With finding out that Ryker has no spleen, along with everything else he has going on, we were so nervous to have him get exposed to any germs, but my kids were so good about washing & using hand sanitizer constantly. Braylee had even called me when I was still in the hospital telling me all about how she & Grandma had cleaned our whole house to get rid of all the germs "even ALL the door handles!" she said :)
As much I absolutely LOVED being home.... I didn't realize quite yet that it was going to be by far THEE hardest next 24 hours I had ever been through at that point in my life! (Now being weeks later as I write this, I have had many more of these times but we will get to that later) So at first I tried so hard to not focus on what was to come & just focus on spending time enjoying every second with all my kids together!
At this point all we really knew was that the only way our sweet baby boy was going to survive, was to get him to Children's Hospital Boston. We didn't know how we would get there, with us having no Doctors on our side & no transfer or referral to get there... all we knew was that we HAD TO get 2,000 miles across the country with an extremely medically complex newborn baby, all by ourselves. We knew time was of the essence & whatever we were going to do, had to be done in the next 24 hours.
There were so many things that had to be worked out, as well all the little details with my kids & home too. I needed to figure out who was going to take care of my sweet girls while we are gone, for an unknown amount of time. I knew no matter where they went, it was not going to be easy, but I needed to make the best decision to help them to have the least hard time while we are gone. I needed to pack their bags for who knows how long, pack mine, Jason & Ryker's bags for who knows how long, but first unpack my hospital bag for Ryker & I, figure out where our dog & cat needed to go to be taken care of while we are gone, sort through bills & home details so nothing goes late & then somehow find enough time to spend GOOD quality time with my sweet girls & have them spend lots of time with Ryker & their big Brothers with all of them together before we leave.... Again for who knows how long.
I was struggling so hard with the fact that I had just barely brought my sweet baby boy home to his brothers & sisters only for me to rip him away from them again. I knew I was making the right decision but it didn't make it any easier when talking to my kids about it all. At this point the hospital stay at Primary Children's was the longest time I have ever been away from my kids & before that it was only 2 nights, so how was I going to leave them not knowing when I was coming back? I had no idea how long it could take to get across the country, get admitted (without an appointment or the hospital even knowing we are coming), get a major open heart surgery completed & how long recovery takes after open heart surgery... All I could do was pray that God would help us through this & know that we would be back together soon.
So many things had been talked about up to this point including- how we get to Boston, when to leave & where we stay while there? We don't know anyone that is that far away & how are we going to know where to go, let alone how we would get anywhere that we needed to go! Tisha called us & had some amazing news! She has a friend named Sharon that her Brother named Chris & his Wife Lori live in Boston & are more than happy to let us stay with them as long as needed while we are there. Then even better not only do they live in Boston but they live only about 5 miles from Children's Hospital Boston where we want Ryker to be AND both Chris & Lori are nurses that could help out if there were any problems. It was an answer to our prayers! It was so amazing to me that these people that not only had never met us before, but that they lived clear across the country were willing to open their home to us!
Then came the subject of "We know we need to be in Boston, but how do we get clear across the country with a newborn baby that has Heterotaxy, numerous heart defects & no spleen?" We knew we couldn't take him on a commercial airline knowing that not only would they not let a newborn on, but that he has already had problems with his oxygen level dropping & I wasn't about to take a chance of it happening on an airplane. We couldn't drive 40 hours with him strapped in the car seat stopping along the way & having him pick up germs so easily with him not having a spleen, let alone babies don't travel just 5 minutes to the store very easily let alone 40 hours of traveling cross counrty.
We sat in my bedroom with a few family members (& Jason's Sister Tisha on the phone the entire time doing whatever she could from 500 miles away) racking our brains of how we could do it. We had a friend that had said he would start checking into possibly getting a jet his friend owned. This gave us so much hope, but again as we started thinking about it. I was so nervous of him going on an aircraft & having his oxygen levels dropping.
