Sunday, April 29, 2012

Light at the end of the tunnel

On Wednesday April 18th I fell asleep in Ryker's room, at about 3am I woke to the sound of my sweet baby boy crying! :) If you are a Mother of a baby that has been extubated before I'm sure you understand how utterly amazing it is to finally hear your baby cry after 4 weeks of silence. It was the best sound in the world to wake up to!! I put my head down by his & begun to speak to him, instantly he stopped crying & just stared at me with his big beautiful eyes! It was such a huge step in the right direction & oh so PERFECT! :)

On Friday morning we got word that Ryker will be on the recovery floor by Monday :) I was thrilled beyond words!!! Especially because just the night before I had another heartbreaking conversation with my sweet Braylee over skype. She had told me in the sweetest way that she could, that she didn't believe me anymore that she was coming to see me in Boston. She was starting to wonder if she would ever see me again :( This broke my heart more than I can even express!! So now knowing Ryker would soon be on the recovery floor meant we were one step closer to getting our family back together again. :) Thank you God!

Our plan has been that as soon as Ryker gets onto the recovery floor Jason would go back home to Utah to pack up our stuff, put half in storage half in a uhaul & then he & his Dad would make the long drive back here to Boston where we will be living. This day was finally coming & coming quickly!!

By Sunday morning we had Jason's flight booked for Monday morning for him to go to Utah, a bunch of people lined up to help Jason pack up our house for while he was there & my girls all prepared to go to Utah for a week to spend with my family before coming to Boston hopefully the following Thursday!!!!!!! I could hardly contain myself.....I can finally see the light at the end of the tunnel!! :)

My sweet angel baby!!
Ryker having his very first bottle :) :)
My sweet baby with the "high flow" candula

Getting his stitches removed. He is such a tough little guy!!!




Saturday, April 28, 2012

A Successful Extubation!!!

I just have to start by saying that this post was one of those days that I never thought I would be able to write about! It was one of the hardest days we have gone through since we have been here! I had to hold off on most of the details because it is still just too much to handle, but it does feel good to write about it & let it out! :) So bare with me, I had to be pretty vague in some areas because it is still too raw.

The entire week before Ryker's big extubation day was very relaxing. They upped his nutrition a ton to get him as strong as possible & did regular pressure support sprints to build up the muscles in his lungs so he would be all prepared to breath on his own.

They set the date for Ryker's second try at extubation for Tuesday April 17th. I was SO nervous!! I knew that they had done so much more to prepare him this time around, but because of the way it all went down last time, I was terrified!! The night before I made sure to get as much sleep as possible so I could be okay staying up all night with him after extubation.

The time came & everything went amazing! They started him on the C-Pap right away which he is not a big fan of, but he did so well with it & he was so brave!!!

That night was a night I will cherish forever! I stayed up in his room all night & didn't even attempt to get some sleep because of the way things had gone the night after extubation the last time around. I wasn't a bit tired either. Here is my Facebook post from the morning after-

"Staying up all night with my sweet baby boy has been so worth every second it in so many ways!!! Not only is he still doing amazing with being extubated, but I got to hold him (even snuggle a little:), bathe him, wash his hair, change his incision dressings (that are looking so good & healing so well), & of course talk to him while he is wide awake (like always) in the middle of the night. What a PRICELESS night! I love this baby boy more than words can say! I cannot believe what my baby puts up with & still has such a sweet spirit! I love my little Miracle Man!!! :)"

The next morning at rounds the doctors were so impressed with how well Ryker was doing. They decided that they were going to restart his feeds right away & hopefully get him off C-Pap & onto High-Flow later on that day. I was so happy!!! I was finally feeling like we could get past this huge extubation hurtle & get onto recovery!

Within only a hour Jason had come up to Ryker's room & I had just gotten done telling him how amazing Ryker was doing. Then as I was just sitting by his bed talking to Ryker his machine suddenly started going off. I had been staring at him the whole time & nothing on him had changed. His color looked good & he was awake & seemed completely fine. I looked up at his monitor & his oxygen sats were declining rapidly. At first I didn't know if I believed it because he looked so good. Then a nurse came in at started looking him over, she had said kind of the same thing as me that she didn't think it was right cause he looked so good, then as she did Ryker's machine started blaring! Suddenly everyone came running into his room & as I stood there in shock as my sweet baby slowly lost all the color in his face..... 

I backed off so everyone could get in to help & I stood there completely helpless! I can't even begin to describe all the feelings & emotions that were rushing through my mind at that horrible moment! I just wanted to grab him & take him away from all of this! God- why does my sweet baby have to go through so much just to live a half normal life!?! His oxygen begun to come back up & everyone started to relax but still watch very closely & cautiously. At that moment I looked over at my sweet husband who was sitting in the window seat just to the side of Ryker's bed with his elbows on his knees & his face in his hands. I wanted to go over to him & be there for him, but then I was terrified of leaving Ryker's side! We were both so scared! Seeing things no parent should ever have to see their child go through! We both just waited as the doctors said he was okay & everyone begun to walk out.

Then within maybe 60 seconds it happened again, but this time instead of his oxygen sats dropping to the 30's they were down to the teens! Everyone came running again, this time much more frantically than before & once again I backed off so they all could get to him. I couldn't breathe I just stared helplessly with tears rushing down my cheeks as my beautiful baby boy went completely limp & his entire body turned blue. Part of me now wishes that I would have closed my eyes or gone & sat by Jason so I didn't see the horrible things that I saw. My sweet helpless baby seemed so far away & I couldn't help him!

Jason & I went through things that day that no parent in this world should ever have to go through! & sadly being here in the hospital as long as we have I have seen things like this & worse happen all the time! It is so heartbreaking! I am so grateful that Ryker is not my first child or honestly don't know if I could do it again! My sweet boy has to go through so much just to live a normal life.... a life that so many take for granted.

This went on for a while & finally after a few times the amazing doctors & nurses got Ryker stable! Thank you Lord!!! This was a time to both Jason & I felt like was an eternity! After they got him stable & everyone but Ryker's nurse had left the room, I went over to my sweet baby boy, laid my head by his head & just sobbed uncontrollably! My sweet husband came & stood by me & started rubbing my back...I didn't know if I could take anymore! I could hardly breathe & there was nothing that I could do to stop the tears from rushing down my cheeks.

After a while of me continuing to cry by Ryker's side, the nurse said to me "It's okay Mom, he is good now" & I looked at Ryker and said "I don't feel like he is, he doesn't look okay" She said "all his numbers are great & he is stable, what can I do to make you feel better?" She was so sweet & was trying so hard to help but I just wasn't okay. I felt like there was something wrong! After a while of going through this & just not feeling right Jason convinced me to get some fresh air. By the time we came back we found out that because of me bawling & not leaving my gut feeling alone that there was something wrong, the nurses got a few other doctors involved to make sure everything was in fact okay.

Turns out everything wasn't okay. The amounts of the medications that Ryker was on were supposed to be cut in half at extubation because I guess they become stronger in your body once extubated & breathing on your own. Also, they had added a blood pressure medication that morning that he was not tolerating well & all things together were making him look the way that I didn't feel good about.

Dr. Marx came in & told me that today is one of those days that "The Mother's instinct was at it's best!" He said "we know medicine and all the hospital stuff but you know your baby better than anyone & Moms are usually right about this sort of stuff."  So thank goodness that I listen to my "Mommy gut" as Kristen calls it :)

So they decided to hold his sedation meds for a while until they got all out of his system & to make a very long days story short- Ryker was soon back to his regular self of being adorably cute & alert!! With that I have to say Thank you all SO much for all your prayers! Without God's help in this I know my sweet baby boy would not be here any longer.

I LOVE THIS BOY!!!


:::Here are a few pictures of Ryker after extubation::: 

Ryker being so brave on C-Pap


   

My first time being able to snuggle him close :)







Friday, April 27, 2012

Home hunting in Boston

I don't remember if I had mentioned this in a previous post or not but between us & Ryker's medical staff we have decided that it will be best for Ryker for us not to go home until after they have completed all of his surgeries, which could potentially be 1-3 years down the road...Hopefully not that long but who really knows.

