As much as it is to be expected at this point that our baby would end up in this challenged area of the hospital, its still an emotional struggle and a disappointment. We had a great deal of NICU experience under our belt prior to this, a little bit with the two older kids, and months worth with saylor, so I expected to be able to get through a little breathing challenge like a breeze. Not so.
We carefully selected our delivery hospital and OB. So much so that it greatly inconvenienced us as all of those services were in slc and we were in provo. We knew that there were very few docs willing and actually capable of taking on the risks that we had to offer with a pregnancy and we wanted someone familiar and comfortable. With dr ball {our fetal surgery UCSF OB} at st marks, the decision was a no brainer! But the NICU brought that choice all into a different perspective and really made me acquire some serious second thoughts.
Pretty quickly we felt unwelcome in the NICU and unaware of what was going on with Nox. The nurses were not comforting or kind, they were pushy and obtrusive and made us feel not welcome there. There was no level of communication with the neos and or nurses and anxiety began to mount for us quickly. I actually had to seek out the neo and demand info and a care plan. Though over the week we were delighted to have a good warm nurse here and there things didnt get much better. I felt imprisoned and depressed. There came a sense about the situation that he wasnt ours and that we could not and should not be involved in the decisions behind his care. Granted i was sensitive and emotional but people i wasnt flying blind here, been there, done that, i knew what my previous experiences had been. This was such a far cry from UCSF, a place that eventually grew to be part of our souls and our home! We were dumbfounded and unsure of what to do and how to handle it.
The situation improved just a tad when my OB stepped in after I told her that things were not going well and that i was upset about several things. She called the social worker without telling me and soon we got a visit and the staff began to endeavor to meet our needs. But it felt reluctant, and then we felt like were being ridiculous and or abnormal or whiny and difficult, one of "those" parents. A really unfair feeling from my perspective.
The peek came near the end of our stay when nate had gone home to care for the other kids and go to a football game and i was left to juggle the insanity i was experiencing. One night at 2:30 am i went to feed nox and found him missing, in a procedure to change his IV yet again. His veins werent holding them well. I could hear him screaming in the other room and over an hour later i lost it! They poked at him for an hour straight, he never stopped screaming. Several people tried and no one could get in a vein. I was livid that they did not stop and give him a break and re-evaluate their plan with a neo. I got the charge nurse and told her enough we are taking a break, the IV is not life or death its only for antibiotics it can wait. She was so angry that I had overstepped bounds this ridiculous place had so rudely drawn, she treated me as though i had intruded on another baby's care. She immediately was defensive. She began to argue with me believe it or not. 30 min later she was still fighting with me and i couldnt take anymore. The stress ruptured and i headed up to my room to take a moment to remove myself and call nate to determine how to handle this.
nate usually is the lower key individual in these circumstances. Urging me to be patient and not judgmental to look at things in other perspectives. When it comes to medical stuff its usually me armed with the knowledge and communication. not this time. When i got off the phone i thought things were no different, that i would have to figure out how to fix this despite that i felt emotionally out of my element and uncomfortable as all get out. to my surprise nate was determined to resolve this as he sat home filled with anger about the situation. he called the hospital and demanded to talk with the charge nurse who fought with me and hospital administration. it did not take very long for people to start coming to my room with apologies. The next day i felt a peace in a plan and clear constructive communication. I still felt unwelcome and even more like the parent everyone hates while i visited the NICU but i felt comfort in nates support and a turn around of care.
It became evident that they wanted to get rid of us as much as we wanted to leave. and that one helpful staff member, the social worker began to step in. So they arranged for some home health care and a way for us to go home even though Nox was not entirely ready.
Only 24 hours later I took my son home on oxygen and monitors. I felt like i truly was being released from prison. I cant even begin to explain the strange and unfamiliar emotions i felt. the release and happiness. the feeling that he finally was mine! A week that felt like a year! I have been there before, we have done 20 surgeries alone on saylor in addition to the NICU stays. I know how taxing a hospital room can be. But this, this was so far from pleasant the feelings were extreme. {little did i know that i was moving from maximum security to at home arrest.} either way it was a much better situation and i was delighted to have my little man back full time and be able to delight in the little things, like a shower in my shower and my kids surrounding me and a familiar place to rest my head.
more on at home arrest to come ...
