Lyla's IV in her foot was taken out today. It was in for about 4 days and started to go bad so Cheryl took it out. Dr. V said that Lyla does not need a new one put in this time. Before the Drs always wanted her to have one for "emergencies" so I'm hoping this means things are looking good...
We had a good visit today. Lyla is so much more alert and awake and her nystagmus is not nearly as bad! It's still difficult to hold her comfortably because of her lead wires, IV (when she had one), oxygen, and nears. It is just unnatural. But it is also really difficult because she is so floppy! Babies with Down syndrome are low muscle tone and therefore have hardly any control of their neck. And because of Lyla's hospital stays and surgery, she hasn't had much tummy time to help strengthen. But we have had a couple good snuggle sessions and that has been real nice.
Today she was batting at her face a lot and snagging her nasal cannulas and even hooked her ND tube. Even with gloves on she can manage to move things on her face. She must have some good control of her hands at least. She has been known to pull her ND tube out. Not looking forward to being sent home with that, so hopefully she can transition back to Gtube. So she will probably have an esophogram done Friday?
(from day before, she grabbed her oxygen line and I swear she was trying to pull it to her mouth!)
Also, I heard her cry! It was the sweetest sound ever! It is very strange when your baby doesn't cry or make eye contact, or smile at you. It's very sad. It's hard to explain the feeling, but it's almost like she's not a baby or maybe it's just that you don't get those same feelings as you would with a typical baby. So when Lyla cried, I could almost feel those feelings. It made her more real. (I'm sure that sounds so strange, but I don't know how to describe it really). I'm just glad that it doesn't seem that her vocal cord is permanently damaged!
Gave her a nice bath
O2 at 2%, but Cheryl turned down to .75% as I was leaving, to see how she would do
Feeds still at 19ml, hopefully tomorrow bump up again.
Medicines:
Lasix 1x (but will probably switch back to 2x)
Ativan
Methadone
Lovenox shot 2x, ending on Friday!!
Done with antibiotics for pneumonia (mycoplasma)
Multivitamin
Respiratory: albuterol as needed, and another inhaler with steroids ( don't remember name)
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