CODE.......

On May 20th at 6am after a LONG night of Ryker being beyond upset & holding his breath. The nurse & I were finally able to talk the Doctors into letting him get extubated. I knew that the reason for him getting so upset was because he was awake enough for him to realize that he had the same tube that he HATED before shoved back down his nose. And I can't say I blame him, I would be just as mad!

For the majority of that day he did AMAZING!!! He was finally able to sleep comfortably for long periods of time. I was so happy to see him so happy & comfy!

At about 5pm Jason got to the hospital to trade me (me go with the girls & him stay here with Ryker) I knew that I wasn't ready to leave Ryker, but I NEVER am ready to leave any of my kids no matter which end I am coming from!

My girls, Joan & Myself decided that we would go to a close by park so we could spend sometime outdoors before it got dark & as we were there having a great time riding bikes, playing at the playground & waiting in line for face paint, when Jason called me & said that things weren't going very good & I should probably head back to the hospital. I asked why, what was going on? & he said "Ryker just held his breath really bad, so bad that the nurse had to push the code button- Babe, it scared me so bad!" My heart went into a panic, I shouldn't have left! Why hadn't I been there?!!

By the time I got back to the hospital Ryker looked like his normal self & seemed fine. But my poor Husband did not! He was so shaken up by it all my heart was breaking for him! He said to me "I honestly thought that was the end, I thought he was gone....I was so scared!!" Hearing all that had happened made my stomach tie in knots....I wish so badly that I hadn't left, that I had been there for my sweet boy & that Jason hadn't had to go through that alone! But I know that I have to & want to spend time with my girls too, its just so hard! I have never felt so torn in all my life!

A little later after Jason had stepped out for a moment, Ryker's nurse came up to me & said "I feel horrible that your husband was here for that incident! It was so scary for me, I just cannot even imagine what he was going through at that moment! I am so sorry that he had to see that!" I don't know all that happened during this incident, Jason & I have talked a lot about it but I don't know that I would be able to handle knowing all the details! I have seen my sweet baby go through so much in this process, I don't know how much more I can take! That night Jason & I decided to have us both stay at the hospital with Ryker & Joan stayed at the hotel with my girls.

The next day we had two more of the scary "code" incidents..... It is the most horrifying & helpless feeling to be watching your sweet baby sleeping peacefully then suddenly out of nowhere he starts crying with his eyes still closed, then his cry instantly goes from soft to screaming, then within a matter of seconds the sounds of his cries fade away & his face turns from a soft pink to a dark shade of purple...then his whole body goes limp....and during this whole process I am holding up his head, patting his back & crying out his name begging him to please take a breath! Then before I know it everyone from the emergency team is running in the room pushing Jason & I aside so they can save our babies life once again. It is beyond words the feelings of helplessness & fear that runs through your body in this circumstance!! Just like so many other things that have happened through this process- I NEVER want to experience that ever again, especially so many times & so close together!

The next day Tuesday May 22nd Ryker had a pretty good night & I had just left his room for maybe 15 minutes to go pump. While I was away I posted on Facebook-

Ryker had a much better night last night. No more "code" spells (praying it stays that way!!) As long as he gets consoled instantly when he is upset he doesn't get into those not breathing spells. He still seems to be pretty uneasy & uncomfortable at times so I am trying my hardest to get them to allow him to eat today in hopes that hunger pains is part of the reason why he gets so sad at times :( He is also still on High Flow to help him breath, but this forces a lot of air down into his belly that we think is causing extreme gas....So between the no food & lots of gas he gets really upset where he cries so hard he forgets to breath. (because he is still getting used to the breathing on his own part) Please pray that he will have a better day today & that he will be able to get more comfortable so he can rest!

As soon as I got done posting this I walked back to Ryker's room only to see 10+ people gathered in his room. As soon as I saw this I ran down the hall to his room & asked what was going on. The EP (Electro Physiologists- aka Pacemaker experts) Team was in Ryker's room & they pulled me aside & told me that they were there doing a routine interrogation on Ryker's pacer when the interrogator sent Ryker's heart into something called "A-Flutter" Basically A-Flutter is when the Atria of a heart is in an arrhythmia of 300+ beats & the Ventricle is being paced normally. The scary part was that Ryker's Atria was beating at 400 beats per minute & they had tried all the normal things to stop it & it wouldn't stop. Obviously someones heart cannot beat at 400+ for very long so they had to do everything possible to try to get it to stop. So after many more tries failing the Attending Dr. came up to me & said "I am really sorry to tell you this, but the only way we are going to be able to get Ryker's heart out of flutter is to use defibrillator paddles on him." I had no idea what those were at the time & I wish I still didn't! They are the electric paddles that you see on the movies when someone goes into cardiac arrest & they have to jolt the person's chest with the paddles...life saving but horrible!

