Sweet Cheeks
If he didn't make it clear before, Finn told us all last night who is in charge here. Our friends up at Children's always said to me, "Finn will tell us what he needs." I don't think they had this in mind.
Jeff went back to the cities yesterday to be with Asher. I stayed down in Rochester with Finn. We didn't have a room at the Ronald McDonald House yet so I set off to get a room and some food. I wasn't gone for more than an hour before returning to the hospital. To my surprise there was a doctor and nurses standing outside of our room. "Oh, there's mom" one of them said to Dr. Schears. I looked at them quizzically. "We've had a bit of an incident" he said, my heart sunk. It turned out that Mr. Danger himself was over being intubated. So much so that he self extubated. He pulled out his own breathing tube. Slightly sedated and half swaddled, Finn broke loose and yanked it right out.
It took me a second to process. Was this okay? Can he breathe? No one was panicking. Okay, I think this is okay. I assumed they would reintubate him right? Wrong. "Let's see how he does" they said. Huh?
Did he know? It's funny that moments before I came back to the hospital I had written about missing his face. How much I wanted to see him smile, I needed something to know he is still there, under all of the tubes and cords. He looked at me so innocently, as if to say "here I am mommy!" I cried. All those tears that had been dry since Monday came streaming, full force. My beautiful baby boy was still there. He was awake, alert, engaging with me. He seemed fine, for a heart baby. I don't think I have ever laid that many kisses on his sweet face. I wanted to lick him. My reaction was so natural, I just couldn't stop. We snuggled the best we could and I washed his little face. He drifted sweetly off into dreamland. I haven't seen him look this comfortable in weeks.
Last night I slept as soundly as that little babe. I needed that reassurance from him and he delivered. For the first time, since before he was born, I slept all night. No nightmares, no anxiety. Seeing him so restful gave me peace. I know he's not better, I know it doesn't really mean anything, but it meant the world to me. No cannula, no tube in his mouth or nose, just my sweet Finnie's face. He took over my dreams and I woke up rested, almost happy.
The sun was shining and my coffee was strong. Walking into the hospital I felt reinvigorated. I didn't get a phone call overnight so it had to have meant he was still extubated. Way to go Danger! When I arrived Dr. Van Doran was at his door. She had a face. I looked in his room, still tube free. She told me she was bummed but we had to reintubate him. His lungs were cloudy and they just couldn't get him to cough up the secretions he had. It was dangerous for him to stay like this. When I looked at the x-ray I knew she was right. It was clear, or cloudy actually. He needs the help and we need to keep him safe. I attacked his face with more and more kisses. I inhaled his sweet skin until the very last minute.
The rest of the day wasn't as great as our last. Finn's numbers weren't as stable and he needed some blood and fluids. Bummer. Yesterday he had done so well. Perhaps it was related to the morning's events? I'm not sure. Throughout the day he decided that if he was going to have a breathing tube then he no longer wanted his peripheral IVs. First he took out his right hand IV and then a few hours later kicked off his left foot's. As much as he shouldn't do that, I couldn't help but laugh. He was giving them a message, he wasn't happy about all of this. What a little fighter. Our ECMO specialist Bob has been calling him Rocky.
I got a call that one of our waits is over, unfortunately not the big wait. We finally have a room at the Ronald McDonald house. After three days of staying in hotels we have a home base. I went to check in and learn all about our dorm-like living situation for the foreseeable future. The RMH is such a wonderful resource. They have several play areas for Asher, a great big kitchen and lots of things to do. I hope Asher enjoys his time here. Once again the tears came back. I am so grateful. I can't imagine trying to do this with a toddler in a hotel for an extended period of time. There is no way. At least now we have some homelike amenities to leverage.
Tomorrow I get to see Asher. He will fill my cup again. I am excited to hug and kiss his sweet cheeks, I miss those cheeks. It's going to be a great weekend in Rochester with all three of my boys.
May 4th, 2017
Jeff went back to the cities yesterday to be with Asher. I stayed down in Rochester with Finn. We didn't have a room at the Ronald McDonald House yet so I set off to get a room and some food. I wasn't gone for more than an hour before returning to the hospital. To my surprise there was a doctor and nurses standing outside of our room. "Oh, there's mom" one of them said to Dr. Schears. I looked at them quizzically. "We've had a bit of an incident" he said, my heart sunk. It turned out that Mr. Danger himself was over being intubated. So much so that he self extubated. He pulled out his own breathing tube. Slightly sedated and half swaddled, Finn broke loose and yanked it right out.
It took me a second to process. Was this okay? Can he breathe? No one was panicking. Okay, I think this is okay. I assumed they would reintubate him right? Wrong. "Let's see how he does" they said. Huh?
Did he know? It's funny that moments before I came back to the hospital I had written about missing his face. How much I wanted to see him smile, I needed something to know he is still there, under all of the tubes and cords. He looked at me so innocently, as if to say "here I am mommy!" I cried. All those tears that had been dry since Monday came streaming, full force. My beautiful baby boy was still there. He was awake, alert, engaging with me. He seemed fine, for a heart baby. I don't think I have ever laid that many kisses on his sweet face. I wanted to lick him. My reaction was so natural, I just couldn't stop. We snuggled the best we could and I washed his little face. He drifted sweetly off into dreamland. I haven't seen him look this comfortable in weeks.
Last night I slept as soundly as that little babe. I needed that reassurance from him and he delivered. For the first time, since before he was born, I slept all night. No nightmares, no anxiety. Seeing him so restful gave me peace. I know he's not better, I know it doesn't really mean anything, but it meant the world to me. No cannula, no tube in his mouth or nose, just my sweet Finnie's face. He took over my dreams and I woke up rested, almost happy.
The sun was shining and my coffee was strong. Walking into the hospital I felt reinvigorated. I didn't get a phone call overnight so it had to have meant he was still extubated. Way to go Danger! When I arrived Dr. Van Doran was at his door. She had a face. I looked in his room, still tube free. She told me she was bummed but we had to reintubate him. His lungs were cloudy and they just couldn't get him to cough up the secretions he had. It was dangerous for him to stay like this. When I looked at the x-ray I knew she was right. It was clear, or cloudy actually. He needs the help and we need to keep him safe. I attacked his face with more and more kisses. I inhaled his sweet skin until the very last minute.
The rest of the day wasn't as great as our last. Finn's numbers weren't as stable and he needed some blood and fluids. Bummer. Yesterday he had done so well. Perhaps it was related to the morning's events? I'm not sure. Throughout the day he decided that if he was going to have a breathing tube then he no longer wanted his peripheral IVs. First he took out his right hand IV and then a few hours later kicked off his left foot's. As much as he shouldn't do that, I couldn't help but laugh. He was giving them a message, he wasn't happy about all of this. What a little fighter. Our ECMO specialist Bob has been calling him Rocky.
I got a call that one of our waits is over, unfortunately not the big wait. We finally have a room at the Ronald McDonald house. After three days of staying in hotels we have a home base. I went to check in and learn all about our dorm-like living situation for the foreseeable future. The RMH is such a wonderful resource. They have several play areas for Asher, a great big kitchen and lots of things to do. I hope Asher enjoys his time here. Once again the tears came back. I am so grateful. I can't imagine trying to do this with a toddler in a hotel for an extended period of time. There is no way. At least now we have some homelike amenities to leverage.
Tomorrow I get to see Asher. He will fill my cup again. I am excited to hug and kiss his sweet cheeks, I miss those cheeks. It's going to be a great weekend in Rochester with all three of my boys.
May 4th, 2017
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