Update 08/26/12

Ryker has had an incredible couple weeks!!!

On Friday August 17th Ryker got extubated & he did amazing!!! Best he has ever done with extubation (he is becoming a Pro!) Right before extubation they did a echo (they have been doing them weekly since his last cath) & everything looked the same if not "a hair better" than the last echo. So that was great news! After extubation they put him onto something called "Bubbly CPAP" to aid in his breathing, he was on that until the following Tuesday when they moved him to a regular nasal cannula on 2 liters of oxygen, where he still remains right now & is doing great & satting in the high 70's to low 80's (right where they want him pre-glenn)

I have (& everyone else in the hospital that knows him well) been SO happy with how well Ryker is doing since extubation! His color looks great (nice & pink), his numbers all look perfect & his eyes are just glowing! His favorite Nurses & Doctors are continually stopping by just to see him because they have heard from others how well he looks:) I feel like I have my sweet happy Ryker back FINALLY!!! Except that he is a lot bigger!!! :)

Today Ryker weighed in at a whopping 5.088KG which is 11 lbs. 2oz  I am SO excited about this!!! Dr. DelNido would like Ryker to be at least 6KG for his bidirectional glenn procedure so this is just one step closer to that! I am so so proud of him! They also started his feeds back up again through his cool new G-Tube :) I love this new thing (although it is a new incision sight & foreign object in his body) it is so much better for him so he doesn't have to have 4 tubes down his nose all at once & try to breathe all at the same time. They are taking his feeds extremely slow so he is only on 6ml per hour of continuous breast milk & he is doing great with it!

The only concern I have at all is- Because Ryker was intubated orally the last two times he has no interest whatsoever for his binky or bottle :( The two things that used to be his absolute best friends! I cannot say that I blame him, if I had something shoved down my throat for almost a month that I continually gagged on, I too would not want anything in my mouth either!! But needless to say this breaks my heart & worries me at the same time. They at first were saying that he has something called "oral inversion" which basically means that he wants nothing to do with anything going into his mouth & gets extremely upset if you try, but after the feeding team came yesterday they said he doesn't have a full blown oral inversion because he doesn't get mad about things going in like some kids, but he doesn't love it like he used to, so it will just take a lot of time & patience to slowly get him back to bottle feeding again. So he will be back at it soon! :)

Here are a few pics of the last few weeks-

 The night before Ryker got extubated. He was a little warm so they were cooling him off.

Right after extubation.

 Braylee filled out Ryker's "about me" form.

  Addi piled Ryker up with his animals.

 Addi watching a movie with Ryker.

 Addi is such a good big sister.

 Smiley boy having "guy time" with Daddy.

 Ryker loves his Braylee!

 Braylee making funny faces at Ryker.

 My beautiful boy!!

 So happy!

 Grandma Caron came to visit :)

 Sweet sleeping baby :)

Thank you for your support!

Thank you to you (all of Ryker's supporters) for making it possible for him and his family to be in Boston where he is getting the medical care he needs to survive and one day thrive.  Because you share/shared Ryker's story, donate/donated, pray/prayed and support/supported their family in one or multiple ways they are able to survive. Today they are also very thankful to you for the fact that they are able to make the final jet payment to pay off the $28,000 it cost to get Ryker to Boston.  This is a huge relief for them and would not have been possible without all of you. 

The first photo below is when they were departing Salt Lake City and the second is when they arrived safe and sound in Boston back in March. 

 

Six Flags New England

Throughout Ryker's journey we have learned many things but one of the things that continues to amaze us all is how generous and amazing many people are. Terry, one of Ryker's awesome supporters was able to get ahold of Stephanie from Six Flags New England. Stephanie was able to get Six Flags to generously donate tickets for Jason and Rachel's family to visit the amusement park.
The boys and Jason went to the park in July and had a blast all day. Jason posted the photo of them below playing basketball with the caption "They both won basketballs took me back to my younger days" and "having a blast with the boys". The three of them were able to forget about their stress and worries for part of a day.