When I found this out I was a mess!! How could they use something like that on a tiny baby without it hurting them?? The Doctor told me the only way they could use the defibrillator paddles on him was to heavily sedate, paralyze & reintubate him. I didn't even know what to say, I knew that they had to do it but...NO!!! He just got extubated & off the heavy sedation drugs & now he has to go back? PLUS use electric paddles on his tiny little chest?? I was shaking...it was just too much! He doesn't need anything more! No more setbacks! I wished so bad that Jason could be there with me, I was so scared!

In a panic, faster than I ever thought possible, they got Ryker all sedated, paralyzed, & intubated. He literally had as many nurses and doctors around his bed as there possibly could be. It was such a surreal time with so much panic & people everywhere, I just stood there in shock watching helplessly.
The Nurse Practitioner (her name is Caroline & she is AMAZING!) saw that I was just standing there in total shock (I cannot even imagine the look on my face) & she came over to me, put her arm around me & walked me through every single second of everything that was going on. It helped me so much & she was so sweet about it, just letting me know how much she truly cares!

When they brought in the defibrillator my heart sunk in my chest...I never thought I would have to see them in person, let alone what I was about to see. And just the fact that they have tiny little paddles to use on babies just makes so so sad! Babies shouldn't have to go through all this!

One of the nurses came up to me as they were getting the defibrillator ready & said "Mom, you don't have to be here if you don't want to you know" & I said "I know, but I couldn't leave Thank you though" & she said "He is going to be fine, it's you that I'm worried about! We have given him versaid which will make him forget any of this ever happened, but your memory we can't wash clean after you see what your going to see & I just don't want you to have to go through that." I said "I know, & I appreciate your concern, but I am not going anywhere, I would feel 10x worse being away from him."

I stayed & I am glad that I did....but I do wish that I could wash away the images from my memory! It is just like they show in movies (not as big of an electric pulse on the babies as the adults) they charge the defibrillator & yell "CHARGE" then once its all charged they ask if the EP if he is ready & then they yell "CLEAR"........It's HORRIBLE!!!! It was the first time in my life that I honestly felt my heart come to a complete stop for a split second...I don't know if it was all out of fear, but as soon as the jolt went through my sweet baby's body- I felt it! It shocked my whole soul & I ached for him! Another unexplainable moment that I will never forget (although I would love to) in all my life!

It took about 20 minutes of tests to find out weather or not the defibrillator had worked, and Thank you God, it did! I don't know if I could have handled seeing that again!! After that they did a thorough sedated echo to get a good look at his heart & its function since the last operation.

Later Jason & I met with Dr. Marx after he had gone over the echo & his exact words were "Ryker's heart looks extraordinary!! His heart is functioning as good as it possibly can be with his anatomy!" YAY-YAY-YAY!!! It was the best news we had heard in a while! He also said that the AV valve that used to be considered "mild-moderate" leak is now "little to no" leak :) & that the PA band tightness is perfect! Thank you Dr. Marx & especially Thank you Dr. DelNido for being such an amazing surgeon!!!

After lots of tests & much needed rest for Ryker, he got extubated a few days later on the 24th. Since then he has been doing amazing! Today (May 29th) He is almost up to full feeds & tolerating it very well through his NJ tube. Just in the last two days he has been able to get his arterial line, his RA line & the IV in his arm all removed! Also, the majority of his meds have now been moved from IV to NJ :) I am so proud of this amazing baby boy! He continues to inspire & amaze me ever single day!! I love you more than words can say sweet Ryker!!

Right after his first extubation this time around- Finally getting some rest!

 

After extubation the second time- Such a sweet baby!!

Here is my sweet-Smiley baby boy tonight!! LOVE THIS BOY!!!!

Surgery Time...Round 4 :(

My sweet baby boy all snuggled in my arms just minutes before they came & took him away for his surgery. He is so SWEET!!!!

On May 17th the day had come for Ryker's 4th heart surgery....:( My poor baby has been through way too much in his short little life!! 4 Heart Surgeries & 2 Caths at only 2 months old!?!?!? That is just way too much!! No one should have to go through that much in a lifetime, let alone in just two short months! At this point Jason & I had felt like we had just gotten our smiley happy baby boy back! Like in my last post there is a picture of him smiling, he had finally gotten to the point where he did that often & now he has to go back to the O.R :(

When they came to get forms signed & when the surgical team took him away I felt like "okay, this is our 6th time doing this...maybe it will get easier this time around"..........WRONG!! I don't think it will ever get any easier having them tell me all the things "that could happen" then sign my baby's life away regardless of all that they had just warned me of & then walk down to the DREADED 3rd floor with a team full of people that as soon as we hit a certain point they are going to tell me to kiss my baby goodbye AGAIN! This was the first time that I wanted to snap back at them & tell them "No, I don't want to, I am sick of this! This isn't fair!" Why does MY baby have to be the one with the most complex heart? Why can't he just have the original diagnosis that he was given back at my 20 week appointment (Hypo-plastic left heart) That diagnosis was scary enough & I had NO IDEA what his ACTUAL diagnosis really was!!! My poor baby has been through SO much & I wish with all my heart I could take him away from all of this & make him healthy & perfect so he could deal with simple things that babies have to deal with like- weather or not he is hungry or if he needed his diaper changed or for hell sakes the "dreaded" colic! Please God heal him or put me in his place so he doesn't have to go through all this...

