Reflections
Posted by realityrounds on October 4, 2009
There is nothing like an international conference to open up you mind, make you think, refresh, and rejuvenate your soul. (*80+ degree weather, sunshine, Corona’s by the water, and kvetching with other bloggers (1), bloggers (2), bloggers (3), also helps). As mentioned earlier, I am talking about the recent Lamaze conference which I had the pleasure of attending. I initially felt like a fish out of water, because I believe I was only one or two NICU nurses who attended. But these insecurities rapidly disappeared as the women I met showed much interest and enthusiasm in improving the lives of babies, as well as mothers.
I have made it no secret that I have been flamed for writing on very emotional and controversial topics of resuscitating infants at the edge of viability. I have done a lot of soul searching on this issue, and how my words may have effected those who read them. I can write words, but I do not have to live the words I write. It is the parents of NICU babies whose opinions I care about the most. They live the reality. Resuscitating infants at the edge of viability, or below, is an emotional, heart wrenching discussion. It is an important discussion. One I do not think I should shy away from.
But there are other topics, after much consultation and input from others, I would like to focus on. These may be simply blog posts, joint ventures, or potential future research projects. The issues that have really got me thinking the last few days are these:
- What the hell is going on with David Letterman? (Sorry, feel the need to lighten the mood).
- Therapeutic touch for NICU babies. Babies in the NICU often only feel the touch of hands performing “procedures” on them. Lifesaving or otherwise, this touch causes pain, fear and stress in these babies. How can we change this? Options include massage and healing touch. Much research needs to be done on this.
- Parents of NICU babies tend to be the “forgotten” ones. There seems to me , to be much support and outlets for moms’ who are lucky enough to deliver healthy full-term babies, and even many support groups for moms’ who have tragically suffered an infant loss. But what about the parents who have a baby in the NICU, and have a baby who survived their NICU stay. What kind of support do they have. It is NOT enough to lecture these parents that they should just be thankful their baby is alive. That is a cop out. Much work needs to be done!
- I have heard over and over again, at the Lamaze conference and other places, of NICU nurses acting as if the babies they care for are their own. Yes it is important to care for our patients with everything we’ve got, but at the end of the day, the baby belongs to the parents. We need to foster this fact from day one in the NICU. It may mean having the mom give developmentally appropriate touch to her 24 weeker hooked up to a ventilator and central lines. It means giving those parents a sense of control over an out of control situation. More work needs to be done!
- This is a hard one. Communicating the long-term outcomes of NICU graduates to the general public. And, more importantly, improving these outcomes. I do believe there needs to be transparency in health care. Like it or not.
Much work and thought needs to be done. My mind and my body hurts. Why did I not just become a locksmith as originally planned?
RR
darlene said
What an amazing conference it must have been! I wish I could have been there, too!
I like what you have to say about comforting touch. I’m an avid babywearer, and there are often threads on The Babywearer.com about kangaroo care for micro-premies. Anecdotally, it appears most NICUs do not support or allow kangaroo care, arguing that micro-premies are too sensitive and easily overstimulated to be touched at all, let alone held and worn skin-to-skin by their mothers. While that seems at least plausible with the extreme prematurity of these infants, too often it does seem to smack of, as you put it, the nurses thinking the babies are their own.
RR, the parents and babies who encounter you are blessed.
Rebecca said
I was so jealous reading the blogs of all the people at the conference! Someday I’ll make it there myself.
I am so excited to hear your ideas/projects develop! I would love to hear more of your thoughts about just holding babies vs. holding babies skin-to-skin. Going to the NICU for LC observation I see parents holding their babies, but very little skin-to-skin contact. How important is the difference? As Darlene asked, is there a difference between very early preemies vs. later preemies? If you were interested in doing a couple posts on this, I for one would be grateful
I concur with Darlene, I am glad you went the nurse route instead of locksmith!
Wanderer said
“Parents of NICU babies tend to be the “forgotten” ones. There seems to me , to be much support and outlets for moms’ who are lucky enough to deliver healthy full-term babies, and even many support groups for moms’ who have tragically suffered an infant loss. But what about the parents who have a baby in the NICU, and have a baby who survived their NICU stay. What kind of support do they have. It is NOT enough to lecture these parents that they should just be thankful their baby is alive. That is a cop out. Much work needs to be done!”
In that vein as a NICU Kiddo father, please remember the fathers too. There’s a lot of resources for Mom (and well there should be) but us Dads tend to suffer in silence, alone, lacking much of the support given to Moms.
+1 to the locksmith idea. I still wonder if there is time to go to truck-driving school!
realityrounds said
Ahhh, truck driving school. I dream lost
Seriously, thank you for your comment. I agree 100%. NICU Dad’s should not be forgotten, that is why I tried hard to say “parents” instead of just “moms”. I do agree that Dad’s suffer in silence, and work also needs to be done on this fact.
