Friday, June 13, 2008

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.


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..


Wendy said...

Oh wow Khourt - what a total PITA. I can't believe the doctors and nurses are so uncaring about your wishes. I'd be very upset about not wanting to use breastmilk - especially with all the evidence that supports it's benefits, especially in premature infants. These kinds of stories make me so grateful that my girls were in a hospital that actually cared. They're afraid of a lawsuit for some reason. Don't let them roll over you and document everything! You're doing an excellent job - hopefully she'll be home safe and sound in your arms soon and this will all be a bad memory.

Kim said...

Oh my gosh, I'm actually angry for you!!! All of those things that they are doing are NOT right. It seems like they think that Aybra is their child and they are the ones that have the right to make decisions for her, you're just a nuisance that they need to get rid of- definetly not the right attitude to have. I think I would transfer her in a heartbeat if I could. Keep calling them on the things they're doing and not telling you about- you have that right. I hope you don't have to deal with them for much longer!

Margaret said...

Hun. I am so sorry that the NICU is giving you such a hard time. When I was in with my little man they didnt seem to want to help me with breastfeeding. Other moms they helped me, no. I do know that here they can only give formula if the parent agrees in writing. Also, if you want a different brand of formula you can supply your own (or have the neonatologist write a script for the kind you want). I really hope that you can get Aybra moved to somewhere that they respect a parent's choices.

Hugs, you do not need all this extra stress.

Bronwyn said...

Wow. So the doctor thinks you don't understand the risks of a baby born by c-section not getting eye ointment? How arrogant! And what is so hard about understanding that THE number one best thing for a baby is breastmilk? What decade are we living in? It's not a comfort to say you aren't the only one going through issues like this. It's pathetic really, that there are muliple people going through these situations. I hesitate to think of the preemies whose moms aren't as tenacious.

Anonymous said...

Khort I think you could maybe speak with a lawyer about the eye ointment! I would if I were you.. there was a misunderstanding on my second daughters chart when I transfered her, which I thought said they had given her a flu shot.. I was so pissed cause I said absolutly not.. turned out to be a typo but I was ready to call the lawyer too, you are the parent they have no right to give her any medical procedure or treatment with out your permission!

How frustrating for you!

Anonymous said...

Sorry that was J&F'smom from TBW lol

Anonymous said...

I know how frustrated you must be..
When Ashton was in the nicu , he wasnt supose to be layed on his right side ..It was doctor's orders..He was getting that flat head thing going on , from being layed on his right side to much...It seemed like everytime i got there the nurse had him layed on his right side..Then we would agrue about it for about 15 mins , then the next vist , he would be on his right side again..The formula issue ...They really encouraged me to pump , they wanted him on breast milk , they added calories to the breast milk , but i was drying really quick..i coundnt produce that much during pumping, and i eventually dried up..well anyways he was placed on a formula 22 calorie ..and he gained weight like crazy on that , was doing excellent , well anyways the head nurse gets a wild hair up her ass , and has his formula changed ..she was training to be a neonate , she had a special little name but i forget what it was...that was over 3 years ago..well anyways , I was not told about the change , the new formula , gave Ashton the hershey squirts , and he was losing onces everyday ..I was crying , i didnt understand why my baby that was doing so well and almost cleared for going home , was taking nose dive and his health was fading ...Until the she came in and told me she decied to change his formula back to the orginal formula he was on ..That'w why she thought he was losing weight , and causing the lquid poops ..I wanted to strangle her , for not telling me that she switched him , and for leaving me to wonder why he was losing weight so rapidly..The formula was to rich for his tummy and was resulting in diaherra, causing him to lose i tottally understand the this is a really long comment lol ...

best regards
Sarah & Ashton
mommy to 26 weeker