I just kept praying that all they had to do was the simple tightening of the PA Band. Dr. DelNido had said before surgery that his plan was to go in, tighten the PA band & then do a specialized kind of echo that goes within & look at his AV Valve regurgitation & see weather or not it had gotten worse, if it hadn't he would sew him up & be done, if not he would have to put Ryker onto the heart & lung machine & then repair the AV Valve which obviously makes the surgery 10 times more serious especially because of the fragile state that Ryker was in going into surgery.

At 11am (he went in at 7am) Jason & I got an update from the liaison nurse, she said that they had just looked at the valve & it had gotten worse & that Ryker would soon be placed on bypass so Dr. DelNido could repair the AV Valve. Jason & I were sick! Suddenly this surgery went from simple to MAJOR & we were terrified!!

As Jason & I sat in the dreaded O.R waiting room I begun having flashbacks of Ryker's very first surgery. All the fears & what if's came rushing back....I suddenly was so unbelievably overwhelmed with anxiety I was panicking! I felt like I had just been hit by a train & I couldn't pull myself out of it for anything! We were both so scared!!

As much as I want to (for my own reasons of getting it out & coping with it all) I just can't go back to that moment again...just like the waiting period of his first surgery. It's just something that is so unexplainable that there is absolutely no words to describe the feelings & emotions we went through during these hard times. And even if I did try to write it in words it just wouldn't do it any justice & I would erase & rewrite over & over til I gave up. It's just one of those things that unless you have been there, not just with yourself, but with your very own sweet child, you just can't understand & if you don't than be SO grateful that you don't have to & pray that you never will have to!

Around 2pm we got the news that surgery was done, they had just pulled Ryker off of bybass & that Dr. DelNido would be in to talk to us soon. As soon as Dr. DelNido sat down by us & told us the amazing words "surgery went well" I instantly had the best feeling of relief!!

Dr. DelNido said that Ryker handled surgery better than he has with any of his surgeries in the past :) :) He even said "Ryker is doing good!" Now this is coming from Dr. DelNido that never uses the word good, its always "he did okay" So that was GREAT to hear!! He did fix the valve & he said that went well & that the band tightness looks perfect! So all is well with our sweet Ryker & his 4th heart surgery!! Thank you God, for hearing & answering our prayers!!

Going back into Ryker's room after surgery I was absolutely terrified!! Every other time before coming back from either surgery or a cath it is literally shocking to see our sweet baby in the state that he returns in....however, this time around, as much as it was so hard to see him take 10 steps backwards again, he looked REALLY good!!! His skin color was not ghost white, it was a good flush pink tone & looked very "normal" & he didn't look really dehydrated or mangled at all. He did have the expected surgical misc attached all over that is always so very hard to see, but his overall appearance was great! It was such a relief for both Jason & I.

From there we just couldn't wait to get him back on the right track & get this sweet baby extubated & eating again soon!! :)

-A Relaxing Week-

As of Wednesday May 9th Jason & I decided that it would be best for both us & our kids if we would start taking turns being at the hospital with Ryker & being at the Hotel with our girls.

This arrangement has been SO good for all of us! Before this I hadn't really been outside the hospital walls for over 2 months besides the night I stayed with my kids the first night they got here to Boston & a few other little walks & food stops. So as hard as it was for me to let go & leave Ryker every other night I knew he was with his Daddy & my girls needed me too! Plus- then Jason got some one on one time with Ryker that he had never had before. So it has been great!

My first night with just me & my girls we got the stroller all packed up & went on a long walk out in the warm fresh air. I didn't realize how much I missed & needed the fresh air!It felt amazing!! The next day the girls & I found the coolest park to play at, its HUGE!!! So we had a great first 24hrs together & looked forward to many more!

From then on I would spend 24hrs at the hospital, then 24hrs with my girls & vis-versa for Jason. The only problem was that this way Jason & I had no time together at all besides the quick switching of the kids & a kiss goodbye. But as long as our kids are good, we are too & we know it will get back the way we like it soon enough.

After many tests & trail-n-error with Ryker both Dr. Marx & Dr. DelNido decided that the only way to get Ryker back on the right track & eating good again was going to be surgery....:( This of course was not what we wanted to hear, but we knew they were right. We didn't know yet when the surgery would be, we just knew it would be the week of the 14th. Dr. DelNido decided he was going to bring Ryker's case up to the board of Cardiologists at the conference on Tuesday the 15th & we would have a surgery date until then.

With this news we asked Joan (Jason's Mom) if she could come out to help us with the girls so that during his next surgery we could both be there for Ryker. Joan got a flight out as soon as possible. She is so amazing, she pretty much just quit her job, left her life in Montana behind & came out here to help us because she knew that's what would help both us & our kids the most, with no returning ticket so she could stay as long as we need her help! :) She is so caring & so helpful! I am SO grateful that I have a Mother-in-law that truly cares unconditionally the way she does! Thank you from the bottom of my heart Joan! We love & appreciate you more than you could ever know!!

