Following our hearts....

Coming home after being at Primary Children's Hospital for 5 days was the best feeling in the world, but also incredibly terrifying considering Ryker's condition! It was wonderful to see my girls & be able to spend some time with them in the comfort of our own home away from the hospital environment. They were so excited to have us home & especially happy to be able to hold their new baby brother as much as they desired!

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:::

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 :)

Ryker's grand appearance!

Ryker's day has finally arrived!!!

I am so excited to meet this sweet baby boy & at the same time time I am absolutely terrified! I just want everything to go perfectly so he gets here all safe and sound. Then starts all the fears of the unknowns...and what comes next. I just have to try to not think about that part & focus on the now.

So after approximately 10 hours of labor, two epidurals...(with only 20 minutes of the second epidural working before he was here), & LOTS and LOTS of emotions, anxiety & tears. Our sweet baby boy was here weighing in at 6 lbs. 8 oz. 19 inches long & looks identical to my other two babies :) With beautiful olive skin, dark long hair & blue eyes. Looks just like Daddy!! :)


THE TWO MEN IN MY LIFE :)
Immediately after birth he was handed to me for long enough for him to grab a hold of my finger, me kiss him on the forehead, then be passed by Daddy so Daddy could give him a kiss & then handed directly through the window to the NICU. It was heart wrenching but I knew it needed to be done to make sure he was safe.

Daddy was able to immediately go over to the NICU to be with him. I was so grateful for that so he wasn't alone!



PROUD DADDY!


Soon after birth my girls were there to see their baby brother. They were so excited! However they don't allow anyone under the age of 14 into the NICU so my girls wouldn't be able to see him until he was being transported to Primary's. But at least I got to show them lots of cute pictures of their baby on the camera.

They told me I wouldn't be able to go see him for an hour or two so I could recover a little. But after spending a little bit of time with my girls & looking through all the pictures Jason had taken of him...I was sick! I couldn't stay there any longer! So I told the nurses I was going & asked them if they would help me into the wheel chair so I didn't have to do it myself. They really didn't want me to go so soon but I think they realized that there was no stopping me!

FINALLY GET TO SEE MY SWEET LITTLE ANGEL!


JUST STARING AT MOMMY- I LOVE IT!!



THE BEST FEELING IN THE WORLD TO FINALLY HOLD HIM!



Shortly after this next picture I started to black out & had to put him down.....:( I felt so light headed, I had go back to my room to lay down...... I have never been so mad at my body in all my life! I wanted to stay there with him forever! But at least I was able to spend a little bit of time with him so soon after birth!

SUCH A PERFECT BABY!!!!

DADDY WITH ALL 4 OF HIS BIG KIDS WAITING TO SEE RYKER



ADDI HANGING OUT WITH AUNT TISH & HER BABIES


BRAYLEE FINALLY SNUGGLING ME!
Ever since Braylee got to the hospital she wouldn't come near me because of the IV in my arm, wires, machines, etc. I can understand how it can be a little intimidating for a child. This was the best feeling to finally have her snuggle me :)


So, after my kids had been waiting at the hospital for the majority of the day, the Doctors told us that they would not be transporting Ryker to Primary Children's until tomorrow because he was doing so good! This was great news, however it meant that my kids would have to go home tonight with out seeing their baby brother :(



So the next day all four kiddos were super excited to back up to the hospital to go see Ryker!


The transport nurses were so sweet! They took Ryker into the waiting area during the transport so that my kids could really stop & see him! It was so awesome to see the looks on all of their faces.


Our Family of 7 :) :) :)


Addi was SO EXCITED!!!


Here is when Addi realized for the first time that this baby IS baby Ryker & that he wasn't in my tummy anymore. She looked at my tummy & said "Ryker out your tummy Mommy!" LOL...Love this girl!


Headed to go get some lunch with my girls. I was so excited to spend some time with them...Yet feeling so torn after getting Ryker all settled at Primary Children's. I wish there was a way to be in two places at once....REALLY Mom's should be able to do that for their kids! :)


MY SWEET BABY SNUGGLING INTO ME :)


SUCH AN AMAZINGLY TOUGH LITTLE BOY! STILL SO HAPPY & SWEET AFTER HAVING NUMEROUS TESTS DONE.

COMMUNICATING WITH DADDY


After 24 hours in the CICU at Primary Children's they told us that Ryker was doing so good that they didn't feel it was necessary to have him there & that they would move him to the recovery floor to be closely monitored. Here is his first picture there. Finally get to have some sun light through the window :)


BRAYLEE'S 1ST TIME HOLDING HER LONG AWAITED BABY BROTHER


ADDI'S FIRST TIME HOLDING RYKER. SHE WAS SO EXCITED TO TELL ME THE SHE IS A BIG GIRL & SHE IS THE BIG SISTER NOW :)


THEY BOTH ABSOLUTELY LOVE THEIR BABY!


JADD GOT TO HAVE A SPECIAL TRIP UP TO THE HOSPITAL JUST HIM. HE WAS SO EXCITED TO HOLD RYKER!


TRETT'S 1ST TIME HOLDING RYKER. HE GOT TO COME UP TO THE HOSPITAL AS WE WERE GETTING DISCHARGED & HELP US TAKE RYKER HOME :)


GETTING DISCHARGED FROM THE HOSPITAL!!!! 4 DAYS OLD & THIS IS THE FIRST TIME MY LITTLE RYKER GETS TO WEAR CLOTHES. HE IS SOOO CUTE!!!


