My 20 month old DS was premature and stayed in the NICU as mainly a feeder/grower for 17 days. He came home on a monitor for apnea.
Now, my 6 day old DD is in the NICU because they suspected that she might have an infection. The cultures came back with no growth but they are still keeping her there for 7 days of treatment.
Here is where my problem comes in. She has the suck, swallow, breath reflex the thing is they, like most NICU's, do the cluster care. Therefore she is forced to eat according to their schedule every 3 hours, 60-65 mils in 15 minutes or less. She, however, is more of an on demand feeder. She wants 1-1.5 oz every 1.5-2 hours. They will not let her do this. So she is in an open crib, off all oxygen, no IV (except her antibiotics that she will have the last of tomorrow), no heat, etc. She does have a gavage.
We are not waiting for the S,S,B reflex to click, we are just waiting for our DD to take feedings on THEIR schedule.
Do we ask for discharge AMA? Do we need a lawyer? Etc?
Re: What are my legal options?
We tried to talk to the doctor. He was down right hostile towards my husband. The doctor informed him that that was the way they do things and there is nothing we can do about it. The doctor wouldn't even discuss it with him.
We have tired to get a hold of an advocate but so far they have not called us back (it is the weekend so we might have to wait until Monday).
By Monday she will just be sitting in her open crib sans antibiotics waiting for her to get on their schedule. They haven't even talked about getting her moved to special care she is just stuck there in the NICU.
Actually, it's normal for an infant to feed on demand. Some eat more often, some eat less often. I am shocked and appauled that it's considered child abuse to do what you feel is best for your child medically.
OP good luck to you! I had this same issue when DD was in the NICU as a 34 week preemie. I hate "cluster care". It goes against all my instincts. We were also breastfeeding so I'd be there and she'd be rooting and the nurses would get mad if I fed her when she was rooting. They wanted to weigh her before and after but none of them were "available" to do so. Grrr.... We didn't have a choice to transfer her and our insurance wouldn't pay if we took her out AMA. We didn't have 90k+ to fork out so I kept working on the nurses and doctors until the buttheads finally listened to me. Can you request a different doctor or a transfer?
She is in the hospital for a 7day course of antibiotics right? It means her labs came back elevated most likely. Just because there is no growth on the blood cultures doesn's mean she doesn't have an infection somewhere. They wouldn't keep her and give her a 7 day course if it wasn't necessary. Preemies need a feeding schedule with cluster care but most full term babies do not. With that being said, if they are keeping her on a schedule they most likely have a reason. Im sorry your NICU experience isn't going well. Because she might have an infection they are most likely trying to not to stimulate her very much. it can cause other problems like burning more calories then she eats and then that would keep her in the NICU longer. I would do what they want you to do within reason so your NICU stay wont be prolonged.
They came back ever so slightly elevated. The only reason the pedi sent her to NICU was because of my GBS+. Even the pedi said that the levels weren't elevated enough to cause concern. It was only my GBS+ that caused concern.
Then the neo down in NICU said yesterday that finishing the treatment was just going through the motions. That she is fine as far as infection goes.
Basically they admitted her into NICU and she didn't need to be here.
They were keeping her on a schedule because it was convenient for the nurses.
We finally got to talk to the third doctor in the NICU and he said that we can go on demand feeding every 2-4 hours.
They said I can hold her whenever and however long I want to so I don't think they want a lack of stimulation...I don't know what they want.
I hope to get her out on Tuesday under the care of this new doctor.
Thanks for the replies.
Actually, it depends on your state if your baby can leave AMA. An adult can, no problems. But I was just talking about this with the case manager at my hospital (I'm a mom/baby nurse) and we do not allow parents to take their babies AMA and will get protective services and law enforcement involved if they try. that surprised me too. I would have guessed a parent could since it was their baby.
To the OP, keep raising heck until you get someone who will listen. It seems weird to me that they would force scheduled feedings on a term baby. the NICU at my hospital moved my son to ad lib feedings towards the end of our NICU stay and he was not term.
Is your LO gaining weight okay? Maybe there is a concern there that they have not addressed with you properly. Is there social issues they are concerned about? it jsut seems so odd to me to hold a baby that is ready to go home.
If the doctor was an ass to you or your husband, you do not have to tolerate that. You can "fire" your doctor and request another one. Ask to speak to the NICU manager and make sure they get the patient advocate for you. Even on a weekend, I assure you someone is oncall and can at least address your concerns over the phone. Keep taking your cocnerns as high as you need to and I promise someone will listen to you. My hospital bends over backwards (to an annoying level, from a staff memeber) to please even the most difficult of patients (not saying you're being difficult) so keep moving up the chain until you're heard.
Don't worry, I see no snark with your response. My membranes did not rupture until I had 1.5 doses of the antibiotics already in me. They ruptured in the middle of the 2nd dose.
When did your baby show signs of the late-onset GBS, sepsis, and meningitis? I am glad she is getting the antibiotics, no doubt there. I just don't want her kept for phantom feeding issues. I had a preemie, I know what feeding issues are and I am almost 100% sure that she doesn't have them.
I talked to the 3rd doctor today and he was very nice. The other two didn't want to do ad lib feedings but this one had her NG tube pulled today and we are doing ad lib feedings for the next 24 hours and just seeing if she will gain weight.
She has been gaining great with the NG tube and taking almost full feedings (but not quite all of them) She went from 7lb 5oz to 7lb 8.7 oz in a day.
Hopefully under this new doctor we will be out of there by Tuesday.
ETA: I know that I must sound crazy. I don't want to pull her out AMA (and apparently I can't) I am just a hormonal mom who wants her baby.
I hear you. Toward the end of our NICU stay I'd had enough of having little to no control over my girls' care. It seems like until you leave the hospital with them in your care, they aren't really yours!
Sounds like you have things on the right track though... Good Luck!