That basically sums things up with Amelia. She is still on CPAP 5 with no weaning in sight. She must get down in the 40s with her fiO2 and she has only done that maybe an hour or two over the last weeks. Todd and I have noticed a trend where it seems she gets weaned during the day and the evening when he or I are there, but by the morning her fiO2 goes up anywhere from 15 to 20%. I find this totally unacceptable. What I am observing is that we are pushing them to wean while we are there, but when no one is watching, they just keep pushing the oxygen up when she dips below the acceptable range and then never capitalize on opportunities to bring it back down.
Also another thing that has been going on lately is that she is getting a different nurse every day. She is in level III step down from where she was before and I think the scheduling priority to have the same nurse day after day is given to babies who are considered more critical than Amelia. And the other thing that is annoying is that they have an overflow of pediatric ICU nurses who work with older kids with different problems in another part of the hospital. They were hired on for a new section of the PICU, but it hasn't opened yet and they have all these people with nothing to do, so they have sent them down to the step down unit of NICU III which is where Amelia is. She has gotten a couple of these nurses, who are nice and I am sure good nurses, but are not used to the nuances of caring for babies like Amelia.
I have spoken to the NNP about this. She said she has also noticed this pattern and said I should talk to the nurse manager. So that is what I did. So now we will not be getting any more PICU nurses, we have requested another night time primary, and now Amelia's weaning orders are to turn her down any time she sats at 92%. And I am going to be on them like white on rice.
I know it is hard to believe, but I want to be nice to the nurses and I don't want to give them the impression that I think I know how to do their job better than they do. We have been there over 150 days now and I don't want to have an adversarial relationship with them, but...I also need to be an advocate for Amelia and I really don't think the night time nursing is doing her any favors. They may be fine with the status quo, but I am not. This blog is called Amelia's Progress after all....
We still have not seen PT yet. I tried pulling on Amelia's arms to pull her up into a sitting position several times this week just to see if I could work with her on strengthing her neck muscles and she totally pulled her head up along with her shoulders, just like the PT lady said she couldn't do. Several nurses witnessed this too. I try sitting her up on her boppy and she is pretty good about keeping her neck up for a few seconds at a time before her head flops to the side. She can't sit up long, she tends to desat. Mostly I have to hold her cradled or against my chest. I like to lay her on her back with the boppy in my lap. That way I have access to her hands and feet to play with and we can see each others' face.
Amelia's length is 51.5 centimeters and her weight is 8 lbs. 8 oz. (she was 8 lbs. 9 oz. yesterday). They are thinking about taking her off her 30 cal formula because they don't want her to get too fat for her length, because this makes breathing harder.
4 comments:
You get em Christina! Thats what they call motherly instinct. In some cases, wWe know better than people who have gone to school for years! Dont hesitate to do what you think is necessary to make Amelia the best she can be:)
and tomorrow will be 5 months..I am impressed that you have maintained such strength and sanity! We are still praying daily for Amelia! Love, Bridget
I am a physical therapist. And while I have not worked in a NICU, I can tell you that the tummy time that Amelia seems to love is really good for her extensor muscles (which will eventually hold her head up). And I have never heard of new borns pulling their heads/shoulders up while you bring her to sitting. When I was in school, we were taught to look at premie babies as if their actual age was the age they would have been if they were born on their due date. That age should be her 'developmental' age...and should more acurately reflect what she should be able to do based on age norms. That makes Amelia significantly younger than her actual age by birth, and therefore significantly less developed ALTHOUGH that is not a bad thing!! Would a normal 8 lb baby be able to pull up their head and shoulders when being brought to sit....NO! Just because a 'normal' 5 month old can, doesn't mean Amelia can or even should! I hope that makes sence...while you're being an advocate for her nursing, be an advocate for her physical therapy and demand to see that PT!!!
Kathy Wimberly
Yeah they know that they go by her developmental age. She explained to me that it was a sort of reflex that all babies should be able to ATTEMPT to keep their head level with their shoulders and Amelia made no attempt at all...except now she does. It is all so loosey goosey and frustrating!
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