Our Miracle - Ryker's Journey with Heterotaxy

Our Miracle - Ryker's Journey with Heterotaxy

Monday, April 30, 2012

Tummy Pain

Please pray for Ryker, his Dr's and nurses that they will figure out what is causing him to have extreme pain associated with eating. The last two days he has been in a lot of pain and screaming during or right after feeds. This morning at 4 am they had to give him a sedative to get him to sleep. They have done multiple x-rays and see a lot of Gas but are not sure what else could be the problem. Thank you for the prayers.

Friday, April 27, 2012

Update from Rachel ~

He is having a really good day! His B.U.N levels have gone down a ton meaning that his kidneys are doing way better! The cultures have all came up negative for infection however Dr. Del Nido feels like there was something there that is just not showing up because of how bad he had gotten the other day, so he has decided to keep him on the antibiotics for 7 days. Hopefully his kidneys will do well through that! 

During this week with all that has gone on with Ryker he has had to get a lot of blood drawn sometimes up to 3 times a day to do labs to see where his levels are at. Therefore they had to give him a blood transfusion last night & he has looked amazing since! His skin is nice & pink again :)  

He is doing so good with is feeds. He is taking 20 cc's almost every feeding & then they put the remainder of the feed down his feeding tube. He gets worn out after drinking about 20 cc's so we have to continue to work on that so he can build his endurance for eating all on his own again. He is still on plain breast milk & they have come to realize that the additives that they were fortifying the breast milk with were what his tummy was having a hard time with. The Nurse practitioner spoke to me today about my breast milk cals being at 28 & she is so excited that he wont have to get back onto any additives!

Monday and Tuesday were pretty rough for Ryker. In fact they started talking about sending him back to CICU but like Dr. Marx said "Ryker heard that & proved to us that he wanted to be here (on the floor)". 

He is doing awesome! I am so proud of my sweet tough boy!! I am amazed at how one day he can be struggling a little & then he pulls himself right out of it every time! He is my little hero!!

And to leave you with a beautiful photo of our little miracle. 

Wednesday, April 25, 2012

Update from Rachel's facebook post - Ryker is doing lots better tonight, thanks to everyone's prayers!! His fever had gotten pretty bad & he had a greyish tint to his skin. It was a scary morning!! So Dr. Del Nido put him on 3 heavy antibiotics & within hours his color returned & his fever went down, :) He still has a mild fever & his white blood cell count is still a little high. Just hoping the antibiotic will take care of it. Please continue to pray that the Dr's will find the reason for the fever & that his kidneys will be okay through all the antibiotics! Thank you all!

Update from conversation with Rachel. Along with the infection and fever Rachel talks about above the Dr's and nurses have also been concerned that Ryker may have a severe food allergy. He has had blood in his stool and they think it could be from the additives to the breast milk. In order to find out they stopped his feeds altogether for a few hours and then added in breast milk with no additives. He is now up to full feeds of straight breast milk and tolerating it much better. They will run more tests in the morning to see if blood is still showing up in his stool. As you know I will keep you posted :). 

Thank you for all the love and support. We are so thankful to all of you that are following Ryker's story. 


Ryker has had a fever for a few days and his color does not look good. They initially thought it was from with drawls but now think it is from an infection. Please send Ryker, his Dr's and nurses prayers and positive energy that they can figure out where the infection is coming from and get him comfortable again. :) 

Jason is in UT and is in the process of moving their house into storage and packing up for Boston. If anyone is available to help him he needs a lot of help today and tomorrow. Please call him or text him to let him know when you can help. Thank you. 

Monday, April 23, 2012

Moved to the floor

                                             Ryker is doing great! He has been moved from CICU and onto the floor. This means that Rachel gets to stay by his side 24/7, sleep in his room and no longer has to leave him to pump. Ryker's oxygen levels are doing great, he is staying in the 85-95 range. He is now breathing 100% on his own. He has been more fussy than they would like and they are in the process of ruling out dairy intolerance. This means no dairy for Rachel, Ryker or in the added calorie's they add to the breast milk he gets. His kidney function is still not where they would like it to be so they continue to adjust his medication to see if they will improve. Ryker has what is called Heterozygous Factor V Lieden. This is genetic in our (Jason's family). This means that his blood is at higher risk for clotting than the average person.

Photo below is of Ryker drinking his first bottle after surgery.

If you missed the benefit dinner and would like to hear the speech Jason wrote and had his friend Jay read you can find it here http://vimeo.com/40886609

Saturday, April 21, 2012

More info from friday and photo from today.

