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Preemies
NICU follow up today *very long*
The short version is that he scored at 7 months for gross motor and 11 months for cognitive. He's 13 months adjusted.
The long version:
The doctor pretty much said that could mean pretty much anything.
He said that for a 26 weeker with a clear brain (he had no brain bleeds etc) and no complications, he would expect to see him closer to his adjusted age. But, he's had very severe stomach issues, plus a couple of lung infections, plus now this ear stuff, so he's not surprised that he's where he's at.
He said normally, a 26weeker would catch up to his actual age around 3 or 3 1/2. He has no idea how long it will take for Robbie to catch up, of if he will at all.
He said his gut reaction, (He used the word gestalt, which made me chuckle... he's a nerd, but I love it.) was that he would. He said that being behind as Robbie is, isn't great, but he does feel like he has good reason for being so. He said he shows no signs of CP or any other issues they look for and that just watching him, he seems very bright, interested, and engaging. Some kids seem sort of spacey and "blank" but he doesn't see that in Robbie at all, which leads him to believe he has plenty of potential to lead a full life. "Of course, there are no guarantees" but if he were to guess, he thinks he will get there. He just doesn't know when.
He thinks Robbie is "on his own path" and that I'm doing everything humanly possible to assure him the best possible outcome.
Don't ask me how I feel about any of this. I haven't decided yet. I like words like "potential" and "engaging" but I just feel sad that there is even the possibility that he could get stuck somewhere and not get to lead a full life.
That's why I hate these fuucking evaluations. I don't care what they say or how nicely they put it, it sucks hearing everything you kid DOESN'T do or MIGHT NOT accomplish.
Also, as a side note, I put more faith in the evaluations we have done with our own therapists. It was literally a 30 minute play session with 2 therapists (at the same time) and a nurse weighed & measured him, and the doctor pretty much just came in and talked to me and watched Robbie while we talked. I do not feel like it was enough to really see what he can and can't do.
Like at one point, she put this bunny figurine in a container and wanted Robbie to open the lid and get it out. This is something I KNOW he can do. One of his favorite games is putting lids on and taking them off. However, he had NO interest in this bunny figure. AT ALL. So whatever.
I'm not one to make excuses, if he can't do something, I will tell you. But this isn't one of them.
The long version:
The doctor pretty much said that could mean pretty much anything.
He said that for a 26 weeker with a clear brain (he had no brain bleeds etc) and no complications, he would expect to see him closer to his adjusted age. But, he's had very severe stomach issues, plus a couple of lung infections, plus now this ear stuff, so he's not surprised that he's where he's at.
He said normally, a 26weeker would catch up to his actual age around 3 or 3 1/2. He has no idea how long it will take for Robbie to catch up, of if he will at all.
He said his gut reaction, (He used the word gestalt, which made me chuckle... he's a nerd, but I love it.) was that he would. He said that being behind as Robbie is, isn't great, but he does feel like he has good reason for being so. He said he shows no signs of CP or any other issues they look for and that just watching him, he seems very bright, interested, and engaging. Some kids seem sort of spacey and "blank" but he doesn't see that in Robbie at all, which leads him to believe he has plenty of potential to lead a full life. "Of course, there are no guarantees" but if he were to guess, he thinks he will get there. He just doesn't know when.
He thinks Robbie is "on his own path" and that I'm doing everything humanly possible to assure him the best possible outcome.
Don't ask me how I feel about any of this. I haven't decided yet. I like words like "potential" and "engaging" but I just feel sad that there is even the possibility that he could get stuck somewhere and not get to lead a full life.
That's why I hate these fuucking evaluations. I don't care what they say or how nicely they put it, it sucks hearing everything you kid DOESN'T do or MIGHT NOT accomplish.
Also, as a side note, I put more faith in the evaluations we have done with our own therapists. It was literally a 30 minute play session with 2 therapists (at the same time) and a nurse weighed & measured him, and the doctor pretty much just came in and talked to me and watched Robbie while we talked. I do not feel like it was enough to really see what he can and can't do.
Like at one point, she put this bunny figurine in a container and wanted Robbie to open the lid and get it out. This is something I KNOW he can do. One of his favorite games is putting lids on and taking them off. However, he had NO interest in this bunny figure. AT ALL. So whatever.
I'm not one to make excuses, if he can't do something, I will tell you. But this isn't one of them.
This discussion has been closed.
