Shannon visits Boston

Rachel's sister Shannon visited Boston and the post below is written by her about her trip.

On December 21^st I was able to fly to Boston with Rachel and Jason’s boys Trett and Jadd. I can’t even tell you how grateful I was for this opportunity and how excited I was to finally be able to visit!! Rachel and I have always been very close and it had been almost 10 months since I had seen her and sweet baby Ryker (the last time I saw them was on the day that Ryker was born). Needless to say it was a little emotional when I saw them. Rachel, Jason, Braylee, and Addi came to pick us up from the airport and then we all went to see Ryker in the hospital. Fortunately Ryker was on the Recovery floor, so we were all able to be in his room with him at the same time. I am so grateful that I was able to be part of their reunion! Being there with them made me realize how incredibly strong they all are! It is something that I never fully understood until I went there. I have always known that Rachel and Jason were amazing parents and that they had a very strong family, but Ryker has made them so much stronger and it was amazing to see it in person! Rachel and Jason give everything they have to their kids! I could go on and on about what selfless parents they are!

During the two days that I was there Ryker was thankfully doing very well! I was so glad that I was able to hold him and to see his sweet smile! He is such a tuff little guy even with all that he has gone through he still was so smiley and sweet! Even on a good day Ryker goes through so much that I never knew about before being there and he is so brave throughout it all. The staff at the hospital is so amazing! You can tell that they love and care about Ryker so much. Nurses would stop Rachel or Jason in the hall to ask how Ryker was doing and they would come to his room to check on him even though they were not his nurse at that time. It was very comforting to see that there are so many doctors and nurses that care so much for him all the time!

Since I was only able to stay for 2 days Rachel and I only slept for about 2 hours the whole time! I loved being able to hold and snuggle Ryker for hours while Rachel and I caught up on things. I wish that we weren’t so far away so that we could do this all the time! I think I miss her more since I left then I did before I went! J Rachel is stronger than she ever gives herself credit for! I have never met a more positive, selfless, brave, and loving mom! She has been such a great example to me and so many others and I am so thankful to have her as my sister!

Since I was there just a few days before Christmas I was able to see how giving so many people have been for them especially around the holidays. There were so many sweet and thoughtful cards and gifts sent to them from many of Ryker’s amazing fans. It brought tears to my eyes!! I am so grateful for all the prayers and support you have given them throughout Ryker’s journey and you all have truly inspired me to be a better person!

I cannot wait to visit again, hopefully for a lot longer next time and be able to bring my husband and baby!

Sweet baby boy!

At 6am this morning, after a long & extremely hard night for our little buddy (& Daddy) Ryker is back in the Cardiac ICU. He was having an extremely hard time keeping his O2 sats up where they need to be & scared everyone pretty bad. Thank goodness that we had the wonderful staff here in the CICU very close by. As hard as it is to take this step backward, we honestly feel like no matter what he ALWAYS does better when he is here in the CICU. The Doctors & Nurses all know him so well here & know exactly what he needs. I know that he will be better off here. As of now Jason & I are both here at the Hospital with Ryker while he recovers from it all. They have upped his Milrinone & added in Dopamine...:( (both are heart med drips) But thankfully he is already looking SO MUCH better & will hopefully be able to wean back down on both those meds soon. I have to say though, regardless of it all he is so smiley & sweet! I walked in the room when I got here & said "Hello sweet baby boy!" & he looked at me & gave me the biggest sweetest smile!! I love my sweet boy so much!!

Update from Facebook 12/22/12 
Sorry it has been so long since an update, it has been a busy week, not really too busy with Ryker necessarily. Just a busy week with getting our boys here & with Christmas coming & a big fun day yesterday with all of us. Ryker has had a really good week all in all. He has finally settled out from the move here to the Floor & all the craziness that has gone on & now he has literally slept for almost a full (& muchly needed) 24 hours, of course with little wake-ups in between, full of his sweet beautiful smiles!! He is SUCH a sweet boy!! As far as his infections go- Thanks be to God, nothing has come back positive for 4 days now!!! Yay Little Man! He is doing so well & fighting it all off like a champ! He will remain on the heavy antibiotics for another two weeks & as long things continue going as well as they are, which they will!! :) Other than that, Myself & my sister Shannon are hanging out getting lots of time together with our sweet Ryker & soaking it all in, while Jason is at home loving his time with all four of our other kiddos TOGETHER!!

