Saturday, March 2
We have been back in Boston for five consecutive months! We got back here on October 2nd after only being away for 10 days. Eight of those two were in the Barbara Bush Children's Hospital's PICU. This isn't a milestone we're particularly happy to be celebrating, but we can't dismiss how blessed we are that Cody continues to get all of the love and care he needs to get better.
Coco had a good overnight. Very uneventful. He slept well only waking once overnight. When he did wake up, as soon as he focused on his Nurse, he gave her the biggest happy smile, and then closed his eyes and went back to sleep. Cody has been smiling a lot in his sleep. He'll occasionally frown but mostly smile.
There was an issue with our nurse's phone last night, so it took three attempts over an hour before I connected with her. I was able to get the receptionist, but the nurse's physical phone was not connecting. When I did finally reach her, she had just gone in to care for Cody and would call me back. That was another fifteen-minute wait and I talked to her for about twenty minutes. She apologized, but I knew it wasn't her fault. After my second attempt and not reaching her, I assumed she was on break, so I waited a half hour. I went to bed after 1:30, woke up at 3:30, and went back to bed around 5:30. I told Benny I was sleeping in this morning. I intended on getting up at 8:30. 9 at the latest. I woke up after 10 am!!! Benny got up and let me sleep. He walked to the Hospital and Coco and Daddy got to have some one on one time.
When I got in Coco was asleep. Ben was sitting on his bed and there was a pile of stories between them. Cody LOVES story time. I gave the baby some kisses as he woke up. All three of us were together again and Cody knew it. He'd look at Ben and then at me, then he'd smile!! That boy melts my heart.
After some play time, Coco started to fall asleep again. I pumped and Ben cuddled with Cody. When I was done it was time for cuddles!! Ben held Cody first, for four hours! Cody was so playful. He couldn't get enough of his Daddy! He would play with his hair, all around his face, and put his hand over Benny's mouth asking for kisses. I sat beside them while they played and snuggled. I'd cuddle in on Benny's arm or kiss Cody's tiny toes. Cody lets me play peanut butter and toe jam sandwiches with his feet. I rub his feet and toes because I don't want him to have any sensory aversions like I do.
While Ben was holding Cody the Attending stopped by to say hello and give us an update about cath. Cody could go to cath as soon as Monday, most likely Tuesday, and definitely by Wednesday. It will be the same as previously planned. A diagnostic cath with the option of opening Cody's pulmonary veins if they need it. This cath will give his Doctors the answers they need to move forward with Cody's cares. Thankfully we'll still have Dr. Quinn for Cody's cardiac catheter. He has done all of them, but one, and knows Cody best. Also, Ben and I are very comfortable with him, so it helps to relieve a little bit of stress. I doubt Cody will go to cath on Monday, but we should have a specific date and time by Monday afternoon.
After 4 hours of cuddles, we had to put Cody back to bed before he was swimming in his wet diaper!! He got his diuretic within the last hour of cuddles. Cody got put back in bed, had his cares, and was playing happily in his bed. It seemed as if he was going to go back to sleep, so went to lunch while he was awake and happy. I'm trying to get better about not sneaking away while he's asleep. He knows we'll be back and he'll get all the hugs and kisses when we return!!
After lunch, I held Cody for four hours. It was so to play with him. He Loves his Whaley hanging toy so I took it down and let him hold it. He seemed very excited!! We played games and sang songs, Cody flirted with his nurses and stared at Daddy until he was sure Daddy was looking at him. I said he sends Ben telepathic messages for attention. Silly Daddy can't walk to the other side of the room without being tracked by Cody. Daddy has a tiny stalker and we love it!!! Once Cody was asleep we watched some TV. I call it the Guy Fieri channel. I should have known better. Coco loves his shows. I think it is the bright colors and fast actions in the shows, but it will hold the baby's attention for a little while. Tonight he slept through almost all of it. Cody had some visitors from other nurses and one of his favorite NPs, so he wasn't interested in TV anyway.
Cody slept through being put back to bed and his 10 pm cares!! A lot is involved to get him in and out of bed for us to hold him. I'm amazed he stayed asleep!!!
I can't wait to see him tomorrow! He's growing up right before our eyes!!!
Oh!!! I almost forgot!!! When Cody got very sick he was on three blood pressure infusions. These are needed to keep his BP up! Slowly he's been able to come off of some. Then he didn't do well after stopping Nitric Oxide on Tuesday. By Tuesday night all three meds were added on. One was shut off mid-day on Wednesday, so that was a good sign. Since then the other two had been weaned a bit each day. Today Cody was able to come completely off another one of those three meds and the other was lowered. We are So proud of Cody! I like to think he's proud of himself too. He's done so well and fought through to get where he is now!!
Thank You All So Much!!! Your Love and Prayers mean so much to us!!
Love Always
Ben, Taryn, and Cody
* I don't have many photos today. I just wanted to focus on Cody and our family time!!