Sarah said
I can’t speak to procedures with micro preemies, but most of the nurses encouraged kangaroo care with my 29 wkr. In the beginning I had one nurse who discouraged me from holding my son. I think she felt it was too much trouble to move all his wires and tubes so that I could hold him. But all of the other nurses were wonderful and supportive and encouraged me to parent my baby, even if it had to be in the NICU for a while. I can’t tell you what a difference their support made to me. I am so, so grateful.
Kathy said
May I add my voice to the chorus wanting more discussion of kangaroo care? One question in particular is, “Is there a set definition of this practice, or are different hospitals, nurses, and doctors going to define it in different ways?” Also, does your NICU strongly encourage KC, and do you think that is going to be the norm? And, how long do moms hold their babies in KC? Obviously, marsupials hold their premature infants in their pouches 24/7, but that is probably not feasible for humans (changing diapers, dressings, IVs, etc., plus mom having to use the bathroom or otherwise leave the room, with the baby still attached to all sorts of tubes and wires). Is it counted as KC if the mom snuggles the baby for as little as half an hour, or is a lengthy time period in view?
Jill--Unnecesarean said
Being a locksmith would be sexy because you could moonlight as a burglar.
realityrounds said
“Being a locksmith would be sexy because you could moonlight as a burglar.”
You have a very interesting point. I have a feeling I would come out looking more like the “Hambuglar” than a sexy, Cat Burglar type.
MomTFH said
What a great list!
But, I was waiting for one of them to be gardening…
realityrounds said
Gardening……How could I forget that one!
Stacey said
I just wanted to say ‘thank you’ for diving into some controversial topics (just found you throught TPE’s site) and for paying enough attention and having the compassion to come up with some of those other topics (and the good humor to include Mr. Letterman in there.)
Here’s an interesting aside to the kangaroo care topic. I was scared to death of my first preemie, who was also my first child. I already felt like I didn’t know what I was doing and then suddenly I was faced with this fragile, sick baby who was attached to so many wires and tubes. I didn’t have the enthusiasm for holding him that I wish I’d had. He was just so tiny (and not THAT tiny at 3 pounds) and was doing so poorly that I was scared I’d do something wrong. I didn’t always appreciate the nurses who pushed me to take on more of the parenting, but they were doing me a favor, in retrospect. When I brought my son home after 14 very long weeks, I felt like a pretty competant caregiver!
I’ll also submit that I knew my daugher (preemie #2) was a crabby little baby and with a toddler at home, I hated the thought that she might be screaming in the NICU with no one available to care for her. I was *relieved* when I found one of the nurses carrying her around the NICU one day. Sometimes nursing goes beyond medical care and the nurses who understand that are absolutely priceless. Thankfully, I never felt like they were trying to claim ownership of my baby.
Despite all the nasty comments you’ve gotten of late, I hope you really do feel like a hero. To those of us who had a long, hard NICU course (or two)…at least I know I speak for myself here…there are few people who are bigger heros to us than you are.
MomTFH said
Oh, what a wonderful story about the nurse carrying your daughter around the NICU. What a caring nurse.
Amy Romano said
I’m late to respond but I wanted to say a big thank you for coming to the Lamaze conference. It was such a treat having you there and getting to know you and your work better. I know these bumps in the road have been difficult, but there *is* a lot of work to be done, and you are such a great writer and thinker about these issues, I would hate for your voice to be lost. So welcome back to the fray!
realityrounds said
Thanks Amy.
Love The Fray
Jessica said
I just found this blog through a recommendation from someone on a tramatic birth site. I haven’t read much, but already know I will keep reading. My baby wasn’t premie, he was actually born on his due date, but he was in the NICU for 32 days, for the first 2 weeks or so he was considered, by the nurses, to be the sickest kid there. We really thought we were going to lose him. But through everything, the one time I almost lost it and started yelling at the doctors was when it came time to hold him for the first time. I would have lost it if my husband hadn’t taken me out of the conversation. The doctors and nurses said ‘you can hold him once THIS’ has happened. Then it would happen and I’d ask to hold him and they’d say “well, we need to wait for THIS to happen” the third time they changed their minds about when I could hold him was too much. It was so frustrating to see all the premies (the vast majority of the NICU were premie babies) all kangarooed up with their parents or cuddled close, swaddled up, and not be able to hold my son. It was 3 weeks before I finally got to hold him and I really think that it would have been safe (and benificial) to hold him earlier. As good as the doctors and nurses were, I still don’t know why they kept changing their minds and putting it off.
enjoybirth said
How fun!
I so agree about support for NICU parents. My son was in the NICU for only 12 days and it was HARD. I can’t even imagine months of that stress. I remember once reading an amazing article about Grief, Stress and the NICU parent. It helped me understand that what I had felt was normal.