Our Miracle - Ryker's Journey with Heterotaxy

Our Miracle - Ryker's Journey with Heterotaxy

Monday, November 19, 2012


11/19/12 Happy Boy just weighed in at 7.23KG!!! That's approx 15lbs 8oz!!! Yay Ryker!!! ~ Rachel
11/18/12 Dr. Marx just came in to see Ryker & he was beaming! He said- "I just had to stop by & tell you that Ryker's morning Xray looks better than it has looked in MONTHS!!"
Yay little Buddy!!! His lungs are getting more & more clear & he is getting stronger & bigger (literally bigger! He now has back fat...lol! I LOVE baby rolls!!) We will be weighing him later today & I can't wait to find out how much he is! I could not be more proud of my baby boy! He is doing SO good & smiling all the way! Happy Mommy here!!!! :) ~ Rachel

Sunday, November 11, 2012

Event for Ryker & Family in Utah!

If you live in Utah and would like to attend this event the proceeds will go to Ryker & his family. 

Friday, November 9, 2012

Happy Halloween!!!!

From Rachel - I know Halloween is past...but I had to post this one (even if it is late) This is Ryker's little Halloween outfit that his (& our) Absolute Favorite Nurse got for him for Halloween! Her name is Sonya & she is AMAZING!! Over the last 8 months that Ryker has been in the Hospital, she has been here for him & us the majority of this time! We love her SO much & we are SO grateful for her! And- look how dang cute he looks in orange! :) Sonya & I decided its Ryker's color (not blue....or grey for that matter! Lol!) Technically he was intubated on Halloween, so this was a little later. I think He deserved to be free from the tube for his first Halloween pic! 

I have had a lot of people ask over the last few weeks when Ryker is going to be able to go home. It's a little complicated, but I will try my best to make some sense of it for you all who are wondering...
I know I haven't been super explanatory lately, but so many things have been so complicated for the last few months that it is hard to really go into detail & make any sense to anyone who is no
t in the medical field (or another heart Parent:) There has just been a lot going on & the last thing I want to do is say too much, so I'm sorry that there have been a lot of questions unanswered lately. The main thing is that Ryker IS doing really good right now & we want it to stay that way!!! :)
Ryker will be having another Cath in a few weeks (exact date is based on him & how he is doing) Depending on how that Cath goes & how his Pulmonary Vein Stenosis looks he will either go shortly towards his Glenn Procedure (PRAYING SO SO HARD THIS IS WHAT HAPPENS!) or he will go into a Sutureless Repair to hopefully correct his PVS. We are Praying SO hard that Ryker's PVS has backed off a bit so that he is able to get the Glenn Procedure done so he can get back on track & get home sooner than later!!! I have had many of you ask for specifics to pray for & this is one one of them. Ryker's PVS has been THEE thing in his huge diagnosis that has honestly scared me the very most. It's baffles me that somehow he (& many other amazing babies) are able to survive with half a heart because of the amazing surgeons & technology these days, but somehow these teeny-tiny pulmonary veins get STUPID PVS & it's incurable unless it decides to subside on it's own for the most part. So please, if you are praying for my sweet baby- Please pray that his PVS will subside & he will be able to have his Glenn Procedure & GET HOME!!! :) Thank you all so much for caring so much about my baby boy! It means so much to both Jason & I :)

Saturday, November 3, 2012

Diagnosis Day Anniversary

Exactly one year ago today our lives were changed forever! We went to our Doctor for our routine 20 week ultrasound, to see our sweet baby that we had already known for weeks was a boy....Only to find that he had a very serious heart defect...
This was the first, of now MANY hardest days of my life, yet I know that this is the only way we can have our little Ryker in our lives and just knowing that makes it all 150% worth it!! I love you SO much Ryker & I would start from the beginning over & over again just to know I have you in my world!

Here is a link to my personal blog, with my blog post of my perspective from that very hard day one year ago...