 Jadd hanging out with the Magician

Trett & Jadd on the roller coaster. :) 

The girls, Jason and Rachel were all able to attend the park together a little over a week ago. Rachel posted the following caption "Just got home from Six Flags with my Beautiful girls & Amazing Husband. Such a fun day & really good way to get all our minds off things for a bit! Grandma & nurse say little Ryker has had a good day too! :)" 
Jason posted "My daughter looks at us tonight and says this is the best day ever."
Thank you Terry, Stephanie and Six Flags for helping the Warner's have their mind's on FUN for hours:)

Update

8/17/12 Guess who just weighed in at 4.76 KG.....My Absolutely Amazing baby boy! Can I just tell you all how happy this makes us!?!? This means he is 10lbs 4oz! YAY!! HaPpY DaNcE~HaPpY DaNcE!!! ~ Rachel

8/20/12 I have been at the hospital with ryker and have to give the update the last 3 nights I have been blown away by ryker he has not cried once all day or night out of pain and has been the most happy and comfortable I have ever seen him period his eyes are telling me a completely different story hard to explain but I can see so much through them all drs and nurses that come to see him have all told me the same thing for 2 days straight I am almost in shock and loss for words but keep going ryker ~ Jason

Ryker's journey video

Here is a video all about Ryker's story up to the day we did our Family pictures on July 11th. I have been working this video for over a month now & I am SO excited to finally get to share it with everyone!

EnJoY! :) 

 

Busy week for Ryker

The last week has been an extremely eventful & sad week for my sweet little Ryker! He has been through so much!

Starting Monday we found out that he had been in & out of flutter for days, which causes him a lot of pain & stress, along with hypo-tension & low O2 saturations. So needless to say this took a tole on my sweet baby's body.

Then Tuesday while doing a sedated echo they found that he had an efusion (a pocket of fluid) under his left lung, so from there they had to heavily sedate, paralyze & intubate him to be able to insert a cest tube to drain the fluid, this procedure went very well & has drained quite a bit of fluid. They have tested the fluid & still have no reason as to why the fluid was there, thank goodness it is not cylis (fatty fluid caused by the body rejecting the intake of fats in the digestion) they think it may have something to do with him being in flutter so much over the last few days.

So, from there while he was already intubated the Doctors decided to do a CT Scan on his abdomen to get a closer look at his intestines one last time to be absolutely sure that he didn't have any problems that needed fixing before they really tried feeding him again. They found what they felt was something called "Intermitten Volvulous" of the GI Tract, which basically means that his intestines will randomly without any warning turn on themselves & cause him extreme pain. So needless to say we met with Dr. Smithers (The General Surgeon that has followed Ryker for awhile) once again about possibly doing a procedure on his tummy.

On Wednesday- Dr. Smither's decided he needed another "Upper GI" test done done to help him to make a final decision on what Ryker needs. Then with the help of Dr. DelNido, Dr. Marx, Dr. Keir (One of Ryker's ICU Attendings), General Surgery, Jason & I we came to a decision of it being best to put Ryker back into the Operating Room to make sure any belly problems he was having are taken care of.

Thursday at noon they came & took Ryker to go back to the Operating Room. I was sick...the anxiety & tears hit me so hard! Although I knew that intestinal surgery couldn't compare to any of the 4 other procedures he has already had done, I just hated the idea of him going back there AGAIN! Within an hour & a half the Liazon nurse (the nurse that is in charge of keeping the parents updated during surgery) called and asked that Jason & I hurry back to the hospital (We had just gone across the street to get some lunch) So we rushed back & for reasons that are still unknown Ryker was not staying stable in the O.R his O2 sats & blood pressure had been dropping & he spiked a fever. So needless to say they were unable to operate. At this time they kept him completely paralyzed so they were able to get an arterial line placed to hopefully better prepare him for surgery tomorrow.