As much as we knew this was the decision that had to be made, it wasn't an easy one! We knew we had to not only leave our home, jobs, family & friends to do this...but we knew the boys couldn't move here with us to... And its heartbreaking!!! I don't know how we are going to handle not having them around all the time! Or how my girls are going to handle it! We have the boys week to week (so one week on one week off) & by the end of each off week my girls are going crazy asking when their brothers are coming home. Those sweet boys are their little sisters hero's, sidekicks to trouble & absolute best friends!!! I know it is going to be really hard on all four of them!

Jason has really struggled with this decision for a while. Knowing it is the right decision to be made doesn't mean its the easy one! He got pretty emotional when we came to the reality of it all. Not only is he thee most amazing Dad in the whole world, but he never wants to miss a thing with any of his kids! The boys have always been involved in so many sports & he has always gone to not only every single game but he hates to even miss a practice. He loves being with his boys so much & watching them succeed at the things they love the most so much! One night at Primary Children's Hospital in Utah, Jay & Cheri were there visiting us. This was the night we realized we would more than likely be in Boston for at least a month. Jason said to Jay "I don't know how I am going to be away from my kids for that long, I'm not even going to be able to watch my boys games that they just got signed up for, I need someone to videotape them for me so I don't miss a thing!" While he was saying this he got pretty emotional. Now knowing that the month has come & gone & we are going on two months without our kids & it will be even longer for the boys it just breaks my heart!!

Although Trett & Jadd are not my biological kids they ARE my kids!! I love those boys with all my heart and I would do anything in the world for either of them! Jason & I have been together since Jadd was 20 months old (still in diapers & adorable baby talk) & Trett was only 3 years old. The two cutest & flirtiest boys I had ever met! Jadd used to tell Jason that he was going steal me from him, that I was his girlfriend now :) & Trett although only three years old was so "big" & so smart, always taking the best care of his "jaddy-boy" as he called him. :) They don't remember a time in their lives that I wasn't a part of it. They were just babies when I became a part of their lives, so I have had the pleasure of having a huge part in helping raise them & I love them like they are my own! I am going to miss them like crazy!!! Hopefully we will be able to get them out to see us during off tracks & summers, until we are able to go back home! :)

 On April 11th Jason's Dad Terry came out to Boston to help us find a place to live. Thank you Terry! I don't know what we would have done without you! The first two days just Jason & Terry went out house searching (I of course stayed at the hospital with Ryker...I wasn't leaving the hospital until they had it narrowed down) The first day back Jason was really discouraged, there wasn't a single place that they had seen that was even close to what we were needing for the right price. Boston is so ridiculously expensive! But luckily that day I had met with another Heterotaxy Mom at the hospital named Adreana Duchesne. As her & I spoke she talked about how we wouldn't want to live any closer to Boston than an hour because its just too expensive & too crazy busy. She said that she lives in a little town called Belchertown that is about and hour & 15 away & she loves it! Plus it has a great school system. Thank you Adreana!! So I relayed this to Jason & it made him feel a lot better. He & Terry had been looking within about 30 min range of Boston & hadn't seen a thing that worked so this gave us hope.

The next day Jason & Terry headed West to that area in hopes of finding something that would work for our family. They looked at many little towns around there & with Adreana's extra inputs here & there they realized that Belchertown it was. They found two little places in Belchertown that they decided I needed to see the next day.

The next morning after LOTS of persuasion, I left the hospital for the first time to go & hopefully find our new home. I had the worst anxiety!!! I hated to leave Ryker at all let alone to drive an hour to get somewhere, then an hour back. But I did it & we both survived ;)

The drive out to Belchertown was gorgeous!!! Boston was gorgeous! I hadn't really been out of the area of the hospital & all I had seen was a big city, but on the out skirts it is absolutely gorgeous!! So many HUGE trees & highways with nothing but beautiful wildlife growing all around. So not what I imagined the Boston area to be like. Not the "city" I had imagined!

After driving for a while, getting off the freeway & going through areas that are very forest like, I will be honest.....I felt like I was in Montana just without the Mountains. It was so beautiful, but I was getting a little nervous!! I was born & raised in Salt Lake City & don't like to be in the "city" city but I do like to have a grocery store within 5 minutes & some sort of shopping center within maybe 15 minutes....none of this drive 30 minutes just to get a cube of butter type of deal. I absolutely LOVE visiting Montana (where my husband is from) it is so beautiful & relaxing but I couldn't handle the slow paced, quietness about it all the time. So as we are driving through what I felt like was an "East side Montana" where we could potentially be living for a while I was a little nervous! I didn't see a single store or gas station on the way in,  just trees with a house or two every so often.

I decided I would keep my worries to myself until I saw everything & we went to see the first house. It reminded me so much of the location of Jason's parents house in Montana. It was pretty secluded but still had other houses in walking distance. It was a beautiful area & I really did like it. I could see us hanging out in the yard with the kids watching them play, it was a good feeling.

Then we went to the next house. It was a little cottage that a family had remodeled behind their home for a rental. It was so cute & just perfect for what we were needing. Plus, the woman that owns it was such a sweetheart & very helpful. I began asking all my questions like- How far is the closest grocery store & is there any parks for the kids, etc. Turns out there is a library in walking distance, a grocery store very close. The only problem is that its not available until July 1st.

I felt really good about it but as I walked through realizing that his could potentially be our home for a while, the place we bring our sweet baby home from the hospital to, I begun to have horrible anxiety. Nothing could compare to coming home from a long stay in the hospital like coming home to OUR home! My mind was racing! All the feelings of it being "Montana like" got to me at first but then when it really came down to it I realized that it didn't matter where we were coming home to, it was going to be a HUGE change, a change that I was trying my hardest to be ready for but today it had just smacked me in the face more than I had ever expected!

The drive home was pretty quiet...at least to my memory. There may have been much talk but I was so zoned out that I couldn't think of anything but getting back to the hospital to be with Ryker & how my life was never going to be the same in WAY more ways than I had even realized! I kept worrying "are my kids going to like it? what if they hate it & it makes all this even harder than it already is?" I knew this was coming but as I worded it to my Mom "I've never been a big fan of change, I don't like be pushed....or better yet shoved into change, especially all these changes that are more than life changing!" But I just kept telling myself "It is going to be amazing! It will be hard at first but you will love it in the end....I just need to stay positive!" Jason was sitting in the back seat & at one point he said- "Babe, I can feel your anxiety from here!" & he was right, I felt so overwhelmed & there was no way of hiding it! I just wanted to go back to the hospital & cry to myself.

When we got back to the hospital Jason & I were able to really talk about it all. Once again he made me realize that I didn't need to stress about all the "other" stuff and all I needed to worry about was Ryker. I knew he was right, I knew he would handle it & it would all turn out perfectly like it always has through this whole journey. He has worked so hard to make sure that everyone thing works out so well for our family! He has gone through so many stresses of big decision making & always making sure that I only worry about taking care of our sweet baby. How did I get so lucky to have him!?! :)

After a few more cries & lots of talks on what to do. We finally made the decision to get the little cottage in Belchertown. Since it is not available until the 1st of July we will be staying at an extended stay hotel only 20 minutes from the hospital for the months of May & June. Which actually works out perfectly because it is looking like Ryker wont be out of the hospital still for a bit so if we are able to get the kids out soon it wont be too long of a drive. :)

I have to take a moment & give a huge THANK YOU to Jason's entire family!!! Without them so much of what we have been able to accomplish would just not be possible. Turns out they have had whole family meetings numerous times on how to help make certain things work for us & about how they can help out more. Jason has been able to rely on them so much for help when I am with Ryker. They have been able to take so much stress off my husband & I appreciate it more than I could ever express! Thanks to them we found the house we will be living in along with so many other things! Thank you all so much! We love you all!! 


Here is a pic of my sweet boy only a day or so before his second extubation....
Those eyes make my heart melt! :)




Wednesday, April 25, 2012

In my arms again :)

On April 13th I got to hold my sweet boy for the first time since the morning of his surgery!!!

