We got to bring Lively home on Saturday (May 15). We're very, very thankful to be home. Here he is on his way out:
I've felt pretty overwhelmed since though. Pete had to go back to work on Monday. Also on Monday, Lively had a follow up visit with his primary doctor. He's going to go back next week to make sure he's not losing weight. Lively continues to throw up and to have diarrhea, which I believe is thought to be due to his viral illness; basically, it wiped out the lining of his intestines, and it's going to take awhile for it to come back.
Lively is still getting tube feeds. I pump milk for him and pour it in a bag that is attached to a pump. The milk is pumped into him at a rate of 65 ml/hr for 18 hours a day. To convert that to something that may make more sense: that's 40 ounces a day. I'm not keeping up, and I have about 10 days worth of supplemental bottles in the freezer. If Lively doesn't gain weight, or if he doesn't start eating more solids, I'm going to have to give him some formula. I understand that's not a big deal to most people, but it is to me.
Wednesday Lively had his first appointments with Physical and Occupational Therapy. PT is to strengthen and improve his gross motor skills, and OT is for fine motor. She's also going to work on eating and swallowing with him. Both the PT and the OT saw us together, and they both seemed very positive and encouraging. Lively is so much weaker than he was before the (most recent) hospitalization, but he's doing new things each day. Today he did a lot of "airplaning," where he's on his tummy and he lifts his arms and legs off the ground at the same time. I wonder if he will crawl before he turns 1.
Lively still vomits each time we give him his medications, which is around 4 times a day. He gets 17 doses of medicine each day right now. Fortunately, we give most of them through his tube, so he doesn't have to swallow anything. Unfortunately, no matter how slowly we push in the medications, he still throws up almost every time. The medicines also go directly to his intestines, so it seems like most of what he is losing is the acid in his stomach. It's discouraging.
We've also been working on feeding Lively. I did something I never did with Annie, and I bought baby food. We're just too tired to go buy fresh organic vegetables and steam and puree them like we did when Annie started eating (these are the things about which some of my friends with 2 or 3 kids used to tease me when Annie was a baby). Again, I know this isn't a big deal for most people, but to me, it's the last step before feeding him formula. I find both baby food and formula to be disgusting. Anyway, I bought the really expensive organic, all-natural ingredient baby food without preservatives to try to relieve my guilt, and it's going OK so far. I try to pretend it's all applesauce. Lively will only eat a couple of tiny bites each time we try to feed him, and it takes him an hour to do that. But it's a start. I'm happy to see him eating at all.
I go back to work tomorrow, and I don't feel ready at all. I guess it had to happen sometime. Thankfully, my department has graciously allowed me to be off since Lively was admitted to the hospital, which is one of the many reasons that I love U of M and will work there forever. Go Blue!
In other thank yous, please know that Pete and I appreciate so much all of you who have sent gifts, food, notes, emails, made calls, and visited. I have not written any thank you notes other than a few emails, and I may not do much more. I'm just too exhausted, and I hope all of you will understand how grateful we are without receiving a formal thank you note. (My mother is probably displeased with me for this.) I have been so touched by the thoughtfulness of so many people. This has been a terrible time for us. Coming home from the hospital means, I hope, that we're starting to come out of it. But, well, I know there's still a long road ahead of us in Lively's recovery. Thus, the highway continues.
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