Re: NICU follow up today *very long*
Remember that 11 months is within normal limits of 13 month adjusted age! Don't be discouraged...I work in EI, and find that babies who have lower gross motor tend to have higher cognition scores, and vice versa. Plus, I find as a therapist, that my scores are OFTEN different from the doctor's assessment. I often write letters to physicians for families to take with them to these appointments, so that the doctor knows what my concerns are and what the child has accomplished over the past few months. That way, if the child does not play with a given toy, or participate in a standardized test item, neither the parent or the doctor is concerned...plus your therapists see your son all the time and they know your son better than any doctor who sees him once in a blue moon. Maybe you could ask your therapist for an update on progress to take with you to your next appointment.
It does suck to hear a doctor say those things, but have faith in your therapists and your son! He sounds like he is making progress, and progress is progress! Plus he is showing a strength in cognition! He will walk, but kids do things on their own time, not when we say a milestone should be achieved, adjusted age or not. Good luck!
mcdev- I seriously, seriously considered not going. And then the day was really crappy. The weather was HORRIBLE today (flash flooding and such), then just as we were getting ready to leave, the hospital called for the presurgical registration stuff, so then we were running late. Then, it was so foggy and gross that I completely missed my exit (it's down the street from the NICU, so I CLEARLY know the way, but I literally didn't even see the exit as we passed) then trying to get turned around to go back, I got lost. Had to call and say "uh. I have NO clue where I am."
Oh- and in all of this, my tank is on Empty, but because we left late, I didn't have time to stop and fill up. I'm having my first real period in 6 months and have cramps, AND walked out of the house w/o a tampon..
I felt like God was telling me to JUST STAY HOME.
I really only went because I know they compile the information and use it to improve their treatments for the babies. Which leads me to-
umbpct- thank you for the words. I agree completely. Just for my own amusement, I just took one of Robbie's favorite things (his Z vibe) and put it in his cookie jar and put the lid on. He immediately ripped the lid off, jerked the jar over and got the z vibe out. I felt vindicated.
The entire therapy assessment (PT & OT together) took about a half hour. And honestly I've watched enough evals at home to know it was just NOT that thorough. I really do have more faith in the home therapists than today's. He was evaluated for his IFSP just about a month ago and they put his cognitive stuff at 11 1/2 months, and he's made quite a few advancements since then (clapping, waving, saying Uh-oh with meaning, for example)
Anyway, I don't know if I'll go to the next one. It's already set up for May. I'll decide closer to time, but it does annoy me to have to take a whole day off of work to go feel like crap. If it benefitted Robbie- sure. But it doesn't.
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I'm so sorry. It's amazing how much certain words and phrases can sting and stick with you. It also hurts so much when you get those reminders that the "preemie thing" will never really be behind you. But you have such a good attitude and I think it sounds like Robbie is making great progress and doing well.
One thing that's interesting to me is that we have had only one evaluation where they actually put months on Jake's abilities. They pretty much just tell us that he's "doing well" or "work on this" but we have only once gotten a "ranking" that he is at X months for Y skill. I wonder if they are just not telling us? or if it's just different styles of doing the evals?
Probably depends who is doing the evaluation. We get them from EI because they have to calculate his percentage of delay.
Our PT, for example, calculates three areas (I'm at work, so I don't have them in front of me) Off the top of my head, he was 7 months, 11 months, 13 months in each of them. Then those average together to be 10.3 months. At the time, he was 12 months adjusted. So he was 85% of where he needed to be, or 15% delayed. (really, it was 17% delayed, but like I said, I'm trying to remember off the top of my head.)
I know the NICU yesterday was using some sort of scale (Bradley scale, maybe? I can't remember for sure.) which comes out that way, too.
Even our pediatrician used to ask a few questions and sort of guess where he was falling.
I don't know if that's good or bad. Sometimes I think I'd rather not know.
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Okay, well I think you know exactly what I'm going to say. Those statistics, those "we would expect to see..." comments can all suck my a$$. We were having the same diagnosis at the same age and even though my guys were gestationaly older than Robbie we were doing worse than he is now. And with the exception of eating by mouth my guys are doing so well that in the next two months they will be discharged from their PT completely!! And as for their cognitive skills we still have a ways to go, but they are definitely doing it on their own curve. And all this stuff just happens all of the sudden over the course of two months. So pretty much Robbie is doing his own thing and I think it's great how wonderfully he's progressing. Yeah, the docs can suck it for all I care, damn bastards. (I need a drink. Pass me the wine bottle please.)
HUGS!