Recovery Floor - Round 2

On June 7th, After 5 weeks of being away, Ryker was moved to the recovery floor!!! 

It was a long awaited day! Thinking back to 5 weeks ago (last time on the floor) to the Friday morning that the NP had told us that Ryker's broviac line would be removed on Monday & we would be home within 48 hours after that, makes me a little sad thinking that if we hadn't have had this hurdle we would have had Ryker in the comfort of his home (our current home of course which is a hotel room...but still home!:) for 5 weeks now. But at the exact same time I am SO grateful that we had that hurdle while we were still in the hospital & not in a panic at home, especially with finding out about his PVS & that in fact he needed another operation!! Obviously Ryker knew there was something else wrong & that was his only way of telling us :) So-SO grateful things have all happened the way they were suppose to because we still have our beautiful baby boy here with us & God is wonderful!!! :)

So each day we have been here on the WONDERFUL floor my sweet Ryker gets better & better! His skin tone is slowly going back to normal & his smiles & enthusiasm are coming back. He is the sweetest happiest baby regardless of all the horrible things he has gone through! Each day the nurses & Doctors have come in the to see him & they are always so pleased with how well he is doing & how he is always so alert & happy :)

Braylee & Addi were able to come to his room TOGETHER for the first time, that was such an amazing feeling to see them both just be together admiring him, kissing him & of course wanting to maul him to death :) His sisters love him SO much & the both LOVED this opportunity!

From June 9-12th Jason's sisters came to Boston to visit. It was SO great to see them all. I loved every second that they were all here & I am SO grateful that we have been on the floor for their visit so that we could all spend time together! It was a great visit...a little too short, but great!!

One thing I had never talked about up until the time of their visit was something that I have been dealing with emotionally for a while- Every time people come to visit I get overwhelmed with horrible anxiety. I have come to many conclusions for this extreme anxiety & have been unable to pinpoint the exact cause, but maybe it's a combination of a few things-

One being the fact that my sweet baby has been through SO much & my instant instinct as his Mother is to protect him (not that he needs protection from the people that love him so much) But because of all he has been through I want to shield him from any possible judgment or negativity that anyone else that is not his own Mom or Dad may have.

Second is that I have to be there for their initial reaction when they see my poor sweet baby in the condition he is in & I am not in a good enough emotional state of my own to be able to support someone else emotionally along with myself...like when my Mom came that very first time I felt like I was going to collapse while walking her back into his room, knowing that I didn't have anything left in me to give & she couldn't fall apart on me or I might lose control of my emotions even more than I already had! Thank goodness my Mom held herself together very well regardless of how emotional it was & I never felt like she needed to lean on me. :) Thank you Mom!

& third (the one I feel the very strongest about) is that I feel like every time someone new comes along that hasn't been here physically once before or for the entire time we have been going through this all, I feel like going back through the emotions is like tearing my wound wide open all over again, I feel like I finally get to a point were I can cope & that I am only crying a few times a week rather than daily or constantly & then someone new to it all comes to visit & all the old feelings come rolling back like we are starting over again. It has been a lot harder for me to deal with than I ever even imagined!  

SO- it's been tough! Not to say I don't like visitors, I LOVE THEM! But it is just a hard few days before they get here & then once they are here & past that initial seeing Ryker, I am okay. This time though with Jason's sisters I felt so much better about it all. I still had the extreme anxiety leading up to their arrival but I think because he is on the recovery floor & doing so well that I didn't feel all the same familiar feelings I had felt before. That was great & I am so grateful they took time away from their extremely busy lives, husbands & kids to come spend some time with us getting to know our sweet baby boy & loving on my girlies! By the way Tiffany- Braylee misses you like CRAZY! :)

Now the following week since the sisters have left has been a GREAT one! The only goal in mind is getting weight on this sweet boy & let me just tell you how good that feels to have that be our main focus!!! :) :) It feels freak'n fantastic!!!! :) LOL!! It feels so good to feed my baby a bottle, burp him, change him & other than the very few cords left attached to him & the frequent meds- I feel like he is a normal baby!

