Spring-Like Monday

Nolan had a busy day today! I am sad because it looked like such a beautiful day here and I didn't get outside. Tomorrow I am going to try to make it a point to get out and get some of this spring-like, fresh air! I love that is lighter later, however this morning was hard for me to get out of bed.

I got into Nolan's room around 8 am and he had already had his weekly EKG. He was unclothed except for a diaper, so I decided to give him a bath. In the middle of that, technicians stopped by to do his weekly echocaridogram. He did amazing during it! After that, he took his first nap. To prepare for life outside of the hospital, today I have been keeping track of his sleep patterns so I can see what the trend is during the day and the nurses can give me an idea of what he is like at night. I have tried to keep him up, but he just fell asleep (he was exhausted). I actually rocked him...might have been the first time I have done that since this started. Before I sat down I was holding him like a normal baby and I had a flashback. Here I was, holding him...I am not scared for his life, actually very hopeful and excited...and I was HOLDING him. I hugged him and told him I waited so long for this moment.

After his morning nap, I got his play mat out and put together on the ground. Then I got him down on the floor to play and he let out a few big throw ups. (blah!) In the middle of that, one of our transplant doctors, Dr. Lal, came in and chatted with me about our weekly plan. We are gearing towards a Thursday discharge. Hopefully all goes well until then. After our chat, the physical therapists came in to play and work with Nolan. He had a really good session. His trunk control is getting so much stronger and he is really doing well rolling and has signs of trying to figure out how to crawl. He also works real hard at trying to hold his self up with his knees/legs. In time, we'll get there!

After PT, I thought it would best for him to relax. I put him in his mamaRoo. (It's a swing....pretty amazing! http://www.4moms.com/mamaroo) He just hung out in there while I did some work, and he ended up getting a second nap in. Poor guy was then woken up because they had to change his picc line dressing (which should be coming out soon!!) Shortly after that, occupational and speech therapy came by. I attempted to feed him a bottle, which he seemed a little more interested than in the past, and I swear he sucked a few times and actually took in some milk. So, that is exciting! We also fed him some bananas, which he did OK with. He has some of his teeth in, so they think it may be good for him to try some foods that he can feed himself and dissolve easily, like Mum-mums. So, we may try that out this week.

That was Nolan's day! This is definitely a bittersweet week. Nurses are coming by throughout the day to send us their well-wishes and get one last snuggle with Nolan. We do build a great relationship with many of the staff members, some who we will see in the future (like our transplant doctors), but some of the nurses we may not. We will always try to come by and say hi - but I do hope they all know how much we appreciate what they have done for Nolan and let them know we could have not done this without them! (and, of course our PTs, OTs and speech therapists!)

More tomorrow!

#nhos