Sorry it's been so long!

I know I have been horrible about blogging these days. I came to a halt with blogging on July 13th when Ryker had gone into a Cath & then had an extremely hard night, almost going into Cardiac Arrest & us almost losing him. Ever since this night I have tried writing a blog update over a dozen times & I get too emotional & can never finish. It used to be so healing for me to blog, almost like my coping mechanism through all of this, but then came that night & now a few more that have been even harder & I just can't do it right now. In all honestly, it comes down to- I can't think about the way I feel, because it hurts too bad! One day though I will finish the post I have tried to work on so many times before & after that I will one day get up to date on my blog. Once this happens I will let everyone know, but until then feel free to check out Ryker's FB page for little updates. Through this whole journey I have wanted so badly to put my true thoughts & feelings into words so that one day my sweet little Ryker can read it, so I really hope that one day I can finish! :)

Ryker's journey video

Here is a video all about Ryker's story up to the day we did our Family pictures on July 11th. I have been working this video for over a month now & I am SO excited to finally get to share it with everyone!

EnJoY! :) 

Long busy week for Ryker

The last week has been an extremely eventful & sad week for my sweet little Ryker! He has been through so much!

Starting Monday we found out that he had been in & out of flutter for days, which causes him a lot of pain & stress, along with hypo-tension & low O2 saturations. So needless to say this took a tole on my sweet baby's body.

Then Tuesday while doing a sedated echo they found that he had an efusion (a pocket of fluid) under his left lung, so from there they had to heavily sedate, paralyze & intubate him to be able to insert a cest tube to drain the fluid, this procedure went very well & has drained quite a bit of fluid. They have tested the fluid & still have no reason as to why the fluid was there, thank goodness it is not cylis (fatty fluid caused by the body rejecting the intake of fats in the digestion) they think it may have something to do with him being in flutter so much over the last few days.

So, from there while he was already intubated the Doctors decided to do a CT Scan on his abdomen to get a closer look at his intestines one last time to be absolutely sure that he didn't have any problems that needed fixing before they really tried feeding him again. They found what they felt was something called "Intermitten Volvulous" of the GI Tract, which basically means that his intestines will randomly without any warning turn on themselves & cause him extreme pain. So needless to say we met with Dr. Smithers (The General Surgeon that has followed Ryker for awhile) once again about possibly doing a procedure on his tummy.

On Wednesday- Dr. Smither's decided he needed another "Upper GI" test done done to help him to make a final decision on what Ryker needs. Then with the help of Dr. DelNido, Dr. Marx, Dr. Keir (One of Ryker's ICU Attendings), General Surgery, Jason & I we came to a decision of it being best to put Ryker back into the Operating Room to make sure any belly problems he was having are taken care of.

Thursday at noon they came & took Ryker to go back to the Operating Room. I was sick...the anxiety & tears hit me so hard! Although I knew that intestinal surgery couldn't compare to any of the 4 other procedures he has already had done, I just hated the idea of him going back there AGAIN! Within an hour & a half the Liazon nurse (the nurse that is in charge of keeping the parents updated during surgery) called and asked that Jason & I hurry back to the hospital (We had just gone across the street to get some lunch) So we rushed back & for reasons that are still unknown Ryker was not staying stable in the O.R his O2 sats & blood pressure had been dropping & he spiked a fever. So needless to say they were unable to operate. At this time they kept him completely paralyzed so they were able to get an arterial line placed to hopefully better prepare him for surgery tomorrow.

On Friday morning Ryker was doing great, so they felt comfortable enough to take him back to the O.R When they came to get him I was greeted by an Anesthesiologist named Al, apparently he is one of the top Cardiac Anesthesiologist in the hospital & Dr. DelNido himself requested that not only Al be the one that takes Ryker down for his surgery, but that he stays with Ryker & monitors him for the entire operation. I love to hear how much Dr. DelNido cares about my baby boy!