I don't think that anyone realizes (myself included) how much we take advantage of the simple things in life, but especially when it comes to having healthy baby! Being able to walk around your own HOUSE not hospital with your baby in your arms without having to either pull an IV pole along with you or not be able to go far because his cords wont reach his monitors.......Things I never even thought of. It is so great to be able to hold him up on my shoulder & snuggle him like I always did pre-op, to be able to snuggle him for so long & hopefully soon- as long as I want to without someone telling me they need him back for vitals, meds, etc. The simplest thing like YOU the MOM being able to make all the decisions for your own baby & not having a doctor tell you what needs to be done or literally BEGGING for weeks for my baby to just have a little lactobacillus added to his diet! It's all the little things that I can't wait to NOT ever take advantage of again once I have this sweet boy at home all snuggled up in my arms! :)

On June 13th We Finally got to get Ryker's 84 day old Broviac Line removed!!! :) This was the one thing our last time here on the floor that was holding us back from going home. (Thank goodness it did in our case) But I am so excited to have it gone!  I have always been so nervous having it be a source to infection since it has been in for so long! He got it put in on March 23rd with his 2nd heart surgery (removal of his PDA vessel) A Broviac Line is more frequently used in heart patients for a more permanent form of IV access that goes straight through his belly & directly to his heart, so that all meds that go through it are in his blood stream almost instantly. They also are able to pull blood draws for labs off of it, so it has been very nice to have so that he doesn't have to get poked constantly! But now that he has been on the floor for a while it hasn't been used in some time & it cracked for the 4th time, so it is time to take it out!

Originally the plan was to have Ryker go to the O.R to get the broviac removed, but because of a busy morning at the O.R they decided to do it in one of the back rooms of the CICU. I brought Ryker to the CICU at 6:30 that morning & when the team got there to get all set up I went to kiss Ryker to leave (figuring I couldn't be there for it, it's considered a sterile/surgical procedure) & the Doctor (the same amazing one that has told me that I deserve Mom of the year :)-we love him:) said "Mom, if you would rather stay we would love to have you here!" I said "I didn't think I could stay" & he said "You've been here long enough & seen more than most parents do. I know you can handle it if you would like to & we all know that Ryker would do a lot better with his Mommy by his side!" So of course, me being the control crazy Mom that wants to be there for everything possible so I can be by my baby's side, I stayed & I am so glad I did! It was hard to watch at times but also very neat experience to be able to be right by my sweet boys side during a surgical procedure!

After his broviac removal Ryker & I had to stay in the CICU until his sedation meds wore off. I was happy to do this because I got lots of snuggle time in with my sweet boy & LOVED every second of it!!

As of now (June 15th) Ryker weighs 7lbs 4 oz (3 months & 1 week old) & all our focus is to get some meat on his bones! Dr. Del Nido would like Ryker to be as close to 10lbs as possible before he will take him back to the O.R for his Glenn procedure. So we are doing our best to get him there as quickly as possible so we can get him healthy & home sooner than later!

My girls first time being together with Ryker since we were at home 3 months ago...It was PRICELESS!!!

Addi loves her baby :)

Love this boy more than words can say!

The two men in my life! Love them SO much!!

My husband is SO AMAZING with our sweet baby!!

Such a good big sister!!

All three of my babies!!

Ryker loves to stare at his sweet sister

Ryker with his amazing Aunt Tisha! (that would literally do anything for him! Thank you Tisha for all you do!!!)

 

 

Addi & Tisha

Ryker loves his Aunt Jess :)

Snuggle time with Aunt Tiffany

Daddy loves his baby!!

Braylee is so good at holding her baby brother!

Ryker squeezing Braylee's hand :)

LOVE THIS!!!

This one brings tears to my eyes! SO SWEET!!

