#heartwarrior

MOST RECENT

|| AUG • 19 • 2018 || .
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🎉Phoenix is officially 22 months old today ! Two more months, and he will officially be 2 yrs old.
So crazy ! What a wild (almost) 2 years it’s been .. __________
So we went outside today, and let Phoenix stand up on the sidewalk. He is still very developmentally behind, so he doesn’t stand on his own, or walk at all - (yet)
We try to let him experience as much as he can, and work with him daily to eventually accomplish these milestones. Phoenix also receives weekly home therapies that help him progress at his own pace. With time, we know he will reach those ‘big time’ developmental goals!
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[[ phoenix wears a corrective eye patch for a few hours a day over his ‘good’ eye, in order to strengthen his ‘bad’ eye that was damaged by the CMV (virus) when he was an infant ]] .
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#CHD #1in100 #heartwarrior #CHDwarrior #TOF #PulmonaryAtresia #MAPCAs #22q #22q112 #DiGeorgeSyndrome #CMV #cCMV #STOPCMV #cmvawareness #tracheostomy #trachbaby #trachlife #trachawarness #tubie #tubefeeding #tubefed #medicallycomplex #specialneeds #specialneedsparenting #phoenixthefighter

*Part 2* Well they had trouble getting the blood draw back and my poor baby’s heart rate shot up to 215 and his tongue started to turn blue. They finally gave him a little break, only for them to come back in 5 minutes later to try to squeeze the blood out again.

So this time his N-SamSam(his nurse) held him while they did it and mommy looked into his eyes, while patting his head trying to keep him distracted. It was all very stressful on all of us. Finally they got enough blood for the labs and no sooner then they gave him back his arm did he fall right asleep! So mommy took him and held on to him while Sam Sam got him a cold bottle to cool him down.
We are now waiting to hear what’s going on and will most likely be here for a few days. *Since I initially wrote this at 3pm they have come in to redo his EKG, because they were worried about the abnormalities or long QTs. They redid it and it came out with the same abnormalities again. They also redid his labs, because they thought his white blood cell count was extremely low. So we are waiting to get the 2nd test results back from the lab and to also have Cards come see us and review the EKGs as well.
Jeffrey had to take SamSam home and also get to work, so I am trying to keep Rycker occupied while also writing and posting this update.
If you all can please say a prayer for our Rycker Roo and specifically pray for his heart rhythm to return to normal and that there isn’t anything underlying that is going on causing this. Also please share this with your prayer warriors!
Again I am so sorry for not giving you guys your daily or even weekly dose of Rycker smiles!
I will try to get more updates posted this weekend and in the weeks to come! As we have had a lot of major milestones and happenings in these past few weeks to share with all of you!

We are home now after bring monitored overnight. Will post an update as soon as we get settled!
❤️❤️❤️

*This was originally posted on our FB blog page on Friday* Part 1*
It’s been a while hasn’t it?! Sorry I had to take a break from social media the past 3 weeks, due to a lot of issues we have been having with Rycker plus all the work we have been doing for the revamp and relaunch of Serving ALL Moms|The Breastfeeding Mommy website and blogs!
I figured I would just post a tid bit of an update about what’s going on currently.
Rycker was taken into the Emergency Room today at 12pm due to his heart going into A-fib. Basically meaning the rhythm of his heart wasn’t right and was honestly quite worrisome. It would jump from the 170’s right down to the 120’s then right back consistently for over a half hour before we called his pediatrician and she felt that we needed to take him in right away. Luckily we finally got a full time nurse whom has been with us for the past 3 weeks! So Sam was able to ride with us to the emergency room while we kept him on his pulse ox. His heart rate went up to 185 during the car ride and starting dropping and increasing again. Through this all happening Rycker was not active as he normally is and I was actually able to hold him for over 30 minutes which never happens anymore because he is always on the move!
We got into the ER and they took us back to a room immediately. Once in the room his heart rhythm was still the same. So they ordered an EKG. I honestly wasn’t sure if anything was going to be seen on it because with him it’s usually a mystery and we have to piece together all the different symptoms and even then we sometimes don’t get a concrete diagnosis. His doctor came in almost right away and said that she wanted to get some labs, that there were a lot of subtle things that she didn’t like, that were different from his previous EKG he had done last month.
So we obviously weren’t happy that they were going to have to stick Rycker, which tends to be harder than normal and we usually have to get the IV team in to do it.
Continued on the next post...

