Monday 6/13/11 - Addison underwent surgery to hopefully cure her reflux, help her gain more weight and get her home with us. Doctor's performed surgery for nearly 4 hours to place a Nissin, G-Tube and complete two bilateral hernia repairs. She and I now have matching scars on our bellies, mine of course from the c-section, hers from the hernia repair.
Monday she was doing very well and they said they probably could have taken her off the ventilator in the OR, but they wanted to wait and let the NICU staff handle during recovery. (Mind you she was only on 1 liter nasal cannula pre surgery), We were elated and relieved that she had done so well. By the next morning Addison had declined rapidly from a respiratory stand point. It was obvious that she was in a lot of pain too, but it didn't seem like much was being done about. That being said, I know there is a fine line between keeping her comfy and sedating her to a point that she needs too much support from the ventilator.
By Wednesday she was a little worse. Higher vent settings and conversation about putting her back on the Oscillator were now in play. Addison was touchy and again still in pain. Her oxygen requirements were as high as 70% at one point. At this point Jake and I both are scared and concerned. They decided to start her on Nitrous to help with O2 deliver and finally after a looooonnnngggg day they decided last night to increase her pain medicine and sedate her a little bit more to make her more comfortable.
And that is where we are now, overnight they were able to bring her rate down from 45 to 40 and her O2 is now right around 30%, this is very small progress but progress none the less. There is talk that they might start trying to feed her tomorrow or the next day, until then she continues to get her nutrition in I.V. form.
Just keep praying that they can at least get her settings low enough to put her on Si-Pap for a while, anything to get her off the damn ventilator. I hate it... I hated it when they were born, and I hate it even more now. Seeing a 8 1/2 pound - strong, otherwise healthy baby - with that tube down her throat is not for the faint at heart to say the least.
God obviously thinks we can handle this. All I know is she is ours and we love her more then anything in this world. Our wish is to have her home and healthy so we can start living life as a family and actually enjoying these moments rather then visiting a hospital all day every day. It's tiring especially with Blake in tow, but let me tell you this little boy has been a trooper. I know he hates it there but he is such a big boy and loves to see his sister every day.
One of the hardest things about this whole transition is the fact that there are a lot of missing pieces and there is that loss of "respect" for us as parents. HUGE parts of her history are missing, and this person isn't aware of this, etc. Last night the resident told me that she had no clue they used steriods to get Addison off the vent the first time. I am pretty sure that is documented somewhere and that to me is VITAL and HUGE peice of information.
And then there is the relationship with the nurses. I seriously had a nurse who has only known Addison for two days, tell me "Do not touch her." Excuse me but by gently placing my hand on hers and calmly talking to her to try and soothe her, is probably the best thing for her right now. I realize you may be her nurse, but I am her Mom, I know what is comforting to her and that's what she needs right now when she is having a moment where she is freaking out and looking at me with these eyes, screaming "DO SOMETHING MOMMMY, MAKE IT STOP." I would give anything to hold her and surround her in love, but I know I can't right now. The least I can do is hold her hand and let her know I am there. I have been doing this long enough to know if she doesn't like what I am doing and I know when to leave her alone.
I should also add this is the same nurse who found it vastly appropriate to criticize how I was feeding Blake and tell me that after only 5 minutes of being there he was bored. Not exactly like I have alot of options at this point to entertain him but I am pretty sure it wasn't boredom but rather hunger, and I am pretty sure there was nothing wrong with holding the bottle in his mouth while he was still in the stroller, at least long enough to calm him down so I could pick him up. Seriously she whacked me in the arm with a pile of papers and demanded that he deserved to be held and cuddled close and if I was breastfeeding I wouldn't be able to get away with that foolishness.
Ok but yet you think it's ok to let a baby's high O2 stat alarm go off for over a half an hour and not adjust her oxygen because you are too busy checking you email and you think its appropriate to say "enough Addison stop with the bells now." and silence that high stat alarm while you gripe about how much you hate your job??? Very professional. You may be having a rough day, but seriously if you think this is bad you should have seen Addison when she was first born and those nurses who cared for her did it gracefully and never once complained. After only caring for her once, I am very sorry but I don't think you get that right. This is very mild compared to the beginning.
When I talked to the charge nurse about her behavior, I was told this nurse is famous for being harsh and abrasive and that it's not the first time they've gotten complaints about her behavior. Then please tell me why something hasn't been done about it. I probably would have tolerated most of her behavior, but to smack someone with a pile of papers like they are a dog or a child is beyond disrespectful. And I'd like to know even more why she was assigned to Addison again the following day.
I miss the old hospital and the people there who took such good care of both babies. I wish we could still be there. The nurses there were like family to us and we all had a mutual respect for one another. Here it's not the same. They treat us like we are new at this game and like we are clueless.With this hospital comes a "big time name" and there for a "big time attitude" from some of their employees, like because they work there they are better then anyone else. Sigh... we'll get there I suppose, one day at a time, one foot in front of the other.