Our Miracle - Ryker's Journey with Heterotaxy

Our Miracle - Ryker's Journey with Heterotaxy

Thursday, September 27, 2012

Sweet Baby Boy

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

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

Thursday, September 20, 2012

Cath Update

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

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

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

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

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

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

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

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

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

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

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

Wednesday, September 19, 2012


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

Saturday, September 15, 2012

Updates from last few days.

All updates below via Rachel on Ryker's facebook page.
9/15/12 Today marks exactly 6 months since Ryker was admitted to Boston Children's Hospital at only 8 days old....
After 4 open chest heart surgeries (2 of which open heart), 1 intestinal surgery, 3 caths, 3 days of ECMO, Numerous surgical/sterile procedures, 6 Cardioversions, 8 CICU Rooms, 6 Recovery Floor Rooms, Hundreds of Echoes, EKG'S, X-Rays, IV's, & Blood Draws & countless consent forms signed........
Our Beautiful baby boy is still here & tougher than ever!! He has learned loud & clear how to get the nurse's attention (he does this SO well & he loves every minute of it:) & we all have learned so much more than I could even begin to describe!!!
That day (March 15th) was one of the many top stressful days of my life, yet such a great day to finally get our baby boy clear across the country & into the hospital that was going to truly help him! I LOVE BCH & all the staff & we are SO grateful for every one of them! They are all like Family!! ♥ One day it will no longer be our "Home" & it will be our favorite visiting place to come & show off our cute thriving Ryker too!! Can't wait for that day!! :)

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

9/14/12 Sweet little Buddy is so tough!! This is right after he got cardioverted around 6pm today. He didn't even cry....dont worry they gave him good sedation for it. Absolutely breaks my heart!!
9/14/12 So...Ryker has had another rough 24 hours :( He was dealing with a lot of withdrawals & then he spiked a fever late last night. From there they did the normal- start antibiotics, run cultures, & around the clock tylenol, but even after all that the fever never went away it just went down a little. Then today at about 3pm he spiked another fever of 39.8 (approx 103.6 F) & everyone was pretty worried! So while they were in the process of changing some things I mentioned that while looking at his monitor it looked like he may be in flutter (it is EXTREMELY HARD to tell if he is in flutter because of his pacemaker settings) So we got EP (The Electro Physiologists) in here & sure enough he was in flutter. So my poor baby boy had to get cardioverted (using the defibrillator paddles on him) again to get him out of it....I HATE SO BAD that this is becoming a semi-normal thing for him!!! It breaks my heart! :( :( & now He is stable & looks much better! His fever was still a little high so they have decided to give him a night of full rest after him having two rough days, so they have put him onto a cooling pad, paralyzed & sedated him. Now we are praying for a very quiet & un-eventful night!

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

Sunday, September 9, 2012


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

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

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

Saturday, September 8, 2012

3 Days of ECMO

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

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

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

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

Friday, September 7, 2012

Update - Off Ecmo

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

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

Wednesday, September 5, 2012


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

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

Tuesday, September 4, 2012

Please pray for Ryker

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

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