AtHomeWithTia

HEART MONTH 2020 PHOTO CHALLENGE ❤️💙 Day 12: Heart Dad Let’s have a standing round of applause for all the Heart Dads our there! The unsung heros, the rocks... & to be quite honest the ones who are often overlooked in the fret of things! Everyone is always asking about the baby, or how’s the mom handling things, how strong she is... who checks up on the dads? He walked the same path I did, walked the same hospital halls day in & day out. He watched his first (& only) born son go through hell & back time & time again. He held me as I wept & wept until I didn’t have the strength to cry anymore. He sacrificed his job to stay with his family when we found out our son would need more heart surgeries than anticipated. He stayed up all hours of the night to make sure our son was okay & to spend every last minute with our son before yet another heart surgery or procedure. He gave our son life saving infections 2x a day for 12 weeks when I didn’t have the heart or stomach to do that to my baby, admittedly a weak point for me. He stepped up to the plate when his family needed him the most & he knocked it out of the park. I am so thankful I had him. #HeartDad #CHDVoice #HeartMonth #CHDAwareness #HeartWarrior #HeartBaby #SingleVentricle #CHDAware #CHD #CHDWarrior #CongenitalHeartDefect #CriticalHeartDefect #PostGlenn #OpenHeartSurgerySurvivor #HeartMom #CureCHD #ConquerCHD

HEART MONTH 2020 PHOTO CHALLENGE ❤️💙 Day 11: Heart Mom I wouldn’t wish being a heart mom on my worst enemy, especially when the heart defect is so critical that more often than not the mother must bury her own child. These are the cards I was dealt & I’ll be damned if you ever catch me folding. I am often told how strong I am, how great of a mother I am, how one could not imagine being in my shoes... when I’m asked “how do you do it?” I think to myself: There‘s no other option. I HAVE to do it, for him. I have no choice. It WAS so hard to go through Lucas’ first several months of life in the hospital with all the surgeries & procedures he had to endure. It is STILL hard, even though he’s doing well now, even though we have been out of the hospital for 7 months now. It is absolutely exhausting trying to ignore the constant anxiety & fear that at any moment things can start to go downhill & fast WHILE trying to remain grateful & make every single moment count. All I can do it try, all I can do is keep pushing forward. And keep giving my son all the love I have, keep giving him the best life I can offer. I would give anything & I mean anything in the world to fix my son’s broken heart. I would give him mine if I could, but I can’t (& transplant isn’t a cure for CHD anyway.) The heart mom life is ROUGH & there’s no how-to manual & even when there’s a plan of how things will go CHD will laugh in your face & change everything. In this picture I am holding my 4.5 month old son, for the first time, two days after his 4th open heart surgery. #CHDVoice #HeartMonth #CHDAwareness #HeartWarrior #HeartBaby #SingleVentricle #CHDAware #CHD #CHDWarrior #CongenitalHeartDefect #CriticalHeartDefect #PostGlenn #OpenHeartSurgerySurvivor #HeartMom #CureCHD #ConquerCHD

HEART MONTH 2020 PHOTO CHALLENGE ❤️💙 Day 10: Heart Patient Pictured is a very swollen, cranky 4.5 month old Lucas only 5 days after his 4th open heart surgery, & only 1 day after his emergency abdominal surgery. The CICU nurse was removing his mediastinal chest tube post-Glenn & some of his omentum was pulled out with the drain tube... he was sent to general surgery immediately. Unfortunately this surgery caused his bowels to basically hibernate & he was not able to pass gas or stool for days! He was miserable, inconsolable, not even the pain management medication could help him. It was so hard to see him like this. It ALMOST worse than his recovery through open heart surgery because at least the meds worked for that pain! This incision also took the longest to heal, it took months & months. They stitched it shut at the bottom so it had to heal from the inside out. We were back in our home town in our new house before it ever healed completely. Sometimes being a heart patient comes with more than just heart related complications! #HeartPatient #CHDVoice #HeartMonth #CHDAwareness #HeartWarrior #HeartBaby #SingleVentricle #CHDAware #CHD #CHDWarrior #CongenitalHeartDefect #CriticalHeartDefect #PostGlenn #OpenHeartSurgerySurvivor #HeartMom #CureCHD #ConquerCHD