I had been up in Ryker's room with Terry (Jason's Dad) & the nurse Jaime (the male nurse that we love!) Asked me if I had held Ryker at all. I told him that I wish I had but when they ex-tubated him the week before I hadn't been able to hold him before they had to re-intubate him. He said "well I would love to set it up for you to hold him if you want to?" I of course wanted to jump up & down with excitement but I contained myself & said "are you sure it's okay? I don't want hurt him!" Jaime insisted it would be fine & I was so excited!!!   

Terry text Jason to come switch him places (there can only be 2 people at bed side at all times) so Jason headed up with the camera so he could be there when I held him!

After much manipulation & work Jaime & the respiratory therapist got Ryker all situated. Jaime put him in my arms & I was in HEAVEN!!! After a long 3 weeks, 2 days & 16 hours I had my sweet baby boy in my arms again! A moment I had honestly wondered if I would be blessed enough to ever have again. It was SO Perfect!! I was able to hold him from midnight until a little after 2am :) I was so comfy & so content & I never wanted to let go!

The best part was that not only did I love it, but Ryker did too! He instantly fell fast asleep & his blood pressure & respiratory rate went down a ton! Yeah for Mommy time :)

 I had to be so careful not to move him around with having the ventilator still in, so I can't wait until next time when the breathing tube is out so I can have some good snuggle time too! :)




Tuesday, April 17, 2012

Extubation-round one

To start out I am going to give you a little back round of things we has seen here in the CICU that will make a little more sense as to why I am telling you this as you read on-

When they originally came back from the O.R. Ryker was in a spot in the CICU called the coltasack or the cove (depending on the nurse you talk to) It is 3 rooms that are linked together at the end of the hallway. The babies that are in this area are considered the most needy. They were placed here because they need the most nurse attention & since there are three rooms linked there is not only one nurse there at all times, but three nurses. Thank goodness he is now no longer in there!!! (They moved him after about two weeks) I was so happy when he was doing good enough to not need 3 nurses at a time anymore!

So anyways- The second night here in the CICU I was up super late as always just laying my head on the side of Ryker's bed & talking to him. It was a very quiet night, most the lights in the CICU were off & it was very peaceful just sitting there with my sweet baby.

Suddenly the equipment for the baby boy right next store (there is no wall between us, basically in the same big room) starts going off. His nurse came over & started to panic, she began to give him oxygen & then she yelled for help. Instantly one of the nurses pressed the emergency button & everyone in the CICU came running. There was so much kayos, & people crammed into the room with machines blaring! My heart was pounding! I couldn't watch I just laid my head down next to Ryker, prayed for that sweet baby & sobbed!! I had seen this baby's Mom here numerous times & my heart was breaking for both her & that sweet baby boy!

Thank Goodness, after about 5 minutes they had him all stabilized & everyone started to go back to their places. Ryker's nurse came walking back & saw that I was crying, she said "I'm so sorry you had to see that! That never gets any easier to see or deal with" I told her it made me feel so much better just knowing now how on top of things everyone is & quick the response is! They didn't waste a second & that was very comforting!

After that night, this same thing has happened a few more times while I have been here in the CICU. It was just usually way down the hall so it wasn't right in my face, nonetheless still very hard knowing someone elses baby was struggling absolutely broke my heart! I wanted to sleep in Ryker's room because I feared having that happen to my baby & me not being there. Obviously I couldn't always sleep there, but I stayed for as long as I could. I prayed every night that he would have a quiet uneventful night.

On April 6th. 2 weeks & 2 days since surgery (& only 3 days after his pacemaker was placed) They told us that were ready to have Ryker extubated (extubate meaning they remove his breathing tube so that he has to relearn how to breath on his own again)

They had told us they wanted to do it the day before as well, but I had begged them not to because I felt like he was not ready, it had only been a few days since he had just been re-cut open to place his pacemaker & I just didn't feel like he was fully ready.

This morning though I felt a little better about it, but still nervous & still not quite feeling like he was fully ready. I had been told by many other Mom's that extubation is the hardest part (next to surgery of course) of the whole CICU process. I hoped & prayed he was ready for it!

For the first few hours after they had pulled the tube, he would forget for a second to breath & as long as I sat right by his side, held his hand & just squeezed his hand a little he would start breathing again. He just needed a little reminder.

They had him on something called a blender or airflow, it is a small tube that is placed around his head that gives him a little mix of oxygen & fresh air up his nose. They felt like he was doing so good with that, that he wouldn't be needing anything else. For the remainder of the day he did amazing! He was taking good deep breaths & not having any apnea spells. I'm such a proud Mommy!

I was in his room till about 1:30am & he was still doing great!!! His amazing nurse Kristen (one of my favorite nurses here) said that if he continues to do as well as he is doing that I would be able to hold him in the morning!!!! :) :) :) Also, that when I come to see him in the morning he would be in a big boy crib, no more teeny tiny surgical bed! So I was so excited just feeling like I was finally seeing the light at the end of the tunnel. Ryker was doing amazing & we were moving in the right direction. I was finally able to breathe without a weight on my chest & it felt great!

The next morning I woke up super early, so excited to go see my baby boy! I got all prepared with my camera & all, then headed up to his room. It was the first morning that when walking into the CICU I wasn't terrified what I was going to see. There had been so many times in the past I would be walking towards his room & I would see a team of people in there & panic. This was the first time I didn't worry about that. As I walked towards his room I ran into one of Ryker's previous nurses Angela (another one of my absolute favorites) & I was so excited to tell her had been extubated & did amazing! She was so happy for Ryker & I continued on my way to his room with so much excitement.

As I walked into his room I felt like I was hit by a train.....He had this devise on his head that looked like he had just had brain surgery. He looked so uncomfortable & obviously was not doing very good. I stood there frozen, wondering what in the world happened in the few hours I had been asleep?? Just then his nurse walked in, I asked "What is on his head? Is he okay" She said "Its called C-PAP its to help push more oxygen into his lungs & encourage him to breathe better on his own" I said "but he had been doing so good, what happened?" & she said "Well he had an incident at 5am this morning & scared everyone pretty bad" By this point I was shaking.... I said (now with tears running down my cheeks) "It wasn't one of those emergency code situations was it?" She just looked at me with a look that ripped my heart right out of my chest, I could see the pain all over her face & she didn't need to say anything more! I knew what had happened.....I knew what I had witnessed that second night here in the CICU, I knew what my sweet baby boy had gone through & she didn't need to say anything more.

My mind was going crazy....Why hadn't I been here!? I shouldn't have left! My poor baby stopped breathing & I wasn't here for him! I know that logically I can't stay in his room 24 hours a day but still, I wish I had been here! Or maybe its better I wasn't... what would have happened had I been here, would I have lost all control & just been in the way of the Nurses & Doctors trying to save him? Ahhhhhh......I just wanted so badly to have my baby be done with all this & have him be healthy & happy so I could take him away from all this pain & torture!

I went to call Jason to let him know what was going on so he could come up to Ryker's room, but just then Ryker woke up & was so sad! I knew I needed to pull myself together & be strong for him. I tried my hardest to soothe him, but he hated the CPAP so bad, nothing I was doing was helping. In previous times when he had been upset about things that were being done he would scream (with no sound coming out because of the ventilator) & kick & fight whatever it was going on, then his face would go redish purple & he would hold his breath because he was so upset. This time though that was all gone & it terrified me! He was upset because he didn't like it, but he didn't fight it at all, he looked so worn out & he laid there exhausted & just cried the saddest tiny cry.

I was SO scared....... was my baby done fighting?? My whole chest sank just thinking about it & the tears came rushing back! He just looked so exhausted, I didn't know if he could continue the way he was going any longer! My poor baby didn't have anything left in him to give!! All I could do was try to comfort him & pray with all my heart!

After 3 or more LONG hours of trying our hardest just to get Ryker to continue breathing, I wanted so badly to have him put back on the ventilator! My poor baby was exhausted & needed a break! Poor Jason still not knowing what was going on, text me to let me know that Chris & Lori were here & that they had brought us breakfast. I hurried & text him back between all the craziness that Ryker was not doing good.