Here are a few pics of our week-

He LOVES his mobile :)

Braylee took this pic :) She is my little photgrapher

My sweet angel baby!!!

Ryker & Daddy's first night together :)

All clean :)

My Smiley~Happy Boy!!

My beautiful girls on the playground

My sweet Addi loves the sunshine!

My beautiful Bray! (I am so scared for when she grows up...she is way too pretty!!)

Much Needed Family Time :)

On Tuesday May 8th we only had one day left with our boys before they were leaving back home to Utah for a while :( So we decided to have Grandma Watson stay with Ryker while we had some much needed family time.

We went to the New England Aquarium & we had a blast! It felt so good to get out of the hospital & have some good quality family time! I just wished the entire time that our sweet Ryker could be out of the hospital & there with us! I can't help but feel guilty every time I am away from him, especially if we are having good family time, because we are still missing a huge part of our family when he is stuck in the hospital. But this is why these things only happen few & far between cause I want to be there for my sweet baby as much as possible!

On Wednesday, the day after our aquarium trip the boys had to go back to Utah....This was SO hard on all of us! Every day building up to this day Braylee would say "Mom, how many more days til my brothers have to leave?" & when I would tell her how many she would get tears in her eyes & say "I wish so bad that they didn't have to leave Mom, I want us all together as a family always!" I would tell her "I know baby, but we will all be back together again soon & we just have to take advantage of every second we have them here with us!" Every time we went through this I had to fight back the tears, realizing that this isn't only extremely hard on Jason & I but it is ripping my girls hearts right out...I wish this could be an easier process in SO many ways! We are going to miss our sweet boys more than words can describe!!! I wish so bad that the near impossible task of watching my sweet tiny baby in the hospital was my only worry & hardship! Having a baby in the hospital is WAY TOO MUCH to deal with on its own...let alone with all these other obstacles of being clear across the country from our other kids, family & support system....Then trying to find a new home across the country & leaving everything us & our kids had at home behind all added on as well.

I do have to say though that I have been SO unbelievably blessed regardless of what we are going through...I know that there is always someone out there that has it harder no matter what we are going through! I am SO grateful that I still have all 5 of my beautiful children even if two of them are across the country & that I have my supportive husband that is here by my side helping every step of the way & SO grateful for all the love and support we have from our family, friends & many, many others whom don't even know us & support us through it all! & last but not least- that we are here in the top children's hospital in the world getting the best help for our baby possible! Thank you God for all my MANY blessings!!  

Here are a few pics of our time together...

Looking at the penguins

This aquarium was awesome! & my kids LOVED it!

Trett taught Braylee how to take pictures with her phone...she is now a pro :)

Jadd is such an AMAZING big brother!!

My girls are SO lucky to have the BEST big brothers in the whole world!!!

I have the best kids ever!

Addi loves her Daddy!

Love them all SO much!

Looking at the sea turtles

Touching star fish

My beautiful Addi

LOVE THEM!!!

SO GLAD we had this time together!!1

Trett taking pics of the big tank...he is our little photographer :)

Toughing the sting rays

Even Braylee toughed the sting rays...her first time she has dared to :)

Miss these boys!!!

We miss & love you SO MUCH Trett & Jadd!!! SO much more than we can even begin to put into words! Can't wait till you both can be back here with us again in July!! :)
 

-Cath Lab-

On Monday May 7th (Ryker's 2 month Bday) They decided that the only way to really get a good look at his heart & the pressures of the blood going through it was to do a full catheterization. So around noon they begun to prep him. Once again all the anesthesiologists & surgical team members (by now they are all my pretty good acquaintances whom I know most of them by name) came in to get the consent forms signed. I thought it would be easy this time, because "its just a cath" as I kept telling myself.... But it was just as hard as it was the very first time around! As they went over the "what if's" & what COULD happen I was sick all over again! The pit in my stomach was back & I was fighting back the tears all over again!

Before they took him away they let me, my mom & my girls go into Ryker's room (usually you can only have 2 people in the room at a time) so we could spend a little time with him before he had to leave to the cath lab. It was perfect! My girls were so cute with him. Kept kissing his head & telling him over & over how much they love him & how tough of a baby they think he is. :) They are the best sisters in the whole world!!

The team came & took him away by about 12:45 & once again I had to kiss my sweet baby boy & tell him goodbye praying that God would watch over him when he is away from my arms! After 5 long hours of him being gone (thank goodness this time around I got to keep my mind occupied by my sweet girls instead of pacing back & forth in the waiting room) I got the call that I could head up to the CICU room.

Walking into Ryker's room is still so surreal to think about....so much kayos & confusion from the 10+ people trying to get him situated, so many people around that I couldn't even get to or see my sweet baby. As soon as I saw him my whole stomach begun to twist in knots. Once again my sweet boy was intubated, completely sedated & ghost white. My heart was pounding & the enormous pressure in my chest was rushing back.

