Where do we go from here??

I have wanted to start this post for sometime now....but I have known that it was going to bring up SO much emotion that I knew I needed to be in a good mental state of not crying on a hourly basis first. So finally after many ups & downs (&I know many more to come) I feel like I am there & maybe I can start this post.

On Thursday March 8th after having over 24 hours of testing done on sweet little Ryker, we finally got a call from the Cardiologist that he had results for us. We were so excited to finally know what was going on & to put together a game plan. A Dr. Sue met with us. This was different cardiologist than before because Dr. Menon our pregnancy Cardiologist had been out of town.

As we met with Dr. Sue I began feeling even more confused & overwhelmed than I had ever been before. He drew us a few pictures of what Ryker's heart looked like & these pictures now were completely different than the two other sets of pictures we have at home from the prior pregnancy diagnoses. There were some things he told us that gave a little bit of hope, but then he would kind of back track later & make it seem like he was a little unsure of what to do. There was one point that he was telling us that he could for sure do certain things to correct things with Ryker's heart. Then after he spoke about doing these different procedures he would start to back track & say that he "hoped it would work" I asked well have you ever done this before? & he said "well yes its been done many times before by many Doctors but most of the times it has been done is on children that have a little different anatomy & circumstances than Ryker, however He says "I did do it ONCE myself on a little girl & it worked. I think of her often in hopes that it will continue to work but it hasn't failed yet" So I asked "How old is she?" He replied "she is five" & my heart sank!!! My mind was going a million miles a second just thinking- he wants to TRY something on MY baby that he thinks MIGHT work? - Why aren't we sticking to the original plan? - What happens if this plan fails? - Would if one of the other two diagnoses is correct & not this one? - How have they gotten it wrong so many times & this time is it really right?? - Is he really thinking about what is best for my baby? - & if he's not, what other choice to I have?!?......

AHHHHHHHH!!!!!! I have never felt so scared & absolutely helpless in all my life! At this point I asked him "So say we chose to do what you are saying & it for whatever reason it does not work can we go back in & do the fontane procedure instead?" He looked at me, kind of chuckled, & said "No, if this doesn't work your baby will either need a heart transplant or he will die" I was absolutely speechless!!! I couldn't say another word or the tears would come rushing & I knew I wasn't going to be able to stop them. I sat there in silence while Jason continued to ask more questions. I don't know what more was said in the conversation after that point, I just kept having the same thing rush through my head "Haha...If this doesn't work your baby will need a heart transplant or he will die" over & over & over again! I couldn't get it to stop! I felt so sick & overwhelmed but what other choice did we have??

After Dr. Sue left both Jason & I were absolutley speechless. I wanted to start bawling & tell him how horrible I felt, but I was so scared. I didn't want to stress him out more, this is all already stressful enough & we didn't really have any other choice. I knew I needed to the stop worrying so much & trust the Doctors, this is their job, their life....but I didn't know if I could do that....it was so hard! I felt like I was fighting within myself.

A little bit later Jason & Tisha went to see Ryker & I was stayed in my hospital room (only two people could go see him in the NICU at a time) So I decided that I needed to take this time to email my family to give them an update of what was going on. As I started the email tears started rushing down my cheeks uncontrollably. I tried so hard to stop, but I couldn't. I felt so helpless! In the email I asked them all to please pray for the Cardiologist to know what is going to be best for our sweet baby! I felt like they needed the most prayers just to make sure they made the best possible decision for our baby boy & that he was going to be in the best hands possible. I didn't put in any detail, I didn't want to scare anyone or let them know how bad off I actually was at that point but as I ended I did say-

"One last thing....I didn't want to ask but as I am sitting here typing this with tears rushing down my cheeks, I realize that I really need to ask is- Please pray for Jason & I to be strong through this all. We of course knew it was going to be hard & tried to prepare the best we could but we are realizing that it is really something that you just can't prepare yourself for & I know it is only going to get harder. & please-please pray for our sweet kids, they are having a really hard time being away from us & just not being able to understand it all, it breaks my heart to see them the way they are, but they are trying so hard to be strong they just need a little help."

Later on Jason went home to be with my girls & Tisha stayed at the hospital with me. I was able to go to the NICU & nurse Ryker for the first time which was so exciting & emotional! He is the most perfect baby in the whole world! I LOVED finally being able to just hold him in peace with no one else around & just stare at him, my perfect baby boy!! I kept asking the NICU nurse if I could just bring in a cot to sleep on so I could stay by my baby, of course that is not allowed. Sweet Tisha kept bringing me back & forth (because I was in a wheelchair) to see Ryker. Then one of the times she brought me there & left so I could have alone time with him & I fell asleep with him in the rocker....It was the best feeling in the world!

