Following Icie's Heart

Icie had an apt to have her yearly ekg/echo at 1:15pm.

Violet came along with us which was a lovely distraction. ❤️Wormy did well for her ekg. She was sitting up playing with the nurses hat. The hat had flaps that hung down that could be squeezed so ears on the hat would flapped. It was very cute and kept wormy happy during the short test.

After that we switched rooms and waited for the echo. A cardiologist we have never met from the practice we used walked in to talk before the echo. She was very nice and went over Icie’s history with me before the echo took place. She drew a heart diagram on a paper towel for me to help visualize what she was going to explain. On a side note, I need to go through Icie’s medical history box to put all the heart drawings I’ve received - if I even kept them.🤔

She talked about the regurgitation from Icie’s pulmonary artery not having a valve. She said if 10 red blood cells (rbc) try to leave the heart 5 rbcs drop back down into the heart. Then the next pump, 15rbcs try to leave and then 5 drop back down again. It stressed the right side of the heart and that is what causes the right side to bulge. I never knew that till she explained it. She also talked about how in her cases she usually sees children having surgery to place valves in their teens, and not college age. She did say every cardiologist sees diff things and wormy could always surprise us and it can be held off till she is older but to think more in terms of teens for surgery again. She talked about how they decide to move forward with surgery and how there is a sweet spot as when to start stress tests and mris. We want the heart squeeze to be strong and not let the heart bulge to much before deciding to start moving towards surgery. If we wait to long and the heart gets to big in the one side it causes the heart to relearn how to squeeze strong again which is something we want to avoid.

She also told me that there was a change to Icie’s ekg from the last test. It’s showing that her heart is taking longer to relax than it use to. She said it could be because Icie was moving around during the test so she wants to do a repeat in 6 months. If the echo showed things being stable that would not need to be repeated. After we talked it was time for the echo. The echo went very fast and the lady was nice as always. I can’t say enough how grateful I am for finding this group. I love all the cardiologists I have met and their team is equally as amazingly

After the echo we met with the cardiologist one more time to go over the results. She said the echo looked stable. The patch is holding and there are no leaks and her heart is pumping. strong. She said she was going to note that there is now mild stenosis in the pulmonary artery that is volume based. She said that there have been so many advances in procedures even since wormy had surgery that by the time wormy will need surgery again hopefully it can just be a cath procedure. We talked about how Icie has BAV also and she said it truly is rare to have heart disease in the left and right heart but not to worry about it since her valves look good. She said intervention may not need to happen for that valve till worm is in her 50-60s. That was pretty much it. I left the apt with more understanding of wormys special heart and one more drawling of a heart to add to the books. ❤️

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.

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!

Icie had her cardiology apt today. Her echo was scheduled for 9:15 A.M. And visit with the cardiologist at 10:30am.

First thing was blood pressure. She tolerated it, she wasn’t happy but dealt with it.

Next was the ekg. She was fine with the stickers being put on her chest and belly but as soon as the lady was attaching the cords she started crying. I showed her some toys I brought for her and she could care less! She cried for about two minutes before she finally calmed down to watching cat videos on my phone. She ate a snack while we waited for the echo which always makes her happy!

As soon as she saw the darkened room for the echo she started to freak out. I had to pick her up and carry her into the room and place her on the table. She did cry for a bit but once she saw a Pete the Cat toy I brought for her she stopped and was pretty much calm for the rest of the echo. I was very relieved that all the tests were able to be completed and that she really did very well! Success!!

