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Last day of #chdawarness week!! 1 in 100 affected. Miss you son. #missingmason #chdsucks

I have another crazy idea.... bare with me... Many of you have been following from the beginning and some have just recently joined our journey! I have a big surprise Iโ€™m working on for Emily! So what do i need form you?

Prayers beds! They can be ANY type of beads from a craft store but promise to say a prayer on I๏ธt and maybe include a little note! This will be the most beautiful keepsake for her to have! A chain of beads for each and every single person who has been praying for her. Her birthday is not until January 30 but i wanted to give everyone more than enough time to send there beads!!!!! THANK YOU ALL MUCH for loving our girl.
Emily Cepkauskas
PO Box 184
16525 W. 159th St
Lockport, Illinois 60441 โค๏ธโค๏ธโค๏ธ Please share! The more prayers the better!!!! โค๏ธโค๏ธโค๏ธ .
. #downsyndromebaby #endtherword #changingthefaceofbeauty #nothingdownaboutit #t21rocks #photooftheday #babiesofinstagram #babiesofIG #trisomy21 #homiewithanextrachromie #downsyndromeisbeautiful #downsyndromerocks #babygirl #morealikethandifferent #t21awareness #downsyndrome #theluckyfew #shouttheirworth
#chd #chdwarrior #chdsucks #chdmom #chdawareness #chdfamily #chdsurvivor

(Photo from earlier today) Little Miss Hazel has quite the flair for the dramatic. We landed in the ER on Monday with trouble breathing and were admitted for a little oxygen support. This morning she started really struggling so we got bumped to the PICU for extra help. She is currently intubated so her little body can rest and focus on fighting these viruses like the warrior she is. Having a sick baby is the worst, you guys, but I'm ready to cheer her on the road to recovery.

Happy ๐Ÿ’™ Day!
Thank you all so much for the support through my CHD journey!
Hugs and Kisses

#chdsucks #chdaware

Ever gone into a test and thought "I'm going to nail this!" and you get the results and you completely failed?! That is how we felt today.
We walked in with the thoughts that today would be pretty good news but what we got was a hit in the gut. Unfortunately Masons systemic ventricle is just not pumping well. Which we knew but if it does not improve (which it hasn't) then we are in a world of hurt. If Mason continues to stay flatlined on the growth chart then the Doctor frankly told us that he won't live. That will not be an option! And if all we are doing doesn't help improve and we reach our maximum even by being on IV medications in the hospital, then it becomes a heart transplant ordeal.
Right now our main goal is lane A; getting him better with medications and gaining weight in hopes that ventricle does what it needs to do. But sadly we cannot rule out a heart transplant.
My heart is breaking and all I can do is pray and have faith that it's in Gods plan to get us all through this without loosing him or him needing a transplant. But at then end of the day if the only option we have is a transplant, we take what we can to keep our sweet boy here. #masonstrong #chd #heartsurgery #chdsucks #heartwarrior

Ruby had her first post op echo today! We unfortunately didnโ€™t get exactly the results we wanted! Things donโ€™t look bad but they also donโ€™t look great. They need more information, she is going to need a sedated ct angiogram in the next few weeks to see whatโ€™s going on! She has been pretty sleepy most the day from the sedation but overall is doing well! #chdawareness #chdwarrior #chdsucks


My sweet little pilgrim! ๐Ÿ˜โค๏ธ๐Ÿฆƒ loved watching his little school performance and seeing him as proud as ever with a little sneak of a wave during the song. Love this little man! #ccavb #heartwarrior #cooperallen #heartfamily #chdsucks #chdaware

Its not easy to pretend you are happy while u are broken inside, keep smiling,like it or not this is my tragicly beautiful life of mine ๐ŸŒƒ๐ŸŒŒ disyukurin aja lah.. #tagsforlikes

Family & Friends!

We are having blankets made by a fellow Heart Mom who works tirelessly to create beautiful and unique designs for her shop, With Hope and Grace. Our family is hoping to collect enough donations to be able to donate at least 30 directly to Heart families who will be spending time inpatient at Childrenโ€™s Mpls on the Cardiac (CVCC/CVICU) floor.
Would you like to sponsor a blanket or two? Each one will be $15 and your name will be added to the card we include with the blankets.
Our hope is to deliver the blankets on Margaretโ€™s 1st Birthday. Our goal for collecting donations is from NOW until December 18th (so we have time to get the designs put on the blankets!). Comment below if you are interested and we will be in touch. Feel free to share this post as well!!! #mightymargaret #chdawareness #chdsucks #chd #tetralogyoffallot #tof #heartwarrior #heartfamily #hearthero #giveback

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