Friday, July 17, 2009

An official disclaimer

So if you didn't know before, this is a blog about MY thoughts and feelings about MY NICU experience with MY (or ok, our - meaning Brent's and MINE) babies who were born at 24 weeks and 5 days after an absolutely horrific pregnancy, month of in hospital bed rest, loss of a child at 5 days, etc. Really, if you want the whole story, start at the beginning of the blog. I must emphasize (apparently) that this is only MY feelings and thoughts - with an occasional installment from my husband, Brent. I am a nurse - but an adult health nurse with limited knowledge of neonatal care - some learned during a 6 week rotation through a level III NICU just before I graduated from nursing school and the rest I've learned on the fly throughout this 89 day (so far) experience.

If you'd like to judge me in any way for what I write on this blog, feel free. But, realize that I make no apologies for my OPINION. There are 2 sides to every story and I am free to voice mine however I choose. This blog has served as my venting spot, information seeking spot, a liason for us to keep friends and family informed and a spot for us to receive feedback on our current situation and network with those who have had the unfortunate blessing of being in a similar situation. That's it. I make it a point to leave out names of employees involved in the care of our babies for a reason. Of course they can likely identify themselves if they read the stories, but no one else knows (or really cares for that matter) who they are. So, if in reading this, you feel slighted or upset by what's written, re-evaluate your actions - no one else knows who you are unless you tell them.

Furthermore, this blog is laced with sarcasm, harsh criticism, tears, jokes - off color or otherwise. In short, it shows my personality. So, if you have a problem with my "tone" stop reading - honestly -no one forced you to search for this one in bilions of internet sites.

Wondering where this is coming from? I'll be happy to tell you...

Aparently, someone felt it necessary to alert the neonatologist (by the way, there are numerous neonatologists employed here) to the blog. In reading the blog about the rectal exam, he came to the conclusion that it'd be a good idea to question me about it - in the NICU, while I was holding Mary Louise, at feeding time, in front of other parents and nurses. Bottom line? He feels justified in his actions (the rectal exam). I don't feel he was. We simply disagree. I say that he should have notified me and given me the option to decline the exam. He says he "wouldn't have let me decline" and "he doesn't have to notify parents of such a procedure".

Assuming you (doctor) are reading this post as well...

Now, I would question, doctor, how you have time to read my pitiful little social blog yet you cannot - to my knowledge - remedy a situation involving a very specific over-dose pointed out to us by you, a resident and other staff. I am not sure why you care so much about my opinion now, but when I questioned your reasons for the amazingly invasive (again - my point of view - obviously not yours) "procedure" on my son, you blew me off completely. I can't believe that it took this blog to get your attention. Amazing. Most doctors, I would think anyhow, would let such words role off their back and reassure themselves that they did in fact do what's best for the patient. But not you. You needed to confront me and destroy the tiny amount of trust hard earned by your nursing staff and tell me, "no one wants to care for my children." What exactly did you expect to gain from such a statement? My problem is with you sir, not the nursing staff. In fact, I have complimented many of them - again, not using names - but the vast majority of them seem to love their jobs and patients. It took awhile for me to get this system down but once I did, I believed that I found common ground with the staff - as in, we are all here to get our children out of the NICU and home with their parents - as quickly and safely as possible.

I find it amazing that we were at a hospital for 3 months prior to this. Every one knew about the blog - and I mean everyone. It is widely understood that this is simply a journal of my thoughts. I've not had a problem with it until now.

So, if you'd really like to judge, please do so. If you think you're in a good position to evaluate my reactions and critisize them- or compliment them, go right ahead - anyone can comment here - and you can do it anonymously. It is not my children who write this. I am the one who needs to vent and has decided that my outlet be this blog.

To the person catty enough to spread the news of the blog. Mission accomplished - my goodness - I wasn't hiding! The proper authorities are aware.