The following is a message Rachel sent regarding Ryker's improvements Friday (sorry for the delay).
Things are going great!!! Ryker has had a big day& done so well with it all! He got his Arterial line removed (this has been in since surgery it is used to take his blood) because he no longer needs a blood draw every 3hrs to check his blood gas. They said he will only need one once a day & they can pull that from his central broviac line (the only line he has left that is inside his skin) yay!!! Also they removed his stitches in his surgical incision & was so brave didn't cry once! & then he was moved from By-pap to high flow (blender) & has been doing amazing on that. They are also beginning to wean him from many of his med :) yay Ryker!!!

Today the 21st Ryker is still doing great but they are concerned about the level of his kidney function . They are making some adjustments to his medication and monitoring it closely. Thank you for the support and for keeping Ryker and his family in your prayers.

Friday, April 20, 2012

Ryker continues to do a great job recovering. The plan is to move him to the floor Monday. This means that Jason will be able to go back to UT move their house into storage, see the boys, see the girls, drive back to Boston and finally fly the kids out to Boston!!!!
We are searching for flight options for the kids to get out to Boston. Delta has a non-stop flight that would be the best options. If anyone has sky miles or buddy passes please email me at tisha_weber@yahoo.com with your information.

Thank you so much for all the support and prayers. We CANNOT wait for this family to be together again.

Below is a photo of Ryker taken tonight. Rachel said he has learned to sleep with one eye open at CHB.  Sweet baby boy!

Thursday, April 19, 2012


A brief recap of what happened yesterday. Ryker had been doing great after being extubated, then all of the sudden his alarms were all going off, he stopped breathing and turned blue. The Dr's and nurses got him breathing again and thought all was well. Rachel had a nagging feeling and felt like something was not right. She said that he looked like he was drugged, did not look like her baby and was out of it. The nurses told her that he was just tired and he was okay but the feeling would not go away. Rachel was later informed that the fact she was so unsettled with how he was acting made the nurses think that something else may be wrong and got multiple Dr's to look at what the problem could be. Ryker had not ate in about 24 hours at this point and as it turns out they did not lower the dosage on any of the medications he was already taking plus added another prescription.  His body was not handling the medication well which caused the problems he was experiencing. Once they reduced his medication dosage they started noticing improvements right away. Dr. Pedro del Nido has been in to check on Ryker this morning and he says that he looks great. He also told them he would like him off of the CPAP by the end of the day and on the blender (mixed fresh air with room air).

Please continue to pray for Ryker, his Dr's, his Nurses and that his recovery continues to go smoothly and that his family can be back together again. 

The following photos are of Ryker after his medication's have worn off and as you can see he is alert and fighting like a champion. 

Wednesday, April 18, 2012

Extubation & Benefit Dinner

Extubated and snuggling with Mommy

Ryker was extubated yesterday and he did great from the start, we have been holding our breathe waiting for more time to go by. I am happy to report that Rachel just gave a little update. Ryker is doing great!!! Hoping to get him off of CPAP sometime later today. They are getting ready to restart his feeds. Thank you for all the thoughts and prayers and please keep them coming. This is FANTASTIC news!

Benefit Dinner

 Thank you to all the amazing people who helped with the benefit dinner, attended and donated. Special thanks to Heather Broberg, Children and the Earth (Jodi Frkovich, Amber Edmund) and Salsa Leedos (Travis Bonino) for pulling this all together. The event went amazing and we are so thankful for all the support. If you have not had a chance to view the slideshow that was played during the event you can find it at http://gallery.me.com/chrisnlori#100112 Thank you Chris Ilgenfritz for the amazing slideshow.  I will    post more photos and information once I receive them.

Monday, April 16, 2012

Preparing for extubation - please send prayers and positive energy

Rachel said today that this is the first time Jason has seen Ryker so awake and alert since before his surgery. He is usually sleeping when Jason is around so they were all very excited about this.

The last few days they have been preparing Ryker for extubation. The Dr's and nurses at CHB are so amazing and have been taking extra precaution to help make sure this attempt is a success.  Please send lots of prayers for Ryker's extubation to be a success tomorrow so he can be on the road to a quick recovery and the kids can get out to Boston to see Jason, Rachel and Ryker.

Please remember that the benefit dinner is tomorrow night. There have been so many amazing people working together to make this a great event. Thank you again to all those helping and to all those that have donated.

If you would like join us by thanking Dr. Pedro del Nido please mail your thank you card to him.  See post thank you Dr. Pedro del Nido.

Thank you for your support and love for the family. You presence, prayers and positive energy are very much felt, needed and appreciated.

Rachel has been frequently updating their family blog so if you would like more of the details leading up to what is now check it out. www.jrwarner2.blogspot.com

Sunday, April 15, 2012

Stylish hair

Ryker got his hair washed and styled this morning. :) He looks so handsome. 

Rachel posted this update on facebook today. “My sweet baby is doing so good today! He is currently on his 4th hour of his pressure support sprint, and doing amazing! He was given mylacon for his tummy & seems happier right now than he has been in while! He keeps doing these cute little half smiles & is wide awake! :) I LOVE IT!!!”

