#persistentleftsuperiorvenacava

[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]

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]

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]

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]

Our baby girl, Icie Claire Stanley, was born May 8, 2017 at 10:07 am. She has done so well in the nicu with high o2 stats, and a series of unusual events allowed her to stay solely at Magee. She is coming home tomorrow, May 12. I plan on creating a blog about everything that happened from start to finish. There were hiccups, (when aren't there in life) but it truly is an amazing story that I feel needs to be shared. My husband and I are so incredibly in love with her. She is our sun and moon. ❤️

[ihearticie]

37 Weeks Pregnant

[ihearticie]

34 Weeks 5 Days Pregnant.

[ihearticie]

38 Weeks Pregnant

[ihearticie]

32 Weeks 4 Day Pregnant❤️

[ihearticie]

This face❤️❤️❤️I can not wait to meet you Icie. We love you so much already.❤️❤️❤️#loveofourlives #daughter #31weekspregnant #chd #chdawareness #doubleoutletrightventricle #dorv #persistentleftsuperiorvenacava #tof #tetralogyoffallot #chdsux #fckchd #1in100

[ihearticie]

I wiped the windows clean today. Though no longer visible to the public they are forever ingrained in my heart. I love you Icie❤️ #doubleoutletrightventricle #dorv #tof #tetralogyoffallot #persistentleftsuperiorvenacava #chd #chdawareness #chdsux #fckchd #1in100 #firsttimeparents #daughter #ihearticie

[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]

Thursday, March 9, 2017

Today I had another anatomy scan to check in on Icie’s growth. Because of the two vessel cord the doctors want me to come in every 4 weeks to have a sonogram. Everything was pretty normal at this scan. It did show that Icie may be dropping off on the growth chart slightly but it’s nothing to be concerned with at this time. She was weighing 3 lbs 10 oz and is in the head down position. I got some more beautiful 3D Images of her this time also. Seeing her face all smushed up in the womb makes me so anxious to meet her. ❤️The pictures confirmed she has her daddy’s amazing lips so she is pretty lucky lol. After the sonogram a doctor can in and talked to me. He was an older man and was very soft spoken. He told me that he knows what it’s like to have a child with an illness since one of his children has leukemia. He also told me his wife’s sister has tof. He said that after many repairs that were unsuccessful she had a heart transplant that made her a new woman. He told me to keep that in mind if repairs down the road aren’t holding up. He gave me a hug and wished me luck and left the room. I’m pretty sure I will never forget the conversation I had with that doctor. He had such a calm sense about him. It was comforting to me. That was it for that appointment. The next and last appointment I have with imaging is in April. We will have one more anatomy scan and one more fetal echo done. After that the next time I get to see Icie’s precious little face will be when she is welcomed into the world by her mommy, daddy and a host of cardiologist and nurses.

[ihearticie]

30 Weeks 5 Days Pregnant

[ihearticie]

Day 26 of Heart Month❤️ Carl and I have had to make serious changes in our lives since finding out Icie has a heart defect. We are now moving to a home that has forced air that will be filtered which will make it safer for her. We have our own home now, all for our precious little girl. I can now see the sink where she will be bathed, and it makes me so excited and anxious to meet her. We now have something that is a sure thing in our lives which is such a blessing since knowing what lies ahead for us depends on factors we can't predict. Here's to some stability and forward momentum to a new and beautiful life for our family. It's all for you Icie❤#firsttimeparents #1in100 #fckchd #chdsux #chdawareness #chd #doubleoutletrightventricle #dorv #tof #tetralogyoffallot #persistentleftsuperiorvenacava #ihearticie #newbeginnings #family #heartmonth #heartwarrior #heartparents

[ihearticie]

Day 25 of Heart Month❤️Look at that baby smiling! Pictures like this give me hope. What a sweet little thing w that zipper scar🙏🏻#heartmonth #heartwarrior #heartparents #ihearticie #tof #tetralogyoffallot #dorv #doubleoutletrightventricle #persistentleftsuperiorvenacava #chd #chdawareness #chdsux #fckchd #1in100 #firsttimeparents