My two cents then let's move on

Hello,

Bob just spoke about the request to remove/censor pics with nurses in them. Now that we know that hospital staff is digging into our site (including pictures from 10 weeks ago) I would like to take the opportunity to say something. As Bob mentioned, there were several nurses in the NICU that absolutely did a wonderful job and we formed outstanding relationships with them. To these individuals we are eternally grateful for your help and dedication in watching our girls (and coaching us) when we could not.

For this, your humor, caring attitudes, and attention to them ------ we thank you and will never forget you. In fact, we wish all the time we could bring the girls up for you to see....they are so big (Emily just hit 6 lbs!!!!!). We envisioned coming up to visit through the years. When the girls were first born I told everyone I knew that the staff in NICUs have a special place in heaven. It's not easy. This is why we feel that the good being done there deserves recognition, but unfortunately the bad aspects are overwhelming the good.

Our disappointments are not with 'you' at all.....it's the rules that the NICU has in place as standard procedure, such as only checking on babies every three hours. There is a drastic difference in the care received between nurses. Inconsistency was one of the problems and we understand is ongoing and challenging problem to remedy. However, there are a few simple things that can be done:

Rule #1 - Take turns making milk or taking breaks so that there is always someone in the room with babies.

Rule #2 - Decide on consistent terms for cares, not so much subjectivity.

Rule #3 - Realize that you are in an ICU, an INTENSIVE CARE UNIT, this is a BIG DEAL and very traumatic. Parents have been to heck and back trying to get these babies into the world and the only person we CAN trust is you to care for them as we would. Be sensitive to that. I beg you not to treat your job as any other office job out there. It's not....what you do is important and critical and we as vulnerable new parents depend on you.

Rule #4 - QUIT THE CHIT CHAT!!!!!!!!!!!!!!!!!!!!!!!! I have never, ever shot the bull at work as much as some of the ladies do (and everyone knows I am a talker!! :)). I would have been fired --- heck, I would feel guilty taking a paycheck if I acted like that. The bottom line with this rule goes back to Rule #3, these may not be YOUR babies but you MUST act like it - it's insulting and hurtful to act otherwise. And for the $5oo,000 bill (to our insurance) just for the NICU piece of the pregnancy and delivery, you should! (Keep in mind this does not include the extra $100,000 for the subsequent stay in pediatrics b/c they went home too soon.) If you do not have compassion and understanding for the delicate situation of the NICU....get a different job.

Rule #5 - Do not become immune to the severity of the situation, as it may have consequences. When the babies have A's and B's right in front of us and no one is around to document, it appears as if they are getting healthier than they really are. The Dr's depend on this information to determine release and medication adjustments. This affects the livelihood of the babies. They were released TOO SOON. What if Emily had died before I could get her help? What if we were not as vigilant (or festidious, as one specialist called me) as we are in managing their care? This leads me to rule #6.

Rule #6 - Dr's.......PLEASE make sure these babies are ready to go home. Do not answer only to the insurance companies. We went through absolute hell the days they were at home (particularly Emily) and begged for your help at all hours of the day and night to no avail. MANY people's lives are affected by this error. Not only the obvious error of damage or fatality to the children, but also consider the coordination it takes to manage these tiny, sick babies. We have had to depend on people to no end. As I sit here Emily is have been solidly grunting for two hours and weazing in and out. She is still sick. We don't know what to do, it's heartbreaking when you are with them 24/7. Everyone who has been around her notices there is still a problem.

We completely understand and agree that the babies should not be disturbed/stimulated between cares for developmental reasons, but they should absolutely have someone peeking under the cover to make sure all is ok more often than that -- especially when they have A's and B's. In fact, we have had so many people who either work in NICUs across the country or have friends in the medical industry who are mortified at the negligence. We do understand that each hosptial with a NICU have various ways of operating, but know this.............you have a choice which one you entrust your babies.

Well, it's up to us to advocate for them and care for them the best we can. They go the pediatrician tomorrow so I will let everyone know how it goes.

Heather