As I was trying to get to Ryker one of the nurses in passing mentioned to me that Ryker wouldn't be getting his sedated echo done like they had originally planned for right after his cath until tomorrow morning. I instantly was overwhelmed by this because they had told me that while he was sedated after his cath they would do a thorough sedated echo to cover every base before making any big decisions. So I asked why & said "they are really going to sedate him AGAIN in the morning, rather than just doing it now when he is already sedated?" She snapped back & started saying something like "based on the results of his echo...." Then the Attending Doctor stopped her in her tracks & said in a stern voice "Mom does not know the results of the cath yet...we need to talk NOW!" The nurse then followed him out of the room wear he lecture her for a bit. My heart was pounding...what did that mean "Mom does not know the results of the cath yet?" What are the results??? & do I want to hear it? Am I going to be able to handle it?

The Attending Doctor came back in the room & said "Mom, can we talk in another room please, I would like to show you some things" As I begun to walk down the hall with him the pressure in my chest was building uncontrollably & I could barely breath! Could I handle hearing the results of the cath all on my own without Jason here? I begun to panic, I needed Jason here by my side, I didn't know if I could handle it all on my own & even if I could, would I be able to relay it back to Jason in a way he could understand it without sobbing uncontrollably?

As we walked in a little office we met up with the Doctor that did Ryker's cath. As he introduced himself to me I knew it was not good. After Ryker's other cath I never met the cath Doctor....what was going on?? The Doctors turned off the lights & put up some images of Ryker's chest on the screen & told me that Ryker's results were a little hard to explain & that the best way to explain them were to show me the cath pictures & video.

After being in the room for about 20 minutes & being walked through all the images of Ryker's cath, the Doctors told me that Ryker has something called Pulmonary Vein Stinosis. All I could think was "Oh God...please no, not PVS...not my baby!!" I didn't know if I could fight back the tears any more! The Attending Doctor asked me if I knew anything about PVS & as I started to answer I begun bawling uncontrollably...I buried my face in my hands & tried so hard to breath & to stop crying, but with the amount of pressure I had on my chest I knew that if I even tried to speak again all that would come out was tears. So I apologized & walked out of the room for a moment....

After being out in the hallway sobbing to myself for a moment, I was able to pull myself back together enough to go back in the office. I apologized to the Doctors & said "I don't know much about PVS, but what I have read is that it is basically a death sentence for Heterotaxy babies" At that point the Cath Doctor excused himself & the Attending Doctor said "Well, I am not going to lie to you & say that you are wrong, but I will say that every case is different" That was not what I wanted to hear! I wanted so badly for him to tell me that I was wrong & that what I had read wasn't the case....but he didn't.

After speaking with him for sometime I walked back to Ryker's room in tears, just wanting to get back to my baby & be by his side. As I walked up to my beautiful boy I placed my hand on his head & I was shocked! His soft spot on the top of his head was so sunken in that it actually pulled a indent down the center of his forehead. I panicked & called the nurse in, she said that she had noticed it as well & that ultrasound was headed up to do an ultrasound on his head to make sure everything was okay. She explained that after a 5 hour cath babies can end up extremely dehydrated & this is a result of dehydration. Ahhhhh!!!.....not that my sweet boy didn't already have enough to deal with, but now he may have something wrong with his head because of extreme dehydration!?!? My poor baby!

Just then Dr. Marx came in & he didn't look good. He said "Mom, I'm sure you have already heard the results but I wanted to go over everything with you myself. But let me start by saying I am so sorry!!" He explained that Ryker's PVS was in his two left Pulmonary veins & that the top one was considered mild PVS & the lower one was considered moderate PVS. He said that as of now the PVS is under control because of being ballooned during the cath, but no one can say weather or not it is coming back & there are only so many times they can cath it to fix it. He said "I am not going to deceive you & say that this isn't something you need to worry about, because it is! PVS is a major thing! But I also don't want to get your hopes up by telling you that about 5-10% of kids don't ever have it come back after the ballooning & Ryker may or may not be in that 5-10%." He also said that he is concerned because although this is a huge thing to find, it has nothing to do with the pain that Ryker has been having, so there is still a big problem that they need to find the source of. After speaking with Dr. Marx about this all for a while he put his hand on my shoulder & said "You know, when you & Ryker came here from Utah & we saw the extreme complexity of Ryker's heart we had very high hopes, but sometimes there is only so much we can do."

I went over to my sweet sleeping baby, laid my head by his chest & lost it!! I felt like I was slowly losing him! How is this all happening?? Just a week ago we were on the recovery floor talking about discharge & now we are here...I was losing my mind, I didn't know what to think anymore. I just knew I had to do everything possible to make sure my sweet boy made it through all this! He has come too far to have anything stop him now...he is my little miracle baby & will continue to amaze people through all of this, I am sure of it!!!

