I am so late on this conversation, but thanks, Laura for clarifying on ADD.

Who knows if there is connection between PE and delays but, every specialist and therapist we see wants to know how the preg was! Both of my PE/PIH babies had or have delays. Like anyone else, I want to know if PE contributed. In Janie's case, you can't tell me that low fluid and low blood flow for several months didn't effect her. We will learn more in Sept when she will be tested for a syndrome (some are caused by poor blood profusion). The other question is: what can be attributed to PE and what is attributed to prematurity (though caused by PE)? Janie was technically 37wks but has suffered with so many preemie issues-I tend to swing towards PE/PIH related cause and effect. It is frustrating to live through the terror of PE and then cope with the "waiting for the other shoe to drop" after the baby is born. For many of us that "shoe" did drop...twice!

How are you all holding up personally with the challenges?

Nancy Eastwood
Moderator/WA State Co-Coordinator

Calvin-8yrs
Saren-7yrs
Scott-5yrs (PE)
Janie-1yr (PIH, oligo and low blood flow)
http://www.babiesonline.com/babies/4/4lbs/

My girly is starting kindergarten in the fall and I worry a lot about how she will do. She speaks very well, and is very social with no real behavioral problems at all - and CERTAINLY doesn't look like a preemie. But she is so busy! I actually use to teach preschool so I have a pretty good knowledge base of what to expect from this age and they are ALL wiggly kids... but my 'noodle', as we call her, seems a little excessive. I have had her in gymnastics and dance, but she is either COMPLETELY uninterested or really does not know how to sit still! She is just the sweetest thing, so loving and friendly. But I cannot get the child to sit through a STORY! She will not pay attention. I have talks with her preschool teachers and although they see Kenzie's inability to sit still, they do not at all feel that it prevents her from learning because she is ahead of where she needs to be. So, maybe she is just bored or completely uninterested in anything I might consider to be fun for her...hmm...
Kenz has never been a temper tantrum thrower, but I hear ya on the whining!!!
Catherine - I think you hit the nail on the head. It seems impossible to think that ourselves and our children can walk away from the frightening events involved in PE unharmed. Noodle was a three pounder - a "feeder and a grower", they said, until the day before she was suppose to come home and she FLAT LINED! Thank god she was still at the hospital, and not at home. She had been treated with meds for a PDA shortly after her first 24 hours, which they thought had solved the problem, but infact did not work. So my baby survived the next 3 weeks with a whole in her heart and NOBODY knew! Can you believe it? Anyway, she had heart failure on her left side and had surgery and came home on the monitor and the meds, weighing 4 pounds...its hard to believe such a little critter can overcome and be "NORMAL", right? And as a mother, you do feel guilt because your sicknees resulted in theirs...
My husband thinks Kenzie's only problems are that I spoil her, I worry too much about her, I don't enforce the rules, etc. He's probably exactly right. It's hard to not be that way with your child when they were once so fragile, and their whole existance seems so miraculous...
Anyway, here's to our preemies growing up!
Wendy
DH- Ryan
DD - Kenzie Celeste, 30 weeks GA, 3 lbs. 2 oz.
Severe PE

Yeah, when you're around kids a lot, you notice that they all do the zoning thing to an extent. It's when it's past that extent that it's so frustrating & freaky.

Our day today started with a major meltdown...I hate when the day gets kicked off with that kind of scene. It's so hard to change the tone of the day once it happens. I made Nicky stay in his room "until his grumpies were gone," and he seems fine now, but I don't get over it so quickly. I'm trying, though! Maybe when Kalen goes down for his morning nap, I can take a few minutes & lose myself in a book. Harry Potter should get rid of my grumpies, right? [:p] (Actually, I'd rather sleep, but there's a good way to let the whole day get away from you...LOL!)

Aimee
Georgia State Coordinator

Ds Nicky - 3/24/00 (28 wks - eclampsia)
Ds Kalen - 7/10/03 (36 weeks - preeclampsia)

Hehe , it is actually NORMAL for kids to do that sort of not paying attention until about age 7 or 8 years old and then again from ages 12 to 25 :P. If you take the time to notice, you will find yourself drifting off in thought several times a day where you don't notice things going on around you.
I think one of the things that really hit was that people have looked at Alex and said you know if his speech was fine no one would say a thing about the other behaviors being abnormal!

We often wonder if how sick I was played a role in his speech problems. Whether it was a lack of oxygen the last few weeks that affected his brain development, whether it was all the drugs at birth that lowered his immune system and caused so much illness and ear infectiosn the first year which led to exagerate the delay, or if it was just meant to be.

But we can easily see that some of the stuff is simply genetic, as Mason does a ton of the same things and yet has no delay (and I bet no one even mentions it on him too!)

Erin

Moderator - Parents of Preemies
Missouri State Coordinator
Mommy to Alex (4)and Mason (1 1/2)
Law Student - 1 year done, 2 to go

OMG..... reading this post so sounds like my DD... even though the headstart teachers said they rarely had any problems with her.

Today, for example, we were walking in the parking lot going to cross in front of the store to go in and she wasnt listening and a speed demon (doing like 30 in the crosswalk in front of store) almost hit her. When I told her to get beside me she stopped and said *huh??* if she had taken 2 more steps the lady would have hitten her. Then she just looked at me like *what??* She was just off in her own little world I think.. again.. she does that so often..

she can be right beside me and not hear what I say to her. After reading some of this I dont think it is just me be impatient.