Yesterday was the best day for all of us!! We got the ultimate Christmas gift....OUR BOYS!!! It was so great to see them again after SO long! We all missed them more than you could imagine! I wanted to hug & kiss them, however, anyone that has pre-teen boys know that kisses just don't fly :) But that was okay, hugs helped & I picked Jadd up for a sec & attempted to snuggle him...lol...He is getting pretty heavy! :) PLUS- My Wonderful Sister Shannon came with to visit & it was pretty emotional to see her after so long! (The last time I saw her was the day I gave birth to Ryker) Then we all went to the Hospital & had some good time together. It was a great day!!! Oh & pics will be coming, we had our Amazing Friend/Photographer Myndi, come along to take lots of pics. Thank you SO MUCH Myndi!! I can't wait to see all that you captured :)

Meeting update

Post from Rachel ~ It has been a very hard week...specifically the last 48 hours! I have checked out mentally & emotionally, so I apologize that I have avoided FB all together. We had a long hard talk on Monday evening with most of Ryker's team. In that meeting we were told the heart wrenching news that Ryker is in need of a heart transplant in order for him to have his best chance at life......we have always known 

that heart transplant was something that Ryker may need in the future, we just never thought that it would be so soon. To be given that news & know full well that our baby may not be a transplant candidate was, needless to say, excruciating & emotional news to receive! This morning Boston's Transplant Team thoroughly discussed Ryker in their board meeting & came to the conclusion that Ryker "could" potentially be a Transplant candidate, however there are many complexities that come with the word "could". Ryker has never been a cut & dry "Yes or No" kind of baby when it comes to his very complex anatomy, so we never expected it to be a simple answer. We just hoped & prayed with all our hearts it could be this one time. From here there are a lot of possibilities & unknowns.....leaving a lot of information for Jason & I to emotionally digest & eventually have to make decisions no parent should ever have to be faced with. We appreciate your prayers, love & concern more than you all could ever know. Please keep the positive energy coming for our Beautiful baby boy!! 

Waiting for meeting with team.

12/8/12 Via Rachel Facebook

It has been a really hard week with all the unknowns. But we are trying our hardest to be as patient as we can & not let our minds & questions get the best of us. It has been a very busy week in the here in the CICU & we truly understand that this is what comes with not only having the top Cardiac surgeon in the country, but also having Ryker being one of thee most complex cases that has walked th...

rough the doors of Boston Children's Hospital. It isn't as easy as just looking at the results & saying "okay this is what we are going to do" There is a ton of thorough study & thought that goes into every step that is taken with our little Ryker. Our plan as of now is to have a meeting at the beginning of the week with Ryker's entire team- Dr. DelNido, Dr. Marx, Ryker's Primary CICU Nurse Sonia, Ryker's Primary CICU Attendings (Head Specialty Doctors), Dr. Salvin, Dr. Vamsi & MANY others that have so much to do with his care plan so that we are able to go over every detail & make sure every question is answered. From there we pray with all our hearts we will get the answers we need so we can continue down this path the way Ryker needs us to & have the strength we need to do whatever it may be that our sweet baby boy needs us to do. Thank you SO much for all the many messages & comments letting us know how much you all care, it means the world to us all!!

Currently Jason, Myself & our sweet girls have been lucky enough to get one of the hospital family housing rooms so we are able to spend the night together as a family & hopefully get our minds off things for a minute. Ryker thankfully has one of our Favorite nurses, Kristen, with him tonight!! She is so amazing with him & he absolutely LOVES his time with her! Then tomorrow morning we will all be able to be together as a Family in Ryker's room in the CICU!! We cannot wait! :)

 

We LOVE our time together!! Cannot WAIT for our big boys to get here!!!

 

 

Extubated

From Rachel 12/6/12 ~ My Beautiful Baby Boy EXTUBATED!!!! & snuggling with his incredible Daddy!!! I love these boys more than life itself!!

Online Auction & Dollar Challenge for Ryker's 9 month Birthday!!!!

One of Ryker's amazing friends started this challenge and asked me to share it with all of you. Thank you for all your love, prayers and support. ~Tisha

Betty Bowen-ShandraMiracle Ryker
Ok Ryker fans, as we all know tomorrow is Ryker's 9 month birthday. Lets make this a spectacular one. I am going to repost my dollar challenge:

Lets everyone of us donate at least $1.00 for Ryker's birthday tomorrow. After donating leave a comment tomorrow at 2pm eastern time saying "Happy Birthday Ryker. We love you and donated" There are over 9000 of us followers. My goal is for at least 2000 of us to donate. Now lets show our favorite boy some love. Let the donating start now!!!

Another one of Ryker's amazing friends is doing an online auction for him. If you have not liked the page yet please do so. Also if you have any ideas you would like to donate towards the auction please send Maddison a message on the Auction page.  https://www.facebook.com/pages/Auction-for-Miracle-Ryker/106857162816253?fref=ts

Update on Ryker from Rachel 12/5/12 - 

Still no news. :( But Ryker is nice & comfy thanks to narcotics! His friends in the CICU know him well & know he will gladly extubate himself if they are not careful. Hopefully they will work toward extubation tomorrow!

Cath Update

Cath update yesterday from Rachel - Well....We have some news, although very complex & still don't know exactly what to make of most of it, it is some news. There are MANY variables to the Cath that I wont go into as of yet. But the answer to the question that I know is on everyone's mind is....

Sadly they did have to dilate two of Ryker's pulmonary veins. One of which was his lower left that we were expecting to be dilated, the ot

her was his lower right.....:( We are still unsure what exactly this means for our little Ryker. Dr. DelNido was out of town all last week, therefore he had a busy day in the OR today. We are hoping & praying we will get more information from him tomorrow. Honestly as of now we aren't talking to really anyone. We are trying our very hardest not to worry ourselves too much about all the details until we speak with Dr. DelNido himself. I know he is the only one that can give us good solid answers.