The procedure only took a little over two hours, then we met with Dr. Smithers. He said that surprisingly enough Ryker's intestines were malrotated but the malrotation that Ryker has works for him & his body & needs no cutting or adjusting. He has no intermittent volvulous like they had thought & no risk of having it happen either. All Ryker's intestines are held up & supported by the correct muscles & he has no problem there. However they did do a biopsy of his colon to check for any motility issues he might be having, which we haven't heard back about yet. They removed Ryker's appendix & placed a G-Tube, but they couldn't place a regular G-Tube because they found that Ryker has an extremely small stomach (& I mean small!) They couldn't even put a small balloon on the inside to support the tube because they were worried if they did it would take up the majority of his stomach. So my thoughts are that his itty-bitty stomach could be the source for some of his pain & intolerance for feeds.

When we came back up to see him he looked great!! By far better than he has ever looked after any of his 5 surgeries, this operation obviously wasn't cardiac surgery like the others, but still a very serious operation! I am so proud of my tough baby boy!

8/8/2012- My beautiful boy sleeping peacefully before another big surgery day tomorrow....I sit here at almost 3am just watching him breathe & can't help but become overwhelmed with emotions over how unbelievably grateful I am for all I have!!

8/11/2012- My beautiful boy with no tubes or tape on his face!! :) This is very temporary, but I had to share because I love it so much! First time since he was only 2 weeks old that I get to see his whole face. They are just changing the tape for his ventilator tube before they wake him up from his paralytic. Beautiful boy!!!

Tummy pain mixed with CICU :(

On that same Monday the 18th (the day of the video in the earlier post) that Ryker was SO happy, his team (Doctors & nurses) decided he wasn't gaining enough weight & that they would need to up my breast milk calories by 4. I had fought them on this for sometime mainly because when he had additives in his milk before hie did not handle it very well & for 2- My breast milk on it's own is 28kcal & 33kcal if I just save the "hind milk" (normal breast milk is 20kcal) So needless to say from my perspective he was getting plenty of calories & didn't need more, but because he wasn't gaining weight very quickly (on some days actually losing a little) they felt like they had no other choice but to up his calories. The entire weekend before this we even tried having his feeds be every 2 hours instead of every 3 & it just seemed to overload him a little & make him less interested in eating, so by the time we got to that point I felt like adding calories was our only shot at getting him to gain so he could get to his Glenn procedure sooner.

The first feed we gave him was at 5pm on that Monday. Within an hour he threw everything I fed him up :( But because there was a little mucus in the vomit the doctors felt like it was just his way of trying to get some fluid out of his lungs (something common in cardiac kids) So we didn't think much of it & moved on.

Jason came to switch me around 7ish so I could be with our girls & he could have his Ryker time. By about 11ish Jason called me & said that Ryker had been screaming ever since his 8 o'clock feed. I talked to the nurse & had her change a few things as well as having her do just pure breast milk only for his next feed at 2am. I was so nervous! My first instinct as a Mommy was to rush to the hospital & cuddle my poor baby, but Jason said he was fine & that he would call me if it got worse, so I didn't have have to leave the girls on "their time" (I have been ripped away from them on "their time" so many times now & so I am trying my hardest not to do that to them unless I absolutely have to)

At 5:30 am I woke up in a panic worrying that I had slept through Jason trying to call, but I was so relieved when I realized that he hadn't called at all. I thought- Ryker must be doing much better, I was so relieved! Braylee woke up when I did as well worrying the same thing, she said "Mommy do you have to leave" & I told her "nope sweetie, go back to sleep" At 6am (only a half hour later) my phone rang & Braylee instantly got emotional & clung to me as I answered the phone. It was Jason & I knew exactly why he was calling....my poor sweet baby was in so much pain, he hadn't stopped crying all night :(

I got up & started to get ready to go as my two sweet girls laid in my bed crying.....It is the hardest thing in the world knowing I need to be with Ryker & I have to leave my girls on "our day together" as Braylee says it. It is literally gut wrenching. I finally was able to say goodbye, knowing I couldn't give them an exact time of when I would be back even though they both begged for it. Thank goodness Joan is still with us so he was able to console my poor crying girls. So hard still for me to even just think about :(

