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!!!
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