As of right now Ryker is doing very well. He is intubated, paralyzed & heavily sedated & they plan to keep him that way all night to let him get a good long rest after being in the Cath lab for almost 6 hours. He is such an Amazing baby boy! He amazes Jason & I more & more every single day! Thank you all SO much for your positive thoughts & prayers! It has meant more to Jason & I than you could ever know!

Update

Update from Rachel today 12/3/12 - I have been a little emotional this morning, knowing that today marks the start of a new week....a week that I HOPE with all my heart will be Amazing & that we will get lots of Fantastic news!! As many of you know- At some point this week (exact day & time is still being discussed) Ryker will be going in for his 6th Heart Cath. This cath is not just any old cath.....This cath is going to be a HUGE

 deciding factor as to whether or not my sweet boy is or is not a candidate for the Glenn procedure. We need this to be good so badly I literally have tears rushing down my cheeks as I write this! If Ryker is unable to get his Glenn procedure (which he WILL be able too!!!) We will head down a long hard road of unknowns...If he IS (which he WILL!!!!) He will hopefully be heading towards his 5th open heart surgery (The Glenn) in the very near future. Either way I am absolutely terrified, but at the exact same time I would be ECSTATIC if we could finally get hm to the procedure that we have waited here in the hospital for months for. Please keep my sweet boy in your thoughts & prayers this week more than normal. I am so scared for what this week holds, but so excited to finally be at this crossroads. I pray with all my heart we are able to go down the path of the Glenn & back on the road to recovery quickly so this baby boy can know the joys of being AT HOME with his Family sooner than later :)

Today now marks the 2nd time in Ryker's almost 9 months of life, to ever go outside!!! What a great day!!!

HE LOVED IT!!! I'll be honest...I cried a little :) He was so in awe of it all, It was PRICELESS!! This little boy deserves the world!!!

We want to thank you all from the bottom of our hearts for all your love and support. Ryker and his family could not be getting through these unimaginable circumstances as well as they are without your love, prayers, c

oncern and support. We have had multiple people inquiring about Christmas for the family. The family’s Christmas wish is that they can continue to provide the best care for Ryker and get him home! To do this they continually need help with their living expenses and the high gas expenses they incur driving to and from the hospital (it cost them approximately $60-$70 in gas & tolls each time they switch off). If you would like to give the family a Christmas gift please consider making a tax deductible donation through Ryker's blog,www.miracleryker.blogspot.com (please notate Ryker Warner in notes to seller). If you prefer to purchase a gift for one of the kids their "wish lists" can be found herehttp://www.amazon.com/registry/wishlist/1V48XDYCAIK16/ref=cm_wl_search_1.
Wristbands are now available and you can learn more about how to order yours here http://miracleryker.blogspot.com/p/miracle-ryker-shirts.html
Thank you so much for you love, prayers, care, concern and support.
We wish you all a joyful holiday season. 

~Ryker's Family

WAY TO GO RYKER!!!!

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

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. 

THANK YOU TO THOSE PUTTING THIS TOGETHER!!!

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! 

UPDATE FROM RACHEL 11/6/12
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 :)

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...

http://www.jrwarner2.blogspot.com/2012/02/begining.html

Update

From Rachel posted 10/28/12 -
When Ryker woke up yesterday with the ventilator tube in his nose he was pretty upset & trying to pull it out (understandably so! I would be too) But really considering it all he has been tolerating it pretty well. Then this morning we just got some sad news....We found out that his peripheral culture (a blood culture that comes directly from his vein, not through any line) came back positive for 

infection...:( I am devastated!!! When his WBC & CRP jumped the way they did the other day I was so scared that it was in his blood stream, but I prayed so hard that I was wrong! My poor sweet boy! No wonder why he has been having such a hard time :( Luckily he is intubated so that he can hopefully get some good rest & be able to really recover from this horrible infection! Please pray so hard that the many antibiotics that Ryker is on will fight this infection quickly, so he can soon be back to his sweet smiley self & feeling better!

Update

Update #2 Considering how busy today has been for Ryker, he has handled it all SO well! They got a new line in him so that they were able to pull the old broviac & the entire process even with going to the Cath Lab, his numbers didn't budge, he stayed perfectly stable through all of it!! He is such a tough baby boy!! Now the plan is to let him rest & recover so he can get rid of this horrible infection! Thank you all for your continued prayers!

Update #1 Ryker's intubation was successful, he did such a good job! The problem we have been dealing now is trying to get new IV access. They tried bedside in the CICU for a while, when they decided that the safest route for Ryker was to take him to the Cath Lab to get access. So he is currently in the Cath Lab & so far doing well & is stable. Please pray that he stays this way & they are able to get a good IV line on him so they can pull the infected one.