Within 10 minutes or so sweet Lori walked in right behind me & put her arm around me, tears instantly started rushing down my cheeks....I had been trying so hard to be so strong with everything going on & I couldn't fight back the tears anymore! She was so sweet & talked me through so much of what was going on, she talked with the nurse to get the whole report (she is also a nurse so she knows all the nurse lingo) & she was just there for me in ways I would have never expected her to be & I appreciated it so much more than I think she could ever understand! Thank you Lori! I absolutely adore you! You & Chris are stuck with us forever whether you like it or not! :)

A little later Chris & Jason came in the room & convinced me that I had to go eat & pump, it had been over six hours since I had taken a break & I knew I needed to, even if it was just for a minute. I walked up our room & as soon as I closed the door I started sobbing uncontrollably! I felt so helpless, my poor baby was going through so much & I couldn't do anything to stop it. I knew I needed to talk to someone so I could let out my anxiety, so I called my Mom. Once again (just like when I called her the day of our first ultrasound when we very first found out about Ryker's condition) I was crying so hard that I couldn't get a single word out....I worried that she feared the worst, so I tried to calm myself down so she could understand me. I told her everything that was going on I she helped me so much to release my anxiety & to calm down.

After a good 20 minutes or so of getting it all out, I felt like I could go back to Ryker's room & be strong for him once again. One of the many things I have learned through this entire process, is that its okay to cry & that I NEED to cry sometimes or I will literally make my self physically sick & therefore I cannot be there the way I need to be for my sweet Ryker or for Jason & my other kids. This was a hard concept for me to learn in the beginning, I just always wanted to be so tough but I have realized that being "tough" is not the strongest!

When I went into the room Dr. Del Nido came in & said "I think its time to re-intubate Ryker, he is just way too exhausted to keep doing this" I absolutely agreed!! I wanted them to put that tube back in so bad so that he could finally rest & hopefully have some food soon too. Dr. Del Nido said that Ryker is just so tiny & so skinny that he doesn't think he has a single calorie left on his body to burn & this is why he felt like may be the problem as to why he did so good for 19 hours & then now just can't do it anymore. He is literally exhausted! So he wanted to re-intubate him & then give him a good week of full feeds & lots of rest so he could get strong before they try extubating again.

The team came in to do the re-intubation, they told us to give them about an hour to get him paralyzed, re-intubated & all settled. After that hour passed I was a little scared to go back into my him room because I feared seeing him back in that paralyzed state again. Every time we have come back after having him be paralyzed or any sort of operation it is so hard for both Jason & I to see our baby so helpless & colorless. But this around we walked in & were so relieved! He looked awesome! The color was back in his face & the ventilator was breathing for him so he could finally get some much needed rest. I was so happy for him to finally have some peace & not have to work so hard!

The following week was a quiet one. The Doctors & Nurses focused solely on getting Ryker lots of rest, getting his calories up & putting some meat on his bones. They also did LOTS of pressure support sprints to build up the muscles in his lungs. It was a very uneventful & peaceful week....I loved it!!! I have come to love & appreciate days that in the past I may have considered "boring" :)

Here is a picture of him shorty after extubation, with a nasal tubing called "High Flow"
So Peaceful :)

Saturday, April 14, 2012

PaceMaker

On March 29th- 8 days after Ryker's surgery, the attending Doctor of the CICU came in to talk to me. He seemed a little concerned when he approached me so automatically I was on edge. He started by playing with Ryker's temporary pacemaker (all babies that come out of open heart surgery have a temporary pacemaker to pace their heart until it can pace on its own again) So he played with that for a second & then he turned to me & said "Ryker has something called Heart Block where the top & bottom chambers of his heart are not communicating with each other, most people that come out of open heart surgery have heart block to begin with but then the heart slowly regains its strength & can communicate on it's own again without the pacer. We normally say that if the heart doesn't start communicating on its own within the first 8 days it is a concern & if it hasn't by 10 days we consider putting in a permanent pacemaker."

I didn't know what to say! My baby has already dealt with SO much, now this!?! I was sick to my stomach....I had thought things were going so well! I asked the Doctor if it was very often that newborns had to get pacemakers, he said said "No not very often, more often this happens after the 3rd stage surgery not the first, but it does happen" I wanted to know so much, but then I wanted to just hope & pray that the heart block would improve over the weekend & that we wouldn't have to worry about it.

By that night I was having the worst anxiety about it, I was trying so hard not to stress about it & just pray that it was going to work itself out. My sister in law Tisha had posted something on Facebook about it on our Miracle Ryker page & the Heterotaxy Network page & instantly we got a lot of positive stories about other kids with pacemakers. I found by reading the stories that the pacemakers were more of a backup plan & a help to the Mom's sanity knowing that their baby's heart was beating correctly no matter what. This started to make me feel so much better, at least enough to sleep that night.

The next morning I went up to Ryker's room & Dr. Del Nido was there. I spoke with him about the pacemaker & instantly all my fears about the pacemaker were gone. I knew then that if Ryker had to get a pacemaker it was because he really did NEED it & it was for the best. He told me that if down the road Ryker's heart no longer needs the pacemaker it will sit by & let his heart do all the work & be there as a backup plan for him in case of an emergency situation. He helped my sanity so much, like he always does!

On Saturday night Ryker's nurse told us that he was going to finally get his chest tubes out! I was so excited for him! She said that we would have to leave for about an hour while they removed them & got him all cleaned up. When we came back into his room my eyes filled up with tears....he looked SO good!!! It was the first time since his surgery almost 2 weeks earlier he had started to look like MY sweet little baby boy again! It was such a good feeling to look at him & really see how far he had come! I was so excited that I took a picture of him & I sent it to Tisha. I told her that I wasn't quite ready to show anyone else yet, but I really wanted her to see how good he looked. It was the first time she or anyone else (beside myself, Jason or my Mom) had seen him at all since before surgery. Needless to say it was an emotional moment, but such a happy one as well...our baby was on his way down the path of recovery! :)

On Monday morning things had not changed with his heart block & as much as I was devastated to hear now for sure he did need the pacer, I knew it was for the best. They set the appointment for 8:30 am the next morning. A morning that Dr. Del Nido would not be here for...which he had pre-warned me of & promised me that he would set Ryker up with the best. And he did. His name is Dr. Baird a very nice and compassionate surgeon! We were so happy to have him!

I didn't sleep very good Monday night knowing that once again I had to send my sweet boy back to the O.R. again! I had just helped the night nurse change his chest incision dressings & his incisions were healing so well & looked amazing! He had been doing good & looking so good that it absolutely crushed me to know I had to send him back to the O.R. to get his incision cut open again & go back to where he was a week ago by being paralyzed & in so much pain all over!! My poor baby boy had been through so much more than most kids go through in their entire lifetime & he is only 3 weeks old! I just wished so badly that I could take his place!!

Tuesday morning I got up to his room at 6am so I could spend lots of time with my sweet baby before I had to send him away once again. He was wide awake & looking at me so sweet! I could feel his energy & love so much! He just stared at me so contently. I sat by his side & talked to him & cried to him knowing that this would be the last time in a few days that we would have this moment again. I said to him over & over (like I do many times each day) "Ryker you are so brave & so strong! Mommy is SO proud of you, I love you with all my heart!" I want so badly to have him really KNOW & understand how amazing I think he is! I look at him & all he has been through & I have such a hard time comprehending that he is just a teeny tiny baby. I can feel his spirit & his energy & it is SO big! I feel like he understands all that is going on & he knows that it is going to be okay. This sweet little boy has taught me so much more than anyone else in the world ever could! He is my little Miracle Man & I am so grateful that he chose me to be his Mommy! :)

About 8am the Anesthesiologists & Surgical Team came in once again to get the consent forms signed & get him all prepped for surgery. They told me that they were going to give him his sedative drug right there so that he didn't de-sat (have his oxygen level drop) on the way to the Operating Room. So while I was holding his tiny little hand & he was squeezing mine so tight, he was given his sedative & slowly let go of my hand as he fell asleep. It tore me apart that he had to be so strong once again!

