#chdsucks

3 years 3 years and most days it doesn’t hurt to get out of bed anymore. 3 years and I don’t wake up expecting to be on the hospital couch anymore. 3 years and most nights I don’t cry myself to sleep anymore. 3 years and I can speak your name with a smile. 3 years and I have my speech memorized; “I have 2 boys, unfortunately my oldest passed in 2014 and my youngest is 2.” 3 years and your blankie doesn’t smell like you anymore but I still sleep with it every night. 3 years and I have panic attacks when I think about losing your blankie; house fire, forgetting it at a hotel, ruining it somehow. House fire causes the worst thoughts. 3 years and I work hard to make your presence in our home without it feeling like a shrine. There’s still more decorations/pictures for you then of your little brother. 3 years and I still look if I hear your name. I don’t know why. I know it’s not you. Maybe I like to see other kids who have your name to see how they act and play. Would you be the same? Maybe I can live in pretend land for just a moment. 3 years and I still see your signs. I see your hellos. I feel your hugs. I point them out to people or keep them to myself depending on the company. I sure wish your Daddy would feel your hugs! Keep them coming maybe one day! 3 years and I still need therapy but I don’t go anymore. 3 years and I still need medication but I don’t take it anymore. Your daddy thinks I can do it on my own. I wasnt an easy person to love and live with while on meds but it got me through. I know I can do life without them.. I hope. 3 years and I don’t go to your grave like I should anymore. Everyday to once a week to once a month. I still think of you and worry that you are cold but I know you are warm in God’s arms. 3 years and I see you in your brothers eyes sometimes. It brings me so much joy and so much pain at the same moment. 3 years and I see the changes within myself since you left me. I see how independent I was forced to become. I see how strong I am as you taught me. My relationship and bond with you is there. My relationship and bond with Jesus has grown so much stronger than I ever could have imagined. 3 years and I know who my true friends and family are. 3 years and I still wonder. 3 years and I still relive. 3 years and I still question. 3 years and I still regret. 3 years and I still blame myself. 3 years and I still love like I’ve never loved. 3 years and I still miss you everyday. 3 years.

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

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

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

Icie had another short weight check appointment at her pediatricians at 8:30 am. We found out she weighed 8 lbs 6 oz!! She has reached the 3-4 mth old desired weight for surgery! She is such a good eater. We hope that she continues this way🤞🏻The results of her kidney sonogram came back normal!! There was no issues and everything looked fine. 😊She is doing so well. ❤️❤️

Victoria Stephenson Please say a prayer for Stella! She has developed a chylothorax which basically means she can't tolerate fat in her feeds. Milk started coming out of her chest tube after her second breastmilk bottle today. She has also been dealing with severe pulmonary hypertension. Both of these are pretty common after the Glenn surgery. They added an oral hypertension medicine to help manage her high blood pressure. The solution to the chylothorax is to hopefully dry up the pleural effusion. There is a special formula (which I hope she takes) called Enfaport which is made with very low fat that should help. There is also a way to skim the fat in your breastmilk. This means I will no longer be able to nurse Stella until we get over this speedbump in her journey. This mamas heart is hurting tonight as I'm laying down alone in a sleep room with one of my babies down the hall hurting and the other down the street. I asked the nurse to call me as SOON as Stella wakes up so I can get back down the hall to feed her. She's had a good day overall. I'm exhausted mentally and physically. Tonight after Jason left to go get Jett in bed, Stella had a traumatic line pull to pull the IV out of her neck and was so upset that blood started to soak her chest bandage. The nurses and doctors are keeping an eye on it. #StellasHeart #HRHS #CHDSucks *UPDATE* 5:00 am*- She woke up and the nurse called me at 4:00am. I fed her two ounces and and we moved her to her dockatot to make her more comfortable. So far so good, she is resting peacefully in her dockatot. Pray that she continues to tolerate enfaport formula. emoji unicode: 2764emoji unicode: 1f37c (Picture taken at 5:00am)

Hide your crazy. It's the motto that goes through the heads of many "normal" people who suffer internally. I'm a wife, I'm a mother, I'm in social work, Im a Christian, I'm a fashion consultant, I'm a sister, a daughter, a niece, a grand daughter... I'm a hard worker, I get emotionally invested in my clients at work, and I am a get busy type griever. If you are reading this you either know me or you know of me. I like to present myself as a "normal" woman. So those moments when my crazy comes out... that's when I cringe at the thought of people seeing me the way I see me. I know I have issues. I have the meds, therapists, and diagnosis to prove it. My issues stem from a not so smooth childhood, my parents ridiculously messy divorce, an abusive ex boyfriend, and just when I thought I had everything under control... my kid dies. You mix all that together and it can get pretty rough around here. The good thing is I have started to perfect hiding my internal battles from people. You'd have no idea that the word 'psychotic episodes' comes up on the fun little about me paperwork at the doctors office. I'm a good mom and I'm pretty good in the field that I work in (most people would vouch for me on these things). I present myself as a professional and I try not carry my big neon sign with arrows pointing down at me that says "Her kid died!" But sometimes the situations, my mood, and the universe will align just right... queue the panic attack!! Like today, normal day. Over worked, under paid, tired, woke up feeling icky, behind on paperwork but all of this is pretty common. Went to a meeting for my LuLaRoe business. My little boy got to attend as well. As usual my little man is happiest while eating. So I give him pieces of chips. I know I know not healthy but I was fresh out of fruits and veggies at the moment and I desperately needed Dylan to be quiet so I could hear. Eating Dylan = quiet Dylan. He's had chips before and he will have them again so I wasn't concerned. And he chokes. He's starts making awful noises. He's trying to cough and he can't. I'm patting him on the back. My mind is racing. What do I do now? Bend him over to hit his back? Put my finger in his mouth? I was trained and I had nothing in my brain. It felt like several minutes went by but it was actually several seconds. He was able to cough it up on his own and he was a little shaken up but he was fine. Mommy on the other hand. Not so fine. Racing mind. The trying to cough noise. The feeling of helplessness. Trigger the entrance of our friend PTSD!! There was Drew in my mind. Struggling to breathe. Getting bagged. Nurses everywhere. The smells. The panic. The looks of confusion. The random moments in Drew's life went through my mind like the fastest slide show of all time ending with my child's lifeless body in his hospital bed as we left. All of this over Dylan choking on a chip. My hearts pounding. Tears filling my eyes. My hands doing the I'm gonna freak out dance. I can't catch my breath. Room gets smaller. I start to sweat. Deep breath in. I'm in a safe place. Deep breath out. I can feel my feet on the floor, my back on the wall, my hand on the sink. That's what it's like... when you can't hide your crazy. You never ever know when it's going to happen. You just hope and pray that it will pass and you can bounce back to normal land quickly. Ptsd. Mental health. Child loss. Bereavement. It's a hard life and a daily fight. No wonder I'm so exhausted at the end of today. I need to rest up to prepare my body for whatever comes next. Stay tuned my friends. Stay tuned.

11 months ago, we said goodbye. Loving and missing our baby girl so much💔 #chd #chdangel #chdsucks #iloveyou #imissyou #brave #beautiful #scoutnicole #grief #hero #hope #heartmom #hearthero #heartangel #love #1in100 #zipperclub