After hours of this I started to lose hope, I was so overwhelmed & so stressed knowing the only way to get him the help he needed was to get to Boston, yet we had no way to get him there safely. I broke down & started bawling as we all sat there, I didn't know if I could handle it anymore! I just wanted to do what was best for my baby & I knew that getting him to Boston was what needed to be done, but it just seemed so impossible! At that point Jason stopped me & said "Babe, stop, you have to stay positive! We know what needs to be done, we just have to figure out the right way to do it. I promise I will figure it out, all I want you to do is take care of Ryker & be there for the girls, I will worry about the rest." This was the best thing in the whole world for me to hear right then. I knew he would do whatever he needed to do to get it all worked out & I knew he was right, I was losing it, I needed to stay positive & I needed to be there for my kids so much more than I needed to stress. I knew at that point more than ever that we were in this together & we were going to be there for each other no matter what & that it was our duty together as parents to make sure our sweet baby that was depending on us for his life was going to get the help he needed & TOGETHER were going to do whatever we needed to do to make sure that happens!
I couldn't even imagine doing this alone! I am so grateful for my husband in every way possible! He is my rock that I know I can depend on through anything in life. I know we can lean on each other no matter what & get through anything! I love you Baby more than you could ever know! I am so grateful that I (& our kids) have you!
I decided I was going to go spend some good quality time with my sweet girls & leave the stress behind me for a while. I went into their room & snuggled them both while we watched a movie. I knew this would be the last time I would be able to do this with them for who knows how long & I soaked it all in for every second it was worth! I kept having tears run down my cheeks & my sweet little Braylee would just look at me, tell me how much she loves me & hug me even tighter than she had been before. Even though I hadn't told her all that was going on she somehow understood just enough to know that all I needed was her to hold me to make me all better. :)
By the time I got my girls into bed around about midnight, I walked into my room & Jason said "We found a way to Boston!" He began to tell me all about how they had been looking up different air-med airlines that you can actually rent (for $28,000) that has nurses & EMT's on board with all the equipment needed for any condition or emergency. Plus they could be here tomorrow to pick us up! It was once again the answer to our prayers! I instantly felt a huge sense of relief finally knowing that we were going to be able to get our baby boy to Boston to get him the help he so desperately needed & deserved!
That night I couldn't sleep (for SO many reasons) but mostly because I was terrified to take my eyes off Ryker for a second. I was so scared that if I fell asleep, he would stop breathing. I wasn't a nurse, I had no idea how to take care of my heart baby if something bad did happen. I laid there the entire night just staring at this sweet boy.... He looked so perfect! How was so much inside his tiny body put together so wrong & he wasn't showing any signs of any of it? Had medical experts not told me all that was going on inside his body, I would not have known at all. He is exactly like my other two babies, he is beautiful & perfect as can be, yet I know I could lose him at any second.
The next morning reality hit me like a ton of bricks..... I was going to have to let my two baby girls (2 & 5 years old) who were my pride & joy in life- My WHOLE WORLD leave to Montana to be with Jason's Family, not knowing when I was going to see them again! I knew with all my heart Jason & I were making the right decision, but it didn't make leaving any easier! I knew, that as much as I didn't want to, I needed to sit down & talk to them about it all & fill them in on what was about to happen.
While talking to Braylee I tried my hardest to stay as positive as possible, telling her how lucky her & Addi were that they got to go play all day long with all their cousins that they don't get to see very often & how Daddy's side of the Family was going to spoil them rotten. At first she was so excited. But then as the day went on she started to realize that going to Montana meant she had to say goodbye to Mommy, Daddy & Ryker. She broke down like I had never seen before! Her & I snuggled up in my bed for some time just crying together & talking about it all, trying to make her feel better but I knew there was nothing that I could say or do that would make either her or I feel better about parting ways. She way so incredibly brave through all of it....no matter how hard she cried she would stop & say "but its okay Mommy, I know Ryker needs you more than I do right now"
How did I raise such a sweet & selfless 5 year old? I couldn't believe how well she was setting her feelings aside to care for her new baby brother! She is the most amazing little girl! She knew how hard it was going to be to leave but not once did she ever say anything about it not being fair or that she didn't want to do it. She just knew that Ryker needed us the most right now & that if it was her that needed us the most we would do the same for her.