On Friday morning Ryker was doing great, so they felt comfortable enough to take him back to the O.R When they came to get him I was greeted by an Anesthesiologist named Al, apparently he is one of the top Cardiac Anesthesiologist in the hospital & Dr. DelNido himself requested that not only Al be the one that takes Ryker down for his surgery, but that he stays with Ryker & monitors him for the entire operation. I love to hear how much Dr. DelNido cares about my baby boy!

The procedure only took a little over two hours, then we met with Dr. Smithers. He said that surprisingly enough Ryker's intestines were malrotated but the malrotation that Ryker has works for him & his body & needs no cutting or adjusting. He has no intermittent volvulous like they had thought & no risk of having it happen either. All Ryker's intestines are held up & supported by the correct muscles & he has no problem there. However they did do a biopsy of his colon to check for any motility issues he might be having, which we haven't heard back about yet. They removed Ryker's appendix & placed a G-Tube, but they couldn't place a regular G-Tube because they found that Ryker has an extremely small stomach (& I mean small!) They couldn't even put a small balloon on the inside to support the tube because they were worried if they did it would take up the majority of his stomach. So my thoughts are that his itty-bitty stomach could be the source for some of his pain & intolerance for feeds.

When we came back up to see him he looked great!! By far better than he has ever looked after any of his 5 surgeries, this operation obviously wasn't cardiac surgery like the others, but still a very serious operation! I am so proud of my tough baby boy!

8/8/2012- My beautiful boy sleeping peacefully before another big surgery day tomorrow....I sit here at almost 3am just watching him breathe & can't help but become overwhelmed with emotions over how unbelievably grateful I am for all I have!!

8/11/2012- My beautiful boy with no tubes or tape on his face!! :) This is very temporary, but I had to share because I love it so much! First time since he was only 2 weeks old that I get to see his whole face. They are just changing the tape for his ventilator tube before they wake him up from his paralytic. Beautiful boy!!!

Update....

Update from Rachel....Only about an hour and a half after they took Ryker back Jason and I were called to hurry back to the hospital, for unknown reasons. Both his blood pressure and his 02 saturations began to drop and he began to fever. So right now they have brought Ryker back to the CICU where we are waiting for answers

Update...Surgery tomorrow

*RYKER UPDATE*
As you all know Ryker has had numerous problems with belly pain in the past. Every test they have ever given him on his GI tract has come back negative for any malrotation or blockages & so we have always felt so blessed to have our baby be one of the few Heterotaxy babies without malrotation. Ryker had a CT Scan of his belly last night. That CT Scan came back a little suspicious &

so they chose to take a closer look this morning. What we have found is that Ryker has something called Intermittent Volvulous of his GI Tract, meaning that his digestive tract will randomly, for no reason at all turn on itself causing a blockage & putting my sweet baby extreme tummy pain. So in other words he does in fact have Malrotation :( As hard as this is for us to swallow, it is good to finally have an answer to so many questions about his tummy pain that went unanswered from the past & it makes perfect sense as to why he can eat perfectly for weeks & then suddenly he is screaming in horrible pain. This is extremely hard for me to put this all into words...But Ryker is scheduled for a Ladds Procedure at noon tomorrow. This is a surgery on his GI Tract to hopefully correct this problem & place a G-Tube (a more permanent form of a feeding tube) so that Ryker can be back to eating again soon. So- Please, please pray for our beautiful boy as he goes back the Operating Room for the 5th time tomorrow

Sweet Ryker is having a rough time

Post from Rachel ~ Please pray for my sweet baby! He has had a really hard couple of days! We just found out he has been in & out of flutter for days now & now that they have pulled him out of flutter we are praying he won't go back into it. They are also doing an echo right now to check on his heart function & his PVS, then possibly following that with an abdomen CT scan.