230/365
We had a welcome cookout for Vika today. Thank you to everyone who came to welcome our daughter into the family and the USA. We are so happy you are here with us, Vika! 👨‍👩‍👧‍👦💋❤😍
#miracleshappen #boymom #heart❤️ #chdwarrior #chdawareness #chd #chdwise #paulismyheartwarrior #hearthero #chdaware #heartwarrior #pcha #chddiagnosis #TOF #tetrologyoffallot #pchaohio #chdadvocacy #chdfamily #chdfunding #chdfight #chdmom #chddad #heartmom #heartdad #chdcare4life #chdaware

We are so thankful our friend is rock dropping while on vacation ♡♡♡♡♡ A huge thanks for helping us spread #longqtsyndrome awareness world wide through smiles ♡ Will you find them? ! ! ♡ ♡ repost of pics ♡♡♡♡ #rocksforryan #sads #sadsfoundation  #heartwarrior #awareness #heshouldbehere #community #helpingothers #lifeafterloss #childloss  #kindnessrocks #galaxy #sacramentorocks  #changetheworld #changelives #helping #hideandseek #california #greatoutdoors #womenrock  #travel #travelingrocks #adventure #getoutside #paintedrocks

For all the heart warrior mama's out there...how old was your babe when he/she had surgery?
#heartwarrior #chd #avsd #pda #asd

With our most recent family shuffling, our 4 year old twins were able to re-claim a bedroom. One thing I didn’t anticipate having young adult children was the coming and going. When our oldest left for YWAM we took use of this bedroom because he wanted to stay on the mission field. Eight months later he was home so we gave him this room and shuffled the little boys again. They are pretty excited to have a space all there own. Fun fact, the golden books on the shelf were mine and the vintage 1970’s Fisher Price record player.

it’s hard to believe that 2 days after this video was shot I was on life support, and with no time to spare! I “coded” twice before they got me on ECMO and gave my heart a rest. Today I am thanking God for the mountain of “perfect timing” events that got me to the hospital just in the nick of time, and for all of the quick action and decisions once there! Now I’m waiting for the biggest “perfect timing” event of all: the gift of a new heart. 💙 Thank you to everyone praying for me and supporting my family through this!!! I’m forever grateful!💙 .
. @ellebowes
#remysheart #heartwarrior #myocarditis #hearttransplant #remyscrew #iamlch #chf #chfbaby #heartbaby #babyremy #theressomethingaboutremy #anewcreation #levinechildrenshospital #seacreststudio #chd #chdbaby #newborn #newheart #waitingforaheart #waitingformy1 #organdonor #organdonation #goremygo

Tomorrow, Robby goes to CT Heart Camp! Today, I’m labeling clothes. #ctheartcamp #chdsurvivor #pulmonaryvalvestenosis #asd #heartwarrior #proudofmyboy

If only you knew his story. How he was far from normal and was a superhero in disguise. If only you knew he’s died and come back. If only you knew that he’s more than laughs and smiles. #HeartWarrior #KickCHDAss #HeartMama #SuperHero #Scars #Warrior #FightOn shoutout to @SummerWasFun for music content. #RunToYou #FightForYou #DonateLife #heartawareness #StarWarsBaby #TeamAnakin

We have been taking Will to all the spots Ahmet likes to go to while he’s in Istanbul. He used to get a drink called boza, with his father, when he was little. Will loved it! This boza shop has been opened since 1876. To get there, we drive through the old city walls and aqueduct, which was built in 368 AD! My mind is blown every single time we make this stop. #turkishbaby #istanbul #boza #downsyndrome #downsyndromelove #heartwarrior #specialneedsmom

