Any 22 weekers out there?

tralalaRN · Jun 24, 2011

NICUgal - difficult to read your post. If you didn't question this horrific "care" - you would no longer be human.

littleneoRN · Jun 24, 2011

I'm not sure what I need to say convince you that I'm not lying nor exagerrating about these real 23 weekers, but I'm not going to continue to try. First, because I'm not sure you'd believe me if I introduced you face to face. Second, because the fact remains that they are the exception to the rule, and I'm not disagreeing with all you are saying anyway. I ask many of the same ethical questions. I'm just acknowledging both sides, especially for the benefit of readers who may not have NICU experience and be horrified that don't just want to "save the babies" at any cost.

NicuGal, MSN, RN · Jun 25, 2011

Sorry...just saying that we didn't save 23 weekers about 22 years ago, neverless 22 weekers, the age these kids would be now that are graduating from college, so if the other poster is seeing college grads from that age group of kids then they weren't really true 22 and 23 weekers most likely. 25 years of experience is telling me that.

Yes, there are exceptions to everything.

littleneoRN · Jun 25, 2011

DEFINITELY not 22 weekers! I've only seen one discharge, and she was minutes short of being a 23 weeker. I think our hospital was early on the wagon of resuscitating 23 weekers. I don't advocate at all for trying to push that line earlier than it already is. We may have already over-stepped.

Preemie 2 RN, ASN, RN · Jun 28, 2011

I was born at 24 weeks gestation due to my twin sister having complications in the womb. She passed away at birth but I survived. I lived for 4 months in the NICU, have very mild cerebral palsy from the waist down, hydrocephalus and chiari malformation and ROP with cataracts (cataracts were removed in my left eye a few years ago, I cannot see out of my right). I was born in 1987 and I am now going to school to become a nurse in hopes of working in the NICU to help other families. I know that 22 weeks and 24 weeks is a difference but I just felt that I'd share my story. I have struggled over the years with my hydrocephalus, shunt revisions and horrible headaches but I am very grateful to even be alive right now. I feel that the NICU is where I need to be, a way to give back in a way. I hope I get a job there after I get through school :)

tralalaRN · Jul 1, 2011

DEFINITELY not 22 weekers! I've only seen one discharge, and she was minutes short of being a 23 weeker. I think our hospital was early on the wagon of resuscitating 23 weekers. I don't advocate at all for trying to push that line earlier than it already is. We may have already over-stepped.

From my experience and from being a part of preemie parent blogs, boards, attending conferences over the years, I would agree - NICU care has over-stepped. There is not enough support to care for all the disabled former preemies now out there in our families, schools and communities. Just because we can, doesn't me we always should.

tryingtohaveitall · Jul 1, 2011

I was born at 24 weeks gestation due to my twin sister having complications in the womb. She passed away at birth but I survived. I lived for 4 months in the NICU, have very mild cerebral palsy from the waist down, hydrocephalus and chiari malformation and ROP with cataracts (cataracts were removed in my left eye a few years ago, I cannot see out of my right). I was born in 1987 and I am now going to school to become a nurse in hopes of working in the NICU to help other families. I know that 22 weeks and 24 weeks is a difference but I just felt that I'd share my story. I have struggled over the years with my hydrocephalus, shunt revisions and horrible headaches but I am very grateful to even be alive right now. I feel that the NICU is where I need to be, a way to give back in a way. I hope I get a job there after I get through school :)

Kudos to you! I wish you all the best. :heartbeat

midlife101 · Aug 4, 2011

If I may,

I am a 46 yr old dad of 3 wonderful girls (one of which was cared for in the NICU for a couple of days after her birth.)

I have recently had what many at this site refer to as a "calling" and as such will soon be starting prereqs for nursing school.

For the first time in my life, I know what I want to be when I grow up and where I belong--the NICU.

I just wanted to thank you all for participating in this discussion. It has been so very eye opening. Since I began reading this thread, I have felt as though I was sitting in the caffeteria with you all listening intently to an amazing discussion of a very difficult issue for which none of us has the solution.

You have all further strengthened my resolve to someday become a NICU nurse.

