Yesterday started out a little rough for our little man. He was running a low grade fever and it seemed to have him completely out of sorts. He wasn't extremely agitated, but much more so than normal. Our nurses were really commenting on it because they say his temperament is normally so much more docile and accepting. Even yesterday, he really didn't cry much at all. He just restlessly squirms in his bed and looks at you with that very serious face, but I know he is uncomfortable because his heart rate and respiratory rate were running pretty high. His fever broke around 3pm and didn't return. He rested most of the rest of the day- I'm sure he was zonked after being so worked up all morning.
They have continued to increase his "dump"feeds steadily with no problems. He is now receiving 23mL's via the feeding tube every three hours. Today Ned will start working with the occupational therapist on learning to suck, swollow, and breathe and they'll work with his range of motion. Because he has spent most of his time in a bed and hasn't been moved around very much, he is as stiff as a board. They want to work on stretching his muscles a bit. I think the stiffness in his arms is one of the reasons they sent off yet another genetic test. I don't believe that he has a genetic disorder, but I think they're just wanting to cover all the bases. I'll be glad when we don't have any more of those looming over us anymore though.
I spoke with Dr. Adamson (our surgeon) last night. He said that he felt sure that if we were going to run into any major issues with this last surgery (like finding another unknown blockage), we would have seen some evidence of it already. So, I'm so very happy and thankful to be able to report that it seems that we may have finally gotten all Ned's anatomy back to some semblance of normal- at least it is functional!!!! I will be bringing Jack up to meet with Dr. Adamson on Monday. For those of you who don't know, they found a hernia in Jack's groin about a week before I came to Chapel Hill to deliver Ned. I have just pushed his surgery off as long as possible and have decided just to bring him up here where I know the surgeons so well. Plus, it will be easier for me to have both my sick children near me rather than spread across the state.
Other than that...things are going great. I am planning on setting in on a real routine up here in the next couple weeks. I need to get back in a habit of setting myself some timeframes for Ned, work, exercise, and time with the Lord again. Lately, I've just been floating through each day and I'm feeling like a live in a time warp. I began my study time again yesterday and was, of course, amazing at what the Lord showed me when I took the time to listen to Him.
So far so good, all the digestion prayers are really working for Ned. I am going to ask, in a very round-about way today, how long our doctor thinks we'll be here. There is a March of Dimes walk on April 19. I think I'll tell Dr. Woods that I'm planning on walking with them if I'm still here, then I'll ask if she thinks I'll still be here!! I'm so hoping she tells me not to make big plans for the walk, but I think she may very well tell me to put on my sneakers! We'll see.
Thank you all for your continued prayers and support. Much love and many blessings to each of you!
Betsy, Travis, Jack and Ned
(I took some pictures yesterday, but they weren't that great so I didn't post them. I'll try to get some of him in his bouncy seat today and post tonight!)