Please pray for our little buddy and his family - Infection

Post from Rachel 10/26/12
Over the last 24 hours Ryker's infection has suddenly gone from stable & almost gone to severe! His white blood cell count & CRP have shot up higher than they ever have....I am so scared! I just talked to the Attending for a while & he said our only choice right now is to intubate Ryker so he can have the support he needs to get through this infection. Once he is intubated they will pull his Broviac line that is infected & put in a temporary neck line until they are able to get more access. Please-Please pray SO HARD for my sweet baby to get through this & to be able to fight of this horrible infection!!

Ryker Updates

Update from Rachel 10/23/12
My Beautiful Baby boy sleeping peacefully for the first time in over 24 hours!!! It's amazing what an Awesome nurse that knows him very well can do!! Thank you Sonya!!! Both Ryker & I are always so grateful for you!! :)

Update from Rachel 10/22/12

Ryker had a good night! He hasn't spiked another fever in over 12 hrs :) & all his numbers have improved quite a bit! His blood cultures from his peripheral stick have not grown anything back as of now (Thanks be to God!!) & they just send a whole new round of cultures to see where we stand as far as whether or not the broviac line will need to go. I am praying that we will be able to keep it beca...

use they have been unsuccessful in giving him a PICC line numerous times now & so Dr. DelNido had to surgically place this line in order for him to have any line at all....So needless to say he desperately needs it, however I don't want to compromise him at all by keeping it either! As of now everything has kinda been put on a halt just waiting to see what he does in the next 24 hours & they are monitoring him very closely!! Regardless of all this that is going on he has continued to be so incredibly sweet & still smiles at me & his nurses so much! I cannot get over how unbelievable my sweet baby boy is! He is my little hero!!! :)

Update from Rachel 10/21/12

I don't really know where to start...I am exhausted & so emotional, so I hope I get it all. So much has happened in the last few days...
A few days ago Ryker stopped peeing again, my automatic instinct was being absolutely terrified because not peeing is a sign of heart failure, but Thank you God he is producing urine (showing that his cardiac output is fine) but for whatever reason he just isn't...

letting it out on his own, so for now he has a urine catheter to assist him in that department until we figure out why that is happening. I have gotten the urology department involved as well, but any input on this would be muchly appreciated, because nobody seems to really know for sure.
Then as I have been so worried about that, I was smacked in the face with the fact that the peeing problem really wasn't that big of a deal when he suddenly spiked a fever of 39.3!! From there we ran cultures, dosed him up on Tylenol, & ice-packed him to keep him cool & thank goodness- put him straight onto heavy duty antibiotics just to be safe, because within only about 6hrs 3 of his cultures came back positive.....(just to give you all a little back round, throughout our whole 7 months of being here he has spiked MANY fevers & not one of his cultures has ever come back positive, so this has been a total shock for us) Two of the positive culture were from his bran new broviac line (both ports) This is Terrifying!!! & I have been trying my hardest not to get too emotional over it. We don't know yet whether or not the infection has gotten into his blood stream or if it is just in his broviac line, but either way his bran new broviac line will more than likely have to be pulled & somehow we will have to find new access (which is extremely hard for Ryker) So PLEASE, Please, please pray that his blood culture will come back negative so that he doesn't have to be put through SO MUCH more with having a horrible blood infection on top of all else & that he will either be able to keep his broviac (without any added risks for him) or that they will be able to find new (easy) access for my sweet boy!!
So for the last about 24 hours Ryker has been pretty uncomfortable...:( But thank goodness he & I have been able to snuggle lots! Which considering my emotional state right now, dealing with all of this on top of having my whole Family 2,000 miles away from me right now...snuggling is all BOTH Ryker & I need right now, along with maybe a little sleep! :)

Thank you for all your prayers!

10/19/12 Sweet little Ryker got a hair cut.

 

Thank you MONTANA!!!

Ryker and his family have received so much love and support from all over the world throughout their journey. They received a lot of love and support last month from Montana. Two events were put on in the Bitterroot Valley to raise money, awareness and support for Ryker and his family. The first event took place at Super 1 in Stevensville and the second was a benefit dinner in Hamilton, MT. The goal for the two event was to raise $10,000 and I am happy to report we met that goal!!!!!!!

The first event (courtesy of Chanel Lykins, Super 1 Foods - Stevensville and their various vendors) was a raffle, hot dog and ice cream sale. Chanel and Super 1 (managers Rich and Berry) worked so hard to make this event such a success and a success it was. Photos below are from the event at Super1.

The second event was a spaghetti dinner in Hamilton, MT. We continued the raffle from the event at Super 1 and added many more amazing items to the raffle and live auction. All items were donated to benefit Ryker and his family from various individuals and businesses from Missoula to Hamilton (listed below). Also thanks to these individuatls and businesses from Missoula to Hamilton we were able to serve a delicious meal with about 90% of the food & serving wear being donated. We had approximately 150 in attendance at the benefit dinner.

There was a keepsake table set up so those who wanted could draw photos, write notes, write letter and add them to the keepsake box that was to be mailed to Ryker's family. I am happy to report that the boys received their box last week and it made their day. The girl’s received their box Wednesday the 3^rd and Rachel said it brightened their day so much. Rachel said it is unbelievable how much of a positive difference receiving letters, photos, gifts etc. in the mail makes for the kids – it always brightens their day.