When I got to the hospital Jason was standing up bouncing Ryker as Ryker was screaming. My poor baby's cheeks were flushed & so hot from crying for as long as he had. Jason said "I'm sorry I had to call but I waited as long as I could in hopes of being able to soothe him, but he is just in so much pain I can't keep him calm for very long!" It ripped my guts out to see both my boys so worn to their core from such a long horrible night! I wish so bad I could have been there all night for both of them! But one of the many things I have learned in all this is as much as I want to, I can't clone myself, therefore I can't be there for everything at all times. :(

After lots of deliberation, a new IV, a few blood tests & a lactate level of 9 we were back to the CICU...:( As soon as we got their they instantly started poking & prawding at my poor sweet baby & wanted to start shoving all sorts of medications (that we had just gotten Ryker off of) thru his IV. I suddenly became SO overwhelmed with anxiety & my protective Mother instinct stated to kick in. I couldn't decide if I wanted to start screaming at everyone (that was trying to help) or if I should just sit down on the floor & start crying!

After a few disagreements & pleading with the nurse to listen to me & not the Doctor on call- I had had it! I said to the Doctor (not mentioning any names because I love & respect all the Doctors at BCH but sometimes the Parent's instinct should be listened to a little more seriously in all hospitals) "I hate this place!!! All you want to do here in the CICU is run test after test & & if you keep searching for a problem your bound to find one eventually & then we really will be here forever!!" He stopped what he was doing & apologized to me, saying "I know this is overwhelming for you, but this isn't the first time that Ryker has been back here for tummy pain & we have to cross everything off the list to make absolutely certain there is no other problem." I knew he was right, but some of the tests they wanted to do had already been done & I didn't want to torture my baby even more to get the same result again! Especially when my instinct kept telling me it was just the additives & that we did too much at one time for his fragile little body & digestive tract to handle.

Just then the General Surgeon came in the room & started looking Ryker over. He & I talked for sometime & had come up with somewhat of a game plan for the night when the same Doctor on call came over to the General Surgeon & said "How many times are we going to run little tests on this baby before we just decide to skip the tests & cut him open? There is obviously something going on that we can't see with tests!".........I about killed him!!!!! I had to have looked at him like I was going to murder him right there on the spot because as soon as I looked at him he begun to back away. I said "Your kidding me RIGHT!?! Your just going to cut my baby open before knowing exactly what is going just because YOU want to know what is going on? Don't get me wrong, I want to know whats going on with my baby too, but don't you think that's a little invasive & completely unnecessary?!?" He didn't say anything to me & he turned to the General Surgeon in hopes of having the General Surgeon agree with him & instead the General Surgeon said to me "Mom, you don't need to worry about it, that would never happen in this hospital!" & then he left the room. The Doctor on call completely changed the subject & said "do you have any questions for me?" & I said "I would like to speak with Dr. Marx!!"

By this time I was literally shaking!! & in all this I want to make myself clear that I have the up most respect for all the Doctors & Nurses in this hospital, I have a love for them all that I could never explain, including the Doctor that I dealt with that day. But like I said before I just believe that there are things that we as parents understand that no test could ever prove & that comes with our parental instinct & one thing that I have learned loud & clear in this process is that I HAVE TO TRUST MY PARENTAL INSTINCT! I am the Mom & Jason is the Dad for a reason & there are so many decisions that only he & I will ever understand & that is what parenthood is all about, that is why our children have chosen us, because they need us to do what is right for them & not for anyone else!!

I wont even go into all the many things that happened or that could have happened form that point on...that was just one of the many ideas that were thrown out there that thankfully was thrown out just as quickly! I had never felt so shaken, angry & emotional, yet SO grateful all at the same time before in all my life! It was a horrifying feeling!!

From there the tests began....Thankfully I was able to illuminate a few of them that I felt were unnecessary & I got the AMAZING Dr. DelNido & Dr. Marx to second me on those decisions so that I was taken seriously by the CICU Doctors. It is such a wonderful feeling to have such incredible Doctors/Men having my back & especially Ryker's back to keep his best interest in mind! I am so eternally grateful for both of them!!