Ryker holding Addi's little hand :)

She sure loves her brother!

All cuddled up in his new bouncer (from his Aunts Jess, Tiffany & Tisha:)

A-Flutter

On the morning of May 31st I was back at the Hotel spending my every other 24hrs with my beautiful girls. When I received a call from an unknown number. I was so grateful I answered when I realized it was Ryker's Nurse Practitioner on the line. Instantly I was so nervous, I hate to get calls from anyone in the hospital while I am away from my sweet baby. She told me that Ryker was back into flutter & that because he had been through this once before they were going to try to pull him out of it without having to intubate him this time around. However because they had already tried other ways of getting him out of it that did not work, they would have to do the defibrillator paddles once again. My heart sank, my poor baby was going to have to go through that again, this time without being intubated, paralyzed & sedated heavily! She said they would sedate him pretty good but not too much or he would have to be intubated again. I was so nervous for my sweet boy. Thank goodness Jason was there & was able to be by his side. But my heart ached for both my boys- Jason, because he would have to see what I had to see before that just ripped me in two & Ryker- because he had to go through all this all over again! My poor baby!!

After only about 15 minutes of pacing back & forth, being sick to my stomach that I wasn't there & preparing myself to leave asap, the nurse called me & said "Ryker is out of flutter & doing really good. We did have to bag him (where they put a oxygen mask over his face & blow air into his lungs) a few times to keep him breathing, but otherwise it went smoothly"  I was so relieved! I talked to Jason & he said Ryker looked great & did really well, that he was just sleeping comfortably now. :)

Then once again on June 5th early in the morning (again, at the hotel with my girls) I got another call from an unknown number. Instantly I was sick to my stomach...I knew who it was, I was just praying it wasn't bad news! Again the nurse told me the same thing "Ryker is in Flutter & we will try our hardest not to have to intubate him while we do the defibrillator, but if he stops breathing with the sedation medication we need to give him we may need to." Again thank goodness my amazing Husband was there to be with our sweet baby while he went through more horrible things that no child should ever have to endure & no parent should ever have to see! Jason called me a short time later & said "He is out of it & doing so good! Babe, I cannot believe how tough our boy is!" Jason continued on to tell me that the head attending Doctor of the CICU had Ryker for the day & was shocked at how unbelievably tough Ryker is! Apparently Ryker got sedated & then had the defibrillator done & was just fine afterwards....no bagging, no intubating, just back to normal like nothing ever happened. He is such an amazing & strong baby boy!!

Later Jason & I were talking & I confessed to him that I think I know why this keeps happening when he is there & I'm not. I told him "It's because after I saw what I saw & felt the the way I felt the last time around I prayed to God over & over that I would never have to see my sweet baby go through that again. So now I realize I need to have a talk with God & re-word things...Of course I don't want to see it again & I NEVER EVER want my sweet boy to go through it ever again, but if he does HAVE to go through it again I want to be there for him, right by his side, holding his hand the entire time!" I think God realized how hard that was on me & is trying to spare me a heart attack :) I am just so grateful that I have such an amazing husband that is there by Ryker's side loving & caring for him just as much as I do!

Before the last flutter on June 5th they had said that they would have liked to have sent Ryker to the floor a week ago, however because he is Ryker & enjoys throwing curve balls at them they are going to stay on the cautious side & keep him until they feel he is 100% ready to be on the floor & hopefully stay on the floor. So as of now Ryker is on 100% breastmilk with no additives (hopefully they will let it stay that way) & trying to grow big & strong. :)

Here are a few pics of my beautiful girls with Ryker during a hospital visit-

Cuddling my sweet boy!

Holding Ryker after his bath

Addi loves her baby!

Me & my Addi-Jo

Braylee's first time holding Ryker since before when we were all together in Utah

Addi's first time holding Ryker since before when we were all together in Utah

Love how Ryker is looking at Mommy :)

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!! :)