This is by far my most debated & emotional blog entry. I started this post on March 29, 2013 & only just now finished it this early morning (February 4, 2014). For so long, I have wanted to let the many, who care so much about my baby boy, know what really went on during the last few months of Ryker's life & what the true reality & sensitivity of the situation really was. But obviously it has been extremely hard to be able to get to the point of being strong enough to get there. I’ve struggled like you wouldn't believe to put my feelings into it, without getting in to the harsh details.
The majority of this blog entry was written during the last month of Ryker’s life. But needless to say, I was unable to not only finish it, but actually become brave enough to post it before the heartbreaking day of April 26, 2013, the day our beautiful boy returned to his home in Heaven.
And this is where the post begins...
Early morning on February 4, 2013 my sweet little Ryker was sent to the Cath Lab for an emergency Cardiac Cath. Up to this point, Ryker was doing so well! So well that we had even talked very seriously about going home for the very first time. But this day, the day of February 4, 2013, this is the day the world as I knew it, changed forever…. we had no idea that by the close of this day we would never be the same again….
Ryker's Cath was not good….I will not go into details, but I will say that it was one of thee most emotional, hard days of my entire life.
After Ryker’s Cath was over & he was back in his hospital room, Jason & I sat by our baby’s side for hours, in tears, holding our sweet boy's hand as he laid in his bed completely sedated, as the ventilator took breaths for him. We sat & we waited to hear from both Dr. Marx & Dr. DelNido on the results of our baby’s Cath. As much as I prayed for them to come into the room, the second that Dr. Marx walked in, I wished he hadn't. I could see it all over his face….he was dying inside, he didn't know how he was going to tell us what he needed to tell us. I could tell he had been crying & his heart was in pieces.
This is a moment that I will never forget in all my life! The room was dark, with a few vague lights from Ryker's monitors. Jason & I stood up to walk towards Dr. Marx, who was obviously falling apart as he walked towards us. As he approached, I lost it & buried my head into Jason's shoulder, I didn't know how I was going to handle the news I was about to hear. Jason held me tight & supported me as I tried my hardest to pull myself together. Our sweet Dr. Marx struggled as he went over the many hard wrenching details of Ryker's Cath. I could see, that he was fighting with all he had to hold back his emotions. After all the hard to swallow details were past, he then said- "I have come across this type of hard circumstance over & over during my career, but this time around I am struggling more than I ever have with these things. If I could give any Family good news, your family would be the Family that I would choose….but sadly, Jason & Rachel, I cannot. I feel that it is in Ryker's best interest to be at home to spend much needed time with your extraordinary family, making beautiful memories together that you all can cherish forever."
This is where I couldn't contain my emotions anymore, I knew exactly what he was trying to say without actually saying the unimaginable words. I knew that there were no options left for our sweet boy & it pained everyone in this amazing hospital that loves our sweet boy, almost as much as it did us.
It was then that I forced the painful question out of my mouth...the question that burned all the way down to my soul, a question that as hard as it was to ask, I had to make clear for myself…. I said, with tears rushing down my cheeks & my voice trembling- "You feel that we need to take Ryker home & let him pass away at home?" Dr. Marx looked at me with tears welling up in his eyes & said- "Yes, Rachel, I do…"
The remainder of the conversation was full of tears & unexplainable heartache. We couldn't believe that it was really coming to this, after all our sweet baby boy had fought through.
That night was a night that I will never forget in all my life. There are very few who know what I personally went through on that heartbreaking night. Maybe one day, when I am strong enough, I will share my experience.
From there we worked like you wouldn't believe, to get our baby boy home. It didn't matter what hurdle we came across, no matter what medical equipment the specialists would swear we could not have at home, or what IV medication was not allowed for home use, we would find someone that could help us to work it out. Then on the JOYOUS February 19th 2013 after 342 days inpatient; Jason, Myself & our Beautiful Baby Boy walked out the doors of Boston Children's Hospital. It was the best day of all of our lives!
From that moment forward I can honestly say I have never & will NEVER loose hope. No matter how hard it has been, we as a family are doing everything we possibly can do to make our sweet little Ryker's life BEAUTIFUL!! Ryker is now thriving at home! He is so in LOVE with being home with our Family together at last, you can see it in his eyes & in his smile! He is moving around like never before & talking up a storm every chance he gets. Home is so incredibly good for him & I am so unbelievably grateful for this beyond INCREDIBLE experience to have our baby boy home where he belongs & deserves! I wish that there were words in the human dictionary to explain the way I feel right now! The joy in my heart is astounding & when I really sit & try to think about how I feel & most especially how my sweet Ryker must feel.....all I can say is it is absolutely Unexplainable!
We spend every single waking second together, my girls get to hold him every second that they want to, I am in charge of all his cares, medications, & sleep schedules, I can sit in my big comfy recliner all day & night snuggling my boy to my hearts content, I finally had the amazing opportunity to have all my babies laying on a blanket on the floor, playing together! It was unbelievable & something that I will never in all my life forget! But very most importantly- my Ryker is LOVING life! He is not scared of what is to come next, he has no fear in his eyes, just love, perfect & complete LOVE!! I want so badly to take these moments & freeze them in time forever! I am so in love, so happy & so incredibly content with my life at this moment as I know it! Please God don’t let it change! Please let our Family live together FOREVER!!