Midlife101

tralalaRN · Aug 4, 2011

Today, ironically, is one of my daughter's 25th birthday. She was born at 24ish weeks gestation in 1986. At two days of age, she sustained a massive bilateral grade IV IVH. She began a significant down-hill slide with full vent support and frequent cardiac episodes. Shortly after that, we met with our hospital chaplain and told her that we wanted to d/c life support and let her go to God. Being Catholic, we believed that this was nothing more than torture. Our chaplain agreed. My husband met with the neonatologist and told him that we wished to d/c the vent and let her go. I was still pregnant with her twin at that point.
The neonatologist said that he was unable to do so because of the Baby Doe Laws in place that prevented them from removing the vent. We were horrified. But powerless. Very young, didn't know anything about this foreign world of neonatology or rights in medical care at all. We unfortunately, did not fight to remove the vent. We felt absolutely helpless.
She spent 5 horrific months in the NICU. 500 heel sticks over that time until her feet began to break down from the multiple stabs. She developed hydrocephalus for which an external shunt was placed - we found out later, without any anesthesia. Multiple infections, massive brain damage.
Today she is 25 years old. Today is the anniversary of the Chernobyl nuclear reactor meltown. 25 years ago, our world also melted down. She survived - sort of. Well-loved, but in horrible horrible shape. She has massive cerebral palsy, profound mental retardation, uncontrollable seizures. She requires one on one care 24/7. She is unable to sit for long periods of time. She has never walked. She used to be able to sit on her own until she needed rods placed in her back to prevent further curvature of her spine. She never sat unassisted again. She is now on a air filled mattress that rotates her from side to side 24 hours per day. Our marriage collapsed from the weight of continuous care-giving with very little help.
This is the other side that no one ever hears about. The endless cruelness that this type of medicine can wreak on a family.
The other side of the miracle baby mentality.

An update. Mercifully, my daughter passed away on July 8th after being hospitalized for aspiration pneumonia following status epilepticus. She was loved, she will be missed, but she is so at peace. When I heard she had passed (her grandma was with her), I walked outside, into the starry night and stood on my front lawn and thanked God for finally taking her home. Her funeral, for me was a celebration of her being released from this life. I realize that many of you may not understand this, but it was 25 years of grieving - watching her suffering in countless ways.

Ironically, her twin sister gave birth to a healthy full term baby boy 2 weeks prior to E's passing.

NicuGal, MSN, RN · Aug 4, 2011

I am so sorry for your daughter's passing. And it is a lot of years of grieving...for that perfect baby you didn't have and for every milestone you didn't get to meet with her. But you are right, she is at peace now. Take care :redbeathe :heartbeat She was very lucky to have a mom and family that cared so much for her :heartbeat

tralalaRN · Aug 5, 2011

Actually, the grieving is for the many many times I sat by her bedside in the NICU, in the PICU's, peds, ERs, at home watching her suffer and being powerless to stop it. Well, I was finally able to stop it - with her aspiration pneumonia, I advocated strongly for comfort care, and my wishes were ultimately honored. She had a peaceful death. It took 25 years to undo what neonatal did.

BabyRN2Be · Aug 7, 2011

Tralala RN - I'm so sorry for all you've been through for the last 25 years, and your daughter was so lucky to have you as a mom. It sounds strange to say this, but I'm so happy that you finally have peace through your daughter's passing. :hug:

In a perfect world, I believe that almost all pregnant parents see the movie by Nicole Conn, called "Little Man: The Story of Nicolas James." (This may not be the exact title but I wanted to differentiate it from a rather raunchy movie called "Little Man" directed by Keenen Ivory Wayans which came out at the same time). It was a documentary about a lesbian couple who wanted to have a second child by surrogacy. The surrogate was not honest with her health history (one kidney, previous pre-emclampsia at term) and developed severe pre-emclampsia at ~25 weeks. The boy, Nicolas, weighed 1lb at birth. This story shows the other half (more than half) which is likely with a micro-preemie birth. Every parent who is facing a pre-term birth (as in 22 weeks) needs to see this movie before saying, "Do everything!!! Just save my baby!!!" I know that's a parent's instinct, but I wish more could see the realities behind saving a 22 weeker.