The next day they ran more tests....& poor Ryker took everyone of them like a champ! I however, did not! I so frequently laid my head by his & cried silently to myself trying so hard to be strong for him. It is so hard to see my sweet boy continuing to go thru so much & not being able to do a thing about it! At one point during one of his tests (the lower GI test) a test that the nurse advised me to take a break from it all & not go to, but of course I refused to leave his side. Ryker was on the table while the the Doctors were doing what they do & I was standing at the head of the table laying my forehead against my sweet baby's forehead whispering to him how strong & incredibly brave he is, when he suddenly stopped crying, tilted his head up towards me so he could see me & just stared his beautiful eyes into my eyes like- "Mommy, please take me away from all this! Please help me!" I lost it completely!! Tears rushed down my cheeks while there were 10+ professionals in the room trying to get the job done. A few of them tried to help me but there was no stopping my tears....I  couldn't help my baby even though I could feel him begging me too! He was being so tough & I was so tired of seeing him HAVE to be so tough! My poor sweet boy had been thru enough....when is it going to stop!?! At that moment I prayed SO HARD that this would be the last test that he had to endure & that everything would come back normal so he could go back to being happy in recovery & Thanks be to God- IT WAS!

Every test that was thrown at my sweet boy came back negative for any intestinal malrotation (something that is extremely common in Heterotaxy babies) or blockages of the colon &/or intestines!!!!

Basically what we have found out was the cause of his pain was an overloaded digestive tract. Between the moving his feeds from every 3 hours to every 2 & then adding calories to my breast milk, his tummy just had it! Heterotaxy babies have extremely sensitive tummies mainly because their hearts (especially before the Glenn procedure- Ryker's next surgery) aren't strong enough to supply enough blood flow to their tummies to process large amounts food &/or too high of calorie intake, plus they have smaller than normal stomachs making them get full way faster than others. So from here on out (no matter how hard they try to push me to let them up his calories) he will not have anything but pure breast milk either in a continuous drip or every 3 hours. We have learned our lesson loud & clear!! :)
 

Another minor thing they did find in their testing is that Ryker has a very tight rectal sphincter causing him to seem constipated although his isn't. Therefore- when he was having extreme tummy pain due to the additives in his milk he would tense up even more that normal making it near impossible for him to poop, therefore backing up his intestines so much that it actually made them distended, causing EXTREME pain for my poor sweet boy! :( This is something we are hoping he will just grow out of, but the GI team said as long as he is on a regular bowel regimend such as suppositories &/or miralax daily & breast milk ONLY he shouldn't have the problems he has been having any longer. :) YAY RYKER!!!!

The next few days were way easier than the beginning of the process at the CICU but still extremely hard. Once they did decide to restart Ryker's feeds they felt like it was best to do it extremely slow to make sure he tolerated it well. So they started with a continuous drip of 2ml's per hour & then went up only 1ml every 6 hours....this was so torturous for my sweet boy because not only was he use to having the fulfilling feeling of a full tummy but he was use to eating by bottle & so according to him we were starving him to death! With that small of an amount dripping into his tummy so slowly he didn't even notice that it was happening, so poor baby was absolutely miserable! :( It took constant bouncing & consoling him to keep him comfortable enough to sleep for the two days it took to get his feeds to get where he felt somewhat comfortable. 

There were more times than I would like to admit that I held him in our little CICU room & just cried, not only because of the many, many things he had been thru, but because no matter what I did for my sweet precious boy I couldn't console him, he would eventually wear himself out to were he would sleep for 10 minutes or so but other than that I felt completely useless to him for the first time ever. I felt so defeated in that I couldn't help my baby in so many aspects of his life at that specific point, no matter how badly I just wanted nothing more than to just take it all away for him! That was such a horrible feeling as a Mother knowing that I couldn't help him & only time could fill up his belly & make the pain from the numerous tests go away not me...:(

Total we were in the CICU for 4 days & during that time & all the torture my sweet baby lost a little under a pound in body weight :( obviously setting him back quite a bit...So we are going to get him back up & continuing to grow so he can get to his Glenn sooner than later with no more setbacks!!! 

Me snuggling my sweet baby shortly after we were admitted to the CICU & he was able to relax after a dose of Morphine. The boot looking thing on his ffoot is a cast for his IV cause he kept kicking it with his other leg.

Headed down the hall to one of his many tests & being SO BRAVE!!!

Passed out (with the help of a little versaid) after the testing was finally done.

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:)

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!! :)

-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