Tuesday, October 28, 2008

Worry, Worry, Worry

I know all moms worry about their children. But I do happen to think that moms of micros have it worse, here are some reason things I've been reading: (courtesy of my friend Stacey and her blog: the Preemie Experiment).

This is what keeps me up at night. My gut tells me something is "up" with Kaitlyn. Yes, I know, many of you say, just appreciate her for what she is. And I DO, oh I really do, but I still can't help but worry and want to find solutions. that's me. that's what's gotten me so far already in helping Kaitlyn.

Directly from Stacey's blog (hope it's ok stacey):

Interesting article in the October 17th issue of Pediatrics. only have access to the abstract and I never know what I can reproduce legally so here is a snippet of the article...OBJECTIVES. The objectives of this study were to examine the circulatory changes experienced by the immature systemic and cerebral circulations during routine events in the critical care of preterm infants and to identify clinical factors that are associated with greater hemodynamic-oxygenation changes during these events.CONCLUSIONS. Routine caregiving procedures in critically ill preterm infants are associated with major circulatory fluctuations that are clinically underappreciated and underdetected by current bedside monitoring. Our data underscore the importance of continuous cerebral hemodynamic monitoring in critically ill preterm infants.

And some comments from Stacey's blog:
"14 years of preemie-l and 12 years of preemie-child have given us a sea of substantial, varied anecdotal evidence so that anyone with half a brain or an iota of observational skills can see that in the majority of cases, preemies carry life long impacts of their lost gestation. While there ARE kids who do well, graduate from high school and college - create meaningful lives for themselves, there parents can describe the ways that that represented enormous triumph. Many more parents, sit in dark living rooms wondering what "tomorrow" will be like for these representatives of a vast experiment they didn't really know they were being unwitting participants." - S

"At any rate, the research indicates that the effects of brain damage/abnormality in preemies (about 100% in preemies born below 26 weeks)either causes psychiatric problems to worsen or first become apparent in adolescence. Term-born control groups are used in these studies so it is almost certainly prematurity-related brain abnormalities that cause the problems. Other studies have shown a decrease in IQ between ages 8 and 15, and a very large decrease in the percentage of children considered to be normal (this among VLBW preemies). " - Helen

"Bradley S. PetersonColumbia College of Physicians and Surgeons and the New York State Psychiatric Institute, Unit 74, 1051 Riverside Drive, NY
"Premature birth can have devastating effects on brain development and long-term functional outcome. Rates of psychiatric illness and learning difficulties are high, and intelligence on average is lower than population means. Brain imaging studies of infants born prematurely have demonstrated reduced volumes of parietal and sensorimotor cortical gray matter regions.

Studies of school-aged children have demonstrated reduced volumes of these same regions, as well as in temporal and premotor regions, in both gray and white matter. The degrees of these anatomical abnormalities have been shown to correlate with cognitive outcome and with the degree of fetal immaturity at birth.Functional imaging studies have shown that these anatomical abnormalities are associated with severe disturbances in the organization and use of neural systems subserving language..."

And one more:
"On top of the above things mentioned by Helen, I also ran across a press release today about a study showing that young kids who undergo general anesthesia have an increased risk of behavioral and developmental disorders.This study looked at routine hernia repairs, not really sick kids. I haven;t tracked the study down yet, but here is a link to a news article:
Now, if general anesthesia impacts the brains of average kids, what about preemies whose brains have lost that critical developmental time in the womb?"-Kristie

Stacey's daughter was released from her regional center at age 3, many of her issues didn't show until she was older.

I know this may open a can of worms with comments, but I can't help but worry, but know, dear readers, that I still enjoy every minute (well not every minute) with my amazing little girl - Maybe Kaitlyn will be fine, maybe she won't, I love her dearly either way, but the worry, that's motherhood right?


ThePreemie Experiment said...

Directly from Stacey's blog (hope it's ok stacey):

Of course it is Liz!!

For me, the waiting and wondering about the future is the worst part. Of course we all enjoy our children and we don't let the worry get in the way of our relationship with them.

But, it's the quiet times when it strikes. Laying in bed, watching TV, trying to read a book, watching them play, watching other children play near your child, etc. It's those times that get the best of me.