An hour or so before we had to leave we checked the boys out of school so we could spend time together as a family. This hour or so was the most powerful, emotional & unforgettable moments in all my life! We all together sat on my bed holding each other, crying together & praying together. It was so emotional & so hard, yet one of the best times of my life! It was amazing to me to see loud & clear just how amazing & strong our family really is! All four of our kids were so selfless & caring just knowing it was what was best for their baby brother & that we would be back together as a family soon. I will never forget this moment in all my life!! My cute little Addi of course being two years old didn't quite understand what was going on she kept coming over to me putting both her hands on my cheeks & saying "Mommy sad? Mommy not be sad, be HAPPY okay!" & she was just staring at all of us so confused as we cried together. She kept hugging Braylee telling her that she loves her & asking her to be happy. She is such a sweetheart!! I am so glad her & Braylee have each other & that our boys have each other through all of this!
From here I have typed this next paragraph numerous times & no matter how hard I try there is way more personal emotion in it than I can handle letting out. So after deleting it 4 times now I am just going to stop trying & skip ahead by saying- Leaving my sweet kids was at that point in my life the hardest thing I have ever had to to do - EVER! I tried my hardest to be so strong for them but seeing them cry & me having no way of consoling them was, beyond unbearable! I do have to add though that no matter how hard it was, it was so comforting to know that my boys were going with their Mom that loves them so much & my girls were going up to Montana with Jason's Family that would do anything in the world for them both. I knew all my kids were in the best hands possible & that we would be back together as a family soon!
Before boarding the plane I was talking to Tisha & she asked how I was doing. That was the first time in a while I had really stopped to think about that. All I could say was "I'm numb!" I didn't really know how to feel, I was just going through the motions. I honestly felt like I was just on auto-pilot and God was taking my hand & leading me down the path I needed to be on because he knew Jason & I couldn't do it alone.
Boarding the plane was so surreal! It was really happening, now all we needed to do was get there safely. Which we did. Ryker did so amazing the whole flight! His oxygen did drop a few times but they had all the equipment to get him right back up where he needed to be. He was so sweet & didn't fuss one time. He is such a good baby! The nurses were the sweetest women, both absolutely amazing with Ryker & so caring. I am forever grateful for them!
Finally we arrived in Boston! Our new friend Chris (soon to be one of our absolute best & most caring friends) was there to pick us up. He was so friendly & sweet & never once made us feel like he was being put out by being there for us.
Later after being at Chris & Lori's house we realized how amazing they both actually are! Not only did they open up their home for us, but they welcomed us with open arms! They really truly care so much about us & our sweet baby. They wanted to make sure we were completely taken care of with diapers, wipes, food & just being there for us every second we needed them! Thank you Chris & Lori for all you have done & are continuing to do for us along this journey! I don't know what we would have ever done without you both! We love you both so much!
So from there, to make another VERY long story short. We walked through the Emergency rooms doors (beyond terrified for what was to come) & were admitted to our Hospital of choice- Children's Hospital Boston that is rated #1 in the Country for Cardiology & Cardiac Surgery!! Plus, they are the top Hospital in the world for treating Heterotaxy!! Not only did we get admitted we got the top Cardiac Surgeon in the world- Dr. Del Nido. :) He is known all over the world for not only being the best Cardiac Surgeon in the world but for specializing in complex conditions like Heterotaxy.
I am so glad we followed our hearts & did what we knew our baby boy needed us to do for him! I am so grateful for all the friends & family that helped us immensely to get here (specifically Jason's sister Tisha), I don't think we could have done it without you all of your help! Thank you! Thank you!!
:::Here are a few photos that were taken during our short stay at home:::
:::Here are a few photos that were taken during our short stay at home:::
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