A huge thank you to all those who participated in some way towards the events here in the Bitterroot Valley. We are blessed and thankful to be surrounded by such amazing and caring people. It is because of people like you that Ryker is able to have someone that loves him so much by his side every day. It is also because of you that all of his parents, siblings, grandparents, aunts, uncles, cousins, friends, supporters, followers etc can sleep better at night knowing how much good there really is in the world. God is good and continues to bless Ryker and his family.

Thank you to all the businesses and the individuals below for your donations that made this event possible:

Moose Creek, Papa Murphy’s, Fiesta En Jalisco, Bitterroot River Inn, Victor Steakhouse, Flower Happy, Beaver Tail Stitchery, Ten Spoon Winery, Fusion Effects , Fords, Sapphire Moon, Kingdom Kids, Elle Jae Photography, Heather Thomas, Crystal Mousley and Connie Jessop- Bitterroot Bellagio, Udderly Fresh, Bella Boutique, Ezette Zikan, Debbie Babcock, Happy Trails, Wall Graffiti Vinyl Lettering, Linda Olbert , Bitterroot Bit & Spur, Murdochs, Mom and Me, Images by Stephen, Big Sky Toy Room, Chapter One Book Store, Cliff’s Coral, Annette Edwards, Robins Hallmark, Subway, Al’s Cycle, Bitterroot Brewery, Jerry Wessels Les Schwab, Lube Quick, Splash Car Wash, Valley Drug, Fireside Pizza, Bitterroot Drug, Writing with Light Photography, Bitterroot Aquatic Center, Anna & Tom Miller, Shulunds, Amerisource Bergen, Sandy Hanson -The Total Look, Cindy Stewart, Gerri Coon, Buffalo Hat Gallery, Cynthia Bauldauf, Pepsi, Coca-cola, Hamilton Pack, Johnny Carinos, Famous Daves, Buffalo Wild Wings, Perkins, River Rising, Ridgeway Pharmacy – Stevensville, Coffee Cup, Ten Spoon Winery, Hidden Legend Winery, Worden's Market, Party America, Chavez Family (In Memory of Jayden Chavez) Super 1 Foods Stevensville & Hamilton, Health Care Providers, Pasta Montana, Thingz in Balloonz, Safeway, Bitterroot Valley Ice, Terry & Autumn Evanoff, Margie Mason, Hamilton City Hall, Chanel & Matt Lykins, Albertsons, Proctor & Gamble, Twisted Tea, Summit Beverage, Anhauser-Busch, and Red Rooster.

Bray & Addi get to visit Ryker :)

While Ryker was on ECMO, his sisters Braylee & Addisyn were able to go to the hospital & see him considering the fact that at that time we did not know how everything would turn out, needless to say that was a VERY emotional & hard day having the girls see him the way they did. Braylee being the almost 6 going on 13 girl she is, she knows & understands way more than I think we give her credit for & she had a very hard week that week! But thankfully last Saturday they got to see him again for the very first time since that hard day....only this time he was wide awake & extubated!! He was a little out of it because of just getting his regular sedatives, but other than that he just loved to see his sisters & hear their voices again after so long! 

Here are some pics :)

Braylee LOVES her Ryker!!

Addi always just wants to squeeze Ryker to pieces! She loves her baby!

Picture Bray took of Ryker sitting up staring at Mommy :)

Sound asleep after play time with sisters is over :) SWEET BABY BOY!!

Update-10/07/12

Ryker has has a really good week. Got extubated last Wednesday!!! He struggled for a bit after extubation with his respiratory rate, so they did an echo, echo came back normal & since then his respiratory rate has been slowly getting better & better!! He is holding his own so well & has been smiling the entire time! You would NEVER guess that only a month ago this beautiful baby boy was on ECMO. I couldn't be more proud of my tough & absolutely amazing baby boy!!!

Oh & plus- Ryker is 7 months old today!!! Happy 7 month beautiful boy! :)

The night before extubation

Ryker wearing his cool new Patriots Hat!! :)

1st pic after extubation

1st time holding my beautiful boy in almost 5 weeks....Such a great feeling!

Handsome boy doing his thinking pose :)

Loves to hold Mommy's finger when he falls asleep :)

Sweet Baby Boy

Ryker was note feeling so great for a day or two but yesterday Rachel posted the following ~ Little Buddy is doing much better tonight! He is much more alert & seems to feel better than last night. Still has a mild fever (hence the cool rag on his head) But nothing close to as bad as yesterday's fever. :)

Thank you for the support and prayers. Please keep it up for Ryker and his family.

Cath Update

This last Monday September 17th Ryker went to the Cath Lab for the 4th time. He went in for a Cath for three reasons- 1-The Pre-Glenn (to check all the pressures in his heart to see if he is ready for the Glenn Procedure) 2-To do an Ablation on scar tissue in hopes of illuminating his A-Flutter 3-To check on his Pulmonary Veins.