Thursday, August 22, 2019

2 Year Heartiversary

Icie had her first appointment with her new cardiologist Dr. Riley today at Texas Children's Specialty Care Clear Lake at 12:20pm. She was scheduled to meet her new cardiologist, get an ekg and also an echo. We got there and were seen almost immediately. Icie started to say “no no no” and push the nurse away as she tried to get Icie’s blood pressure. Icie started to cry, and she really didn’t stop crying until we were almost ready to leave which would be 2 hours later. Icie’s blood pressure and O2 was not able to be checked since Icie was hysterical so into the echo we went. Icie’s mood didn’t improve and I ended up laying on the table with her holding her arms in a gentle way so that she wouldn’t be able to push the lady’s hand away who was doing the echo. It was a very fast echo. Faster than we have ever experienced which was great so we were on our way to wait for the cardiologist. While in the room waiting another set of nurses came and said “we are here to do Icie’s chest X-ray. I was a bit confused and said “I wasn’t aware she was getting an x Ray also today” and the nurse mentions that it’s probably bc the cardiologist didn’t want to try for an ekg knowing Icie prob wouldn’t have it. Carl stood at Icie’s head and held her hands while I stood at Icie’s waist and held a cover over her lower half to protect against the x Ray. She had two x rays done, one on her back and one on her side crying the whole time and then we were done. We went back to the room to wait to meet the cardiologist. Icie finally started to calm down and was playing with a nail file and my wallet in the room waiting. She ate some chips and drank some water and was in a much better mood. The cardiologist, Dr. Riley came in and checked Icie out. She did really well and was just staring down Dr. Riley ad he listened to her heart and then he sat back down so Icie could continue eating and playing on my phone. He said that from her echo her heart looks strong and she looks to be doing really well. He said he couldn’t see the residual VSD but she was moving quite a bit to really tell if it’s gone or not. He said that he agrees with the current course of action of a stress test around 10-15 years old and that a valve being put in around high school/ college / young adult age sounded good. He mentioned that getting an MRI when she is in middle school will better determine when the valve needs to be put in. He also said that they try to wait as long as possible to put them in bc once they go in they need to continually be replaced, which we know. I asked a few more questions and that was it. He wanted to see her back in 6 months to try to get all the tests again and then mentioned we would prob be on a yearly basis once we can complete them. Checking out, Icie got to pick out a sticker from a sticker bucket and she said “wow” with delight and picked a tigger sticker and out the door we went to head home. It was an exhausting day. I do like her new cardiologist and feel like I can trust him. It was just Icie crying most of the time, breaking out in her normal hives and all that kills me. It’s so awful seeing her so upset. Ik Carl feels the same way. I could see him struggling and just wanting it all to be over while we were there. All in all it was a good appointment. We got our answers and it was what I wanted to hear. Dr.Riley saying Icie’s heart looks strong makes me feel so much relief. It also makes me so sad, bc as a two year old her heart should be strong. It shouldn’t be something I wait to hear, it’s not even something I should be thinking about, but I do. I told her how brave I felt she was on the way home. I told her that I know she was afraid but she was so brave anyway and she made me so proud.

We are home and right back to normal, as if it never happened. She is currently laying on the bed with me watching Creative Galaxy while I type this up on my phone. She is much more resilient than me. As soon as we got home she wanted “ga”( my phone) and “beeps” ( chips) and her stool to stand on while I needed Tylenol and coffee from being totally drained. I’m so happy we don’t have to go through this again until December. I pray that I can get her to understand that these tests don’t hurt by then and to just let them do what they need to. I’ll also be sure to have new toys or maybe even surprise her with her own tablet that day to keep her super busy. I should also mention that Icie will still be getting her beads for beads of courage but it’s through the mail now since where we go now doesn’t currently have the program in place. She will get a glow in the dark bead for her echo, a blue one for the doc visit and a light green bead for the x Ray. She will also be getting 2 new special beads that she had never had before. 1 is for switching care and another for having 100 beads! I never knew about the 100 bead bead or she would have had that one a long time ago!

Monday, October 1, 2018

Icie had her first echo in almost a year on this day. We arrived bright and early since her echo was at 8am and her visit with the cardiologist was at 9am. Icie walked all on her own down the hall to her appointment. The moment I remember having such a hard time imagining was happening. I remember being pregnant and not being able to imagine having Icie standing around the waiting room. I remember thinking how sad I would feel if it happened but it was quite the opposite as it turns out. I felt so proud of her. I was proud how strong she was, and I was so happy seeing how happy she was trotting around the halls. They checked her height, weight, and got her blood pressure and then sent us into a room to wait for the echo.

When it was time for the echo Icie did cry a little. It wasn’t a full blown cry just more of an “I don’t want that thing on me” cry. The y ch asked me if I wanted to sit with Icie and hold her in my lap and I said “let’s see how well she does sitting on her own since she is such a big girl today!” So she sat there all on her own! After she had three sticky tabs put on her to measure the hearts rhythm the echo commenced. Carl and I kept revolving the new toys we had bought her and mixed games that were on the phone in the mix to keep her happy. The Disney channel was playing on a tv in the room. It was some show involving puppies so Icie would watch tv occasionally. She also enjoyed the light show thing that was on the ceiling. She kept pointing to it and talking about something. She even got the tech involved by pointing in a way that seemed to say “do you see that!?” Our tech was great and would talk to Icie about the colors that were in the display. It really was just a good experience. I was so worried we would have to sedate Icie but thankfully we did not.

The echo took about 40 minutes and then we walked back to an exam room to meet with the cardiologist.

