Our Miracle - Ryker's Journey with Heterotaxy

Our Miracle - Ryker's Journey with Heterotaxy

Monday, December 31, 2012

Shannon visits Boston

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

On December 21st 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!

Sunday, December 30, 2012

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!!

Saturday, December 22, 2012

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 :)

Wednesday, December 12, 2012

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!! 

Monday, December 10, 2012

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!!!

Saturday, December 8, 2012


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

Thursday, December 6, 2012

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!

Wednesday, December 5, 2012

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!

Monday, December 3, 2012


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