When my water broke at 23.0 weeks I was caught off guard (who wouldn't have been) and often wonder if there were any warning signs that I missed. Had I been more aware, could I have prevented it?

That thought process has continued into parenting Paige. If I am keep such a close eye on her will I be able to prevent something? And, if something slips past me, will I miss the window of opportunity to fix it?

Now, the rational side of me knows that this is impossible, but my heart won't let go.

Yikes! It's all draining, isn't it Liz?

Cora said...

At least you know that you're not alone in your worrying. I'm right there with you. And I hate it, but believe that we are right to be worried and on guard.

I'm just constantly waiting for the other shoe to drop. I'm just waiting for Amelia's "diagnosis". I know 100% in my gut that her extreme prematurity will effect her for the rest of her life. I just don't yet know exactly what the "effect" will be yet.

At least you (and others like us) get it. My friends, family, and even NICU co-workers all just want to live in the dream world that everything is fine with her now. She's their "miracle 23 weeker". And they don't like it when I try to continue to be very, very realistic. I guess only time will tell.

BusyLizzyMom said...

I feel cheated in a way by what they told in when Elizabeth was NICU. I was constantly told she would be fine by 2 years and I believed that all would be okay.
At almost 4 it seems to get worse, we jump over one hurdle but get hit by another all due to her prematurity. I am coming to the conclusion that we will never be out of the woods. I just wish we were warned more, then I wouldn't feel so alone and that it is only my preeemie that has so many difficulties.

Anonymous said...


You were so much worried about your daughter's feeding problem and that was your primary focus and now when her feeding issue is totally gone you are thinking about something else!It's normal for you to be worried but after three years you are searching things that the premie mom already mentioned before. Kaitlyn did not develop any new problem. We see she is improving everyday. I know every parents love their children the most!

Anonymous said...

I can probably get e-copies of the full article for free, if you wanted them. You'd have to exchange emails with me or something because I don't have a blog to post things, and a link would require my university username etc etc. So, if you ever do want an article, you could always email me (the title and author minimum, the year and name of journal would help me find it faster...) and then I could send you the pdf copy. It would only take me a minute, and hey, why not have more studies out there that might help your family?
~Heather from Edmonton

liz.mccarthy said... anonymous above said: "You were so much worried about your daughter's feeding problem and that was your primary focus and now when her feeding issue is totally gone you are thinking about something else!"

"totally gone"???? I guess this person isn't here in my house every single meal where it's a battle to get any more than a sip of milk in. She is suposed to be taking in at least 12 ounces of milk a day (3 oz w/each meal) and we can maybe get 1 ounce in all day. Or the fact that she hasn't gained an ounce since MAY. I wouldn't call her feeding issue gone. She still swallows food whole and we have to remind her to chew. Sheesh!

and "Kaitlyn did not develop any new problem." I never said her problems are new, I've always been worried about her lack of social skills, her refusal to make eye contact, her stuffing of things inside other things obessively, her triping, her lack of fine motor skills, etc. Nothing is New, it's now becoming more "noticeable" as she's older and should be doing things better at this point.

Anonymous said...

Hi Liz.

I posted here a few times before. First of all, I want to say that it is a normal response for you to worry, it's what keeps your child safe. But you seem like a great mom and you are doing everything right....try to relax a little bit. Keep in mind that you just had a baby, you are breastfeeding and probably tired. Sleep deprivation tends to accentuate worry a lot, you need to remember this when you get panicky like this. My suggestion to you, as it is to all my friends, and often to myself, is to get a babysitter for a night and go out on a date! All the best,

Anonymous said...

Some of these studies drive me nuts. Micropreemie children who present with no issues later in life do not have parents on a regular basis who volunteer their kids for research studies. They move on! The research is fundamentally flawed.

Anonymous said...

If you have a kid with no problems it is a lot easier to keep him/her in a research study than if he has problems. Research studies take a lot of time and the financial benefits are small or nonexistent. (Both myself and my kids have been in a few, so I know.)

Going to the local university hospital with a special needs kid any more than you HAVE to, is just not something many people are going to do.

So, in fact, it is the most severely effected children who tend to withdraw from studies.

Nice feel-good theory tho...

Anonymous said...

I do research professionally. I actually know what I'm talking about. BTW, its affected, not effected. Not bothering responding again.