I sent my Mom home with the girls & called Jason (who was back at the hotel with the boys) & asked him to come to the hospital as soon as he could. I needed him here with me so badly! I just wanted to lay in his arms & cry myself to sleep!!

As soon as Jason got here Dr. Del Nido walked in the room. I was SO relieved to see his face, I had so many questions for him that I knew only he could answer. He went over everything with both of us. He had a sense of hope in his voice that I hadn't heard from any of the other Doctors I had talked to that night. It was the biggest sense of relief for me! He said that he is not worried about the PVS unless it presents itself again & that Dr. Marx will do a full sedated echo tomorrow (so keep him sedated & intubated through the night) & hopefully be able to adjust a few things with the pacemaker so that whatever is causing his tummy issue will be found & fixed & if they can't fix it he will operate again on Ryker within the next week or so to get him back on the road to recovery. Although surgery was not the word I wanted to hear again, it was a potential answer to a problem & if that is the only way to get my baby out of pain & back on the road to recovery that was all I cared about!! I was just so happy to have answers!

I was SO grateful he came in & spoke with us! I had been through hell with all the other Doctors & nurses feelings & comments of hopelessness & then Dr. Del Nido came in & helped my level of sanity more than I can even begin to say!

I stayed in Ryker's room all night & didn't leave his side. It was one of those nights that I just wanted to watch my sweet baby sleep. He is so beautiful & so perfect! & such a tough little miracle boy! I am so blessed to be his Mommy!! 

Over the next week they did the sedated echo along with many other tests & adjusting of his pacemaker. I did speak with Dr. Marx again & he apologized for making me feel hopeless, he said he just did not in anyway want to get my hopes up. He told me about two of his own patients that have had PVS in pretty close to the same form as Ryker that they are now 2 & 3 years old & their PVS has never returned....:) So lets just pray that Ryker is going to be in that small percentile!! He has defied the odds so many times before that are WAY bigger odds than this one & I mean he is a baby that is literally 1 in a MILLION so it should be easy for him to fit in that 5-10% of babies that the PVS does not come back & that is all I can focus on right now! & be SO grateful for every single second that I have with this sweet boy!

Today is Monday the 14th & as of now they have not decided weather or not to operate. I spoke with Ryker's cardiology team this morning & discussed a few things along with the feeding issue (they have not fed him since last Thursday because it was continuing to cause him so much pain to do so) They have just had him on IV nutrition for 5 days now & he is gaining about 12 grams a day on that so they are going to up it in hopes that he will gain between 20-25 grams per day. Right now Ryker weighs 7lbs 2oz at 2 months old. He needs some meat on his skinny bones! But they are not planning on starting his feeds again until they know weather or not they will operate this week. Their plan is to discuss Ryker at the Cardiology Conference tomorrow morning, which is the entire board of Cardiologists, so that Ryker has as many brains on his situation as possible to make sure that the perfect decision is made just for him. I am so grateful that we are in a hospital that they will make sure that every single base is covered to make sure my baby boy gets the absolute best care possible! Thank you God for leading us here!!!

Back to the CICU

The last 4 days have been absolutely AMAZING because of having my kids here....yet SO INCREDIBLY hard because my sweet boy has been sent back to the CICU.

Early Friday morning I got a call from Ryker's nurse saying "I'm really sorry Rachel, I didn't want to have to call you, but Ryker isn't very happy & has been miserable since about 2am. I shut off his feeds again because he just didn't seem to be tolerating them & now we will be having general surgery come take a look at him to see if there is something else that we are missing." Shortly after that I had to speak with a general surgeon to see if anything else needed to be done to help Ryker from his end.

My heart sunk....I had just had the BEST night with my kids, yet instantly I begun feeling so guilty that I had left Ryker! I knew he was with my Mom & that she would help in every way possible but I still just knew I needed to be there for him!

By the time we got back to the hospital they had already sent Ryker & my Mom back to the CICU & begun running numerous tests on his digestive tract to hopefully find some answers to his pain. I was devastated walking in there seeing my baby back in the place we had just pulled him out of! We had intentionally waited until Ryker was on the floor to finally get my kids our here & now that they were here & we were all so excited to finally all be together as a family, Ryker was back in the CICU & because they only allow 2 people in the CICU room at a time we knew we wouldn't be able to spend anytime all together.

My first instinct was to be so angry with myself for leaving Ryker, thinking "If I hadn't left this wouldn't have happened" But then after a while I came to peace with it all telling myself, Jason & my Mom numerous times that this has happened for a reason because I KNOW in my heart that I was suppose to leave to be with my other kids that night & for whatever reason Ryker is trying to tell us something else that we wouldn't be able to see any other way but this. We just have to be patient & listen, there is a reason for this.

After numerous tests on his digestive tract came back negative for malrotation, blockage or worse than mild reflux. The Dr's began to wonder if it was actually his heart function that was causing his tummy to hurt. From there they did an echo, EKG & numerous other tests along with many blood draws, followed by blood transfusions to try to find an answer.

