Wednesday, September 26, 2012

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! :)

Tuesday, August 14, 2012

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! :) 



Sunday, August 12, 2012

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!!!

Monday, July 30, 2012

Long Awaited Family Time!!

Since being back from the CICU Ryker has been doing great! Even though he is gaining weight slowly he IS gaining weight & he has been happier than he has ever been! I spend all day with him in my arms snuggling him while he sleeps & chatting up a storm with him (literally having the nurses think I'm crazy) while he is awake. I love this baby boy SO much more than I could have ever imagined! Regardless of all he has gone through he is still the sweetest happiest baby boy with the sweetest spirit in the world! I am so grateful for this amazing boy! 

On July 2nd my boys were finally coming back to Boston to visit. Now as you may remember last time they were here Ryker got transferred back to the CICU the day they got here, so we were never able to be all together as a family the whole time they were here. Each time we had to split up & have only 2 of us at a time go into his room to see him. So we are all ridiculously excited to be able to all be together as a family again!!!

The second my girls saw them walking through the airport they RAN to them! They were so excited! We immediately went to the hospital so we could all be together as a family again. It was the best feeling & missed way more than I had even realized! Then watching the boys hold Ryker & having Ryker smile back at them showing them how happy he was to see them again was PRICELESS! Needless to say it was a very emotional day for all of us!   


Having the boys here has made home life feel a little more normal...still I have the constant thing in the back of my mind no matter WHAT we do together as a family of "I wish SO badly Ryker could be here with us!" It eats me alive when I am away from him, but knowing that Grandma is with him & all his amazing Doctors & nurses have his best interest at heart helps a ton. 

Now that we have moved into our rental home in Belchertown (that is an hour and about 20 minutes from the hospital) we have now gone to switching off every 3 days rather than every 24hrs. This was a really hard adjustment for me to be without any of my kids for that long, but especially Ryker. I just realize that when I am with him he does much better, gains more weight & is all around happier when I am there. So we are doing our best to just get him big, get him to his next operation & get him home with his family where he belongs!!


The boys get to stay until July 18th & we plan on being together & doing as many fun things with them as we can before they have to go back to Utah.....So here's to an awesome month! :)


Picking up our boys from the airport

 
Their sisters were so excited to see them!
TOGETHER AS A FAMILY AT LAST!!!!!! Only waited 4 months...So worth the wait!!

Trett holding Ryker after 4 months of waiting

Jadd holding Ryker after 4 months of waiting

All four of my boys together! LOVE THEM!!

On a walk in our new town...SO BEAUTIFUL HERE :)

My happy smiley boy!!

Ryker loves his nurses :)
Whale watching as a family



Mommy & baby Humpback whales....so neat!

Absolutely LOVE this man!

Me & my beautiful girls

My AMAZING Family! I cannot wait to have Ryker here with us too! :)

Swimming at our wonderful Landlord Denise's pool


The boy trying to get each other in the pool
Ryker LOVES Jadd!

Addi loves wearing her brothers hats




Sunday, July 1, 2012

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.





Saturday, June 30, 2012

My Smiley Baby Boy :)

On Monday June 18th Ryker had by far his best day yet! He was smiling, alert & so so happy all day long! I even got him to give me a little laugh for the very first time! It was such a great moment! Of course I loved it so much that I soaked it all in myself & then decided to try to videotape him after the fact, but at least in the video he is still super happy & making cute little noises & smiling so big...so EnJoY!! :)


video


 Here are a few other pics from that day & the Sunday before- Such a sweet & happy boy!!
Such a sweet baby boy!

I love seeing him SO alert! & only ONE tube on his face :)

Bath Time :)

Getting his tons of hair shampooed

Lol...Wet-Curly hair :) & crazy eyes! Love it!!!




He has been SO happy & feisty as always! This next pic I LOVE.....


 Can you see what's missing?....Yep its Ryker's feeding tube, he pulled it out & then was so proud of himself & full of smiles LOL! Naughty Boy ;) Cant say I blame him! When the NP came in he gave her a huge smile like "look what I did!" She said she could go on with her day now cause his handsome smile made it perfect! :) He's such a flirt!

Cute boy with no more feeding tube...temporarily




Sunday, June 24, 2012

A little down time with the sisters in town

 The few days Jason's sisters were in town we had some really good de-stressing days. Luckily we had Grandma Warner to stay with Ryker so we could do this. Thank you so much Joan!!!

The first day was going to one of the girls favorite parks, riding the carousel & getting faces painted :)


Me & my beautiful girls on the carousel
My sweet Addi

My girls LOVE their faces painted :)
 It was SO great to be able to spend some really good time with Jessica, Tiffany & Tisha!! & when those three get together they are hilarious!!! :) Had such a great time!!

Our group at the park....apparently green & peach was the colors that day :)

I love how much these girls love each other :)

Ryker is probably wondering what in the world happened to his sisters :)

Then thanks to Tisha, Braylee & Addi were able to start a summer gymnastics class! As I always brag about Tisha- She is wonderful!! 

& a HUGE thanks to East Celebrity Elite for donating summer classes to my girls, they have loved every second of it!!
Braylee & Addi at their new gymnastics summer class

Daddy & his girls

Then last but absolutely not least....

Me & My Love were finally able to spend some quality, much needed alone time together!!! :)
While Tiffany & Jessica stayed with Ryker & Joan & Tisha stayed with our girls.
 
Jason took me to the top of the highest tower in Boston where they have a full radius view of the entire city. It was beautiful!!! Then we went to dinner at a yummy sushi restaurant (my fave-much missed because of pregnancy, food) Then we headed back to the tower so we could watch the sunset & see the view at night, it was perfect!! 

Oh & I can't forget- we did the little picture booth strips while we were there, so fun! Haven't done those in years! I would post em but most of them were make-out pics so I figured you may not want to see them! ;)
Our beautiful view from the top of the tower


I absolutely LOVE this Man!!!

The night time view after dinner