... And One Step Back

My friend Bonnie (a veteran NICU mommy) warned me that things will go up and down in NICU life so don't feel blind-sided when it does. I have to count ourselves lucky though that Liam's step back today was only disheartening and not life-threatening.

After several great days of very little gastric drainage (and even some nearly clear drainage last night- an awesome sign), this morning I was greeted with the news that a lot of drainage came up overnight and was back to very green (not so awesome sign). Twice. Siiigghhh. We were so close to convincing surgery to let us try him with some CCs of milk I've been pumping and then it felt like we're back to square one again. His pediatrician even "took one for the team" and sacrificed her pinky into his bootie to see if there was anything up there that could come out. There wasn't (I think Liam said, "Dur, I could have told you THAT").

The nurse explained that the extra drainage might have just been some fluid treatment (a diuretic) they had been giving him since his legs were swelling (nothing to be alarmed about, just part of the body recovering). She sent off some labs just to be sure he wasn't having a sodium-potassium imbalance (all was fine). His last treatment of the diuretic was tonight at 11p so hopefully we see some improvement tomorrow once that passes through his system.

Liam had a great sleep in the morning and then was ready for some more Kangaroo Care by late morning. Poor guy knew lunch was around him somewhere, so he turned his head in and was trying to figure out where it was- testing spots high up on my chest close to my neck. It was so cute because it felt like he was giving me a ton of little kisses, but I know he was really trying to find something to latch on to. I'll just pretend they're kisses. :) The nurse had also said he was giving her kissy-faces early in the morning- I said he's trying to kiss up to anyone that can feed him. Smart guy! I showed him more pictures of Riley on my iPhone until he nuzzled in and fell asleep for the rest of visitation. It was hard to leave because I was going to Daphne for the afternoon and wasn't going to see him until late tonight.

The quick visit home was fun; always nice to get away from hospital life and do something special with Riley. On the agenda today was his cub scout meeting. We were in charge this week and we made pine cone bird feeders (with peanut butter and bird seed). The boys seemed to enjoy it and Riley liked acting like he was a teacher or something. No idea where he gets his outgoing-ness. Tonight bedtime went a lot more smoothly- mainly because we skipped out before he got put to bed. That seemed to work tremendously well. Steve's dad texted us about 30 mins after we left saying Riley was already asleep and all was good! I'm thrilled because all I had to do was give him a kiss goodbye and a "see ya tomorrow" and he was fine! Steve drove me back to Pensacola so he could see Liam before bedtime. The things he's doing for his family...

I think I've sorted out it's hard for me to go home because I feel like I'm leaving Liam behind, like our family isn't all together yet so I shouldn't be home. I don't like going into his room because I don't know yet when he'll be home to enjoy it. It's just not fun being in there right now setting things up- not until we're closer to his discharge date. I do realize it's better for me to be at RMH because I'm around other parents who are going through the same kinds of things we are. It's hard to throw yourself a pity party when there's other people who have it so much worse and you see it every day. It's kind of a quiet support. I've chatted with some of the parents, but not had any "deep and meaningfuls" (as the Aussies say). Just being around everyone is comforting enough. I told one of the cub scout moms tonight, it would probably be harder going home each night because everyone in Daphne is carrying on their normal lives and we can't for the moment until Liam is well enough to come home. I'm so thankful I'm just down the road from my baby instead of in the next state over. And I know that Ri is doing great at home surrounded by his family- so that makes me feel better about the whole situation.

Steve's visit tonight was great. Liam slept for the first part- AND HE'S WEARING REAL CLOTHES!!! He had the cutest little onsie on- he looked like a real baby!! They have a ton of donated clothes in the NICU so as stuff gets soiled they just toss it into the NICU wash (that way we don't lose any of our clothes we would bring up). It was such a great surprise to see him like that!! He's vitals have been fine, but his weight's come down a bit. He's at 6lbs 5oz, for a loss of 3 oz since birth. Not bad, all babies lose weight after they're born. His weight has been all over the place (was nearly 7 lbs the other day) but that's from all the fluids they run through him. His actual weight gain/loss can't really be calculated until he's starting feeds. (Pics of Liam in his real clothes to come)

Speaking of feeds, it sounds like the consensus from the surgeon's NP is that once his fluid runs clear or there isn't any more, we can try feeds. YIPPEE!!!! No more waiting on poop!! The night nurse flushed his gastric tube while we were there (basically pumps saline into the tube down to his stomach to see what comes back up). Very little came out and it was a lighter green then earlier in the day so his stomach is clearing up again. I don't want to get my hopes up too much, but glad to see things are moving in a better direction now.

Steve's night ended with a great snuggle from Liam. Liam was very alert and interacting a lot with his Daddy which you could tell Steve loved. At one point Steve pretended he was going to eat the little feet that were sticking out of the blanket and Liam got a big surprised look on his face when Steve nibbled his toes. I think we even saw some attempts of a smiles in there too. When Steve was nose-to-nose with him, Liam was trying to hold Steve's gaze but kept going cross-eyed so he'd shake his head to readjust. Just funny to watch the two of them play together. Steve got on the road late, but you could tell the hour he had with his son was definitely worth the drive.


PS- Please excuse the previous couple days of posts if some spots didn't make sense. I had been too tired to go back and reread what I wrote- all I managed to get done was clicking the spell check button. I got to proofread tonight so it should read ok. I'll just fix the last few days another time. You get the idea though!