When we first sat down with Dr. Marx post Cath, we knew something was wrong. Our mind were going 100 miles a minute! Dr. Marx went over all the positives first, one big thing being that they felt like the Ablation was very successful & that they have high hopes that his Flutter could be gone. Then he begun talking about the pressures in his heart & the overall function of his heart & that was all very good as well. Then he said "If it weren't for Ryker's Pulmonary Veins he would be in perfect condition to head for his Glenn Procedure....However, Ryker's Pulmonary Vein Stinosis has now moved to his right side as well, making him no longer a Candidate for the Glenn Procedure."

My heart sank in my chest.....What?!? How!?! He has to get get the Glenn...He can't survive without the Glenn....That is what we have been waiting here at the hospital for 6 months for......

Jason & I asked every question possible, but all that could be said for anything was "Dr. DelNido will have to look over all the information & see if it is possible to do a sutureless repair on Ryker & if not he would need to go back to the Cath Lab again soon for some ballooning of his veins. (The Sutureless Repair is a major open heart surgery that is the only known surgical aid for PVS) Here is a link if you would like to know a bit more about it-  http://www.ncbi.nlm.nih.gov/pubmed/21704970 

So needless to say from Monday until tonight Jason & I have been in agony....wondering if this really could be the end....Begging & pleading with God to please show us a way! After all these months of waiting could it really be possible that our baby is not a candidate for the Glenn Procedure & if he truly isn't then what other choices do we have? How could this be happening, after all our sweet baby boy has been through!? What Now???

Then tonight, after 3 emotional days of literally refusing to leaving Ryker's room for fear of missing Dr. DelNido. He finally walked through the door. I wanted SO badly wanted for him to say that it was a misunderstanding & that we could move on with the Glenn...that this wasn't really happening! But in all reality I knew that wasn't going to be the case. It was a long conversation with both Dr. DelNido & Dr. Marx. Here is a summary-

Ryker's PVS has in fact sadly moved to his right side, which like I have mentioned months before- If you know what PVS is you know that having it in any of your Pulmonary Veins is not good, let alone having it in all four of them. But as of now Dr. DelNido does not feel it is to the point that it would be good to do any form of intervention. The tricky thing with PVS is that if it is getting worse you have to treat it & treat it FAST....But on the other hand if it's not going to progress & you do any ballooning or do an unnecessary Sutureless Repair it will actually make the problem a whole lot worse. So from here we will monitor it extremely close & if anything at all comes up they will send him back to the Cath Lab. But if nothing seems to change & he is able to grow & thrive, they will plan on doing another Cath in 6-8 weeks. If it has progressed at all during those 6-8 weeks we will have no choice but to balloon his veins &/or do a Sutureless Repair. If for whatever wonderful reason it doesn't progress in that time frame & looks the same as it does now, Dr. DelNido will do a Glenn Procedure on Ryker. :) Please God let this be the way!

From there he discussed the possibility of Ryker becoming a part of something that is only being done here at Boston called the Gleevec Study. It is a study that is being conducted on infants & children with severe PVS in hopes of finding a cure for this horrible disease soon. It terrifies me beyond words to think of my baby being part of a clinical study, but if it comes down to it being something that could potentially help him fight this off then there is no question in my mind that we will continue to do everything we can for our baby boy.
If you would like to know more about the Gleevec Study here is a link- http://www.childrenshospital.org/clinicalservices/Site683/mainpageS683P5.html

Then he told me that they believe his episode 2 weeks ago that put him into Cardiac Arrest & then onto ECMO could possibly have been something to do with Pulmonary Hypertenion or something close to it. If that is the case we are in the process of taking the right steps to hopefully (praying my hardest) prevent that from ever happening again!

So, by the end of our conversation I was extremely saddened by the fact that my sweet Ryker's heart function IS doing well & DOES have the perfect amount of pressures going through it to be in perfect working order for the Glenn Procedure & his PVS is ruining that all for him! Just hearing the words "He is no longer a Glenn candidate" was horrible! But it is only for now...not forever! He will get to his Glenn & get to come home soon, I know it! At least there IS HOPE!!!! From here all we can do is stay positive & love this sweet baby with our whole hearts!!

He is the most AMAZING BABY BOY & he will continue to Astonish us all :) Thank you all for your continued love & support!

Update-9/19/2012

I know I have always said "No news is good news" This time I wish so bad that was the truth..... We didn't receive the best news after Ryker's Cath on Monday & as of now we are still unable to process things completely until Dr. DelNido is able to sit down with us to go over a plan. For now we are trying our very best to stay as positive as we can until we have the information that we need. Thank you all for thinking about & loving our little guy so much!

Updates from last few days.

All updates below via Rachel on Ryker's facebook page.

9/15/12 Today marks exactly 6 months since Ryker was admitted to Boston Children's Hospital at only 8 days old....
After 4 open chest heart surgeries (2 of which open heart), 1 intestinal surgery, 3 caths, 3 days of ECMO, Numerous surgical/sterile procedures, 6 Cardioversions, 8 CICU Rooms, 6 Recovery Floor Rooms, Hundreds of Echoes, EKG'S, X-Rays, IV's, & Blood Draws & countless consent forms signed........