No matter how many times I sign those forms & no matter how many times I send my sweet baby back to the Operating Room, it never gets any easier. It is so gut wrenching to see my tiny baby in a hospital bed, being wheeled off by a team of people in blue scrubs, as I am praying to God that I get to see him again!!

The nurse called me at about 10:45 & said that the surgeon was just finishing up with the surgery & that we should head to the waiting area so we will be there when the surgeon is ready to meet with us. So I rushed down to the third floor, the same place we had been for 6 1/2 hours during Ryker's first surgery, a place I had tried so hard to avoid since then. It gave me a horrible stomach ache just walking in there, my emotions started to take over & then I pulled myself together & told myself over & over- "Its just a pacemaker & the surgery is almost done, he is going to be okay!"

By about 11:30 I was getting sick, I hadn't heard anything from the nurse & it had been 45 minutes since she had called me saying they were almost done. My mind was going crazy, I was trying so hard to not think the worst & to stay positive! I knew everything was going to be okay.....but why was it taking so long!??

By 12:00 Jason & I both looked at each other with worried looks on our faces, I said "I am getting a little nervous, I wonder what is taking so long" Just then Jason & I stood up to go look for the nurse that had told us to come down over an hour ago to see if she had heard anything from the surgical staff. As I walked out to find her she walked over to me & said "I was just coming to find you, the surgical nurse said that they are just now closing up his chest & that the surgeon will be out to talk to you soon" I asked her "Is everything okay??" She said "Yes everything is okay, apparently it took the surgeon a while to get the pacer leads in the right spot" I was SO relieved! That feeling of not knowing if your baby is okay is the worst feeling in the world!

Dr. Baird came down to meet with us. He said that the surgery went really well & that it took longer than expected because he wanted to make sure that his pacer leads were in the perfect spot so that Ryker's heart got the best pace possible. He said we could head up to see Ryker in 30 minutes. I was so happy to hear that my sweet baby boy was over this little speed bump & could continue on to recovery!!

As we walked into Ryker's room it hit us like a ton of bricks!!! Our poor baby.....I had known that he was going to go backwards, but I didn't know how much! It was nothing like the first time but horrible nonetheless! He had finally gotten to the point of opening his beautiful eyes & looking at me, looking around & communicating with me! He was looking so good that I could take a picture & feel okay showing it to others. He had come so far! But no matter how heart broken I was I knew that he was going to get back to where he had been plus some! I knew there was only up from here & that now he is on the road to recovery & I can't wait to see how much better he does this time around! :)


Here is the picture I sent to Tisha a few days before he got his Pacemaker in....Such a beautiful, sweet baby boy!!!

Missing my girls!!!!

Up to this point with all that has been going on I have felt like my anxiety & stress of missing my girls has had to be put onto the back burner so I can physically, mentally & emotionally be here 100% for Ryker. Just a few days before his surgery I suddenly felt so at peace with it & knew that God had taken that anxiety from me knowing that I had to be here for Ryker. I knew without a doubt in my mind that my girls being in Montana with Jason's family they were not only being taken care of, spoiled & loved to bits! But that they were having fun & loving having a new little adventure.

Right around March 28th one week after Ryker's surgery, all my anxiety of not having my girls here with me came flooding back! I woke up that Wednesday morning crying & in a panic! I had the most horrible dream about me abandoning them in some place down town SLC ( I know it sounds so ridiculous but it seemed so REAL & was SO hard for me ) In my dream Braylee kept saying to me "Mommy you promised you would never leave!" I woke up feeling like I was neglecting my babies by being here, even though I know they understand.

That entire day these words with Braylee's sweet little voice kept repeating in my head over & over again! I couldn't get them out! I kept seeing her sweet face filled with tears & Addi so confused why I would do such a thing. I felt like I was going to start having panic attacks! I need my babies! I need to see them & hug them to tell them that I am always here for them but I couldn't! I wanted more than anything to just have my sweet little girls in my arms & never let them go!

We had started trying to plan on when they were going to come out to see us & no matter what we tried there was no way to put an exact date on when Ryker would be out of the CICU. As much as we wanted to plan a date & get the flights booked for them & their brothers to come out we couldn't. Every nurse we talked to would say "Ryker could be here in the CICU for 2 weeks or 2 months you just never know" So I knew there was no way to plan anything.

That night I couldn't handle it anymore! I felt like I had 1000 pounds weighing on my chest & I could hardly breath! I was sitting in Ryker's room with my Mom & as much as I tried to cover the way I was feeling & talk about other things I couldn't. My Mom & I went up to the parent sleep space where we are staying & I told her I needed to go lay down. I knew I just needed to be alone....I walked in the room & lost it entirely! I didn't know how much more I could take! My whole body felt like it was shutting down & I couldn't control my crying! I just wanted my family back together again with our sweet Ryker healthy & happy in my arms! I didn't know how much more I could take.

Just then Jason came in the room, he didn't say a word- he just laid on the bed behind me, wrapped his arms around me & held me so tight. He knew that he didn't need to say a thing, he knows what I am feeling like no one else ever could & he knew I just needed him to be there for me. I just needed to let it all out & cry & he was there for every second. I know I have said this so many times before... But I am SO grateful for him!!! I don't know what I would do without him! No matter what we have gone through & no matter how big of a breakdown I have, he is here for me no matter what & he knows exactly what to do to make me feel better! I love you baby more than words can express! I am so happy I have you!

Later that night we were skyping with our girls & I could tell that Braylee wasn't her regular bubbly self. I asked her what was wrong & she told me she was fine. After talking later to Joan (Jason's Mom) & Jason's sisters, I found out that Braylee wasn't doing very good...she was happy & having fun but they could tell she was bottling up her feelings. This ripped my guts right out of my chest to hear! I wanted so badly to hold her & love her & let her cry to me but I couldn't. I thought of every way possible to try to get her to open up to me because she wouldn't any of the times I had tried. One of the times she said to me in the saddest little voice- "I just want to talk about school Mom, I don't want to cry..." I didn't know what to do! Why did we have to be so far apart?!? Why did all my sweet little babies have to be going through SO much at such a young age?!? Why, why, why!!!

The next morning Jason said- "maybe if you & Braylee skype & everyone else leaves so she knows that everyone is out of both the rooms & no one can hear your conversation she will open up" I knew Braylee just didn't want anyone but me to know her feelings or to hear her cry, so I knew it would be so good for her.

So that night I called Bray on skype & had everyone leave both rooms. She was so excited to have time with just me! This conversation was by far the hardest one I have had in all my life! Braylee started by saying "Mommy, every night I cry when I am trying to go to sleep. I try really hard not to because I know you don't want me to be sad, but I just miss you so much!" I told her that every night I do the same thing & that it is okay to be sad, that being sad just showed us how much we care about each other! We continued to talk & cry to each other for quite a while. It was so extremely hard to sit there in a room clear across the country & watch my baby girl on my computer screen sob her eyes out to me & not be able to grab her, hold her & love her! I wanted more than anything to take away her pain & her sadness, but I knew I couldn't. I knew all I could do is try to talk her through it & let her know I feel the same way & that its okay.

After we talked for a while she seemed so much better! She went back to smiling & looking like my sweet happy girl. I felt so much better. For whatever reason her & I both had our breakdown, missing each other moments at the same time & I am so glad! We were able to be there for each other & truly know how much we care about each other!

I love this little girl SO much! She has the biggest heart & she cares so much!! I miss her & my sweet little Addi more than words could ever describe!! As much as it kills me to hear that they are sad I am so glad that they miss me as much as I miss them! They are my loves, my world, my life! & I couldn't survive without them!! I love you girlies, I love you both SO much!!

I cannot wait to have our family back together again!! The only thing right now that keeps me sane is knowing that soon enough we will have our handsome big boys & our beautiful girls out here in Boston with us together with our healthy happy Ryker together again as a family!!! I know that day is coming even if it is coming slowly & it will be the PERFECT day!!! :)


This photo is proof that a picture says 1000 words!

As much as this photo makes me sob uncontrollably whenever I look at it....I LOVE IT! I cannot wait for this moment!!