We are so excited for the benefit dinner Tuesday. It is going to be a great time!!!!

Please mail your thank you card tomorrow to Dr. Pedro del Nido and let him know you are a Ryker Fan. 

Please address to: 
Dr. Pedro del Nido 
c/o Children's Hospital Boston
300 Longwood Avenue 
Boston, MA 02115

Thank you for your support and for being a Ryker fan.

Friday, April 13, 2012

Finally holding her sweet baby

Rachel was able to hold Ryker for the first time since his surgery 3 and a half weeks ago. Both her and Ryker were in heaven.

Awaited Update

Hello Everyone,

Sorry for the delay in update. Rachel has been very busy as you can imagine and we have not had a chance to catch up on updates.

Ryker has been doing amazing on his "sprints" when he is awake, when he is asleep he does not do well during them. The Dr's think the problem may be that his sedative ativan puts him into too deep of a sleep. They have cut his ativan and methadone dosage in half today. They hope reducing the dosage will help him do better during the sprints while he is asleep. Cutting his dosage in half has caused him to have withdrawals, his forehead sweats and he gags. :(

He is up to full feeds which is fantastic. When he was extubated the first time he was at half feeds, the Dr's think that may have been why his body was unable to cope being extubated. Children's Hospital Boston has an amazing, very expensive and valuable machine that re formulates the breast milk to up the calories rather than having to add formula to the breast milk. There are only 3 hospitals in the US that have this Machine. We are so thankful that Ryker is benefiting from it, it is said breast milk is like gold especially for sick newborn's.

The Dr's will have a meeting Monday to discuss extubation. The soonest they will attempt extubation will be Monday. Please pray that Ryker will be able to stay extubated after the next attempt. The Dr's have given Rachel and Jason a heads up that if he is unable to stay extubated Ryker will have another catheterization and more tests run to rule out what else could be the problem.

Our amazing friend Chris has put together a very touching slideshow for the benefit dinner and we cannot wait to share it will you all. We are also going to try and skype Jason and Rachel in during the dinner. 

If you have not purchased your tickets by going to www.childrenandtheearth.com please do so. Click on the yellow donate button enter the number of tickets you are purchasing.

Thank you to all the amazing people who are helping collect donations to be used during the raffle and auction at Ryker's benefit dinner. Thank you to all the business's and individuals who have made donations. You are all more than amazing.

Thank you for all the overwhelming support!!!!!

Tuesday, April 10, 2012

Running sprints

Ryker is doing well. He is still intubated, resting and relaxing for most of the time except when he is doing "sprints". They perform sprints by alternating periods of complete ventilatory support and minimal support. Ryker is doing great during these tests.
The plan still stands to extubate again on friday. Please keep Ryker in your thoughts and prayers that extubation goes smoothly for him.

***Friends and Family near Riverton if you can, please volunteer to help Heather collect donations for Ryker's benefit dinner. The donations will be used for the silent auction and raffle if you can help please email Heather Broberg heather.hart77@yahoo.com

***If you have not already purchased your tickets for the dinner please do so by going to www.childrenandtheearth.com. Click on the yellow donate button and notate tickets for Ryker Benefit Dinner. The cost is $20 per person.

Thank you very much for all your love, prayers and support. It is our ultimate goal to get Ryker healthy and get this family back together as you can imagine they are all missing each other like crazy.

Thank you Dr. Pedro del Nido

Can you believe on April 21st it will be the one month anniversay of Ryker's first surgery? 
As you may know Ryker has one of the best surgeon's in the world Dr. Pedro del Nido. We are so blessed to have him as Miracle Ryker's Doctor. We cannot thank him enough for taking such good care of our baby BUT we do want him to know we all care about Ryker and in a small way shout our thanks.
We are asking RYKER FANS to send a thank you card to Dr. Pedro del Nido and include a snap shot of your family. Please write we are Ryker fans on your card and mail it by April 16th to ensure it will be delivered around April 21st (the one month anniversary of Ryker's first surgery).  

Please address to: 
Dr. Pedro del Nido 
c/o Children's Hospital Boston
300 Longwood Avenue 
Boston, MA 02115

Thank you for your support and for being a RYKER FAN.

Monday, April 9, 2012

Benefit dinner please RSVP

Good morning! I want to remind everyone about the benefit dinner for Miracle Ryker on April 17th! Please feel free to send out the invitation to as many people as you would like. If everyone could RSVP by purchasing their tickets at www.childrenandtheearth.com, clicking on the donate button and putting "Ryker" in the purchase notes, that would be awesome! We only have 140 tickets available due to the limited space at Salsa Leedos, so make sure to order your tickets as soon as possible.