Update+Pics-8/1/12

Only a little over 2 weeks after our July 14th VERY SCARY night, Ryker is doing really good & impressing everyone with his strength!  After all he went through everyone here in the CICU wondered weather or not he would pull out of it & not only has he pulled out of it he has people regularly coming to his room just to get a look at how well he really is doing. He is astounding everyone! :) Our two absolute FAVORITE nurses Sonya & Kristen have decided to take month long vacations at the same time & wont be back till the beginning of September :( So we are going to make sure that Ryker still gets the best care possible during this hard month without them (happy for them, but sad for us) Can't wait for them both to be back!

He is still NPO (not eating) so he is only getting nutrition through his PICC line but they have upped it as much as they can with lipids (IV fats) & all so now they are calling it IV rocket fuel :) Ryker weighed in today at 4.08KG!!!!!! I can't even begin to tell you how happy this makes me! This means he is almost 9lbs!!! YAHOO BABY BOY!!! One more pound to go & he will be in the "safe zone" for the Glenn (his next surgery) Because his Glenn is now going to have added procedures (making it much more complicated) I'm sure they will still let him grow bigger than 10lbs if he is able, just to be as safe about his next surgery as possible. So they are planning on keeping him as comfortable & happy as they can so he can grow & burn as little calories as possible so we can get him fat! ;) They put his NJ tube (intestinal feeding tube) back in yesterday in hopes of starting feeds again soon, but that upset him so much (I can't say I blame him, I wouldn't want anyone putting stuff down my nose either!) that they are going to give him at least 24 hours to settle before trying to feed.

Dr. Marx did an echo last Thursday & said his heart function has improved some :) so the plan was to do an echo tomorrow (Wednesday) to check it out again, However- Ryker decided to throw a little curve ball on Sunday & he went into A-Flutter with his G'ma Watson here. That morning he was a little more fussy than normal & his work of breathing had gone up quite a bit so they were worried that his PVS might be causing more problems so they echoed him early to make sure everything was okay. (Me in a panic at home with my girls, getting ready to head back to the hospital feeling there was something wrong) So, they did a sedated echo & it came back that his PVS looked the same as it did after his cath (Thank you God!) & his heart function had improved some, BUT that he was in A-Flutter!! Thank goodness the EP Team (Electro Physiologists) were able to pace him out of it by changing some settings on his pacemaker. I can't even tell you grateful I was that he didn't have to have the defibrillator again! So, after all that craziness he had a really good day & night for Grandma. Watching the Olympics with her & all! Grandma Watson told me that it was the cutest thing watching him wave his arms & kick his legs while he was watching it :) & I have had numerous nurses that said it was so cute that they had to have others come into his room to see! So it was a great night with Grandma!

So from here they are planning on echoing him about once a week to keep close tabs on his heart & we are still just praying he has lots more uneventful days that have lots of happiness & comfort for my sweet boy so he can grow big & strong!! :)

Our first Family photo in over 4 months....Such a wonderful & emotional day!!

Love these eyes!

My sweet Braylee LOVES her brother!

Jadd & Dad with Ryker

Trett & Dad with Ryker

I LOVE seeing him sleeping comfortably!!!

Addi reading Ryker a story :)

Me holding my sweet baby boy after I thought I was going to lose him only a week earlier...such an emotional moment!!

Little Buddy watching TV with Daddy :)

Snuggled up in Mommy's arms...best place in the world (for me at least:)

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

Update

Update from Rachel on Facebook - Ryker has been having a really good week! We have increased his feeds to 19 ml. per hour & he is doing well with that! He hasn't had anymore tummy problems (knock on wood) & is putting on tiny amounts of weight. As of now he is almost back up to where he was before he returned to the CICU last week, which was 3.4 kg & right now he is 3.32 so he has just been playing a little catch up. They keep tr...ying to ween his Adavan & because he is on the smallest dose possible the only was to ween it is from every 12hrs to every 24 which is obviously a huge ween, so every time he ends up having horrible withdrawls & then they put it back to where it was :( I think this is playing a big part in him not gaining weight because he ends up burning up all the good calories he has just taken in by crying & sweating. So today I insisted they leave the Adavan alone for a week & let him play catch up & grow!!! Praying for a relaxing & uneventful weekend!! :)

 

Ryker hanging out with his Dad 6/28/12

 

Jason & Rachel have moved into their new apartment and Trett and Jadd are visiting in a few days. YAY YAY YAY I will post in further detail on both events when I receive more information and photos.