Wednesday, April 11, 2012

Dr. Del Nido

I want to take a moment to let everyone know how unbelievable I think Ryker's Cardiac Surgeon is-
Dr. Pedro Del Nido


With being here in the Children's Hospital Boston & with being part of a few groups for families with Hetertaxy children, we had heard so often that Dr. Del Nido was literally a lifesaver & a miracle worker! But I had no idea until we have now found out first hand.

Like I had mentioned in one of my earlier posts- A family member of ours has a neighbor that has been here to Boston to have his child have surgery done by Dr. Del Nido. He was shocked when he had found out that our baby had Dr. Del Nido as his surgeon because he has a never ending waiting list & that children have died waiting to get an operation from him. Dr. Del Nido has taken on Heterotaxy cases that others Doctors around the world have told the parents are a lost cause. And the best part about that is not only does he do the surgery that no other Doctor would preform but he succeeded at it!

The night before Ryker's surgery we finally got to meet The Famous Dr. Del Nido! When he walked into Ryker's room he almost had a "heavenly" presence about him. Very soft loving voice & he made sure he covered every base to make sure all our questions & concerns were addressed. At the end of this conversation he said "Do you have any other questions I might answer for you?" & I said with tears running down my cheeks- "please take care of our baby!" & he said "I will, I promise!" And I knew he meant those words! I will never forget it in my life!

One of the mornings soon after Ryker's surgery Dr. Del Nido came into Ryker's room and looked at me with a disappointed look on his face. He said "Mom, Please tell me you have moved from that spot since I saw you there last night!" I told him I had slept for a few hours. Then he lectured about how I needed to take care of myself better. Later that night I had not been there when Dr. Del Nido had checked in on Ryker, I was so upset that I had missed him while I was out pumping. The nurse told me Dr. Del Nido was actually really happy to not see me there, he told her that she needed to make sure that I don't stay here too much & that I was getting some sleep & taking care of myself. This goes to show what a caring, AMAZING man he is!! Not only does he check in on my baby constantly & care SO MUCH about him, but he cares about me too.

When Ryker's PDA vessel was open & they hadn't known yet what going on, Dr. Del Nido was in Ryker's room frequently looking over him & his numbers trying to figure out what was going on. There were 3 different times during that night he called while I was in Ryker's room to ask Ryker's nurse how he was doing & telling her to alter different things. These phone calls were between midnight & 3 am. I realized then that he wasn't going to sleep until he found out what was going on with my sweet baby! He didn't just preform the surgery & then pass him along to the CICU staff. He really cares that my baby not only made it through surgery but that he goes home with us healthy & happy! He cares more than any other surgeon I have ever met.

Jason says that he is going to tell Dr. Del Nido that he needs him around as much as Ryker does for his own sanity reasons (so I'm not a total basket case), because no matter how stressed I am about something that is going on with Ryker or the other Doctors, Dr. Del Nido can walk in and calm my fears by explaining everything in a way I understand & show me what is best for our baby & why.

I am forever grateful for this man for not only taking my baby's case & moving around his schedule to do so, but that he succeeded at it & my baby boy is alive today because of him!

We are doing a Thank you Dr. Del Nido on my Miracle Ryker site. Here is the info-

Can you believe on April 21st it will be the one month anniversary of Ryker's first surgery?

As you may know Ryker has one of the best surgeon's in the world Dr. Pedro del Nido. We are so blessed to have him as Miracle Ryker's Doctor. We cannot thank him enough for taking such good care of our baby BUT we do want him to know we all care about Ryker and in a small way shout our thanks.

We are asking RYKER FANS to send a thank you card to Dr. Pedro del Nido and include a snap shot of your family. Please write we are Ryker fans on your card and mail it by April 16th to ensure it will be delivered around April 21st (the one month anniversary of Ryker's first surgery).

Please address to:

Dr. Pedro del Nido
c/o Children's Hospital Boston
300 Longwood Avenue
Boston, MA 02115


Thank you for your support and for being a RYKER FAN.


Also-
Here is a tribute another Dr. Del Nido fan did that I have to share-

http://youtu.be/OSRT2LEeFwA

Tuesday, April 10, 2012

Cardiac Intensive Care Unit

Only two times in my life have I ever felt the same "I want my Mommy" feeling you get when you are a kid. The first was back in 2006 after I had miscarried with our first child & the second was right now! Without me even saying it, my sweet Husband could hear my cries, so he called my Mom & asked her to come to Boston. My Mom booked the first flight that came out of Utah that got in late Thursday the 22nd.

I was so excited to see her when she got here, however I was terrified to take her up to see my sweet baby that she hadn't seen since the day he was born. He has been through SO much that I almost had this motherly protective instinct that wanted to shelter him from anyone seeing him the way he was. I knew it was going to be another extremely emotional time....and it was! My Mom & I sat by Ryker's side talking about how while Ryker's body was healing itself, he could possibly be running around with his cousin D.J. (my sweet little 2 year old nephew that passed away tragically last June) I truly believe that God wouldn't make a sweet innocent baby stay in their body while it is paralyzed & going through so much trauma.

Early Friday morning at about 6am we woke up to Jason's phone ringing. I panicked! I knew it was the CICU calling. Ryker's nurse started by saying- "Ryker is okay, but we do have a few concerns, so we are going to send him to the Cath Lab to see what is going on. Can you come here quickly so we can explain everything?" Jason & I rushed to his room & they informed us that his lactate levels kept going up, he was not having the urine output that he should be having & that he was starting to get a light grey tint to his skin & they didn't have an answer as to why this all was happening, so they needed to do an "Ablation Surgery" in the Cath Lab to see what was wrong.

We got all the same release forms signed from the anesthesiologists & the surgical staff. Then had to let them take him hoping once again everything was going to be okay & praying for the best. Within about 2 hours my Mom & I were able to go back to his room. Dr. Del Nido came in to inform us that Ryker's PDA Vessel (a vessel that is only open during pregnancy & is supposed to close after birth) has re-opened & is causing to much blood flow to his lungs. The only way to close this vessel was to go back in through Ryker's chest (luckily still open) & close off the vessel to prevent anymore damage.

I was a wreck hearing this news! My poor baby had been in the O.R. only two days before for MAJOR open heart surgery, then to the Cath Lab this morning for an Ablation Surgery & now back to the O.R for another heart surgery!?! At only 2 weeks & 2 days old. How much can one little soul take?

Once again I had to sign all the same forms from the anesthesiologists & surgical staff & send my baby away to the Operating Room, praying to God to please spare his life once again! I spoke to my baby boy for a moment, kissed his sweet head & then buried myself in my Mom's arms sobbing as they took him away once again.

The operation took about 21/2 hours but my Mom made sure that the Doctors took down her cell phone number so that Jason & I could lay down & try to get some rest while we waited. When I woke up my Mom told me the Doctor had called & said the surgery went perfectly & that Ryker was already regaining the color in his face & looking a lot better! I was so relieved to hear this news!

We headed back to his room. It was so good to see him, he had the color back in his face! Dr. Del Nido said of all the things he thought may have been wrong that the PDA vessel being open was the easiest fix. I was so grateful to hear that! Now the plan was to get him on the right track back to recovery & pray for no more setbacks!

That night I stayed in Ryker's room until 2am & was back up there around 6am. I just had that fear of waking up to the phone ringing again so I would rather be here with him at all times to make sure I didn't miss a thing!

From then on I never wanted to leave that room. My Mom & Jason literally set curfews for me so all the nurses knew when they had to send me to bed. I frequently have & still do fall asleep with my head & arm resting on the side of his tiny bed. He is my little HERO & I love him more than words can describe!!!

This is a picture my Mom took without me knowing....Thanks Mom!

Monday, April 9, 2012

Surgery Day

The day had come.......

I didn't know if I was ready for it or not, but really how could you ever be ready for a day like today? I knew it was what he needed & the only way that he could live a normal-perfect life, so in a way I was excited for him to be on the right track to being a healthy baby, but of course was in fear of whats to come.

We had to have Ryker on floor 3 (the surgical floor) at 7am to hand him over the the anesthesiologist's team. So Jason arrived back at the room by about 6am so we could have time together before it was time to go.

