Friday, June 13, 2008

Haunted

Hospital policies have haunted me more than words can even put forth on paper. Even as I sleep in my own bed with my baby tucked in beside me, I awake ready to bat away nurses hands that are reaching for him. Another test, another set of pointless vitals, a scheduled feeding or changing. I hear voices in my sleep that tell me no. No you can't hold him, no you can't rock him, no you can't drift off to sleep with him in your arms. No you can't feed him yet, we have to do this test. No you can't comfort him. I have nightmare of needles being jabbed into his heels for more blood, more testing, always more, and I stand by powerless. Much of it makes sense as far as protection of the hospital. Much of it does not as far as protection of the patient. He stares at me in my dreams questioning me for standing by and not protecting him from what they are doing. And I can't. Even if I want to, I can't. I am cuffed, tied, strapped, gagged, unable to do a thing but watch, and make my useless presence known to my poor baby.

I am haunted by the words of the infamous Dr. Doomsday-the creator of the NICU where we were. Repeatedly telling me I was a diabetic. I never had diabetes, never tested positive in any pregnancy for diabetes. My baby weighted 8lbs 6oz after he was ventilated and given several IV's and boluses of fluid. He was likely more toward the end of 7 pounds or 8pounds exactly. Not a large weight you would see with a maternally diabetic baby. Yet this is considered huge and a sign of maternal diabetes? All because his blood sugar was 0 at birth. The thing is...all of his systems shut down at birth, his liver, kidneys, brain, heart, lungs, and adrenal glands...which regulate hormones related to blood sugar. Yet, the Doctor did not focus on his liver shutting down and say he had liver disease and make a huge issue out of that-it was all about the sugar. Which, his low sugar was definitely an issue, and did need treatment, I never denied that. But to have this man look at me in the face and call me a diabetic when I could prove otherwise to him...flat out pisses me off. This same man looked at my husband and told him that homebirth was wrong and that all his babies that came in homebirth ended up really really retarded. All 8 of them, every year. All 8 year. There were 62 babies in the NICU when we were there. One was a homebirth. 8 a year....that's less than one a month. How can he say all homebirth is bad when his very ward is full of patients from his own hospital? Treated by his own OBGYNs? Transferred from labor and delivery down the hallway?

I look at the discharge report that I was given a copy of. It's wrong. It has repeated incorrect and some flat made up information. It says my midwives never did CPR. It says I never had prenatal care. It says my reasons for homebirth were to avoid any medical assistance. It makes me cry. I don't understand the downright hatred of homebirth. There are many things that I am not, many things I chose not to be, but I do not condemn and hate the people who chose those paths. I am not for hospital births during a normal pregnancy, I am not for bottle feeding when perfectly good mama milk is available, I am not for the cry it out method of child rearing...and yet, you will not find me talking crap or putting down those that choose these things. I just don't understand. I could see treating me like crap if you could prove that I had an untreated medical condition that caused what happened to my son, but the truth is you can't. For one, I had no medical condition, let alone an untreated one. For two, the lack of blood sugar was a side effect of stress from being strangled in the womb. It was not a separate condition. He used all his sugar trying to stay alive and combat the stress. What the report doesn't say that mom was at bedside a minimum of 12 hours a day, more often 18-20. It doesn't say mom got 4-6 hours of sleep each night at most and was back at bedside. It doesn't say that mom knows each nurse by name that walks in the room and exactly how tender her touch is. It doesn't say that mom does all care allowed singlehandedly-changing diapers, feeding, adjusting monitors, tubes and wires as much as they will let me touch. It doesn't say mom slept in car in parking lot for 5 days with cell phone to be called up to nurse baby on demand. It doesn't say any of that. It underlies the terms neglect, crazy, bad, and wrong. All because I made a choice that they wouldn't have made. A choice backed by education, research and belief. A choice which is legally my right to make.

And yet in a community I once respected greatly and wanted so badly to be a part of, I am now shamed. It hurts. The ignorance hurts even worse. The unnecessary testing and about 7 days worth of extra time spent there for these tests which were related to a condition never proven by any testing...that hurts the most. Not having the power to decline this testing without my son being taken into CPS custody-that hurts. Even under custody, they would have done the testing because of their belief-a belief and nothing more-a belief with no fact and no proof. A belief I think was formed the minute they heard homebirth. Let's discuss powerlessness in it's greatest form.

I sit in my living room, baby cradled in one arm, pecking out this post. My oldest boys are arguing, my Ryan is running the show. My house is a mess. The dishes unwashed, the laundry unfolded. The Chihuahua's are scrounging as if starving. And I am smiling. Because I'm home. The blissfulness of chaos-my chaos. The insanity of four boys-my insanity. My home. Here is the place where I get to say no. Here is the place where I say who touches my baby and what is done to him. Here it is safe.

And yet at night my dreams tell me different. They can come here too. They can be anywhere. They can rob you of your sense of freedom, rob you of your right to parent, even the right to just touch your own child. They can take away any sense of normalcy you ever thought you had, and what's worse they make it your fault that it's gone. There was no accident in the eyes of the medical professionals.

I don't know where to turn from here. I don't know how to feel safe again. I don't know how to trust again. I have a routine pediatrician appointment on Monday and it makes me sick to think about having to go to it. I will, of course I will. But it doesn't take away the knot in my stomach of someone else in a white jacket and scrubs touching my baby. I want to hide him from it all. I want the 21 days of medical hell to be offset by 21 days of home. But, I have to force his anti-siezure medication down him, for siezures he never had. I have to take him to so many follow ups...I have to. I am finally in my own home, my own bed, my baby free of wires and tubes, dressed in his own clothes, and still my sleep is fitfull.

As I watch his little black eyes diminish day by day, I wonder how long these wounds will take to heal.

4 comments:

Ruth Chowdhury said...

The medical community needs to be better educated. It enrages me to see doctors making stupid comments & forcing procedures unnecessarily. I will be praying for your nightmares to disappear & for appointments to go well. But it sounds like you are doing what is right - enjoying life, however imperfect it may be. May I learn a lesson from you & stop fretting about the small stuff. Thank you for your post.

CNH said...

A long time, is the answer. Later, when you're feeling stronger, you should both have some therapy. Whatever kind speaks to you, but do seek out some healing. I am so sorry this happened to you. It could just have easily been me if we'd transfered for Claire's ankle/foot. She needed some help upon birth and while my midwives handled it just fine bedside I wonder if it might have gone very differently as a "home birth transfer". I wonder if I might have been forced into doing things, unnecessary things, just because I was one of "those people". I shudder to think.

It's not fair, and you didn't deserve it. Neither did he. :(

starparticle said...

I am so sorry.

Sarah-Lynn's mom said...

I use to have dreams about the NICU showing up at my door step and taking the babies back, because they weren't eating enough (the min. the NICU said they had too), or that it took them too long to eat the bottle. Had those dreams for month after they got out of the NICU. It eventually does get better, and becomes less of a nightmare.

I loved on my babies so much espically from 6-8 (am and pm, because I couldn't be in the NICU. The joy of getting to hold them anytime is great, I hated to be told when I could hold them, change their diapers, change their clothes etc.

My two have been home from the NICU for almost 4.5 years and I still have issue with it at times, but I have learned to deal with it alot better as time passes