By Saturday morning there were still no answers. The Dr's told me that if they still didn't have any answers by Monday they would have to send Ryker to the Cath Lab. Through this whole process I have begun to despise weekends!! Every time the weekend comes everything seems to be put on hold & all the Doctors that I would like to talk to about anything going on are off for the weekend. So after being a little frustrated about having to wait til Monday to get any answers I decided that I needed to take this time & focus on my 4 amazing kids that were here & spend some good quality time with them!

I spent another night at the hotel with my family while my Mom stayed with Ryker. It was great because I was able to have a good amount of time with everyone while I was there. I spend the first half of the night snuggled up with my girls & then half way through the night I moved into the other bedroom to snuggle up with my sweet Husband since we weren't able to have much "us" time lately, then the next morning I was able to have some good quality time with my boys just hanging out & talking while everyone else was still asleep. It was a great time with everyone!

Sunday my boys- Jason, Trett & Jadd got an amazing opportunity to go to the Red Sox game & sit front row in the owners seats. As much as I wanted so badly to go with them, I knew it would be a great chance for them to have some good quality "guy time" :) I was so happy for them! My Mom & I stayed at the hospital with Ryker & my girlies. For part of the day the hospital was putting on a Family Fun Day with all sorts of fun things for the kids, so my girls had a blast.

By Sunday night the attending Doctor of the CICU told me to plan on Ryker going into the Cath Lab by 10am tomorrow morning. As much as I was glad that we would hopefully soon have some answers as to whats going on with my sweet baby, I was so sad for it to! I hated every time he had to go anywhere to get things like this done. I just pray it all goes well!

 Here are a few pics of the kiddos time here so far... :)

Ryker with his biggest brother Trett :)

Addi loves her baby!!!

Braylee was SO happy to see her brother again!

 

 

 

Sweet Jadd talking to Ryker

LOVE THIS!

My boys at their Red Sox game

Bray, Jadd & Addi LOVE the musical stairs!

Playing on the playground with Daddy!! :)

My two little princesses

Communicating in ways we may never know :)

Addi, Jadd & Braylee all on their assorted electronics :)

Addi with her face paint

Braylee painting a monkey for Ryker

Reunited after 53 days!!!!! :) :) :)

The day had FINALLY come!!! My babies were going to be here in Boston!!! :)

It had been a really rough week for Ryker, but thankfully all day today he was great! I felt like he was finally looking & feeling better & coming out of whatever it was that he had going on. I was SO excited because this meant that I would not only be able to go to the airport to surprise my kids, but I also talked to my Mom about her staying the night with Ryker so that I could snuggle with my kids! I was SO excited I was literally crying every time I thought about it.

I had requested my favorite night nurse to make sure that Ryker was taken care of perfectly while I was gone. Then Jason & I were on our way! The whole way there I had the normal anxiety of leaving Ryker but I knew that at this point Ryker was okay & my other kids needed me more.

As soon as we arrived at the airport my heart started pounding! I don't know that I have ever felt so anxious & excited at the same time in all my life! As we walked through the airport trying to figure out where they would be coming out of I was literally shaking....I could hardly contain myself!

At the top of the escalators was an area that we could wait for the kids to come out, however the area that they would be coming out of was a very long corridor that was guarded by security to not let anyone in only out. My first thought was "as soon as I see them walking down that long corridor, I don't know if I will be able to stop myself from running right past the security guards to get to my babies!" So Jason suggested that we go back down the escalators & wait there so I didn't get hauled off to jail ;)

We waited for sometime. It felt like an ETERNITY!!! Then suddenly I saw the bottom of Addi's jammy dress & Trett's legs coming down the escalator....There they were, they were REALLY here!!! A day I was praying for, for almost 2 months!!

I ran over to the bottom of the escalators, then I could see all four of my sweet kids standing there & all four of their eyes got big :) I said "Addi!!" & She looked at me with her big beautiful eyes, put her two little fingers in her mouth & said "Mommy!!" with tears in her eyes! I instantly lost it, tears began to rush down my cheeks! Braylee looked at me, started to push past Trett to get to me & said in the sweetest voice "Mommy!!" I will never in all my life let both there voices saying my name that first time ever leave my memory! It was priceless!!!

The escalators were not moving fast enough so I begun to step onto them to get to my kids faster, then I instantly realized that I would end up hurting not only myself but my kids in the process, so I stepped back down & as soon as they were close enough to grab I swept both Addi & Braylee up in my arms & held them with everything I had!! I was sobbing! It was the best moment in my life! I had missed them more than I could ever express in words!

I held both of them all the way out to the car. Both of them constantly saying "I love you so much Mommy!" & Addi's adorable baby voice saying "You my Mommy!" I would reply by saying "You my Addi" & she would just smile & hug me so tight! I love these girls more than I could ever say & I am so grateful to have them in my arms again!!!!

If it wouldn't have hurt both my kids & I, I would have ran right up the "down" escalator & held them!
 

The best feeling in the world!!!