Needless to say...it was extremely emotional! We each held him & loved him. Talked about how great it was going to be to get past this next hurdle & be back at home together as a family. Then we held each other & prayed together. We knew it was the next step to getting our baby healthy & that was the only thing we could say to get us through it.

The nurse walked us down to the 3rd floor. I held him the whole way, even though the bed had to come to with us I wasn't about to put him into it. I savored every single second I had with him. We arrived at the floor & we were automatically greeted by the surgical staff & anesthesiologists. Panic started to take over my body, I knew I was going to have to hand him over at some point & didn't know if I could do it. I tried to keep myself as calm as I could so I could just be with him with no worry before I had to let him go.

The time had come....I don't remember this now but Jason said the nurse had to ask me 3 times if she could take him. I just remember staring at him & praying with everything I had that God would watch over him. I handed him to the nurse, tears rushing uncontrollably. She let Jason & I kiss him one last time, then he was gone.

My knees were buckling, I felt I might collapse. I fell into Jason's arms & sobbed. It is all such a blur as I think of it now....when I look back all I remember is that pain & fear overwhelming me. It makes feel nauseous to even think of it. There is absolutely no way for me to put into words what we both went through during this hard time. I honestly don't know how we got through it.

We were told that surgery would take between 6-8 hours to complete. Other Mom's I had talked to said to always plan on longer so when it does go longer you don't go crazy! I was mentally planning on 10 hours, so when the nurse called us to say the surgery was done & the Doctor would be out to talk to us, after only 61/2 hours I was terrified!!! I thought for sure something went wrong. Jason & I sat in the waiting area for Dr. Del Nido to come talk to us for what seemed like an eternity. I think we both had the same fear but were to scared to say it, we just sat there holding each other in silence.

Finally Dr. Del Nido turned the corner & began to walk towards us. It felt like he was walking in slow motion & that he would never make it to us. Finally he sat down in front of us & said the most amazing words we could have ever heard- "The surgery went well!" Tears just started rushing down my cheeks, our baby was okay! He made it!!! He told us all the details of the surgery & that we could head up to see him in about a half hour. I have never felt so relieved & blessed in all my life! I knew God had held my baby the whole time & kept him safe. I also knew that my sweet Grandpa Crimin & Jason's Grandma Warner were there with him holding his hands keeping him happy in the process.

We headed up to the Cardiac ICU. Both so excited to see him yet so nervous for what we were going to see. Were we going to be able to handle seeing our innocent baby in a post-operative condition? When we spoke with Dr. Del Nido he made us aware that Ryker would be completely paralyzed for the next few days & that he chose to leave Ryker's chest open for many reasons, & that it would be closed within a few days.....I tried my hardest to take deep breaths & prepare myself for the worst, however I know now that there is nothing in this world that could have prepared me for what happened next.

They told us Ryker was in room 25, then opened the CICU doors for us. Walking in there was again one of those slow motion moments, feeling like I was never going to get to him & that I was walking into darkness not knowing where I was going or what I was getting myself into by continuing to walk. Everything so high paced Nurses & Doctors rushing past us, equipment everywhere, machines going off....it terrified me knowing my baby was in here & that he had to be here! MY baby was so bad off that he had to be in an Intensive Care Unit!! I tried so hard not to panic or to let myself start crying because I knew once they started flowing I wouldn't be able to stop them & I knew that it was only going to be worse when I saw him.

As we walked into his room everything began to echo.....Jason & I both froze in place when we saw our sweet boy! There are no words in the world to describe the feelings I felt! I will quote Jason's status on Facebook from that day because I feel he put it best-

"Thanks to all for all the love and support. Today I was rocked to the very core of my soul when I walked into recovery and saw my little man. Wow, what emotions I am feeling right now!"

"Rocked to the very core of my soul....." This is the best way I can even begin to describe it! I couldn't do anything but look at my sweet baby with tears rushing down my cheeks. Why does this have to happen to such a sweet, innocent & tiny baby?? Why does my baby have to be taken to almost death on an operating table to be able to make it to a month old?? Why him & not me??? I know these are all things I can never get the answers to but they go through my mind every day! He doesn't deserve this!!!

The remainder of that day passed by pretty quickly. As long as I was by his side, talking to him & running my fingers through his hair I was okay. But I knew I was going to have a hard time sleeping that night & many more nights to come, I didn't know if I could leave my baby's side!

Jason & I were lucky enough to get a "parent sleep space" at the hospital (only CICU parents are guaranteed a space because there are so few) the room is about 10X5 feet with a twin sized bed & a small nightstand. Even though it is very small & not super comfy I am so grateful for it so that we are able to be close to our baby! Our room is only a short 5 minute walk through the hospital from Ryker's room in the CICU.

When we were in the Center for Families reserving our room, we asked if two people could sleep in the room. The lady looked at me strangely & said "I guess if you wanted to, it only has a small twin sized bed" Jason & I didn't care at that point if the bed was a toddler sized bed. We hadn't slept in the same building as each other in over a week & with all that had gone on that day & all the flooding emotions we were dealing with, we needed to be able to be there for each other.

After staying in Ryker's room til about 3am & never wanting to leave. Jason finally convinced me that we needed to go to bed, saying "we will be back in only a few hours."

That night in our tiny twin side bed, I cried in Jason's arms until I fell asleep....

Video for Daddy!

Here is my sweet baby boy only a few hours before surgery.....He is so perfect!!!

I can't figure out on my laptop how to turn it ride up so I'm sorry its turned to the side. :)


Sunday, April 8, 2012

Children's Hospital Boston

We arrived here at Children's Hospital Boston on Thursday March 15th around 6am through the Emergency Room doors. Ryker was 8 days old. Our arrival has been SO beyond emotional yet a breath of fresh air to finally be across the Country, in the Hospital that we had prayed so hard for! Automatically they got the ball rolling to get him all the the help he needs & fast! They got all his records transferred from Primary Children's Hospital but they still had a lot of questions unanswered so they still had to do many more- Echos, EKGs, Ultrasounds, X-Rays, etc. Poor baby boy had to go through the ringer again! But as long as I was there with him holding his hand or running my fingers through hair he was so brave & did so good! He is such a sweet baby boy!!!

After all the testing had been done & we had met with numerous Cardiologists & Doctors, we finally got to sit down to find out what exactly was REALLY going on with our baby. His diagnosis had some similar parts from Primary Children's diagnosis but so many things completely different. It honestly scared me to think how many things had been missed before. The last thing in the world I want to do with sharing my story is make it seem like I think Primary Children's Hospital is a bad hospital because I don't feel that way at all! They are an amazing facility with A LOT of amazing people & doctors! Ryker's condition is just SO complex that he needs to be with the best in the country & be with Doctors & nurses that have seen & dealt with his condition many times before & this is why we are here.

Ryker's diagnosis is- Heterotaxy Right Atrial Isomerism/Asplenia, AV Canal, Double Outlet Right Venticle, Total Anomolous Pulmonary Venus Return, AV Valve Regurgitation, Hypo plastic left Ventricle, with Ventricle Discordance.

After being given his exact diagnosis, we were told the hard news that had we not gotten him here when we did, Ryker would have had, at best 24-48 hours left of life. Our baby woud have gone to sleep around 9 or 10 days old & just not woken up.......This was heart wrenching! I cannot thank God himself & the wonderful "Parental Instinct" enough! As much as it was so hard to heard what was REALLY going on with our baby, leaving no room left for the positive "what ifs" & "maybes" It was SO good to finally know for sure that this IS what he has & now lets get it fixed, with no more question marks remaining! We had so many completely different diagnosis' in the past that we were starting to wonder what one was right & that feeling was finally gone & it felt wonderful!!

Dr. Marx (Ryker's new Cardiologist) told us that Dr. Del Nido (The top Cardiac Surgeon in the world!) was doing whatever he could to get his schedule for this next Wednesday the 21st of March moved around so he could get Ryker in for his first operation. He said that they would have to let us know because Dr. Del Nido (needless to say) has an extremely tight schedule. His waiting list is currently 10 months to a year & he is going to try to move his schedule around to fit in OUR baby!?! What an amazing man!!!

