Today I went into the office for half the day and then worked from the hospital in the afternoon. I had a sobering conversation with the doctor this afternoon about E’s feeding progress. I guess maybe I was naive or in denial but I kept thinking any day the light bulb will go on and he’ll figure out how to nurse. But the doctor today gave me some preliminary information about the possibility that E could end up having g-tube surgery. Basically they insert a port in his belly directly into his stomach, so instead of feeding him through a tube that goes down his throat, it goes straight to the source. It’s a semi-permanent solution to chronic feeding issues. In some ways it makes life easier becaue there’s no tube for him to pull out, and while dressed he’ll look just like a normal baby. But… surgery. And the dashed hopes that he’ll just grow out of this. Granted, we’re not quite there yet. The doctor said we still have a few weeks before we start seriously talking about surgery. But the fact that he’s not made any progress after that initial latch a couple weeks ago isn’t good news, either.
The physical therapist stopped by after I talked to the doctor, and I could barely get a few words out to her before I broke down. I’m just so heartbroken. But she’s going to work with us and help us hopefully move toward feeding by either bottle or breast. I had held off on introducing a bottle because I’d really like him to breastfeed — but it’s not even like a bottle would help at this point. In fact, the physcial therapist said she wouldn’t be comfortable giving him a bottle because it would probably overwhelm him and he’d shut down. She gave us a few pacifier exercises to do whenever he’s alert, and then maybe we’ll see if he’s ready to try a bottle in a week or so. Meanwhile, I can keep trying to nurse him a couple times per day. Once we introduce a bottle — IF he even takes it — there’s probably no going back to breastfeeding. But as much as I hate the idea of giving up on breastfeeding, today’s conversation with the doctor certainly put things in perspective. I’ll happily bottle feed over having him go through surgery and feeding him through a hole in his belly.
Of course, we got all this news right before D and I had plans to go to a concert tonight (yes, another one. We had a busy summer planned, thinking I would still be pregnant!). We had a good night out tonight together, though I kept spilling my soul to anyone who would listen. I guess I was a real buzz kill tonight.
This morning I arrived at the hospital to find Emmett completely off oxygen! D and I had gone to a concert last night (our first night out together since E was born) and apparently the nurse had taken him off oxygen shortly after I left the hospital yesterday evening. He did great overnight and was doing fantastic when I got there, so I had high hopes this would finally work (even though we had taken him off oxygen once before, only to have to put him back about 12 hours later). Unfortunately, a few hours later (and after I had already posted to Facebook bragging he was off oxygen support), it was clear he was getting tired and desatting more than normal again, so they put him back on. He’s still only at 1/64 of a liter, which is virtually nothing, but apparently that “nothing” makes all the difference to him. My brain knows he’s making big strides and it’s only a matter of time before he’s off oxygen for good. But my heart hurts. I really got my hopes up this time.
He otherwise had a good day. That 1/64 of a liter is really so minimal, yet just what he needs right now, and he had a very boring afternoon with much fewer desats than average. D went back to the hospital after dinner tonight and said he’s been doing well this evening too. He gained an impressive 118 grams tonight, bringing him to 5 lbs 11 oz.
Cannula free, take two.
Last night I went to the Dixie Chicks concert with a couple friends. It was a much-needed girls’ night out, and I was too tired to write by the time I got home. But now it’s 4 am and I’m up for my nightly pumping session so figured I’d get a quick update out while I’m up. Because yesterday was actually a pretty big day… Emmett is off oxygen!
They decided to remove his cannula yesterday morning, despite the fact he’s still having desats from the reflux. Even when they periodically turned up his oxygen through the desats it didn’t seem to make any difference, so they thought they’d go ahead and give him a try. Worse case scenario they put it back. As you can see in the picture below, they left the pads taped to his cheeks in case they needed to put it back. But so far he’s doing great. No increase in desats — maybe possibly even a teeny improvement, if anything. Maybe he’s just more comfortable without something on his face and up his nose, and it’s possible he’s getting less air in his belly now. They warned us that if he were going to need it back, they would either know right away due to an increase in events, or they would know after a day or so on it because he would start showing signs of fatigue from doing too much on his own. Fingers crossed he continued to do well through the night when I call in the morning for an update!