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 :)
So Peaceful :)
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