That night Tisha & I were going to bed & she said "how are you doing?" I replied "I'm okay" & she said "really Rachel, how are you doing emotionally?" & I couldn't hold it in any longer... I lost it completely! Poor Tisha had no idea what was coming to her! I bawled my eyes out letting her know just how scared I really was & through all of it she was so amazing with me! She listened to me & helped me through it in ways I thought only Jason could do! Thank you Tisha!!! You are not only my Sister but you are my absolute best friend (next to Jason of course) You have been here for me through out this entire pregnancy & in so many circumstances before, in ways I never knew were possible, especially with you living 500 miles away. You are an unbelievable person & I will never forget that night in all my life! I love you! Thank you!

By Friday night they had moved Ryker from the NICU to the CICU then to the recovery floor. They said he was doing so good that there was no reason to keep him in the ICU. They had told us that we would be able to take him home by Saturday afternoon so he could spend some time at home growing a little & putting on some weight before his first surgery. They said his first surgery would be between 1-2 months old. The exact timing would just depend on how well he does & that we would would need to watch for certain things like- his face turning blue, heavy breathing, having a hard time eating, sweating while eating, etc. It made me so nervous to think about taking him home but I knew that he needed to be bigger for his first surgery & they didn't feel it would be necessary to keep him in the hospital during this time.

On Saturday afternoon they told me that they weren't going to release Ryker from the hospital because his oxygen levels had dropped so many times through out the last 24 hours. I was devastated but at the same time I didn't want us to go home if he wouldn't be safe at home. So I called Jason to tell him & my girls the sad news & when he answered he didn't sound very good. He said to me "How do you feel about how this is all going?" & I said "I don't know, I feel so confused in so many ways, I don't really know how I feel" & He said have you ever felt like maybe we should get a second opinion?" & I said "Absolutely I have but were else would we go? We are already in the biggest children's hospital in Utah & who else would we ask?" He began to tell me how nervous he had been & how he just does not feel good about it all & how it is all going. At that point I was so relieved to finally be able to release my feelings about it all as well. It was SO good to know that all along he had felt the same way as me! We both were so nervous but we didn't really know what to do about it & we hadn't wanted to add anymore stress to the other knowing that we didn't have much choice.

Later that day Jason came to the hospital & showed me a lot of things that he & his sister Tisha had been researching on the internet & everything about Heterotaxy led to Boston! There was some information that we read that would say stuff about Stanford & so for convenience reasons we would start to lean that way but no matter what we tried to work out we would end up back to feeling so strongly that Boston was where we needed to be.

After lots of research & talking to many Mom's that also have children with Heterotaxy & have been through so much of the same circumstances. I finally for the first time felt a sense of relief! As much as I knew this all would be so much more work & stress than just staying here at Primary Children's I could feel in my heart that it was the right decision to make. It was such a good feeling to have a little sense of clarity.

On Sunday morning I woke up to Ryker's nurse standing over me saying that they were not going to send him home today because his oxygen levels had dropped so much though out the night. Instantly I got a knot in my stomach....If they don't release us from the hospital we can't go to Boston & if we don't go to Boston my baby isn't going to get the help he needs! What do we do?!?! I felt so sick & so confused! I started to lose control, but just then I picked up my sweet baby boy who was now awake & being so sweet & just held him so close & talked to him & he made me feel so much better. I knew that whatever we had to do was for him, for his life & I had to fight for that till the end! I knew at that point that if God wants Ryker in Boston, we will find a way & it will work out the way it is supposed to work out & if he is not supposed to go to Boston it wont work out & that's okay. I had to trust God & put it into his hands & decide that where ever he may lead us is the right way. I told myself that if we were not released today it was okay & that will just tell me whether or not we are supposed to make the moves we had planned for today or not & we would go from there.

By about 11am Dr. Sue had come into Ryker's room. He & I spoke for a little while & I hate to say it but the entire time that we spoke all I could think was- This is not right, I'm not supposed to be here. But kept going back to wherever I am supposed to be will work out & its going to be okay. By the end of the conversation Dr. Sue told me that they were drawing up the papers for Ryker's discharge. I was so relieved, it was the answer to my prayers! I knew at that point that all the feelings that I had about not being in the right place were right & we could finally leave so we could take the next steps. However, I was absolutely terrified to take him home because of his oxygen levels dropping so often. I kept asking- are you sure he is safe to go home??? Is he going to be okay??? But they insisted everything would be fine & that they would keep close tabs on him, gave us a prescription for Amoxicillon (because of his Asplenia), gave us a video on CPR & sent us on our way.
It such a good feeling knowing that we were finally taking our sweet baby boy home to be with his brothers & sisters. But so scary having all the unknowns of where we go from here....

Here is my sweet little Miracle baby on the drive home :)