RYKER IN THE CAR DRIVING HOME!! :)

Before we left the hospital we had a lot of questions and concerns about what choices we needed to make for our baby, to make sure that he gets the absolute best care possible. This is a whole new post that will come soon. Its extremely emotional so it may take me a while to get it out, but I will do it hopefully soon. Until then you can go to www.miracleryker.blogspot.com to get updates from my sweet sister Tisha! I absolutely do not know what I would have ever done without her in all of this! Thank you Tish!

Let the appointments begin!

Starting February 1st they have begun monitoring our sweet baby extremely close. Each week I have 1 prenatal appointment, 1 ultrasound, & 2-3 non-stress tests to makes sure everything is going good with both me & baby.

My first non-stress test was pretty exciting. The nurse hoked me up to the monitor & said this test usually takes about 45-60 minutes. The max being 90 minutes & the minimum being 20 minutes. She said they look for different things in my baby's heart rate such as a normal resting heart rate & at least 2 accelerations for 10 seconds or more. So she set me all up & said she would be back to check on me. She came back about 10-15 minutes later, looked at the print out & said "well your baby has already passed the test & as soon as your minimum 20 minutes is up we will let you go." Then a little bit later as she is unhooking me she said, do you know how many Moms would die to be out of here in 20 minutes, you have a very well behaved baby!" :) That was pretty exciting to hear!

Now up to this point every single non-stress test has been pretty much the same thing, the nurses just shocked that I get to leave as quickly as I do. One of the nurses that I get often once said "I have a really hard time believing this baby has a heart condition, he passes every test with flying colors!" That made me so happy to hear that! He is so active & surpassing everything they had expected with these non-stress tests.

Then for the ultrasounds...Every ultra sound that we have had has come back amazing! Especially with his growth! They told us originally that most babies with heart conditions, especially his type of heat condition don't get much bigger than 4-5 lbs at full term. Well our little baby boy has been in the 60-70th percentile for over a month now, always measuring 1-2 weeks bigger than my due date. As of our last measurement appointment on February 21st he was measuring 1 week & 2 days bigger than what is supposed to be & weighing almost 6 1/2 lbs. :) :) :) Our girls at full term with no health conditions were barely over that.

I just know that this sweet little baby boy is our miracle baby & will continue to prove all the Doctors & tests wrong for always! He is going against everything they have ever said he would be & he's not even here yet! It's pretty exciting to think what else he is going to do! :)

Soon too!!! My induce date is set for March 7th....wish us luck! :)

January 20th Echo

From our first appointment at Primary Children's we knew that we would only have 3 echo-cardiograms until after he is born. Well today is the day for our last one & I am so nervous!

Driving up to the hospital I can't help but think- What if they go back to the original diagnosis?? What if they were wrong the second time instead of the first time? I tried so hard to stay positive but I couldn't help but be very nervous once again for the results.

After about another hour in the Echo room they pulled us aside into the conference room to talk to us about the results. They thankfully tell us that everything is pretty much the same as the last echo :) that it is for sure the right side of his heart that is small not the left & that his heart is now on the left side (correct position) of his chest instead of the right or the center like before. His stomach is still on the right side of his body (supposed to be on the left) so we still wont know what all comes along with his Heterotaxy until he is born.

He said that we can for sure tell our kids that they can see him after he is born, just to make sure that they are up at the hospital soon after birth so they can see him before he is taken away for testing. Although this was a possibility before it was SO good to hear them confirm it so we can finally tell our kids! :)

He said our baby's first surgery will consist of a them putting a band around the artery that goes from the right side of his heart to his lungs. That his heart is pumping too much blood to his lungs & that it just needs to be slowed down a little. Because it has changed so dramatically from before we no longer need to plan on him having his first surgery right away in an emergency type of situation, that he will need his first surgery around 2 months old instead!!! This way he can grown big & healthy before they have to start his series of heart surgeries. :) He said we may be able to take him home with us for a little while, it will just depend on the degree of his Heterotaxy & weather or not he will need surgery to correct anything that comes along with that. Such good news!! :)

After they got done going over everything so we know exactly what to expect from there side of it all after birth, they asked us if we would like to tour both the NICU & the Cardiac ICU. They said that it would be good for us to get familiar with it now before our baby comes.

So we headed up there with the head nurse coordinator. On the way she told that the entire floor was originally just the NICU used for any & all conditions, then as the years have passed they have slowly made a little over half of into strictly the Cardiac-ICU for heart conditions only. So half of it is for all conditions & the other half for heart conditions only. As much as I hated to hear how common heart conditions obviously are, it gave me comfort knowing that we weren't the only ones going through all of this.

She took a through the Cardiac-ICU first knowing that's where we would be spending most our time. As soon as we walked through the doors I was overwhelmed with the most uneasy feeling that I had never felt before. It was so "medical". No doors to the rooms, just glass walls, stainless steel, perfect silence except the sound of heart rate monitors & the smell of bleach. Extremely sterile, yet eery feeling environment. As she walked us through we could see right into most of the rooms, some of them I had to look away so I didn't burst into tears. One of which was a room that for a second I thought was vacant & that they just hadn't pulled it back together yet, but then as I looked closer I saw two tiny little baby baby feet poking out from under all the wires & bandages. All that was visible was his little cap that covered his head & his tiny feet. I about lost it & had to continue walking. Then a little further on she pointed out a room that had a little baby boy in it, not sure the age but I would guess around 2-3 months old. We watched him lay there while his nurse was looking over him, equipment on either sides & covered in wires & bandages. He began to move & cry until the nurse had to put sandbags on his arms to keep him from pulling on his IV's......I lost all control, I turned away & put my head into Jason's chest. All I could think was how are we going get through this?? The nurse was so sweet & talked us both through it, giving us all the information that she could to prepare us for what was to come.