Joshua is back on ad-lib demand feedings now. This time it will be for 3 days instead of two, since he failed his last trial at 52 hours. That means he could potentially come home on Thursday if all goes well. There is one more issue to clear up, and that is his sodium. The diuretic he is on causes depletion of sodium, so he is getting supplemental sodium. They don't send babies home on sodium because it requires frequent blood draws to monitor the level. They are now trying to wean him off the sodium and the diuretic. If his blood levels aren't normalized by Thursday, they may keep him until Monday. I'm ok with that. I'd rather not have a problem over the weekend before we even get a chance to establish care with his pediatrician. Once Joshua gets discharged, the neonatology doctors that he has now will be completely out of the picture. His new doctor will be at the Air Force Academy, and they don't see people over the weekend.
This is all getting old, to be honest. I had a discouraging day today because Joshua was 0 for 3 on the nursing. He just refused to latch on. This is after two days in a row batting 1000, so I was getting confident. The good news is he took the bottle right away, and he didn't need anything through his NG tube, so they pulled it this evening. Hopefully that little nose of his will never again have to be filled up with that tube.
Last night he lost 20 grams (almost an ounce), but after the 100 g gain two days before, it's not worrisome.
Hang in there Karrn! You are doing an awesome job!
ReplyDeleteAmanda
I agree with Amanda. You ARE doing an awesome job. With all the time you've spent on the road back and forth, pumping around the clock, cuddling and worrying about Joshua, let alone all that needs to be done with Jeremiah and jobs at home, you must be totally exhausted. Think of it as Mile 20 of the Ironman and just push through it. You're a great and inspiring wife and mother! I love you!
ReplyDeleteHeidi
Hoping Joshua does well over the weekend and can be home with you on Monday!
ReplyDeleteIt was great to see you for a little bit today. I am sorry that you had such a discouraging time today. I'm sure it feels like you take one step forward and eight backwards very often. Hang in there! I know that "being home" is not going to be quite what you expected either, but we are here to help you guys along the way.
ReplyDeleteLet me know if I can do something for you. You are in my prayers!
Laura B.