Donna - 32
Richard - 33
Whitney Lynn Rochelle- 6-27-99 - (36 wks due to PE) 5lbs 2oz 18in long
Wyatt Elijah Lawrence- 7-3-03 (34wks 6days due to PIH/PE) 4lbs 6.8oz 17in long
Expecting #3 EDD March 3, 2005

http://www.geocities.com/raindropzplace/Wyatt.html?1057812569412

http://www.imagestation.com/member/?name=raindrop1971

I know this glaze of which you speak.... actually, that's part of our Parenting Challenge of the Day. Critter has moved our of our little sphere and into the wide world- into soccer, school, scouts- and I see her glaze for other adults, and try to figure out a surrepiticious way to thwack her on the back of the head to get her back into 'real time', else she miss the instructions completely and she's running south on the soccer field while everyone else is running north...

She's primarily inattentive, rather than hyperactive, so this is really the first time we've really had to hit this head-on.

Getting that space is gooood. My DD has a really special relationship with my mom, and my mom will come and claim her on the weekends and spoil her. It's good to know that she has some special time to lick her wounds that I know my impatience must cause.

I'm having a hard time separating my parental expectations of what I want her to be to something that's reasonable for her.

We're four hours behind you East coast folks....

Laura
Moderator/AK Coordinator

Mom to Alicia (severe PE) 5/98 and Camille (htn, oligo) 4/03
http://www.babiesonline.com/babies/c/camilleandallie/

Laura, I ask myself constantly if Nicky's hearing is okay, but it always has tested normal. You can be holding his hands staring into his eyes, and he still doesn't hear you. When you say, "NICKY!" he goes, "Huh? What?" and you can see his eyes sort of unglaze. It's freaky and an endless source of frustration. Just this morning, Jason said, "He doesn't really hear us when we talk, does he?" I really think he doesn't a lot of the time.

I didn't ever expect this sort of thing due to his prematurity, but finding the research that shows micropreemies have a 50% higher chance of ADD/ADHD has just added another piece to my file.

Yep, Nicky goes to preschool, but we're out for the summer. I'm going nucking futs! LOL He's going 5 days this year!! [8D] Jason's really good about giving me down time when I'm past the boiling point. A couple of nights a month, I go to Starbucks or Barnes & Noble to recharge for a few hours w/ a good book while he handles the evening crazies and bedtime routines. It makes all the difference in the world. Oh, and I AM getting 6 days w/o kids in Seattle next week! [:D][:D][:D]

OH, and in August, my parents are taking Nicky to California for a week to visit my sister! I don't know WHAT I'm going to do with myself with only one kiddo to chase! [:D] Anyway, recharge time is a definite MUST.

You know, I'm trying to figure out the time change...how far are you behind EST?

Aimee
Georgia State Coordinator

Ds Nicky - 3/24/00 (28 wks - eclampsia)
Ds Kalen - 7/10/03 (36 weeks - preeclampsia)

You know what's weird, though? I never really thought of it being caused by the PE- Cami- I'm still waiting for her to implode, she was hypoxic for so long we had a hard time thinking that there wouldn't be something wrong with her-- and let's face it, she's so active that she makes Speedy Gonzales look like he's on tranqillizers. Al- she did really well until about 3.5- 4 years and then we started seeing it, and for her it's huh? Whaat? There's a car coming? Huh?

Her listening is soo bad- someone once asked me if she was hard of hearing. *sigh* My mommy guilt comes from that lack of patience.

Aimee, do you get a break from your babies? Does Nicky go to preschool? I hope you're getting some recharge time, I know I need it!



Laura
Moderator/AK Coordinator

Mom to Alicia (severe PE) 5/98 and Camille (htn, oligo) 4/03
http://www.babiesonline.com/babies/c/camilleandallie/

Oh, Catherine! I know what you mean about saying those thoughts "out loud." It's kind of the same feeling...when the older child is being SUCH a PITA after the new baby's born. There's resentment there on both sides. A friend of mine articulated it so well. She said (& I'm paraphrasing here), "Let's face it. It's just so much EASIER to love a cooing, cuddling baby than these little people who constantly try us, talk back & refuse to behave as we always thought our children would/should." I understand the nausea completely...


On a happier note, Suzanne, Hannah sounds wonderful! How great that's she's caught up so beautifully!!!

Aimee
Georgia State Coordinator

Ds Nicky - 3/24/00 (28 wks - eclampsia)
Ds Kalen - 7/10/03 (36 weeks - preeclampsia)

You know.. I think that we're all just waiting.... for the axe to fall. After the preeclampsia, after the fuss, after all of that... surely we just couldn't be so lucky that our kids are truly unscarred by what happened to us.

Mommy guilt by the bucketload. This whole thing with Lucy and the speech delay. We really assumed that it had to be related to preeclampsia.... we never though that it could be something "simple" like ears... no it just had do be something hidden and scary and intangible coming from her harsh birth experience.

Dave and I have noticed that we really don't react to stuff that Lucy does in the same way that we do to either Finn or Chloe. All born at the exact same gestational age +/- 48 hours, but we're always waiting to "find the flaw" with her. To articulate that... frankly makes me want to vomit.... It seems like such a betrayal of her.

If this is what preeclampsia does to you, I'd have swapped it for kidney failure.

Catherine
Mom to Finn, Lucy (preeclampsia and HELLP) and Chloe.
Moderator HELLP Syndrome Survivors