HEART MONTH 2020 PHOTO CHALLENGE 💙❤️ Day 9: Gone Too Soon CHD sucks. So many babies are “gone too soon” because of CHD. It’s estimated that around 4,000 babies don’t make it to their first birthday because of CHD every year. I’m apart of many CHD support groups & it seems like every single day I read a post about another precious warrior losing their battle against CHD. It’s so sad & so scary because some of these kids are perfectly fine one day & gone the next. I cherish every moment I have with my son because tomorrow isn’t promised for anyone & that fact is even more true for medically fragile children. Lucas the Lionheart has a Heart of Gold & he’s fighting CHD with every beat. ✊🏻💛 #GoneTooSoon #CHDVoice #HeartMonth #CHDAwareness #HeartWarrior #HeartBaby #SingleVentricle #CHDAware #CHD #CHDWarrior #CongenitalHeartDefect #CriticalHeartDefect #PostGlenn #OpenHeartSurgerySurvivor #HeartMom #CureCHD #ConquerCHD #HeartofGold

HEART MONTH 2020 PHOTO CHALLENGE ❤️💙 Day 8: Support I can’t even begin to describe the amount of support our family has received since the moment we found out about Lucas’ diagnosis! From friends & family to hospital staff & the online community... the support has been AMAZING! Lucas is SO loved. Lucas’ journey has touched so many hearts. We couldn’t have done it without all the support & love. Thank YOU all who have stood with us through it the good, the bad & the down right horrifying. One of the many amazing things I witnessed was the overwhelming support from the online vaper community & having fellow YouTubers share our story on their channels, I will be forever grateful. 😭❤️ #Support #CHDVoice #HeartMonth #CHDAwareness #HeartWarrior #HeartBaby #SingleVentricle #CHDAware #CHD #CHDWarrior #CongenitalHeartDefect #CriticalHeartDefect #PostGlenn #OpenHeartSurgerySurvivor #HeartMom #CureCHD #ConquerCHD

HEART MONTH 2020 PHOTO CHALLENGE! 💙❤️ Day 7: Scars February 7th-14th is CHD Awareness week! But all of February is Heart Month! Lucas has a lot of scars, these are just his biggest ones. He has them all over his body from different lines like arterial & picc. His scars are the proof of what he’s had to endure, of what he’s overcome. We are not embarrassed or ashamed of his scars & we will raise him to love himself completely. We will teach those around us of their meaning & the strength they show. Lucas is so much more than his scars, they tell his story but they do not define him. Plus for having his chest opened up 4 times & his little heart operated on 4 times before turning 5 months old I would say his zipper has healed well. #Scars #CHDVoice #HeartMonth #CHDAwareness #HeartWarrior #HeartBaby #SingleVentricle #CHDAware #CHD #CHDWarrior #CongenitalHeartDefect #CriticalHeartDefect #PostGlenn #OpenHeartSurgerySurvivor #HeartMom #CureCHD #ConquerCHD