ABSOLUTELY PRICELESS MOMENT!! I will never forget it in all my life!!

Back together after 53 days

Love this moment!!

Recovery Floor :)

Monday (April 23rd) morning finally came!! One part of me was so excited for two reasons- because Ryker was going to the recovery floor today & that Jason was headed to Utah to pack up our stuff so we can get our kids out here....but then the other part of me was sick! I hated that Jason had to leave & I would be here alone. But I knew that was the only way to get our family back together so I tried my hardest to be strong.

When it came time for him to go, Jason said bye to Ryker telling him "please be so good for Mommy buddy" I had already told myself I wasn't going to cry because this was going to be such a good thing for him to get there & get back quickly....but it was a lot harder than I thought. I walked him out to Chris' car & as I hugged him goodbye I about lost control of my emotions, so I told him quickly how much I love him & I walked away. I so badly didn't want to cry because this was a good day, a day I had looked forward to for such a long time- yet I just don't know how many more times I can handle saying bye to the people I love most!!

As I headed to Ryker's room Lori came into the hospital to spend time with me while Chris took Jason to the airport. She asked me how I was doing & I had to fight back the tears...I wasn't okay & I knew I wasn't & I couldn't hide it. Lori like always was so sweet & helpful, put her arm around me & helped me through it! I don't know what I would do without her at times. She seems to always be there when I am on the edge of a breakdown...always crying to her & trying my hardest not seem like a complete crazy person while I'm doing it :) Thank you Lori for being such a good friend!!

Around 3pm we were in our way to the recovery floor!!! Not only did we get moved...but we got moved to our own room :) Most the recovery rooms are two patients with a curtain in between. So I was really excited to have peace & quiet, especially after being the CICU for 5 weeks!

That night was a pretty mellow one, but the next night Ryker was just not doing good! He had a fever that just wouldn't go away (he had it for a few days, but it was getting progressively worse) & he just seemed so uncomfortable! At about 5am after hours of trying my hardest to comfort him, his nurse came in & said "you need to get some sleep, I will take good care of Ryker, you lay down." So after sleeping for about an hour & a half I got up & went to the nurses station to get Ryker from the nurse, when I saw him I was sick! He was so comfy in her arms, however his face had a grey tone to it. It scared me so bad!! He didn't look good! The nurse told me that's how he had looked all night, but it took for me to be away from him for a short amount of time for me to see it.

After a few hours of Doctors & Nurses coming in to look at him to see what was wrong, they almost sent us back to the CICU. But apparently Ryker heard what they were saying & proved to them that he did not want to go back, so after being on an antibiotic for what they thought must have been an infection causing the fevers, his color came back & he looked amazing! Yeah Ryker!!!

The next day he had to get a blood transfusion to get his red blood cell count back up, because of so many labs being done over the last couple days. After the blood transfusion he was a whole new baby! He had pink back in his face & was smiley & happy as could be!!

The next couple of days Ryker did amazing! He was bottle feeding really well & they even let me nurse him! :) On Saturday they begun discussing getting his Broviac line (kind of like a PICC line but in his belly for IV meds) taken out next week so we could go home a few days after that! It was really happening! We were going to be able to go home in a little over a week!

On Saturday afternoon it was an emotional time because I knew my girls at home were having to say bye to their Daddy again. He had gotten to Utah on Monday & they got there on Thursday, since then they have never wanted to leave his side! Loving him & hanging on him as he was trying to pack up our house. Poor Braylee found out he was leaving on Saturday & sobbed to him begging him to let her go with him. Knowing it was going to be a 40 hour drive (with no stops) there was just no way Braylee could go. She was devastated!! So once again my poor girls had to say bye to their Daddy :( But at least this time they knew that they would be with us in only 5 days!!! :)

Sunday began with my poor baby boy screaming every time anything would go into his belly. Today is Tuesday (Yes, I am finally at current time:) & they are still trying to figure out why this is happening. All day yesterday was a sad day! He was crying so much & in so much pain that I couldn't help but cry myself! I had many Doctors coming in trying figure out what was wrong & trying to change things, but everything what they were trying to change just didn't make any sense to me, so I finally became a total "Mama Bear" & told them all that they were wrong & that it was his tummy & had nothing to do with his heart & I wanted to speak with the GI (Gastrointestinal) Department NOW!!

Now after speaking with the GI Team we have a plan on how to hopefully get on the right track to fix little Ryker's tummy problem. So I pray that problem will soon be in the past so he can be comfortable & happy again!

On Thursday....THIS Thursday (as in 2 days from today) at 10:30pm all 4 of my kids are flying into Boston with my Mom!!! I am SO excited to see them I can hardly handle myself! Thursday cannot come fast enough!

I love these eyes!!!

Wearing my favorite jammies! Putting him in them made me cry a little cause they are the ones he wore the night before his surgery & I am just so grateful to have him in them again!!!

He is just so beautiful!!!

Sleepy boy! His scar is healing SO good!!

My handsome boy after getting his oxygen tube out :)