Majour Rant...(With an update at bottom)

I am so pissed off right now it isnt even funny. The other day I was talking to the nurse about some of the changes they were doing with Aybra.. They keep doing things and then undoing them. She obviously isnt ready for some of the changes and instead of waiting until she is ready they are trying them out anyway. I couldnt understand and still cant understand why they keep doing this stuff.. For instance with her feeds. Her respiration is supposed to be below 60 for her to nipple feed. Well it rarely is below 60. She went from taking maybe one or two bottles a day to them pulling her OG tube out and making her take ALL of her feeds by bottle. She was not ready at all. She dropped weight and had some problems from it. So they put the tube back in. It never should have been taken out in the first place... Around that same time she was having quite a few desats. They decided to take her off of her cannula... Well if she was having the desats ON the cannula then what makes them think she will do better OFF? She didnt even last 24 hours and was put back on it. Again, she was not ready. If the doctors would pay attention to what was in her chart they would see that she was not ready. I questioned the nurses on it and they kept giving me stupid answers so I asked them to have the doctor call me. Well he called today... I talked to him about this and still didnt really get a good answer but I had some other issues I needed to discuss with him too. Now, the one I talked to today was not the one that delivered Aybra but he has been working with with her and the other doctors since the beginning..

Anyway, my majour bone to pick today was the eye ointment. On my birth plan I specifically stated DO NOT GIVE MY CHILD THE EYE OINTMENT! While I was on bedrest I signed papers saying DO NOT GIVE MY CHILD THE EYE OINTMENT! They had papers in her chart and they discussed it with everybody. The doctor I talked to today was actually the one that came into the room to discuss my birth plan and to discuss some of the things they could not do (like lotus birth)... The eye ointment he gave me trouble about and kept going over and over all of these "risks" of not getting it. I told him I understood everything but that I still denied it.... So fast forward a few months and what do I see in her chart? "Mother desired not to use eye ointment but it was given to baby anyway".... PISSED is not even close to what I was when I saw this. The night I saw it spoke with the nurse and she was supposed to get me an answer as to whether or not she did in fact receive it... Well I never got that answer and today was the first day Ive gotten to talk to any doctor since then.. So I asked him. His respone "Why did you not want it?" It does not matter WHY I did not want it. The point is that it says in her chart that she got it after I specifically said DO NOT GIVE IT! So his next question "Well what are you doing to do if she did get it?" It is none of his business what I am going to do. He could not tell me for sure whether she got it or not because he didnt see anywhere in her chart where it said that she did. So today Im going to go mark the spots (yes more than one) where it states that she got it and Ill be sure to have the nurses show him. We got into words about this. He told me that there is nothing they or I can do about it and that I should get over it. He was very rude to me about it and I got very rude right back.

There was also a discussion about the breastmilk issue. They keep starting breastmilk in her feeds and then stopping them for bullcrap reasons. I asked him today what the plan was for getting her onto ALL breastmilk.. His question.. "Well do you have enough breastmilk?" How about asking the milkbank that or how about not even wondering if she has enough and just assume that she does and write the damn orders for it! YES THERE IS ENOUGH. The hospital has over 200 ounces. They did start adding breastmilk back on the 4th but didnt think it was important enough to tell me until about the 10th even though I ask them every single day about ANY changes and ANY new orders. I let the doctor know today that I was not pleased with the reports that I am being given where the nurses just "forget" to tell me things.. Like yesterday. The hospital stopped using Neocate because it was "too expensive". Instead they started her on Elecare which is similar but certainly NOT neocate. The nurse didnt even mention it to me yesterday. I found out last night from a different nurse. This also made me mad because I specifically told them if you MUST use any formula then NEOCATE ONLY!!!! I dont care how expensive it is. That is not for them to judge.

He did not see what the big deal was about the eye ointment. I told him as a parent in the NICU you already dont have much control. But there are some things that I just refuse to do and some things that I must control... like the eye ointment. He pretty much said that he thought I did not understand the risks of her not getting it so they gave it to her anyway.. It doesnt matter if I dont understand the risks.. I REFUSED it and they gave it to her. In a world where I can chose to pull the plug on my childs life and take them off of a ventilator I can not chose to refuse some eye ointment?? I told him that the "big deal" was that I was never told about this and that if I couldnt trust them to follow my wishes with that then what makes me think that they arent doing other things I told them not to.

Anyway the doctor told me that if I was that untrusting of them that I should think about transferring her. I told him I didnt even want her in that hospital in the first place that I wanted her at the Childrens Hospital. So he just lit my fire to get her moved. He tried to make it seem like they were very accomodating to my wishes for her.. Umm right. The only thing they are doing that is on my birth plan is not using any Johnson and Johnson products on her. Everything else they have went against. They cant do cloth diapers because its a health violation... As in.. they cant put a poopy cloth diaper in a bucket WITH A LID but they can put a poopy disposable diaper into a trash can WITHOUT a lid.. Yeah makes a bunch of sense. Their other excuse was that they had to weigh the diapers... I planned on bringing them a few dozen preemie prefolds and prefolds all weigh the same before they are used just like sposie diapers... So that excuse doesnt make sense either. Instead of them just saying we dont want to do it they are giving me a bunch of reasons why they cant do it and they dont add up.


***Update***

You will never guess what happened right after I posted this... I called to check on Aybra and guess what they did? They stopped the Elecare and started her on Alimentum.. HELLO!!! I specifically said NO ALIMENTUM! So Aybras nurse had me talk to another nurse who seemed a bit peeved that I was not happy about this... The funny thing is the doctor made this order BEFORE he talked to me and he didnt even tell me about it... So the nurse was trying to play a guilt trip on me and asking me "Even if she tolerates this you do not want to use it?" No! I dont want to use it. There are other things that she will tolerate. That is not the be all end all. Is it really that hard to make an order for breastmilk? She asked me what formula I wanted then and I told her Neocate. She said they cant do it. I told her I know. So she asked again. I told her I dont want any formula. If they must use one then use neocate and again they cant use it. I told her I know and I told her that if I brought the Neocate up there myself that they would STILL have issues with it and wouldnt be able to use it.. So she says well maybe we can make an exception and get the Neocate for Aybra.... Ok making a little progress here... but she is still on the damn Alimentum!! She keeps asking me what formula and I tell her none. Especially Alimentum or ANY soy based formula. She says ok and calls the doctor.. Too bad I missed that conversation. Im sure he wasnt thrilled and Im sure she probably said some nasty things about me as well as him. Guess what? I dont care. She called me back and lo and behold the doctor wrote an order for ALL breastmilk.. Was it THAT FREAKING HARD TO DO???? Do they seriously think that switching formulas to a million different ones is going to work when they KNOW that breastmilk works and they could just do that? I mean Im not a stupid person but I just dont get why instead of using all breastmilk they want to use part breastmilk and the rest formula. They want to find some formula that magically works instead of just using all breastmilk... They still have to fortify it with formula but at least they arent using some crappy chemicals as a feeding substitute. Oh and Im guessing that she wont "tolerate it" and they will find some excuse to switch again..