April 13th - 14th
The surgery team decided to consult with the neonatologists about Dylan's breathing quickly. They were fairly confident that the cause of his fast breathing was just him learning to breathe with the additional pressure on his lungs from putting his liver and intestines back inside. But they wanted to make sure. They also ordered another echo of his heart to make sure it wasn't working overtime to supply his lungs. The echo came back completely clear and neonatology agreed that he just needed to figure out the breathing and get a little bigger and stronger. All commented on how healthy he looked and how great he was doing.
They also decided to do a round of lasix which is a diuretic. He had retained a lot of water post-surgery (from the surgery as well as all of the liquids they had been giving him). They also cut back on the liquids they were giving him as he was getting close to a full feeding of breast milk. The lasix appeared to do the trick. The next few diapers were incredibly full and you could visibly see a reduction to the puffiness in Dylan's legs and around his eyes. This also helped appear to help him breathe more easily.
April 15th - 19th
Dylan got all of his staples removed. He still has quite the scab on his stomach, but it's nice not to have to worry about getting the staples caught on anything when I'm moving him around.
Dylan also got his central line out (which was the last of his IV's). It's the one they put in the big vein close to the heart that they were feeding him through and that stays good for a longer time (other IVs can go bad after a few days). This was good news because it meant that they didn't foresee any reason to give him any more medication (he was on full feedings of breast milk through a tube in his nose). The central line was also the one I was the most scared of pulling out so it's nice that it was removed!
They are also letting me try to feed him if his breathing rate isn't too fast. Dylan definitely gets the general idea of eating, but gets a little frustrated. I think he enjoys being able to sleep while he eats and waking up full (my brother decided that did sound like a pretty sweet deal). Luckily between the nurses and the lactation consultant, Anne, I'm pretty sure we'll get the hang of it!
We decided to have occupational therapy come feed Dylan a bottle to see if there was a certain way/position he liked better for eating. Of course, since he's a show off, he took the bottle down without any problem or hesitation. Anne and I decided that perhaps it was us that he was annoyed at and not feeding. However, it was like something clicked after having the bottle and Dylan figured out being able to breathe while eating and without getting frustrated. So, post that he began to eat better and better and it took much less coaxing to get him to do it. Pretty quickly, he was eating enough from me that they weren't supplementing through his feeding tube at all!
Kristen was Dylan's nurse again today. On Saturday, they turned down his oxygen flow from 3 liters to 2 liters. He actually tolerated it really well which was exciting. However, everybody was still thinking that likely he'd have to go home on some sort of oxygen just to support him as he got a bit bigger and stronger.
Kristen had him dressed in some adorable overalls and even a hoodie. He looked like such a little man instead of a baby! Because he had reacted to turning down the oxygen so well, they decided to take the flow down to 1 liter. His statistics actually improved with that change which was pretty impressive!
Dylan ate from me for all of his feedings and did such a good job we only had to supplement once and only 1/2 of the amount! He's definitely turning into quite the professional eater and I'm starting to get the hang of it too. The worst part is harassing him to wake him up when he's too sleepy.
We also gave him his first real bath. Of course they'd been doing sponge bath type baths, but now that his staples were out we could actually put him in the little tub. It was quite exciting and yes there is a video for those who want to watch it. Dylan didn't mind the water, until we started moving him around to clean him and then he wasn't very happy with the whole thing.
Here are some pictures from the past week. I'll post bath pics and others once I get them loaded. But I wanted to get this blog out, b/c I know Dylan already has a lot of adoring fans!