My mom, Carrie, Pete, and Gracie have all been sick. First the stomach bug, now strep. Poor Gracie has been having to deal with having mama away for so long, and now to be sick too. My mom says she hasn’t fussed any at all, just become very quiet and withdrawn. She spent this morning asking to please go bye bye to mama, but they can’t come here sick, so I super-dosed on sodium ascorbate and went home for a couple hours to nurse her and play with her. She has been going off to quiet corners and laying her head down quietly, and when she looks up again, her face is covered with tears. It breaks my heart into a million pieces that I can’t be there with her, and that so often I can’t be with Asa either. Both of my babies are sick and need me so badly, and I can’t mother either of them. I desperately wish Asa were well enough to come home, so I could be with both of them at once, and not have to deal with schedules and rounds and shift changes and having to leave him to pump or eat or drink, and I could be with Gracie also. I want so badly to bring back her happiness. Her sparkle is gone, her whole countenance and posture is one of mute grief, and I am helpless to do anything for her. I have never been so sad in my life.
Asa:
Well, 2 days ago, the doctor said three extremely devastating words regarding Asa’s possible prognosis. Permanent vegetative state. He was unable to suck, swallow, open his eyes, respond to any external stimulus other a muscle twitch to a blood draw. He was being fed by tube, and we were looking at having to go to Children’s and having a G-tube put in.
However, today his phenobarbitol has been reduced significantly, with fewer resultant seizure/spasms than expected. He was able to actually suck 70cc of expressed milk on his own (without having it coaxed in by working his chin and cheeks manually like we had been doing to try to help him suck). Previously even with all of our efforts he was only able to take 5-10cc orally. He is off the antibiotics (for being homebirthed and having meconium and trauma), off the IV, off the oxygen, the feeding tube has been removed, so he’s now only on monitors and phenobarb. He had an MRI this morning, which came back negative (for brain bleeding or swelling). We should be hearing tomorrow about the EEG results, and may have to do another of those. We’re trying to find out what kind of brain damage we’re looking at, and if it’s concentrated in certain particular areas of the brain to be causing the seizures. Ideally, we’d be able to find out if he’ll be able to outgrow the infant stage, and if we should expect behavioral or physical issues, but I’m not sure the technology exists to do the kind of scanning that would take. But depending on the results of what we have, we may be trying to reduce the phenobarb more still, possibly to a non-therapeutic level, and see what that does. John is greatly discouraged to think that he may have to be partially sedated his whole life to suppress seizures-I am too, but I think that particular aspect is affecting him far more than I. And we’re waiting to hear back from the physical therapy folks on what we’ll be needing to do for his holding himself so tense and for the “lucky fin”, his paralyzed right arm. The neonatologist is planning to send us to either Fayetteville or Little Rock to have his eyes checked, he’s concerned about how they may be affected by having been on such high concentrations of oxygen for so long.
It is improvement, but he has seemed to improve before, right before he went into that state of nothingness…
From my perspective- he was awake and alert for the longest time today that I have seen, John either. He really did suck so well, I have hope that if he improves like this steadily, we may be able to breastfeed after all. Which is a lovely thought, I would much prefer that to pumping forever and a day. He moved his leg away when I tickled his foot, so he is responding with gross motor movements. And he’s had his eyes open, I swear he will look right at me when I’m talking to him. He had hiccoughs, sneezes, and a couple squeaks. He has started to make some faces, wrinkling his nose, scrunching one side of his face, then the other, opening his mouth up wide and working his lips and tongue in all sorts of funny ways. But best of all, he smiles- a big, whole-face smile that just melts my heart and thrills me to death both at once. I have hope.
And that is all we have for now. |
- so we can send her and baby some loving energy 
.
s
