montholdshots #chd #chdsucks #tof #tetralogyoffallot #dorv #doubleoutletrightventricle #bicuspidaorticvalve #persistantleftsuperiorvenacava #fckchd #normalbabyappointments #heartparents

[ihearticie]

Our world revolves around you sunshine ☀️ It became real-yet again. We have a time frame for surgery. Early-mid August. It's weeks away now. Nothing makes the fear I feel go away. We need to be on the other side of surgery to feel relief. #ihearticie #firsttimeparents #heartparents #heartwarrior #doubleoutletrightventricle #dorv #tof #tetralogyoffallot #chd #chdsucks #fckchd #echocardiogram #cardiologyappointment

[ihearticie]

So peaceful right? Holding her this way was the only way I could get her to calm down. She was crying frantically, inconsolable, for a good 15 min. She is never like that. It scared me. We can't have her crying like that with her heart defect. It strains her heart and O2 levels to a dangerous point. Putting her knees to her chest helped calm her down a little which is what we are told to do during a tet spell, it's also what can help break up gas. Was her chest hurting? Was it a tet spell? Was it gas pain? She didn't turn blue.. this is CHD. It makes everything that is not the norm a frightening event of "oh shit is this it? Is our baby having one of those cyanotic events we have been told to watch out for?" It makes it harder her being our first child. Determining what is normal is very difficult-especially because what could be normal for a healthy baby (like prolonged frantic crying) could put Icie in the E.R. Hopefully when she wakes up she is her normal happy smiling self. Hopefully she just had some gas pain and was tired. Our sweet Icie. Your precious little heart is always on our minds. You have done so so well, please stay on this path until we can get your heart repaired. #chd #tof #tetralogyoffallot #doubleoutletrightventricle #dorv #bicuspidaorticvalve #persistantleftsuperiorvenacava #chdsucks #firsttimeparents #heartparents #loveofourlife #ihearticie #hangintherebaby