Icie got a bunch of fun stickers for being such a good girl and she was super excited about them! Jen, her cardiologist came in and said everything looked great! Her patches were holding up well and everything looked good. She did say that the residual vsd was still there but smaller than the last time it was measure. Because the residual vsd is still there Icie would require antibiotics if she has any dental work done, including simple cleanings. We were told she would be good to go for another year! I asked a couple questions basically asking about any limitations. One question I asked was if it was ok for Icie to fly on airplanes Jens response was” oh for sure she’s a normal baby, normal baby.” When I heard Jen say Icie was a normal baby it struck me as odd. For me seeing Icie every day I would call her a normal baby. She acts just like any other 17month old out there but for her cardiologist to say that was just odd. It just seemed like a poor choice of words. Icie is repaired, she is doing extremely well but she still has her defects and because of that she still is more prone to illness. I remember Jen talking about another baby while I was still pregnant. She said how this baby had BAV some holes in his heart as well as PLSVC and she called him “to normal for her.” Meaning he didn’t require monthly monitoring, so from a cardiologist standpoint he was to normal to be seen by her. I could see through her words when she called Icie normal but what if I couldn’t? What if I started exposing Icie to sick babies because “babies need to get sick” all because I legitimately thought “oh sweet she is cured she is now totally normal!”? It’s just a dangerous thing to say but it makes me so sad as well. Icie is normal. I will never make her feel as though she isn’t but to actually say “ she is now normal” is upsetting to me. I don’t know, I think to much. I’m an over thinking very emotional person and it makes me a Weirdo!

We got Icie her new beads of courage for the day to add to her string and then headed off to get some food at the cafeteria.

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.

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.

Last night I was laying in bed naming all the things I was thankful for in my head. I was thanking the Lord for allowing me another day to be with Icie and my husband. I was thanking him for Icie’s health and saying how thankful I am that he choose me to be her mom. I made sure to let him know she is the best thing to ever happen to me.

It’s a different kind of love I have for Icie. I love my family and I love my husband, he is my rock, but my love for Icie is set apart from that love. She is a piece of me. It’s hard to explain past that.

I was almost asleep when the memory of Icie’s anesthesiologist telling me I couldn’t go back and be with her while she was put under. Icie was crying as I passed her over to him.

It threw me into an anxiety attack. I repeated to myself “let it go” “let it go” “it’s in the past it’s over” trying to remind myself I can choose to no longer be affected by that instance. I really believe that my heart was beating so fast and strong that the bed was shaking from it. It’s awful. I hate these memories. They do not benefit me one bit and I wish i could just get rid of them. Icie was laying next to me and that is ultimately what pulls me out of my attacks. I’m sure that if Icie was not a heart baby she would be in her own crib but having her in bed with Carl and me makes me feel so much calmer and happier. I’m not sure where I was going with that point. I just fell like it was necessary to say.

Anxiety is creeping over me currently just thinking about that awful memory of the anesthesiologist. My chest is feeling heavy.

I’m thankful Icie will not have any memories of that day.

Icie will be a year old in 11 days. I’m excited, like most parents, but thinking about it gives me so much anxiety. The good things in my mind surrounding Icie’s birthday are that I finally met my sweet beautiful Icie, labor was fast and fairly easy, and that I’m excited to be furthering myself from that day as the years go on. I’m sure whoever is reading is thinking “wait.. what?? Wtf??”

I’m hoping the further away it gets the less anxiety I will have thinking about it. The negative things surrounding her birthday are how I wasn’t able to hold her long right after birth, the thought of the doctors inserting lines into my newborn baby across the room from me, being left alone in the labor delivery room while everyone else got to see Icie, me not being to see her till almost 8 hours later, me not having my baby next to me in the recovery room, her being in the nicu for a week, me not being there for my baby if she cried during the night bc I had no where to sleep in the nicu, having to leave Icie in the nicu every night.