With knowing Ryker's surgery could potentially be this next Wednesday I wanted to soak in every second with him even more than I already had! Since his birth I had always been a little bit of a fanatic about leaving his side for more than two seconds, but now knowing what I knew I REALLY never wanted to be apart from him!

They would only let one parent sleep at his bed side so Jason would go back to Chris & Lori's house each night & then Chris or Lori would bring him back each morning (They are so AMAZING!!) So I had every night alone with just me & my little buddy. I don't think I ever slept! Right around 1am every morning he was wide awake & just staring at me with his big beautiful eyes! :) There was nothing in the world that could stop me from staying up all night long with him every single night! He was so alert & sweet all of these times! His eyes just amazing, I could stare into them all night long....& did! :) Although I never left the room, the days & nights flew by. Most the time was him sleeping in my arms & other times of him looking around & being so sweet, rarely crying (unless a nurse or doctor was bugging him of course) I would talk to him & he would stare at me & then there were many times where not a word was said... I felt like we were communicating in so many other ways that words were not needed. I will never in all my life forget those times! Some of the best times of my life, although stressful, they were amazing on a whole different level that I had never experienced before!

By Sunday evening they confirmed that his surgery would be at 8:30 am on Wednesday the 21st. I was so excited to finally have the appointment with the Doctor we had prayed & hoped for! Our baby was finally going to the get the help he needed! I had so many mixed emotions- happiness mixed with fear. Once we started telling people about Ryker's appointment it was amazing to me to hear numerous stories about how close to impossible it is to get into "the famous Dr. Del Nido" & how blessed we were to have a set appointment with him. We had one family member told by their neighbor his child had gone to him & that some children have died waiting in line to get an operation from Dr. Del Nido & how lucky we were to get him for a Cardiac Surgeon!! This was heart breaking for me hear! How did we get so lucky? Especially if other children have died waiting for him? I began to really truly realize how blessed & special this sweet little baby of ours really is!

By Monday morning I could no longer get Ryker to nurse. I of course was so worried & talked to Dr. Marx about it. He said that Ryker was working so hard to breathe right now that nursing was like running a marathon for him. He said that when Ryker is eating he is actually burning more calories than he is taking in because his heart is working so hard. Let alone having him nurse that is way more work than drinking from a bottle. So he said until after surgery I needed to pump & only give Ryker a bottle. It broke my heart to know that my sweet baby was working so hard on a daily basis that even eating was hard work for him! I cannot imagine what his body was really going through. Why can't I as his Mommy just take it all away? Why do sweet little innocent babies have to go through something like this? Why can't it be me instead??

By Tuesday morning The attending Doctor came in to watch Ryker feed from his bottle. She said that knowing he had a hard time the day before nursing made her nervous that by today bottle feeding would be too hard for him as well. After watching him drink only a small amount from the bottle she said that he was going to end up damaging his lungs &/or his heart by doing this, therefore he would either need to be put onto IV fluids for nutrition or get a feeding tube to eat until his surgery tomorrow morning. Jason & I chose to have him get his nutrients from an IV because for one- he already had an IV that could be used & for two- he had already been traumatized enough the day before with all the pre-operative testing for him to now get a tube put down his throat.

After finding this all out I couldn't help but think- what would have happened had we just done what Primary Children's had told us to do? He hadn't been put on any diuretics before being sent home, something he was put onto immediately after being admitted here & something we now know is saving his lungs from also being damaged in the wait for his operation, & now he is too exhausted to eat anything at all without hurting his lungs or heart in the process. Had we been at home I would have continued to feed him not knowing what was actually happening. It made my stomach hurt thinking that we could have been at home not knowing that his lungs were slowly filling up with fluid from his heart pumping incorrectly & no diuretics to get the fluid out & then I would have continued to feed him not knowing it was slowly killing him! I am SO grateful they are familiar with his condition enough to know these things here & that we were inspired to come to this hospital to get him taken care of! I don't even want to think of where we would be right now if we hadn't.

That whole pre-surgery day was a very hard one! Nothing of course compared to the day that was coming next, but it was so hard in so many other ways! I had to repeatedly hold my sweet baby down while he got his blood draws & tests done to prepare him for surgery in the morning. Met with numerous Cardiologists, Anesthesiologists, & Cardiac Surgical Fellows to get consent forms signed & go over the "plan" for tomorrow. I felt like every time I signed a new form I was signing my baby's life away. It was gut wrenching!

I frequently found myself holding my sweet baby and crying! I didn't know how much more he & I could take, yet I knew tomorrow was going to be a million times harder! I just wanted to wake up from this nightmare!! I would stop for a second sometimes & think "could this all just be a dream? Am I going to have one of those moments where you wake up in a panic, remember your dream, & Thank God numerous times that was only a dream?" I wished SO BADLY it could just be that easy! I wished so bad I could wake up in my own home, with my healthy sweet baby boy in my arms, my kids & husband right by my side, & that everyone was healthy & happy once again! But I knew that wasn't my reality right now & that this was the only way I could have this sweet baby boy & I was SO grateful for it all no matter how hard it may be! I knew without a doubt in my mind that if someone came to me & said you can have a healthy perfect baby, but that it couldn't be my little Ryker I wouldn't do it in a million years! I want HIM & only HIM no matter what comes along with it- And he IS perfect! We just have to get him healthy so that he can have a perfect, healthy life!

That night was an extremely emotional night. But a very different type of "emotional" than I had imagined it would be. I had come to a point of peace & calmness. I was finally to the point that I could say "Okay God, we have done all we can do & we have taken him as far as we can take him, now we have to hand him to you & know that its up to you & your will to get him through this next 24 hours." That was extremely hard for me to finally let go! To say that if it is God's will, it will be & to know I have done all I can do & he is in God & Dr. Del Nido's hands now.

My Dad had put it perfectly when I was crying to him that night telling him how scared I was...he said "Rachel he is in God's hands now & in all reality it is God that is the the best surgeon in the world & he will guide Ryker's Doctor to do the best surgery possible" I knew this was true. I knew my baby would make it if it was God's will to have him continue here on Earth & if he didn't then I am just SO grateful that I got every second I could this perfect little baby boy! I am SO grateful that he has made it as far as he has & that he chose Jason & I to be his parents & his advocates along this journey! That was all I could focus on.

Jason text me at about 1am & told me to look on Facebook. So I did & was amazed! I had never seen anything like it before. Every single thing on my newsfeed was about Ryker & how people were praying for him & sending him positive thoughts & energy! Then the icon at the top of the page said 103 of your friends have changed their profile picture & all but two of those profile pics were my baby's face. The tears were flowing.....It was amazing to me to see how much support & love we have!!!

This was my status after I saw this-

"I am absolutely AMAZED by the outpouring of love we have received through all of this but especially tonight! It is the most unbelievable feeling to get onto Facebook & see that the majority of my friends & family have changed their profile file pics to my sweet baby's face! You are all so amazing! Thank you!!! I am so incredibly lucky to be the Mommy of this sweet baby boy & I know he is going to do amazing tomorrow thanks to everyone's love, positive thoughts & prayers! ♥"

Around 2-3am Ryker was on his regular schedule & wide awake! I am SO glad that I got to spend this time with him!! He was so sweet & bright eyed, as he always was in the middle of the night. We made a video to send to Daddy since he couldn't be there...Jason was always saying that he liked to wait till Daddy left to wake up, so we had to include him on how sweet he was being the night before surgery. Then I got to give him his pre-operative bath which he didn't like much, but he was so good. Then around 4 am we snuggled & stared at each other in perfect silence until I fell asleep with him in my arms. It was so peaceful like God was holding us both.


Here are a few pictures of our admittance day & the week before surgery....



Sweet little baby being so brave while he gets an echo


Exhausted after a long first day of testing

My favorite way to snuggle :)

Sweet sleepy baby!

Love these boys!!!

Ryker listening to his siblings on the phone :)

Sweet handsome boy!!

Always smiling while he sleeps :)

Love these eyes!!!!!

Resting after getting another IV :(

Right before his pre-operative bath....skinny-legs!

All nice & snuggled up right before surgery