Post-OP - Day two, three and four

So after the last post a lot has happened. She has been recovering so quickly, almost everything has changed. Friday around noon (right after the last post) they decided it was time to close her chest. It was very quick. They sterilized her CICU room, sewed her up, removed one of the chest tubes and that was that! I'm sure it's much more involved than that, but that is certainly how it seems from a parent's standpoint. It truly is amazing how quickly babies heal and even more amazing how pain-tolerant they are compared to adults. It is so hard to see your baby in pain, but so great each day you see progress towards going home.


On Post OP day two: Lily was extubated, like a champ I must say. She came off of most of her drips and by the en
d of the day she was only getting some pain meds and mild sedatives, but much less than I expected. She was also receiving some nutritive drips and maintenance fluids. She was still having some pain (to be expected, I think) but they were controlling it very well while trying to limit her narcotics. They removed her Somenetics sensor, foley catheter, one more chest tube and her HG tube. Throughout the day she was weaned from Hi-flo nasal cannula to a regular cannula without much issue, but didn't do as well trying to come off of oxygen completely. They started her feeds through her G-tube first on a pump then switched to her bolus (gravity fed) feeds. She was able to go from nothing to 90ml every 4 hours with no issues. She did have a low grade fever, in the evening. She has had a history of kidney and urinary tract infection, so blood and urine cultures were sent in and she was put on two antibiotics.

On Post OP day three: They decided she was ready to move to the cardiac floor. She had a routine chest X-ray, one last feeding, and we were off to "the floor." We have a larger room and she is allowed more visitors at one time. We have our own bathroom as well. From past experience I know that we will be doing most of her care (feeds, changing, etc.), where in the CICU we weren't able to do those things. This should help make it more "normal" for Lily. They check vitals less often, so it should make for quieter nights for whichever parent stays with her. She has had some problems with her feeds. Thankfully this has been her only real issue. The nurses have all been great both here and in the CICU. Couldn't ask for better care for our Lily-bug.

On Post OP day four: We are all settled in her new room. She is having more and more problems with feeds. She just can't keep seem to keep it down. We have decided to attribute her problems to nausea from the heavy doses of antibiotics. We will weigh her early in the morning to be sure she isn't losing weight. Hopefully when the side effects of the antibiotics wear off, she will be able to keep down her full feeds. It makes it harder to control her pain when you aren't sure how much of the pain meds she loses each time she eats... She has been very fussy tonight and finally kept a partial feed and one entire does of Tylenol. She is finally asleep and comfortable. I hope we can keep it that way.

The doctors here have given us an option of a referral to the Children's Institute, here in Pittsburgh. They have an intensive inpatient feeding rehabilitation program. It is very aggressive. Which is exactly what we are looking for. This will help Lily with her feeding skills and hopefully eliminating the G-tube as quickly as possible. It would be a two-week program. We don't want to be away any longer than needed, but this is a chance of a lifetime and I just feel like we would be crazy to turn down some of the best feeding specialists in the country. It hasn't been decided yet, but if it is a possibility, I feel like we HAVE to do it.

Will update again soon. Please keep up the prayers.
The Borders Family