 

Update-6/25/2012

After 4 days in CICU- Ryker was moved back to the recovery floor Friday evening!!!!! :) I am SO grateful all the testing is DONE! My poor baby has been poked, prawed & tortured! They did dozens of tests both with his blood & his GI tract & every single test they threw at him has come back negative!!! :) Ryker has absolutely no malrotation of intestines (something that is very common in heterotaxy babies) or blockages. Basically what we have found out was the cause of his pain was an overloaded digestive tract. On Friday the 15th in hopes to try to get some weight on him we moved his feeds from every 3 hours to every 2 & then on Monday when that wasn't enough the team begged me to let them up his calories in my breast milk & between those two changes his tummy just had it! Heterotaxy babies have extremely sensitive tummies mainly because their hearts (especially before the Glenn procedure- Ryker's next surgery) aren't strong enough to supply enough blood flow to their tummies to process large amounts food or too high of calorie intake, plus they have smaller than normal stomachs. So from here on out (no matter how hard they try to push me to let them up his calories) he will not have anything but pure breast milk either in a continuous drip or every 3 hours. We have learned our lesson loud & clear!! :) 

Another minor thing they did find in their testing is that Ryker has a very tight rectal sphincter causing him to seem constipated although his isn't. Therefore- when he was having extreme tummy pain due to the additives in his milk he would tense up even more that normal making it near impossible for him to poop, therefore backing up his intestines so much that it actually made them distended, causing EXTREME pain for my poor sweet boy! :( This is something we are hoping he will just grow out of, but the GI team said as long as he is on a regular bowel regimend such as suppositories &/or miralax daily & breast milk ONLY he shouldn't have the problems has been having any longer. :)

Over the last week my poor baby lost a little under a pound in body weight :( obviously setting him back quite a bit...but his weigh in this morning was back up to 3.275kg. which is 7lbs 2oz (which he was 3.495kg which is 7lbs 6oz) So we are going to get him back up & continuing to grow so he can get to his Glenn!

So as of today he is on 18ml's of continuous feeds of breast milk along with approx 5 bottles a day of 10ml just to comfort him & make his tummy feel more full. He is doing SO good with this! He had to get a blood transfusion yesterday & is now more pink than I have seen hm since pre-op....:) I LOVE IT! 

Hopefully soon I will get this boy back to giggling now that he is back on the road to recovery! :)

This the day he got moved to the CICU after he got morphine & was able to finally calm down. Poor sweet boy! The thing on his foot is an IV. He kept kicking it with his other foot so they had to put a boot on it.

My pink baby boy after his blood transfusion

Update ... Tummy pain

Ryker had been doing so well and seemed so content for multiple days in a row. Those calm and content days for Ryker were so nice for Ryker, Jason and Rachel. Unfortunately Ryker started having a rough time again yesterday and needs your prayers that they can figure out what is causing him extreme pain once again. Rachel posted the following on Ryker's facebook page yesterday. After a whirlwind of a day, we are back in the CICU :( My poor sweet baby has been poked and prawded more than he did the night before his original surgery. We have had horrible deja' vu all day & praying for it to end! We are dealing with extreme tummy pain AGAIN & I personally believe it has a big to-do with the additives they added to his feeds just last night (immediately before the pain began) But we still have to double check on a few things before making any harsh decisions. They still plan to run more tests tomorrow.....please pray my poor sweet baby will not only have good results to the tests tomorrow, but that he will have no more pain in the process!


TODAY : Headed to get a lower GI contrast test done. Poor little buddy is being so sweet!