Iris is slowly learning to play with Thea. Today she shared her blocks without asking 😊 •





#irisolivia #altheagrace #babiesofinstagram #sisters #heartbaby #heartwarrior #hlhs #kidsofinstagram #momlife #momofgirls #momsofinstagram

“Charlotte {we like to call her Charlie} was born May 5, 2016. Charlie was born with Down syndrome and a complete av canal defect. Charlie had two major surgery’s before 6 months of age, she was born into heart failure. Charlie is doing amazing, she has an amazing group of therapists and so many friends. Charlie is meeting her milestones and is filled with a happiness that is so pure. Charlie makes her family laugh and smile everyday. We can’t imagine our lives without her.” 💛💙✨ @lifewithcharliegirl #IAMABLE

The weekend started with a migraine (me) and an epic fall (Lucy) but ended with a successful shopping trip for new shoes and a celebratory Costa!
#CHD #CHDawareness #HeartWarrior #HLHS #IVF #Fertility #ICSI #Infertility #FertilityJourney #MumsOfInstagram #Mummy #MummyJourney #ttc #SecondaryInfertility #Miscarriage #BabyLoss #Anxiety #HeartMummy #IVFSuccess

Some people have asked me how I continue to stay so strong and so happy throughout such a journey. My secret.. Preparation! ♥️ I spend hours, days, reading other people’s experiences and journeys. Preparation is key & here it starts for the next procedure. It takes time to psych yourself up for such a big operation, but it helps knowing what the procedure entails, what to expect at recovery and what better way to do that, then other people’s perspective! I know we are all different with pain tolerance etc, but just finding your coping mechanism and talking to other people, is the way to get through such a difficult time! 💪🏻 #openheartsurgery #cardiology #electrophysiology #sternotomy #bypass #procedure #preparation #motivation #recovery #cardiac #heartsurgery #arrythmia #atrialtachycardia #surgical #potsie #heart #haveaheart #heartwarrior

Celebrating Freddy being cured ❤️🍾🥂#nephew #heartwarrior #proudauntie #bollinger #freddysfightforlife #lovehimsomuch

As I sit here in this waiting room I’m thinking about all the moments of ChrissyAnn life. From the time I found out I was pregnant, when I found out she was a girl and I walked the halls of Darnell acting like I was about to pass out because she was a girl. I thought about being in labor with her going through it by myself and delivering my child in the car up until finding out she was sick. All these moments running through my mind my baby my precious little baby back there alone and it’s nothing I can do for her but wait. I’m so nervous,I’m so scared what if something goes wrong??? What if she has to get a pace maker? What if her little body can’t take it and she don’t wake up??That’s my baby! What would I do without my baby? I prepared myself for this for months and now the day is here and I’m numb I can’t even cry probably because when I found out she had Ventricular Septal DefectI would cry every morning on the way to work.This is definitely the ugly part of being a parent. The part that no one talks about. The part where you want to take your child’s place and be the one on the table. Even though I know she is in good hands has ONE OF THE BEST DRS In the state with a great team behind him I’m still scared. I just want to be able to hold her hand and let her know mommy is still here I haven’t left your side. The part where you literally can’t do anything but wait because the situation is out of your control. All I can do is wait for this black phone to ring with a update. 8:49 am first update they are about to open her chest. Here comes the anxiety I almost pooped my pants! 10:21 am got a call they took her off the bypass machine and her heart and lungs are pumping great. *sigh of relief* 11:25 am after 4 hours exactly I seen my baby she made it through surgery. 💪🏿 8.14.2018 my young Queen is a open heart surgery survivor!
#congentialheartdisease #chd #chrissyanncrackedheart #chdwarrior #chdsurgery #chdawarness #vsd #ventricularseptaldefect #openheartsurgerysurvivor #chrissystrong #zipperclub #zippergang #openheartsurgery #heartwarrior #1in100

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