Our Beautiful baby boy is still here & tougher than ever!! He has learned loud & clear how to get the nurse's attention (he does this SO well & he loves every minute of it:) & we all have learned so much more than I could even begin to describe!!!
That day (March 15th) was one of the many top stressful days of my life, yet such a great day to finally get our baby boy clear across the country & into the hospital that was going to truly help him! I LOVE BCH & all the staff & we are SO grateful for every one of them! They are all like Family!! ♥ One day it will no longer be our "Home" & it will be our favorite visiting place to come & show off our cute thriving Ryker too!! Can't wait for that day!! :)

9/15/12 Ryker had a pretty good night. He seems to be recovering well. His Temp is gone!! :) & all his numbers look really good! His labs are all good except that his white blood cell count went up a little, (that one always makes me so nervous!) so we are having the picc team get involved to see if he may need a new picc line or if we can remove some of his other lines that could have any chance of infection. But none of his blood cultures have come back positive so far....Thank goodness! He is still paralyzed & sedated to let him get some good rest & probably will stay that way for most of today. Thank you so much for all your positive thoughts & prayers! We know they help so much!

9/14/12 Sweet little Buddy is so tough!! This is right after he got cardioverted around 6pm today. He didn't even cry....dont worry they gave him good sedation for it. Absolutely breaks my heart!!

9/14/12 So...Ryker has had another rough 24 hours :( He was dealing with a lot of withdrawals & then he spiked a fever late last night. From there they did the normal- start antibiotics, run cultures, & around the clock tylenol, but even after all that the fever never went away it just went down a little. Then today at about 3pm he spiked another fever of 39.8 (approx 103.6 F) & everyone was pretty worried! So while they were in the process of changing some things I mentioned that while looking at his monitor it looked like he may be in flutter (it is EXTREMELY HARD to tell if he is in flutter because of his pacemaker settings) So we got EP (The Electro Physiologists) in here & sure enough he was in flutter. So my poor baby boy had to get cardioverted (using the defibrillator paddles on him) again to get him out of it....I HATE SO BAD that this is becoming a semi-normal thing for him!!! It breaks my heart! :( :( & now He is stable & looks much better! His fever was still a little high so they have decided to give him a night of full rest after him having two rough days, so they have put him onto a cooling pad, paralyzed & sedated him. Now we are praying for a very quiet & un-eventful night!

9/13/12 Sweet little Ryker's day today was a little rougher than we would like...:( We have had to wean him down on his Morphine & Versaid drips (that were started while he was on ECMO) so that he can get closer to extubation & he is now struggling with symptoms of withdrawal..:( My poor baby is dealing with way too much! Please send him positive thoughts & prayers that he might be able to feel more happy, rest comfortably & have a better night tonight!

Update

9/9/12 Ryker has had a very good day!! He looks Amazing & is doing Amazing, ESPECIALLY when you consider all that he has been through just this week!! He has had many of his favorite Nurses & Doctors stop by to see him after knowing how his week went & they are shocked to see how great he looks & many are very surprised to find out he is- "Already off ECMO" :) He is such a tough baby boy! I'm such a lucky Mommy! :) ~ Rachel

9/8/12Tonight I lay my head by my Miracle Baby's side, watch him breath, touch his perfectly pink skin & just soak him all in. But, especially on this night I am focused not only on his breathing, but I watch & feel his beautiful heart beating so perfectly through his chest. Seeing & feeling my baby's heart beat after so clearly seeing his chest still for days is the best feeling in the world. It is an indescribable beauty! Ryker you AMAZE me! I love you with all my heart! ♥ ~ Rachel

*** Friends and family located near Hamilton, MT please purchase your tickets to the benefit dinner for Ryker. THANK YOU :)

3 Days of ECMO

Many times since November 3rd (the day we found out about Ryker's condition at 20 weeks gestation) I have sat by my kids beds watching them sleep. While I do this I not only analyze every little detail about my beautiful children & how blessed I am to have them, but I watch their every breath in...every breath out & place my hand over their hearts to feel their tiny hearts beating in their chests. In the beginning I would frequently find myself becoming somewhat disappointed with myself for being so naive about the reality of life, prior to Ryker's diagnosis. Thinking, as I feel my two beautiful daughter's hearts beating "I never once had the thought cross my mind if your heart was working properly or if all your organs were in the correct positions, I just always assumed everything was perfect & took advantage of knowing that" Sometimes I would get too caught up in it, I had to stop myself & just be grateful that God was showing me another way now & that I was never going to be that naive again. Just during the months of pregnancy this experience changed my life forever, coming to the true reality of NEVER taking advantage of the amazing things that are right in front of you....the things you have TODAY!! Then- I gave birth to my Miracle Baby, Ryker.... This Absolutely Beautiful & Perfect Baby Boy! Since that day I have truly known the power of love & the impact that love has in every person's life. I have done everything in my power to not EVER take advantage of another second with any of my children & to truly appreciate the positives in every circumstance. And up to this point I can honestly say I did.

