Family photo shoot - courtesy of Nikki Cole

I have had multiple people ask how we get items or services donated for Jason and Rachel's family. I tell them we just call and ask people. People are amazing and more than willing to help other's especially in time of need and heartache. Sometimes is takes many calls to get the results you are looking for but in the end it is always worth it. A family friend did just that one day. Kayla does not personally know Jason and Rachel well but knows their story well and knows (and can see from facebook) how much Rachel loves photos. One day she just started calling and emailing photographers in the Boston area asking them if they would be willing to donate a session for the family. She got in touch with one amazing and more than generous and willing photographer Nikki Cole. Nikki was more than fantastic, workable, compassionate and willing to do the session for their family. She made an extra effort multiple times to make this photo shoot happen. 

It is amazing to watch God work for this family. Although their journey has not been easy God is definitely watching over them and all of us as we try to help them and comfort them. These photos are a priceless gift!!! To view the blog post and photos please visit Nikki's blog. http://www.nikkiphotos.com/ryker-photos-of-a-brave-and-beautiful-baby-at-childrens-hospital/

Re-cap and photos from the last few days.

7/23/12
Rachel's post today : Finally holding my beautiful boy after thinking I was going to loose him only a week ago. So at peace right now & SO grateful for all I have!

7/22/12 Photo - Ryker awake and talking away. Such a handsome little boy! 

Rachel's post 7/21/12 
The last 24 hours with my sweet little Ryker has been breath taking!! Everyone here in the CICU is astounded by his improvements! All the staff that was here last weekend for the Saturday night incident came on shift last night & were shocked to not only see that Ryker is still here in this world but to see that he is extubated & doing amazing! The head Attending of the CICU came into his room & said "This little man has some spirit! To come to today & not only be here but to be thriving in all he has been through, he is an astonishing little boy that I believe will continue to astonish us all!" He is such a sweet Doctor & sure loves his Ryker! Way to make a Mommy proud!! Then to top it off I woke up at 5am to Ryker's night nurse playing peek-a-boo with him & him just smiling away :) I couldn't ask for a sweeter more resilient baby boy! Thank you God from the very bottom of my heart ~ I have SO MUCH to be grateful for!!!

Hard Update

This is Rachel... I have debated for sometime now whether or not I have been ready to give some sort of an update. As many of you know, the past week has been extremely hard for Ryker & our family. This has been by far thee hardest time in the entire 4 months of us being here. I have to apologize ahead of time for being brief in so many areas, but as of now I don't know how ready I am to emotionally let much out.

Last Friday Ryker went back to the cath lab & sadly we didn’t get the results that we would have loved to have gotten. We discovered that Ryker’s Pulmonary Vein Stinosis has not only gotten worse but his upper left pulmonary vein is completely occluded, his lower left had to have a stent put in to keep it open & his right upper pulmonary vein may be in danger of PVS as well. For any of you who know about PVS you know that this news is horrifying! We are praying with all that we have that his right pulmonary veins will stay open & that his stent will last well!!

After the cath he extubated very easily & had a great night, but the following day he was very irritable. By the time it was around 8pm on Saturday he was exhausted & this is when things begun to tumble down hill rapidly. Before I knew it Ryker had gone from cuddled up nicely in my arms to ghost white & lifeless. Within minutes half the CICU staff was in his room doing emergency sterile procedures while I watched through the window in tears after the CICU attending had gone over the fact with me that he may not make it. After all he has been through I have never had to have that conversation before. I wanted more than ever before to wake up from my nightmare, but at that moment it was my hard reality....the feelings I felt that night are unexplainable, feelings I wish I could pretend were never there.

The next 24 hours Ryker was in critical condition. He was put into a medically induced coma to keep him as stable as possible. Nobody knew if he would make it & many thought he would end up on ECMO (life support) by Sunday night. We had numerous Doctors & nurses sit down with us & to let us know that come Monday we would be forced to make extremely hard decisions, decisions that no parent should ever have to make. At that time I could only imagine what those decisions would be, but I didn’t want to hear it. I just feared Monday like like you couldn’t imagine.

By Monday morning things begun to change & change quickly. Ryker’s numbers & labs begun to improve & he was looking better & better by the hour. I know in my heart it was the outpouring of love & prayers that he was receiving from all over the world! Everyone here at the hospital was amazed at how rapidly he was improving.

