After all the testing had been done & we had met with numerous Cardiologists & Doctors, we finally got to sit down to find out what exactly was REALLY going on with our baby. His diagnosis had some similar parts from Primary Children's diagnosis but so many things completely different. It honestly scared me to think how many things had been missed before. The last thing in the world I want to do with sharing my story is make it seem like I think Primary Children's Hospital is a bad hospital because I don't feel that way at all! They are an amazing facility with A LOT of amazing people & doctors! Ryker's condition is just SO complex that he needs to be with the best in the country & be with Doctors & nurses that have seen & dealt with his condition many times before & this is why we are here.
Ryker's diagnosis is- Heterotaxy Right Atrial Isomerism/Asplenia, AV Canal, Double Outlet Right Venticle, Total Anomolous Pulmonary Venus Return, AV Valve Regurgitation, Hypo plastic left Ventricle, with Ventricle Discordance.
After being given his exact diagnosis, we were told the hard news that had we not gotten him here when we did, Ryker would have had, at best 24-48 hours left of life. Our baby woud have gone to sleep around 9 or 10 days old & just not woken up.......This was heart wrenching! I cannot thank God himself & the wonderful "Parental Instinct" enough! As much as it was so hard to heard what was REALLY going on with our baby, leaving no room left for the positive "what ifs" & "maybes" It was SO good to finally know for sure that this IS what he has & now lets get it fixed, with no more question marks remaining! We had so many completely different diagnosis' in the past that we were starting to wonder what one was right & that feeling was finally gone & it felt wonderful!!
Dr. Marx (Ryker's new Cardiologist) told us that Dr. Del Nido (The top Cardiac Surgeon in the world!) was doing whatever he could to get his schedule for this next Wednesday the 21st of March moved around so he could get Ryker in for his first operation. He said that they would have to let us know because Dr. Del Nido (needless to say) has an extremely tight schedule. His waiting list is currently 10 months to a year & he is going to try to move his schedule around to fit in OUR baby!?! What an amazing man!!!
With knowing Ryker's surgery could potentially be this next Wednesday I wanted to soak in every second with him even more than I already had! Since his birth I had always been a little bit of a fanatic about leaving his side for more than two seconds, but now knowing what I knew I REALLY never wanted to be apart from him!
They would only let one parent sleep at his bed side so Jason would go back to Chris & Lori's house each night & then Chris or Lori would bring him back each morning (They are so AMAZING!!) So I had every night alone with just me & my little buddy. I don't think I ever slept! Right around 1am every morning he was wide awake & just staring at me with his big beautiful eyes! :) There was nothing in the world that could stop me from staying up all night long with him every single night! He was so alert & sweet all of these times! His eyes just amazing, I could stare into them all night long....& did! :) Although I never left the room, the days & nights flew by. Most the time was him sleeping in my arms & other times of him looking around & being so sweet, rarely crying (unless a nurse or doctor was bugging him of course) I would talk to him & he would stare at me & then there were many times where not a word was said... I felt like we were communicating in so many other ways that words were not needed. I will never in all my life forget those times! Some of the best times of my life, although stressful, they were amazing on a whole different level that I had never experienced before!
By Sunday evening they confirmed that his surgery would be at 8:30 am on Wednesday the 21st. I was so excited to finally have the appointment with the Doctor we had prayed & hoped for! Our baby was finally going to the get the help he needed! I had so many mixed emotions- happiness mixed with fear. Once we started telling people about Ryker's appointment it was amazing to me to hear numerous stories about how close to impossible it is to get into "the famous Dr. Del Nido" & how blessed we were to have a set appointment with him. We had one family member told by their neighbor his child had gone to him & that some children have died waiting in line to get an operation from Dr. Del Nido & how lucky we were to get him for a Cardiac Surgeon!! This was heart breaking for me hear! How did we get so lucky? Especially if other children have died waiting for him? I began to really truly realize how blessed & special this sweet little baby of ours really is!
By Monday morning I could no longer get Ryker to nurse. I of course was so worried & talked to Dr. Marx about it. He said that Ryker was working so hard to breathe right now that nursing was like running a marathon for him. He said that when Ryker is eating he is actually burning more calories than he is taking in because his heart is working so hard. Let alone having him nurse that is way more work than drinking from a bottle. So he said until after surgery I needed to pump & only give Ryker a bottle. It broke my heart to know that my sweet baby was working so hard on a daily basis that even eating was hard work for him! I cannot imagine what his body was really going through. Why can't I as his Mommy just take it all away? Why do sweet little innocent babies have to go through something like this? Why can't it be me instead??
By Tuesday morning The attending Doctor came in to watch Ryker feed from his bottle. She said that knowing he had a hard time the day before nursing made her nervous that by today bottle feeding would be too hard for him as well. After watching him drink only a small amount from the bottle she said that he was going to end up damaging his lungs &/or his heart by doing this, therefore he would either need to be put onto IV fluids for nutrition or get a feeding tube to eat until his surgery tomorrow morning. Jason & I chose to have him get his nutrients from an IV because for one- he already had an IV that could be used & for two- he had already been traumatized enough the day before with all the pre-operative testing for him to now get a tube put down his throat.