After doing some research on natural cures for the thing I despise most in the world- PVS (Pulmonary Vein Stenosis) I found some information about greens such as kale & wheat grass juice helping in the recovery process of this horrible disease. So, along with Ryker's other 22 daily medications, he gets his greens (through his G-tube of course so he won't taste it) along with a multivitamin & probiotics. I am determined to give my sweet baby boy every tool possible to fight through this horrible disease & prove all those Doctors & statistics wrong :)
On Thursday March 7th our Beautiful Ryker turned 1 year old in the comfort of his own home!! It was an amazing day that we as a Family will cherish for all our lives! It’s so incredible knowing how far he has come!! Approximately 85% of Heterotaxy RAI babies don't ever see their first birthday, so needless to say, we have been overjoyed to have such an incredible day with our Miracle Boy!
On March 12, 2013 our little buddy was readmitted to Boston Children's Hospital, after a routine check-up. As much as we had seen this readmission coming, it was an extremely hard pill to swallow. I will not go over the horrifying details of these extremely hard days for now (it is another post for another day) But I will say that the week & two days between March 12th to March 21st were excruciating. Then after a long, hard & courageous fight from our little Hero, we were on our way home. But this time we were sent home on Hospice and "end of life" comfort care…….oh how my heart is breaking! Those words are so hard to swallow, come to grips with & type into words…. How does a Mother stomach those words? I don’t think I ever can...ugh...My heart is breaking!
From that day, my amazing Mom moved in with us & has been incredible in every way possible! We have nurses in and out 1-2 times daily & Doctors about 2-3 times a week. We receive 1-2 shipments per day for all of Ryker's many medication & medical supplies, we have created our very own "at home hospital"
Hospice checks in, but to be completely honest, I would rather not see them…. they are only a harsh reminder of what I am trying so desperately to prevent. I have gotten numerous letters in the mail from different teams of Doctors that either state "the facts" of Ryker's hard to stomach diagnosis, or to give their "condolences on whats to come" & as much as I know it is all out of pure & true Love for my sweet baby boy, I again, have to be completely honest- They all go directly into the garbage can. Not out of resentment or anger on my behalf, but because of the fact that I am not on the same level of beliefs as they are. Some might say that I am in denial & maybe I am….But this denial is what is going to get us through this. My sweet beautiful Ryker needs & deserves a Mommy, Daddy & Siblings who are with him through thick & thin, & ones that are going to be positive, upbeat & uplifting so that no matter what is to come, he will never feel "the facts" or the "condolences" My Ryker IS Alive & Beautiful & I am going to do everything in my power to keep it that way.
The majority of our days are incredible! Some days are hard, when our baby is not feeling very good, but most are beautiful! Even though we have meds & treatments mixed in, it is just INCREDIBLE to be here, with our boy! We as a Family are doing all we can to soak in & love every second we have together. When we left the hospital for the last time on March 21, 2013 we were given 5 days with our boy at the maximum, some thought he may not even make it through the first night. But today as I write this, it is April 18, 2013 & it has been exactly 4 weeks since that day. Ryker is going strong & is beautiful as ever. He is so smiley & happy to be here! His nights are long & hard, but his days are so beautiful & alive! I cannot explain the gratitude I hold in my heart to have him here with us, it is incredible! Like I have said before, there are no words in the human dictionary to explain the love I feel in my heart, it is so powerful & so beautiful! We pray, as a Family that this time never ends.
Today is December 7, 2013. I started this post on March 29, 2013 & the last time I had worked on it was April 24, 2013 (only two days before we lost our beautiful baby boy) I have looked back at this post over & over, debating whether or not I could ever be courageous enough to read through it again, let alone post it. There were many times that I honestly did not think that I was going to be able to & then today, as much as it has killed me to read back through it all, it is so healing at the exact same time.
In the time that I have been away from my sweet baby boy, I’ve had people say to me- “at least he was born that way & you somewhat had time to prepare for what may come” All I can say to this is- “What exactly would you do to “prepare” if a doctor pointed to one of your children & said you have very limited time with them, we don’t know how long, but be prepared!” Could you “prepare” for something so deep & so unimaginable? Is there REALLY a way to prepare for your child passing away? I have been there first hand & I can honestly say, there is None! There is absolutely no way for the heart & soul of a Mother/Father to prepare for their baby/child leaving this earth. No matter how far we got into our journey & even at the very end, no matter how desperately I wanted to be strong for him & let him go, I couldn't... I could never give up on my baby boy! I wanted to hold him forever...
We had 8 absolutely incredible weeks at home with our beautiful baby boy. Not one time did we ever loose hope for our sweet little Ryker! This is the exact reason why you are just now reading this post, & also this is exactly why I believe that he survive for an extra 5 weeks, rather than 5 days. No matter how many Doctors or specialist told us that there was no hope left, we firmly believed that MIRACLES HAPPEN!! I never once wanted to inform anyone on what was REALLY going on, because I was so scared of others loosing hope & that the positive energy & prayers would stop. I knew my baby boy needed all the positivity he could get & a reason to continue fighting! This is why we couldn't bare the thought of letting out the true reality & sensitivity of our circumstance.
The days leading up to Ryker’s passing were beyond all words- excoriating! I know that it is something that I will never, in all my life, be able to write about. But I do want you all to know that, of all the CHD’s that my Ryker had, it was ultimately PVS (Pulmonary Vein Stenosis) that took his life. I would absolutely love to one day find a cure to this horrible disease. Medical research has come so far that we can now fix half a heart, but these tiny little veins cause so many children to loose their lives. It breaks my heart.
Now today- February 4, 2014 (the anniversary of the hard day that started this post) we as a Family are just over 9 months without our sweet little Ryker. We are doing all we can to live a life that our baby boy would be proud of & help families the same ways that so many helped us. I know with all my heart that Ryker is with us constantly & that is what is keeping us going.