HEART MONTH 2020 PHOTO CHALLENGE ❤️💙 Day 6: Hospital What do you think of when you hear the word “hospital?” Unless you are a medical needs family it’s probably far different from what I think of. Seattle Children’s Hospital was our home away from home... away from home, for most of the beginning of Lucas’ life. We experienced many “firsts” in the hospital including this first in this photo that I have never shared before. This was the first time I was able to lay down next to my baby after handing him to the surgical team over & over & over again... after having days & days & days of not even being able to hold him in my arms... Lucas was just shy of 3 months old when his team gave us the okay to temporarily disconnect him from his various monitors so we could snuggle on the stiff fold out hospital room couch. I slept many many nights on these futons either alone or crammed up next to my husband but this was the first time I could cradle my son close snuggled in hospital blankets & pillows. This moment that I longed for for so long, experienced in a less than ideal way, was in its own one of the most fulfilling experiences of my life. This moment, among many, was one of the first to teach me to never take anything for granted. To cherish every thing, especially the small stuff. #CHDVoice #HeartMonth #CHDAwareness #HeartWarrior #HeartBaby #SingleVentricle #CHDAware #CHD #CHDWarrior #CongenitalHeartDefect #CriticalHeartDefect #PostGlenn #OpenHeartSurgerySurvivor #HeartMom #CureCHD #ConquerCHD

HEART MONTH 2020 PHOTO CHALLENGE ❤️💙 Day 5: Surgery/Catheterization Lucas went under anesthesia 12 times before he was 5 months old. FOUR open heart surgeries, TWO delayed sternal closures, FIVE heart catheterizations & ONE abdominal surgery. His first THREE open heart surgeries happened in his FIRST month of life! These photos are graphic to show the rawness of CHD, each photo exactly what I saw the first time I got to see my baby after each open heart surgery. And the last picture is him this morning to show his true resilience & strength to overcome. If these photos are upsetting to you then maybe you should know something even more upsetting... the fact that CHD claims the lives of more children each year than ALL of the childhood cancers COMBINED yet CHD research is severely underfunded! Childhood cancer research is funded 5x more than that of CHD but CHD is a far more widespread issues. Why is that? Why aren’t we funding more CHD research? Why do 1 in 100 families get told “it just happened.” That is not an acceptable answer! THAT is why I will be raising awareness all month long! I am 1 in 100 mothers! #CHDVoice #HeartMonth #CHDAwareness #HeartWarrior #HeartBaby #SingleVentricle #CHDAware #CHD #CHDWarrior #CongenitalHeartDefect #CriticalHeartDefect #PostGlenn #OpenHeartSurgerySurvivor #HeartMom #CureCHD #ConquerCHD

HEART MONTH 2020 PHOTO CHALLENGE ❤️💙 Day 4: Medication Does a $320 heart failure medication look cooler if I make the photo more aesthetic? At 14 months post-Glenn (his 4th open heart surgery) Lucas is down to taking only 2 medications a day! He used to take many many more & some even around the clock every 3 hours! We are so grateful that he only needs these two daily right now; the half tablet once a day & the 1.2mLs twice a day. The half tablet is baby aspirin, mango flavored, this keeps his blood thin so it does not clot on the metal stent in his heart that has opened his left pulmonary artery to allow more blood flow through. The oral syringe has Enalapril, cherry flavored, loaded in it, this medication can be taken for a few different reasons but for Lucas it’s to aid in his heart function & it costs a pretty penny for sure, about $320 for a month’s supply! 💸 #CHDVoice #HeartMonth #CHDAwareness #HeartWarrior #HeartBaby #SingleVentricle #CHDAware #CHD #CHDWarrior #CongenitalHeartDefect #CriticalHeartDefect #PostGlenn #OpenHeartSurgerySurvivor #HeartMom #CureCHD #ConquerCHD

HEART MONTH 2020 PHOTO CHALLENGE ❤️💙 Day 3: Echo/EKG/X-Ray Lucas has had COUNTLESS echocardiograms, EKGs & x-Rays... far too many to remember but as you can see by these photos these tasks were MUCH easier when he was an itty bitty baby at 2.5 months old vs now as an active 1.5 year old! Here, he is pictured getting an echocardiogram during his interstage between Norwoods (yes, he had multiple) & his Glenn surgery & then him last week getting an echocardiogram (or attempting getting an echocardiogram) nearly 14 months post Glenn surgery. We try all the tricks & tips for echos on toddlers so we can avoid doing a sedated echo. Any other heart moms out there have any foolproof tricks for toddlers to hold still during echos? It would be much appreciated! #CHDvoice #chdwarrior #chdawareness #heartwarrior #heartmonth #chdsurvivor #openheartsurgery #singleventricle #heartmom #chdbaby #chdaware #chdtoddler #chdmom #heartfamily #congenitalheartdefect