After finding this all out I couldn't help but think- what would have happened had we just done what Primary Children's had told us to do? He hadn't been put on any diuretics before being sent home, something he was put onto immediately after being admitted here & something we now know is saving his lungs from also being damaged in the wait for his operation, & now he is too exhausted to eat anything at all without hurting his lungs or heart in the process. Had we been at home I would have continued to feed him not knowing what was actually happening. It made my stomach hurt thinking that we could have been at home not knowing that his lungs were slowly filling up with fluid from his heart pumping incorrectly & no diuretics to get the fluid out & then I would have continued to feed him not knowing it was slowly killing him! I am SO grateful they are familiar with his condition enough to know these things here & that we were inspired to come to this hospital to get him taken care of! I don't even want to think of where we would be right now if we hadn't.
That whole pre-surgery day was a very hard one! Nothing of course compared to the day that was coming next, but it was so hard in so many other ways! I had to repeatedly hold my sweet baby down while he got his blood draws & tests done to prepare him for surgery in the morning. Met with numerous Cardiologists, Anesthesiologists, & Cardiac Surgical Fellows to get consent forms signed & go over the "plan" for tomorrow. I felt like every time I signed a new form I was signing my baby's life away. It was gut wrenching!
I frequently found myself holding my sweet baby and crying! I didn't know how much more he & I could take, yet I knew tomorrow was going to be a million times harder! I just wanted to wake up from this nightmare!! I would stop for a second sometimes & think "could this all just be a dream? Am I going to have one of those moments where you wake up in a panic, remember your dream, & Thank God numerous times that was only a dream?" I wished SO BADLY it could just be that easy! I wished so bad I could wake up in my own home, with my healthy sweet baby boy in my arms, my kids & husband right by my side, & that everyone was healthy & happy once again! But I knew that wasn't my reality right now & that this was the only way I could have this sweet baby boy & I was SO grateful for it all no matter how hard it may be! I knew without a doubt in my mind that if someone came to me & said you can have a healthy perfect baby, but that it couldn't be my little Ryker I wouldn't do it in a million years! I want HIM & only HIM no matter what comes along with it- And he IS perfect! We just have to get him healthy so that he can have a perfect, healthy life!
That night was an extremely emotional night. But a very different type of "emotional" than I had imagined it would be. I had come to a point of peace & calmness. I was finally to the point that I could say "Okay God, we have done all we can do & we have taken him as far as we can take him, now we have to hand him to you & know that its up to you & your will to get him through this next 24 hours." That was extremely hard for me to finally let go! To say that if it is God's will, it will be & to know I have done all I can do & he is in God & Dr. Del Nido's hands now.
My Dad had put it perfectly when I was crying to him that night telling him how scared I was...he said "Rachel he is in God's hands now & in all reality it is God that is the the best surgeon in the world & he will guide Ryker's Doctor to do the best surgery possible" I knew this was true. I knew my baby would make it if it was God's will to have him continue here on Earth & if he didn't then I am just SO grateful that I got every second I could this perfect little baby boy! I am SO grateful that he has made it as far as he has & that he chose Jason & I to be his parents & his advocates along this journey! That was all I could focus on.
Jason text me at about 1am & told me to look on Facebook. So I did & was amazed! I had never seen anything like it before. Every single thing on my newsfeed was about Ryker & how people were praying for him & sending him positive thoughts & energy! Then the icon at the top of the page said 103 of your friends have changed their profile picture & all but two of those profile pics were my baby's face. The tears were flowing.....It was amazing to me to see how much support & love we have!!!
This was my status after I saw this-
"I am absolutely AMAZED by the outpouring of love we have received through all of this but especially tonight! It is the most unbelievable feeling to get onto Facebook & see that the majority of my friends & family have changed their profile file pics to my sweet baby's face! You are all so amazing! Thank you!!! I am so incredibly lucky to be the Mommy of this sweet baby boy & I know he is going to do amazing tomorrow thanks to everyone's love, positive thoughts & prayers! ♥"
Around 2-3am Ryker was on his regular schedule & wide awake! I am SO glad that I got to spend this time with him!! He was so sweet & bright eyed, as he always was in the middle of the night. We made a video to send to Daddy since he couldn't be there...Jason was always saying that he liked to wait till Daddy left to wake up, so we had to include him on how sweet he was being the night before surgery. Then I got to give him his pre-operative bath which he didn't like much, but he was so good. Then around 4 am we snuggled & stared at each other in perfect silence until I fell asleep with him in my arms. It was so peaceful like God was holding us both.
Here are a few pictures of our admittance day & the week before surgery....
Sweet little baby being so brave while he gets an echo
Exhausted after a long first day of testing
My favorite way to snuggle :)
Sweet sleepy baby!
Love these boys!!!
Ryker listening to his siblings on the phone :)
Sweet handsome boy!!
Always smiling while he sleeps :)
Love these eyes!!!!!
Resting after getting another IV :(
Right before his pre-operative bath....skinny-legs!
All nice & snuggled up right before surgery
2 comments:
Rachel and Jason,
You and your family continue to be in our prayers.
Ashley
I love you Rach. My heart is absolutely aching for you And your family. Keep being the strong bad ass I KNOW you are.
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