Revenge of the feeding tube

It hasn't even been a week here and my patience is already fried. It took me about 7 weeks last time to try my patient (truly). This time...5 days.

Molly got a lot worse because her fluid wasn't coming off as fast as they hoped. So her heart function is decreased even more, which is backing up her liver. We thought it was constipation at first, but after demanding a chest xray, we saw it was her liver. Turns out, an enlarged liver hurts. A lot. So Molly was not the happiest of campers. Meaning she was in pretty excrutiating pain at times. She stopped eating well. She screamed a scream I've never heard before prompting the next door neighbor family to dub her the "cat baby". All in all, you can't imagine how painful it is to watch until it's forced on you.

As I saw her getting worse and not better, I turned into what I call "bitch mom" on Monday. I had the nurse page the PICU attending and cardiology attending because I didn't feel like we knew what their plan was and why it wasn't happening fast enough. It was already three days of "gee her chest xray is still wet" and I was sick of it. So finally yesterday they threw the big de-fluiding guns at her and shock and surprise, she's lost a ton of fluid! They showed me the chest xrays before and pointed to her chest saying it was wet. I didn't understand what I was looking at until I saw today's xray. Wow, huge difference. Her liver is also smaller than half of the size it blew up to. So she's definitely feeling much better. Yesterday was her first smile since surgery courtesy of Minerva. And this morning was a 5 minute smile fest with Minerva. This cat is gold.

I dd make the mistake yesterday of allowing her to skip her nap because she was finally awake and playful and back to general Mollyness. But I forgot that general Mollyness also includes that she turns into a demon seed when she misses her naps. My bad. So she had a major MMD (Molly Meltdown). I also had a meltdown because it was hard for me to separate her misreableness from being over-tired from her misreableness from being here and still healing. So it sucks. Plus Brian had to go home yesterday for a 5-day class. Which sucks for both of us.

Fortunately the B-team arrived in the form of Hannah and mom Coffey. Today we basically are sitting around and whispering to each other because I'm Molly to sleep more so no more MMDs. It's lovely.

Other happiness is that Ann F got to visit and give me a much needed chai break. Shannon came with amazing, amazing food that she made fresh from the farm veggies. It's funny how you can easily not eat vegetables while in the hospital, so it was incredible and yummy mummy. Plus, you know, Shannon was a lovely visitor and poop-encourager (when we thought Molly was constipated). And Laura (Sam's mamma) came yesterday and brought much needed perspective when I was melting down. NICU mom's have a way of calming down other NICU (now PICU) moms. Dr Mike also made a few visits. As did Norma, everyone's favorite baby teacher.

I also finally ran into the first nurse that I hated. Fortunately we only had her for a day. She acted like Molly had 4 days to live or something. She would say things like, "Well a baby as sick as Molly..." and "Well maybe what's going on is just her heart failing more and not recovery from surgery." Today I ran into her and tried to be nice saying that I agreed to their putting a feeding tube in (more on that later). She responded with, "Yeah a lot of babies who are waiting for heart transplant have them." I wanted to punch her.

So feeding tube is back in. We fought it really hard, visibly shocking the nutritionist. It took us so long to get the docs to pull it out in the NICU that I just had flashbacks of being here for 2 more weeks because they don't trust she'll eat once they pull it out (shocker, she did). In the end she convinced me that they work completely differently from the NICU and that she only needs it short term while she is too much in pain and weak to eat her full feeds. The argument that got me was that it's stupid to ask a baby to heal if they are malnourished. Me and Brian looked at each other like, "fuck. they're right." After months of not having it, she definitely notices it more this time. She has these sad little gags. But hopefully it will get her back up to speed and out of here sooner.

So she's on an upward trend. The days (and nights) are draining for all of us. In many ways it feels like we're right back at the beginning with her on Milrinone iv and feeding tube. Which is depressing because it took so much time and energy to get her off them. But here we are.