Throughout the week we have had many meetings with many Doctors, but one particularly stands out. The moment that Dr. DelNido came into his room on Monday morning, when we felt all hope was lost & said “Yes, Ryker has had a major setback & an extremely hard weekend, but I feel he has turned a corner & we will proceed down the path we were on & get him as healthy as possible so he can get to his next procedure" I have always known we were in the right place for our baby, but at that moment I realized how much I really was. Although everyone else had given up on Ryker, Dr. DelNido hadn’t! I am so grateful for this man!!

As of today, we have started Ryker on a new heart medication in hopes of improving his heart function. They will do a thorough echo next week to see if it has helped & if it hasn’t they will be forced to operate sooner than they would like to. The operation that they will do is the Glenn along with a few other things that make the surgery a lot bigger & more serious & would like him as big as possible for it. But if this medication doesn’t help they will have no other choice.

So from here all we can do is pray! Pray that his heart function improves dramatically & he can grow bigger for his next operation, Pray that his PVS improves & that it doesn’t spread to the right side, & especially pray that this sweet baby boy has strength for all that he has & will endure. He deserves so much more than this hospital life & I will do all I can do to get him there!!

Update

Post from Rachel

Thank you everyone for your encouraging messages, positive thoughts & prayers during this extremely hard time, it has all helped so much! Please continue to pray for our sweet baby as we gather information & options as to where we go from here. We did receive a small glimmer of hope this morning, I will post about it as soon as we know more.

 

Post from Jason
Then walks in dr del nido there is no decision to be made other than to carry on with helping ryker get better there was a major setback but ryker is still fighting and so is rach dr del nido and I we will fight


***Last day to order your Miracle Ryker t-shirts. Please click link to t-shirts top right hand corner of blog. 

Prayer's needed for Ryker & his family

Please pray for Ryker and his family. Ryker is having a rough time and we would appreciate all prayers and positive energy. Jason and Rachel have been told they will have to make some hard decisions in the next few days so they need as much support and love as possible.  Thank you for your prayers, love and support.  

Miracle Ryker Shirts

We now have Miracle Ryker shirts available. Please click the link "Miracle Ryker t-shirts" under ADDITIONAL INFORMATION on the right side of this blog for ordering information. 
We will submit the first order by Monday July 16th so that those who want to wear them to the Brainwave event can.

Update & Ryker on the News

Ryker got to enjoy being outside for the first time yesterday for family photos.  He is headed back into the cath lab on friday and needs prayer's. More detailed posts from Rachel below. 
Their was a news segment featuring Children and the Earth, Inc. and includes our little Miracle Ryker.
http://www.kutv.com/news/features/pay-it-forward/stories/vid_35.shtml.


Facebook post from Rachel in the evening 7/11/12
The plan for Ryker tomorrow was to do a thorough sedated echo & a lung scan (a lung scan is when they put dye into his IV & watch it thru an "xray like" machine so they can see the amount of blood flow that gets to his lungs) so Ryker's Doctors could see how his PVS (pulmonary vein stinosis) was doing. This in itself made me so nervous! As much as I would like to know how it is doing....I also don't! I am terrified! I also knew that based on the info they receive from this echo could mean a cath in the next few days. & again...I was TERRIFIED, enough to where I have been putting off this post! But then the nurse just now came into me & said- "The plan for tomorrow has changed, we are still doing the lung scan in the morning, but we are holding off on the echo until after a cath that Dr. Marx has ordered to do on Friday"..........Ugh!!! I now have a massive pit in my stomach! This means that on Friday (my sweet Addisyn's birthday-just to top it off! The day our family had planned on spending at the aquarium for Addisyn's 3rd birthday) Ryker will be intubated AGAIN, sedated & sent back to the cath lab for what I pray to God is good results! :( Please-please pray for my sweet baby boy, that his pulmonary vein stinosis hasn't gotten worse & that there is no other hidden surprises waiting. That we will get great results & he will recover quickly so he can be back to his happy self & going outside again soon!!


Facebook post from Rachel in the AM 7/11/12.......
Today Ryker got to go outside for his very first time EVER!!! HE LOVED IT!! :) He was looking around like it was the most amazing things he had ever seen (I'm sure it actually was) He loved the trees above him & the little breeze of fresh air! I was SO happy for him to have that time in the sunshine! We were able to convince the Doctors to let him go outside cause we wanted to do some family pictures while we are all here together, & it was PERFECT!! I will post them as soon as I get them. Thank you so much Nikki Cole photography for donating your time time & wonderful skills on us today! Can't wait to see them all!
Oh- & also the whole time we were outside Ryker was off the oxygen & when we brought him back to his room & plugged him into his pulse ox monitor he was 82 for his sats!!! Ya buddy! :)
Jason posted the following - One of the best days ever for me as the dad of such an amazing family