Also, we are still looking for donations for the silent auction and raffle. Please contact Heather Broberg via facebook or email, if you would like to donate.
heather.hart77@yahoo.com Thanks!

Sunday, April 8, 2012


Ryker and his parents had a calm day today. He is intubated and they are loading him up on calories and rest for the next 3-5 days and then they will try again.

Thank you for your thoughts and prayers. Please keep them coming :)

Saturday, April 7, 2012


Ryker was not doing well breathing on his own today. In fact he was having such a hard time they had to re intubate him. This news was very hard on his parents. Please keep him and his amazingly strong parents in your thoughts and prayers. They will try again in a few days after they build him up with calories. We are praying next time will be a big success. :)

Friday, April 6, 2012


Per Rachel...Ryker was extubated this morning and it went really smoothly and he has been doing so good. He has had a few times where he forgets to breathe but as soon as Rachel grabs his hand and moves him a little he starts back up again. He seems way happier having that tube out of his nose!

Please continue to pray for him to do well breathing on his own. They are giving him a mix of fresh air and oxygen through an oxygen nose breather for now. He is doing good with that so they are hoping to take him off of that soon.

Thursday, April 5, 2012

Wide awake

Ryker has had two fairly calm days of healing. This photo of him wide awake was taking today. His parents were happy that he was able to have the majority of his tubes and wires taken out of his body. You can mostly see the ones he has left in the photo above. He is still tolerating breast milk well. His white blood cell count was a little high today, while they were taking out all the tubes and wires they noticed the source of infection was from one of his lines so they are treating it now. It is good that they know where the infection is coming from so they can treat it accordingly.

The next hurdle in his recovery is extubation. They were going to try and extubate him this evening but then decided by running some "sprints" that he was not ready. They are hoping to extubate tomorrow. Please keep Ryker in your thoughts and prayers, the first attempt needs to be a success.

Thank you again for all the love and support.

Rachel has also posted an update to her blog jrwarner2.blogspot.com

Tuesday, April 3, 2012


Please join Children and The Earth for a special dinner benefiting Baby Ryker on April 17, 2012 from 6:00-9:00pm, at Salsa Leedos in Herriman.

The cost is $20 per ticket and you can purchase tickets online at childrenandtheearth.com. Click on the yellow Donate button at the top of the page, enter the total amount due for the number of tickets you wish to purchase. All proceeds from this event will go to assist Baby Ryker. If you cannot make the event you can still make a donation.

***We are in need of items for the raffle and silent auction. These activities will be held during the dinner and all proceeds will go to assist Baby Ryker. Please email or call Heather at heather.hart77@yahoo, (801)230-1138 if you should have any questions or would like to make a donation. Your contribution is tax-deductible and greatly appreciated!

Pacemaker surgery update

Update #2

I thought everyone might like to know a little more about how Ryker, Jason and Rachel are doing tonight. Right after surgery was a shock for Jason and Rachel to see him again. They were expecting him to have only gone a few days back in his recovery. After seeing him right after surgery it felt like he had gone back a week. They are happy to report now that he is recovering much fast and his color and body functions are already improving. From this afternoon to this evening they have noticed an improvement.He is back to having breast milk and they are "fortifying" the milk so he gets more calories to help him gain some weight.
The surgeon who put his pace maker in (Dr. Baird) has been amazing. He has stopped by Ryker's room three times following his surgery to answer any questions Jason or Rachel have. Rachel and Jason are more than happy with the care Ryker is receiving. Rachel says" It is so comforting knowing our baby is in the best place possible".

Ryker is out of surgery. Everything went well. It took more time than they were expecting so that worried Jason and Rachel. They were told it took longer because the Dr. wanted to make sure and position the leads from the pacemaker to the heart perfectly. Thank you for the prayers please keep them coming so he can recover well.

Monday, April 2, 2012


The heart block we hoped would improve has not. Ryker will be going in at 8:30AM (time was moved) to have a pace maker put in. The surgery should take approximately 2 hours. The pacemaker will keep his heart beating at a normal rate.

Ryker has progressed well in his recovery. Having the pacemaker put in will set his recovery back a little bit. The procedure is not as invasive as his first, so we are praying that he will get back on the road to recovery quickly.

Please keep the prayers coming for Ryker and his family. His parents are especially nervous and needs a lot of support. Please keep the comments, posts, texts etc. coming to them tomorrow.

Thank you and God bless you and yours.

Update and photo share from Rachel

This is the post Rachel put on facebook and asked me to share today along with the photo. He is scheduled at 7:30AM tomorrow to get his pace maker put in. Please keep the prayers coming. I will do a more detailed post tonight.

"This is the first picture I have had the courage enough to show others of my sweet baby boy. Its been almost 3 weeks since his surgery & he has come a million miles from where he was. He looks SO amazingly good! :) I cannot wait to have this sweet baby boy in my arms once again." Rachel