Tuesday, August 21, 2007

A Simple Question

Stacy from The Preemie Experiment poses an important question in the post How Much Do You Tell? for parents of preemies. We have all been in those situations where someone asks "How old are they?" or "Why do they need that?" in reference to various medical equipment. Then there are the harder questions like, "Why can't they focus?" or "Oh, will they ever be normal?".

As a parent of a micropreemie who is doing well for a 25 weeker and a 30 weeker with ADHD and sensory issues, I often am caught trying to find the *right* answer. Often it depends on the person asking, as many of Stacy's commenters will write. Doctors and therapists get the whole, fought-my-butt-off-to-be-here truth. Caregivers get all the important information. Friends somewhere in between. And strangers, a wide variety. I find that my medication background and nursing degree sometimes hurt me in this area because I am much more likely to give the TMI or Too Much Information reply. My brain is wired to medical knowledge.......I forget that not everyone else is set to that mode. This doesn't dismiss the fact that these questions do get asked and will continue to need answered for many years to come for both Carson and Elias. The goal is to get the answers down to a science.

One of the commenters, Chris wrote: "When a parent faces off with this question, s/he may learn that they are still quite traumatized by their child's disabilities. I think this is often evident in the need to spill one's guts, to retell the story, giving colorful detail. To me this means that we aren't over it. And I think some listeners say "Whoa!" meaning TMI (too much information)."

Stacy responded with this, "After reading what Chris had written, I started to think about the times when I've given strangers the full version of Paige's birth story. I've come to the conclusion that Chris is correct. There have been times when I have told the story because I was truly not over it. There are days when that is still true.

The other side of the coin is I feel the need to tell people about Paige's prematurity in hopes they will understand (and sympathize) why Paige is so socially different. When she acts inappropriately, I feel the need to make people understand the reason behind it. I think it's especially hard because Paige appears normal because of her large vocabulary. So, when she acts odd compared to her peers, I am brought back to reality."

Stacy echos my thoughts so closely when trying to determine how to respond to questions about Carson's behavior. I think the behavior aspects of long-term prematurity impact are often times judged more and questioned verbally less than the more visually obvious physical impairments. This often causes parents of preemies with social and behavioral disabilities to jump the gun a bit explaining their child's actions. I find myself doing it in public with Carson and then looking back and questioning why I felt the need to tell the lady at the park why. His amazing vocabulary and advanced speech in addition to being the height of a six-year-old make people think Carson is much older than his four years.

So, what is the correct answer? Stacy's reply fits how I often feel, but is that the best for all involved? I can't answer that right now but it was comforting to find another parent with the same emotions and thought process involved. Thanks Stacy.


nancy said...

I ran into your blog. I have a 25 weeker and LOVE LOVE LOVE Stacy and her blog. She writes what I feel more ofthen than I even know what I feel.

I think I will have to link you... What a great insight. I agree with both of you as well. How much do you tell....

The Preemie Experiment said...

Thanks Kellie.

It was an odd feeling I got, after reading Chris' response. I have "known" Chris for 8 years and deeply value her insight. But, my first response was one of "oh I am sooooo over the trauma. I have moved on." But, I truly had a revelation when I looked back at the times I have told complete strangers about Paige's birth history. I guess I'm not as healed as I thought I was. *grin*

And, to this day, the most explaining I ever do centers around Paige's behavior. After reading your blog, it's nice to know that I'm not alone.


p.s. Hi Nancy!

baby james said...

kellie, In one of your posts you talked about your son having had the Nissen Fundoplication, in which you stated you almost lost him, may I ask how.? You have visited my blog about my son James and they are suggesting this surgery. I have heard good and bad from mom's who's children have had the procedure. I was and still may be against it. But with some further research I discovered it is consisered more of a minimally invasive procedure, where before I was led to believe it to be a more vasive procedure. I am just weighing my options I of course want to do the best for my son and I am just beside myself wit the decision. Does your son still have a feeding tube and I can see he must be doing well since the fundo, did you notice a big differnce.? I am going to see if we can have some further testing done and go from there I guess I just don't know what to do! Thank you I appreciate your feed back. Tracy

Kellie said...


Yes, we almost lost Eli post-fundo but it wasn't from the fundo specifically. He ended up with severe FTT and dropped down to 14lbs and 30" at 14.5 months (after being 16lbs 5oz and 28.25" long at 11.5 months on surgery day). We had dealt with FTT and large caloric needs for Eli prior to the fundo but recovery from the surgery in addition to the lung damage severity caused by his long-term aspiration threw him into a struggle to live. We were pumping 3,000 calories into him a day and he was continuing to lose weight. The GI, pulmo, and surgeon didn't have answers, genetics could find nothing wrong, endo didn't think it was their issue, and the muscle biopsy for mito revealed nothing. Finally around 18 months things started to turn around and Eli began to grow and thrive. He regained strength. For no reason at all.

The fundo was the best thing we could have done at the time for Eli. It truly saved his life then. His lungs were bad. We would hear him wheezing while he was upstairs napping. He was having a's and b's frequently and needing albuterol and steriods like they were water. Thickening didn't work, GJ tube feedings didn't work, NPO status didn't work. The fundo did. It was a long road with a lot of scars and recovery but Eli is a trooper.

The fundo isn't a "fix-all" however. You often trade one set of symptoms for another. Retching is very common in the beginning of recovery. Their stomachs can't take fast feeds or large feeds for awhile (if ever). We are lucky that Eli overcame this quickly. Eli does need vented daily still due to not being able to burp. We are looking at about 2-3 more years at least on his MIC-key button according to his surgeon and GI. Some kids never need vented and some need to use Farrel bags 24 hours a day. The symptoms vary greatly from kid to kid. The inability to vomit is scary. When Eli is sick with a GI virus we have to let him vomit out of his G-tube or take him to the hospital for anti-emetic meds like Zofran. The up side of a tube is being able to hydrate your sick kiddo an saving some dehydration trips to the ER.

Currently we are undergoing testing to see if Eli's fundo is allowing him to reflux at night. His respiratory status is getting worse again and his recent stent in the hospital with O2 needs has provoked a series of tests. If his respiratory status is worse d/t aspirating reflux again (i.e. a failed fundo), we won't do the surgery again unless he declines to the point where it is life threatening again. The surgery is too hard and complicated. It is very INVASIVE. A six inch incision vertically down the abdomen with complications a mile long is not to be taken lightly. It is only a last resort. However, Eli's declining respiratory status could just be from his continuation of aspiration in swallowing along with asthma and BPD damage. His pulmo told us to prepare for many stays in the hospital this winter for oxygen.

Let me know if you need more info. I have a ton of it. Parent-2-Parent is also a fabulous resource for fundo info and tube feeding info. The ladies there can be intimidating and negative at times (depeding on your outlook on medical procedures) so if you aren't medically oriented, try to take some of their advice with a grain of salt. Feel free to e-mail me too at kappavb at yahoo dot com.