HEART MONTH 2020 PHOTO CHALLENGE ❤️💙 Day 2: Diagnosis “We didn’t get good enough pictures of your baby’s heart but that’s not uncommon, it’s so small. Come back in a month, he will grow, & we will try again...” One month later. “We still didn’t get clear pictures of his heart but it’s really hard to get these pictures of a moving object (heart) inside a moving object (baby) inside a moving object (me) let’s try one more time...” One week later. “We can’t see everything we need to see in the heart but it’s fine, we aren’t worried at all! If you want me to write a referral for a fetal echo I can, for your peace of mind... but I’m 100% not worried.” These words, these conversations will forever be burned into my memory. OF COURSE, as a mother, I want absolute confirmation that my child‘s heart was okay. We took the referral & traveled to Seattle Children’s Prenatal Clinic with very little worry, my OB wasn’t worried, why should I be? Looking back now it’s obvious... they don’t write referrals for no reason... so if she was concerned why didn’t she tell me? For the longest time I was angry with my OB & placed blame on her, blame for what? I don’t know. How could she not tell me the truth then & there? Maybe she really had no idea what she was looking at because my son’s heart is so far from normal. As you can see in the very rough drawing of Lucas’ heart & swipe to see a normal heart. April 20th, 2018 - The fetal echo took so long & it seemed even longer that we were waiting in the little conference room for the cardiologist to come & tell us everything was alright, after all we were there for peace of mind, remember? No worries at all! Unfortunately that’s not how things played out. Lucas has one of the most critical forms of CHD. His defects include: sub-aortic stenosis (narrowing below the aortic valve that caused the aorta to be very small) mitral valve atresia (missing valve, without this valve there is no left ventricle) double-outlet right ventricle (both aorta & pulmonary artery connected to right ventricle) Lucas is single ventricle. #CHDVoice #chdawareness #heartwarrior #singleventricle #congenitalheartdefect #chdsurvivor #chdwarrior #heartmonth

HEART MONTH 2020 PHOTO CHALLENGE 💙❤️ Day 1: Date of Birth Lucas the Lionheart was born July 24th 2018 at 9:58AM weighing 7lbs & 13oz, measuring 20in long! This is a photo of Lucas not even 5 hours old in the bed warmer at SCH, definitely not your typical newborn photo. Due to severe complications with my epidural during the emergency c-section I was put under general anesthesia moments after he was cut out of my body. Lucas & his dad were transferred to Seattle Children’s Hospital while I stayed behind at UW to recover from the surgery. Lucas was stable despite his critical congenital heart defect but he was being given prostaglandin through an IV to keep his PDA (Patent Ductus Arteriosus) open in his heart which normally closes after birth. I stayed an extra night in the ICU myself & was finally able to hold my son for the first time when he was 2 days old. #CHDVoice #HeartMonth #CHDAwareness #CHD #CHDSurvivor #CongenitalHeartDefect #CHDWarrior #HeartWarrior #LucasTheLionheart #SingleVentricle #OpenHeartSurgerySurvivor #CHDBaby #CHDAware #HeartDefect #ConquerCHD