Then on Tuesday September 4th my beautiful baby boy's heart stopped beating.....By far thee hardest, most traumatic moment of my entire life! Thanks be to God, Ryker was within the walls of this wonderful Boston Children’s Hospital & was able to be placed onto ECMO (The highest possible form of life support) that then saved his life! While on ECMO I would lay by Ryker's side & watch his tummy as it went in & out to the 10 breaths per minute that the ventilator was allowed to take for him. But as I watched his chest, searching for a rhythm, it did not move...It was Terrifying! When a heart is unable to beat on it’s own, the ECMO circuit does the work for the heart, but the ECMO circuit “flows” blood through the heart rather than “pumping” blood through the heart. So during the time that Ryker’s heart wasn’t working properly on it’s own, his heart didn’t beat....It was beyond all words...Terrifying! It ripped me apart seeing a still chest on my innocent baby boy. I would try to feel his pulses on all four extremities & there was none. Then at his neck...none. For 3 LONG days, I was so scared! I knew full well that my baby boy was as close to death as anyone could ever be & without that wonderful circuit, my sweet, innocent baby would no longer be with us!  He was literally hanging by a thread & there was nothing that I could do about it. For 3 days I never left his side, unless I was letting our wonderful Family members see him, who came out during this extremely hard time. I sat by his side & prayed...I pleaded with God to let me keep him. I lived on coffee, juice & water, because they were the only things I could take in his room. Many times I would fall asleep with my head by his body because I was so scared to leave him.

On September 7th Jason & I were able to breathe once again, as my brave baby boy was taken off of ECMO. I had always known that I had such an amazing & brave baby, but to know full well how many Doctors didn’t know if he would ever come off of ECMO & here he was, once again beating his perfect tiny heart all on his own....I couldn’t be more proud of my courageous boy! 

Thank you God for always watching over my Sweet Little Miracle & Thank you Boston Children’s Hospital for saving my Beautiful Baby Boy’s life!!  

Update - Off Ecmo

As of exactly 5:02pm (Boston Time) RYKER IS OFF ECMO!!!! He was on ECMO for exactly 3 days & 35 minutes.....That is really very good & a considerably short amount of time considering the circumstances! I couldn't be more proud of my baby boy!! He is SUCH a tough little fighter & he is doing Amazing, just getting some much needed rest :) The plan is to leave him alone for a good chunk of time & let him fully recover, then from there they will go into a thorough investigation of what happened & how to prevent it from happening again.

I want everyone to know that even though I may not respond to all the messages & texts, I get every single one of them & they all mean the world to me! Sometimes just reading all the messages/comments/texts of all your love & support while I sit by Ryker's side in silence trying to my absolute hardest to cope, is EXACTLY what I need to mentally make it through. Thank you all!! ~ Rachel

Update

Needless to say- Yesterday was by far the hardest day of mine & Jason's lives & I pray to God SO HARD that it remains the hardest!! Ryker is handling ECMO as good as to be expected. The plan for today is to go over every organ & every inch of his body & try to understand the question that is boggling everyone's minds...What Happened!? Along with those tests they plan on taking a good look at his brain function to be sure nothing was harmed during CPR. 

I know there are so many praying for our incredible baby boy. It is so comforting to truly feel all your love & prayers, thank you all! Please continue to pray for & hold Ryker close to your hearts! He needs all the love in the world right now & deserves it more than anyone I have ever met. ~ Rachel

Please pray for Ryker

UPDATE #2 About 2 hours ago my Beautiful baby boy was put onto Ecmo after having 11 minutes of CPR. Please lift our sweet boy in prayer, love & lots of positive energy. He needs all our prayers now more than ever before! Please Lord, hold my baby close & bless the hands & minds of the many taking care of him.

UPDATE #1This is my Beautiful baby boy just last night, smiling at Mommy & Happy as could be! He is now in back in CICU, intubated, sedated, paralyzed & on lots of support. Please-please pray SO hard for my sweet boy!

Post from Rachel - Please pray for their entire family! 

Miracle Ryker events in the Bitterroot Valley!!!

Super 1 Foods  -Stevensville, MT

Miracle Ryker Benefit!

Thursday, September 6^th, 2012 from 9am to 5pm

Ice cream, Hot dogs, Pop!

Raffle Tickets $1.00

Enter to win a mountain bike, kids 4-wheeler ($500 value), tabletop propane camp stove, stand up Coleman camp stove, float tube and more! (Some items need to be 21 to enter !)

 

 

Also join us for the Miracle Ryker Benefit Dinner. We have some great raffle items you do not want to miss out on. Please pre-purchase your tickets.

 

As you may know if you follow Ryker on facebook his parents (Jason & Rachel) take turns spending days at a time with Ryker at the hospital and their other kids at their apartment about a hour and a half away. Because their kids need them both at this time it is impossible for Jason or Rachel to currently hold a job and it will continue to be that way until after Ryker is recovered from his next surgery, stable and at home. It is because of all the amazing people following Ryker's story that we have been able to reach our first goal of paying off the jet loan. Our current goal is to raise enouch money to sustain their living expenses for as long as Ryker needs our help. 

  Sweet Ryker sitting up today!