It gives me awful anxiety. I feel like I missed out on so much with my sweet newborn baby. Just the other night the anxiety hit me like a ton of bricks. I was almost asleep and my brain was like “ hey!! remember having to lay your baby down and leave her while she was asleep all bundled up because your selfish ass had to go home and sleep shower and eat?” I instantly started to cry. God I fucking hated those days. And as happy as I am my precious baby is turning one. I can’t help but lug those feelings and thoughts along to the celebration. My mind is fucked. I feel it as a lump in my throat and my heart just starts racing. It’s always at night too which makes it even more fabulous. Luckily I can just lean over and kiss Icie’s sweaty head and tell her I love her, but it doesn’t make those feelings go away. I love her more than anything. I am so proud of how strong and smart she is. Time really does fly by, even though we had our share of crazy shit to deal with during the first year. I’m so grateful. She is my everything. I’m hoping my damaged mind and soul gets repaired as time goes on so when it’s her birthday I can just celebrate with out anxiety lurking beneath the surface. We need to create joyous memories on her birthday to distance and coverup all the negativity that looms over that day for me. I feel to much. CHD is like an invasive plant that twists and loops it’s vines around my brain, it’s roots anchored deep within me. It locks my brain in it’s grip and it’s so difficult to shake free. I’m sorry Icie. You know I love you and you know how excited I am. I just want to be the best mother I can be for you and I feel like I failed you in the beginning. It’s my own guilt. I should have stayed with you in the nicu. I wouldn’t have the anxiety that makes me feel like I abandoned you. It’s one of the reasons I didn’t leave you during your hospital stay. Me taking care of myself is being with you.

So at 2:30 am last night wormy was restless and I could hear number 2 brewing. After I discovered she pooped I grabbed a towel and we went into her room. She doesn’t lay on her back to get changed anymore and she likes to sit down while I'm trying to clean her so I was prepared. As she stood up from her dirty diaper fresh poop came streaming out landing on the towel I brought in. I was like ok, this isn’t normal poop it’s diarrhea which=tub time. That is when the fun began.

I wrapped worms butt up in the towel and as soon as I turn on the bathroom light I saw one of those fast moving long legged water bug house centipede things run across the floor and I was like “oh no no no no!! Not now please!!" Pleading to ..I’m not even sure who lol.

I peek over to where I saw the bug and see it’s in the corner on the floor near the toilet. I put wormy in the tub rinse and clean her off, fill the tub with a bit of warm water and am like “ok fuck” because I have a sick baby and a scary bug to deal with.

U should have seen me. I was looking for the bug and looking back at wormy all quick like. Every time I looked at the bug it had moved. First it was on the floor in the corner, then it was on the wall but still in the corner, then on the straight up wall saying “toodaloo “ to the corner and the last time I looked it was in the middle of the wall above the toilet. It was go time at that point because next it would be on the ceiling and momma isn’t good with bugs on the ceiling.

So I was like "wormy hold on " as I see more poop steaming through her bath water. I grab bleach, because I’m way to scared to try to hit it with a wad of toilet paper, and splash the bleach on the bug. ( it was in the corner way away from wormy) The bleach hits the tail end of the bug and the bug seperates!!!!!!!

I was like "oh no way" out loud in half amazement and half terror because now 2 segments of bug are moving around. I was thinking the tail end was babies??? Maybe the bug is so fragile that the force of the splash cut the bug???? Or maybe the bug can detach as a flight response???? I still have no idea and honestly I wish I could forget about it all together. The tail end finally stopped moving but now I had lost the bigger bug portion.

So I'm on my tip toes changing Icie’s water fearing for myself at this point. So I get her clean and the water clear again and then get back to bug detection/ elimination mode. I'm basically laying onto of the radiator heater thing in the bathroom searching for the bug because I’m terrified it will run across my feet or something. At that point I knew what I was dealing with would make a great story to tell after it was over. See I should never in a million years be laying on that heater with my entire body weight because I’m pretty sure that shit will go through the floor. I was imagining myself riding that heater through the floor to the kitchen below.

So I’m looking for this bug and I'm like fuck fuck fuck ya know and I see more poop in Icie’s water so I have to go deal with that again so as I'm changing her water I see the fucking bug on the towel she pooped on, which was on the floor

I'm like "fucking seriously ????? " I throw another towel on it and start stomping on it like I'm making wine or some shit. I even threw the bath mat ontop of the other towel to add more weight to make sure the fucking thing is dead. It was complete chaos. Me in my fucking underwater with my fat ass all flapping around trying to kill this gross ass bug while my poor baby is in her tub all sick pooping.

Her little face the entire time was like “uh wtf is going on.” The dogs were in the bathroom also because I opened the door thinking they would help which is a fucking joke. Icie was all like "a da!! a da!!!” meaning "a dog, a dog" all excited and I'm like “yes wormy they are dogs” as my hair is flapping around and I'm scanning the bathroom in a panicked state.

It was like I was two diff people at the time. When I was with her I was calm saying “it’s ok baby everybody gets a case of the back yard struts at some point,” and then I felt nothing short of a Neanderthal while dealing with the bug.

I can’t be the only one who had something like that happen to them. It was so unreal at the time, but I find it hilarious now. God help us if Icie for some reason has that situation as a memory. I’m sure it would be quite funny from her perspective though.