I love meal planning!🥩🥦🧀 Anyone else meal plan for the week? I usually make 2 trips to the grocery store per week because I need to get more veggies. I don’t buy all the veggies we need for the week just in case life happens & we don’t make it to every meal I’ve put on the menu, I don’t want to waste any food. And that’s another way I am continuing to reduce the waste my family creates!☀️ ONE THIRD OF ALL FOOD PRODUCED GLOBALLY GOES TO WASTE! 40% OF OUR FOOD, THAT WE GROW, GOES TO WASTE! That is such a terrible reality! All of the world’s nearly one billion hungry people could be fed on less than a quarter of the food that is wasted by the USA & Europe! 😩 Meal planning has decreased the amount of food my family wastes significantly because we are buying only what we need & what we know we will eat. Waste not, want not. Consider these facts the next time you’re in the grocery store & give meal planning a try! It also helps save $$$! 🤑 What’s on your menu? #zerowaste #almostzerowaste #wastenotwantnot #mealplanning #reduce #reuse #recycle #repurpose #rebuild #repair #mealplan #savemoney #saveourplanet #saveouroceans #mealmenu #weeklymenuplanning

Keeping a 24-hour halter monitor on an active & curious 18 month old single ventricle toddler is proving to be pretty challenging! ❤️💙 This is a portable EKG machine that Lucas has to wear for a day because he’s been having episodes of bradycardia (very slow heart rate) for the last couple weeks. He’s capable of pulling off the leads & I have to record every time he does. I’ve been constantly keeping him in a onesie because out of sight out of mind, right? Unfortunately he woke up with the RA & RL leads off & I have no idea how long they were off for as I went to bed sometime around 10PM after checking his blood oxygen level & heart rate. We might have to try another day with the halter because the bradycardia episodes happen when he’s asleep so that’s what they are trying to catch. His oxygen is pretty low & in clinic yesterday it was 75% while awake. That’s borderline acceptable for him & means we are heading down the road to another heart procedure in the near future. He had an echo yesterday & his heart function looked good, the flow through his DKS, PAs, Glenn & Aorta looked good, his valve function looked good & the in clinic EKG they did looked good. We were hoping that the halter monitor would give us more answers but with it coming off at night I don’t know right now. Overall Lucas is doing well & you wouldn’t know anything was different about him until you saw his scars or hooked him up to a machine. My little man continues to fight CHD with every beat. ✊🏻 #heartwarrior #chdawareness #singleventricle #chd #chdwarrior #toddler #openheartsurgerysurvivor #strength #faith #resilience #courage #heart #love #brave #strong #hope #1in100 #cureCHD

Lucas is 1 & a half years old today! He is constantly on the go & learning new things left & right. Getting him to stand still for a picture is near impossible & he’s on a mission to figure out the double latch baby gates, if we don’t double latch it he knows how to open them haha. He loves Mickey Mouse & the newest word he has learned to say is Grandma. We introduced the potty 1 month ago & he is doing great with that so far but we are going slow. On a more serious note Lucas has been having some concerning symptoms as of recently. We thought he might be coming down with another illness but no ‘sick symptoms’ have developed, only more heart related symptoms. His newest & most concerning symptom is bradycardia, this is where the heart rate is very low. Alone this symptom isn’t always concerning but he IS having other symptoms; lower oxygen, very blue, heavier breathing... Tentatively, come Monday, the plan is Lucas will wear a 24 hour halter monitor that is basically a portable EKG machine. He may also need an echo & even maybe another heart procedure, it would be his 6th heart catheterization. Although we don’t feel ready to head back to Seattle Children’s Hospital for another procedure it wouldn’t be too surprising for us. Some of you may recall that in December 2018 after Lucas’ last heart cath where the team placed a stent in his LPA (left pulmonary artery) we were told that we would most likely have to return for another heart cath within a year. Fast forward to September 2019 at Lucas’ last echo his team decided that everything looked so great & Lucas was doing so great that he did not need to go in for another heath cath. So the 1 year anniversary for Lucas’ last heart procedure came & went, the 1 year anniversary for being back in our hometown came & went & even the 1 year anniversary of us living in our brand new house came & went. We have been so lucky to spend an entire year at home (with the exception of two short hospital stays in 2019) going forward we must stay grateful. Please pray that Lucas will remain stable through the weekend & we can begin the diagnosis process on Monday with Dr. Toni, as always we will take things one day at a time.❤️💙