  1. Heather...I admire you so. I read everyday and have been a loyal reader since the start, finding your blog thru another triplet friend of mine. DO NOT allow anyone to tell you otherwise, you give me strength everyday and I do NOT know how you do what you do...please do not stop writing as I look so forward to knowing how well Mary Louise (Louise my mothers middle name, my middle name, my daughters middle name) and David Oliver are thriving...every day. We are behind you 110%!!

  2. I have read your "blog," thanks to a dear friend of mine who had triplets in the NICU herself and encouraged me to read it. And, to avoid any subterfuge, do know that I have honestly discussed this response with her.
    I am very sad and sorry for the journey and the sadnesses and fears that you have experienced. I am also gladdened by the hope.
    On the other hand (and I am a totally inexperienced NICU "body"), I often feel that your pain and emotion colors your experiences. For whatever reasons, I sense that you are very, very angry. And, that concerns me. For your own health and for the health of your surviving children.
    I particularly sense that you are enraged with the treatment you are receiving at your current location. And, to play devil's advocate, I offer you the following: are both of your children now not breathing on their own? (David for the first time ever, from what you write). Both are now nippling and even breast feeding. And, both are finally receiving PT/OT that is significantly contributing to their physical development.
    I guess I come from the old school - in other words, a blog is a blog is a blog. Most of what you write seems far better suited for private counseling. Not saying that you are weak, simply saying that you have been through and are going through a lot. I question if a blog/vent "space" is the best thing. It may be an additional "thing," but I wonder if you could benefit from other support. I guess I kind of wish that for you...
    I especially wish it because I see you as a parent with all of these feelings and fears. And, also as a parent who has yet been unable to communicate directly with the caregivers of her infants. There is so much that you write that is so important but, I never hear that you have addressed any of it directly. You only address it in your blog.
    Thus, I question, how is any hospital to know your grievances and concerns? Through accidently discovering your blog? (as you mention).
    A blog is very helpful for venting but, in reality, it communicates very little to those involved in the present care of your babies. What prevents you from speaking up unless confronted?
    Do know, I am not challenging you. I am just confused. On the one hand, you write about significant improvement in your babies and, on the other hand, you fault anyone and everyone for their failures.
    My dear, based on my dear friend's experience, they WILL fail. Many times over. And, they will struggle for many years. That is multiple birth and that is prematurity.
    I fully feel that you love your babies. Just remember, advocacy is bigger than a blog.

    My best to to you and your family...

  3. Im so sorry you are having to deal with this. I as a mom who has a son who had a short NICU stay kind of know how you feel. I did not start blogging until way after he was born which I think I would have been way better off emotionally if I would have. Yes I do believe anything the doctor does procedure wise they need to call or inform you. I luckily delivered at a level III B hospital. Who always contacted me and let me know what was going on with my child the doctor would even call me themselves out of their busy day it meant the world to me. I do believe some doctors and nurses need to stop and take a look on how a NICU stay effects the parents. Its a rollercoaster constantly up and down and up and down so please make it a little easier on them. I will continue to pray for your sweet babies and I hope things get better for you.

    Still praying and thinking of you from Kansas!
    The Schaber Family

  4. Heather,

    Oh I should not have pulled this up right before attempting to go back to sleep. I am so mad right now I could spit nails. Don't let mean, petty people bring you down. Their day in judgement will come and well you know what I say about Karma....she's a itch.

    Thanks for the update on Mary Louise's and David's weights. They are getting soooo big.

    I hope the pics I sent cheered you up a little.

    Happy Birthday again Little Brother.

    Hugs and Kisses to all
    MIssing you very much.

  5. People only see and hear what they want to see and hear. And people in roles helping people daily through life, death, and the roller coaster of health more often than not become complacent--hardened, so to speak, tuning out the questions of patient advocates about the patient's care, rattling off manuel procedures and rules for their own protection, not the protection of the patient, often throwing out all logic.

    Abruptly interrupting a new mother in the process of breastfeeding her premature infant behind a screen for any reason goes against all natural logic. This interruption is one example that is not in the best interest of the patient.