Update

Rachel's post today 7/7/12 
Today my sweet little Ryker is 4 months old!!! I can't believe it's already been that long, yet I can't imagine life without him!! He has been such a HUGE blessing in more ways than I could have ever imagined! I love this boy more than words could ever express!!! This morning little buddy weighed in at 3.55kg equaling 7lbs 8oz which is exactly 1lb bigger than his birth weight & the biggest he has ever been!! :) We're only going up from here! :)

Rachel's post from 7/6/12 
Ryker has had a little bit of a bumpy week, but once the Doctors found out the pain he was having was coming from a double ear infection (ya know, the normal baby stuff that we don't think of with our cardiac kids) they got him on antibiotics & he is doing great now!! The Neurological Development Specialist came in to see him today & after playing with him for a bit she said "Ryker is way above where I would have expected a baby that has spent his whole life in the hospital would be right now! He is up to par on all his neurological development, if not a little ahead!" YAY RYKER!!! She also said he is one of the more alert & attentive babies she has seen in his circumstances especially considering that he still has sedatives on board! She was VERY impressed with my sweet boy! :) He is still doing well with weight gain especially considering the little setback with the ear infection this week! Now on to great weekend!! :)

Update - Move - Boy's visit

Ryker has been doing great the last few days and when Ryker is doing great everyone else is happy :). The family got moved into their new apartment and the boys are on their way to visit!!! Please continue to pray for Ryker and that he will continue to do fantastic and that his family will be able to spend a lot of quality time ALL together while the boys are in town.

7/1/12 
Ryker had a great night!!! So often in the morning he wakes up screaming, which I believe has to do with the fear of all he has been through. :( But this morning I woke up to him wide awake just looking around his room & as he looked at me he gave me a little half smile :) Best way to start my day!!! Then to top it off- On Friday the nutrition team had said that if he didn't start gaining a minimum of 20grams per day by Monday they would have to have an "intervention" which didn't sound good. But at his weigh in yesterday morning he had gained 30grams & this morning he gained 50grams!!!! Talk about AMAZING morning!! HaPpY~DaNcE HaPpY~DaNcE!!! :)

7/2/12 

And.....The weigh in for this morning was 3.46kg this is +60grams from yesterday!!!!! YAHOO!! :) I couldn't be happier....okay maybe if Dr. DelNido came in & said Ryker's heart is perfect & there is no more surgeries needed you can go home now, then maybe I could be happier- BUT that's not going to happen, so I am going to run with this one! :D No Intervention today & I cannot wait to see the look on the nutrition teams faces after they see he gained 140grams in one weekend, when all they were expecting was 60! BTW- 3.46kg = 7lbs 6oz This is the biggest he has ever been! :) Yay Ryker!!!

They have moved into their new apartment and have received a warm and inviting welcome from their neighbors. We (Jason and Rachel's family) are so thankful and happy to know they are surrounded by a great environment and great people. They have had neighbors stop by to bring food, hook up their TV and other miscellaneous things that have helped them settle into their new home. Jason and Rachel made their decision to rent this specific apartment based on a 5-10 minute visit while not being in the best mind set and had been wondering if they made the right choice because of the distance from the hospital.  Once they walked in the front door again a weight had been lifted off their shoulders and they felt comfort in their decision. Thank you to Danny Miller for helping with the move and making it possible for them to get furniture for their apartment. Thank you to Sleepy's - The Mattress Professionals for donation the mattress set you see below. The girls were so excited to get their new mattress - they called me and were telling me how awesome their mattress was. :)

THE BOY'S ARE ON THEIR WAY TO BOSTON!!!! If you have not noticed yet Jason and Rachel would do anything for any one of their kids and their family is most important to them. It has been so hard for them to be away from their boys as much as they have but Jason, Rachel, Trett, Jadd, Addi and Bray have all been amazingly strong throughout this whole process. I am so happy to report that today Trett and Jadd are on their way to Boston, Ryker is doing well and they all get to be together in his room for the first time in months. Jason's status update yesterday.....
Tomorrow night is a long awaited time for us I can hardly wait in 24 hrs I will have my family all together in the same room for the first time in 4 months I have never been so excited.

***We want to make it happen that the family can go to Six Flags New England while the boys are visiting so if anyone has any connections on how we can get them discounted tickets please leave a comment or email tisha_weber@yahoo.com. THANK YOU