    In the animal kingdom, the mother would be so upset that she would leave the baby birds in the nest. No one would disturb a mother bird feeding her young. All caregivers need to treat all patients as their own family members always, with utmost respect and love.

    Arrogance and defensiveness need to fall aside and let logic and love shine through for the health of the tiny blessings cared for by so many.

  6. Heather,
    Please offer your neonatologist my heartfelt thanks. He's clearly a great teacher... of what not to do.

    Sir, if you're reading this, I'm a lowly medical student- a third year who is well aware she doesn't have half a clue yet of what it really takes to be a physician. I realize there are two sides to every story, particularly with a rectal exam, and I know that the hardest part of treating a neonatal or pediatric patent is "treating" the parents. It is this interaction with a mother that you have failed in. Firstly, you know as well as I do, that technically, you violated Heather's right to decide on care for her children by performing an exam on her babies that she did not conset to. Does this happen all the time in a hospital- of course- everyone involved in medicine is well aware of the occasions on which informed consent goes out the window. Most of the time, it isn't caught. You got caught, and there's no excuse to be made. Doesn't matter if it was a craniotomy or a circumcision, in the strictest sense of the rule, Heather's right to provide or deny consent was violated.

    Secondly, the approach you took with Heather in the nursery is uncalled for. Some things, should you think merit discussion, are obviously best done behind office doors, not in an open nursery. I'm, oh... two weeks into being on the wards and even I know that. Know matter how long you've been practicing or how fabulous of a physician you may be, you can never stop evaluating and improving your bedside manner.

    I see where you're coming from. If Heather were my patient's mother and not a friend, I'd want to smack her. She's full on obnoxious. She's up the staff's rear, she's always asking questions, she challenges things, and she won't leave you alone. Doctor's nightmare- the mother you wish would shut up, go away, and let your get your work done. Maybe, sir, you've never practiced outside of the private arena, either in medical school, residency, or afterward. It's too bad you can't take a step across the street to Charity anymore, or to the charity hospital where I am training to remind yourself of the parents that don't care. Of the 25 weeker who's mother is too busy attending to her crack habit to have visited her child in the NICU once. The infant with 49 fractures from Mom and Dad we consider lucky- his sister didn't make it after her mother drowned her in the bathtub. The two-year-old sickle cell patient who is screaming in agony for his mother during a pain crisis whose mother smacked him in front of me for interrupting her phone call to her boyfriend. The 4-year-old who died alone because her mother didn't want to leave the casino. Do you remember these patients and their parents or are they not fresh in your memory? They're fresh in mine. They were all people I met last night on call- that much heartache and horrible parenting in one single night.

    Relish the pain in the ass parents and the Heathers of the world. They're a thorn in any doctor or student's side, but they're a thorn we are privileged to have. I'm just a student, sir, but if I can figure this out, you can too.


  7. Good lord Henry!! If people are offended by what you feel, stop reading!!! Your response was right on. Otherwise, I think you have the right to write your opinion and feelings. That is a right we have in this country thankfully. From an educator of special education, I am learning a ton of how to help my parents in the challenging journeys that they have started. your pain and joy are a reminded that all children are children first and that parents see them as that first. The other layers of medical needs and learning needs only cause the mama bear to rise to the surface faster and more intense. From the parent in me, I would have been doing the same thing only without the medical knowledge to back me up but I would be drawing on my friends that have it to help me. The bottom line Heather and Brent; keep it up!!! Dont' stop writing what you are experiencing we are all learning from it. Evem the medical staff in any hospital if they can open their blessed little brains.

    Please give your sweet angels a kiss from Oregon. Happy Belated Birthday cousin!!!
    Love, Robin

  8. This literally made me fighting mad. How old is this doctor- pre-K or has he made it to first grade? THis is possibly the most unprofessional thing I have ever heard of, and I am so sorry that you have had yet another bump in the road. I must say that this experience with him makes me NEVER want to use Tulane's facility. However, it does make me VERY proud to be friends with such a great mom. Love you, McCall