https://boards.hellobee.com/ Pregnancy, Baby and Parenting blog, by Hellobee en Fri, 17 Apr 2026 10:48:43 +0000 https://boards.hellobee.com/topic/confused-by-advice-at-nicu-follow-up-looking-for-advice-or-support#post-2832457 Fri, 06 Jul 2018 10:00:18 +0000 Mama Bird 2832457@https://boards.hellobee.com/ <p>@yellowbeach: great update! So glad she's doing well! </p> https://boards.hellobee.com/topic/confused-by-advice-at-nicu-follow-up-looking-for-advice-or-support#post-2832348 Thu, 05 Jul 2018 11:02:32 +0000 erinbaderin 2832348@https://boards.hellobee.com/ <p>@yellowbeach: Yay! </p> https://boards.hellobee.com/topic/confused-by-advice-at-nicu-follow-up-looking-for-advice-or-support#post-2832346 Thu, 05 Jul 2018 10:54:38 +0000 yellowbeach 2832346@https://boards.hellobee.com/ <p>Just an update - we ended up doing Speech weekly for about 6 weeks. On the first assessment the therapist said she didn't think she needed it, but since it was recommended it would be paid for and wouldn't hurt. We've now dropped down to once a month for speech, and she passed her hearing testing with flying colors! :) </p> https://boards.hellobee.com/topic/confused-by-advice-at-nicu-follow-up-looking-for-advice-or-support#post-2819946 Wed, 02 May 2018 17:31:41 +0000 tlynne 2819946@https://boards.hellobee.com/ <p>Ok, so if I were in your shoes, I would call the speech and OT for an evaluation . They will ask you what she's doing at home, observe her and give you a more focused opinion. I would also check with professionals who see her more often and trust your gut. DS1 had a feeding and speech delay (we found out later this was due to SPD) ...we were referred for speech and I chose wait a few months to see if he started catching up (he did). On the flip side, DS2 has had PT, OT, speech, feeding, aquatic, and play-based integrative therapy...and if there were any other therapies I could get him in that would help him, I would. For babies who are seriously behind, early, therapy can make a HUGE difference. That said, it doesn't sound like she is behind...20 words or signs at 18 months is a common benchmark for speech. </p> https://boards.hellobee.com/topic/confused-by-advice-at-nicu-follow-up-looking-for-advice-or-support#post-2819910 Wed, 02 May 2018 14:19:10 +0000 josina 2819910@https://boards.hellobee.com/ <p>Can't comment on the PT, but my dd is 14 months old and has less words than that, and I think a lot of the babies from our February 2017 group are the same; to me it sounds like her speech is amazing and ahead of her age! </p> https://boards.hellobee.com/topic/confused-by-advice-at-nicu-follow-up-looking-for-advice-or-support#post-2819906 Wed, 02 May 2018 14:09:01 +0000 JennyLayneAZ 2819906@https://boards.hellobee.com/ <p>Um, dude. My daughter just turned 2 and she only says mama, dada, hi and yeah. She's started saying "um" meaning "up" lately. That's it. 5-ish words. She's 2. Our ped said to give her a few more months (3-6 basically at my discretion, if she's not saying anything new at all in 3 months come back in, but if she's making progress then she should have at least 20 words in 6 months from now, if not, come back). So, no advice but I totally wouldn't be worried about her speech or hearing right now base off the information you provided... </p> https://boards.hellobee.com/topic/confused-by-advice-at-nicu-follow-up-looking-for-advice-or-support#post-2819864 Wed, 02 May 2018 12:25:23 +0000 psw27 2819864@https://boards.hellobee.com/ <p>I am shocked they would say she has any sort of speech delay. My son (also an April baby) has maybe 4-5 words - ma, da, hi, all done and clap - and I use the word "words" loosely since I consider them almost more in line with "sounds" at this point. Our pediatrician was not concerned. Are they forgetting to adjust her back to her due date? She should get 8 more weeks of catch up time for the first 2 years for any milestones. Long story short - I would try not to worry and seek another opinion. </p> <p>And I totally get you on not wanting to have a medical challenge define your child's every waking moment and identity. We struggle with this with our older son. Hang in there! </p> https://boards.hellobee.com/topic/confused-by-advice-at-nicu-follow-up-looking-for-advice-or-support#post-2819503 Mon, 30 Apr 2018 19:41:10 +0000 yellowbeach 2819503@https://boards.hellobee.com/ <p>Thanks for all the great input everyone. I contacted my EI coordinator who is going to connect us with a SLP that can come to the house or to the daycare like our PT does. I'm going to ask him/her flat out at the first visit to assess if they think this is necessary. Obviously more therapy isn't harmful (except maybe to my wallet), but I don't want my LO to feel like a science experiment who is always being pulled aside for special treatments and missing out on the things the NT kids are doing. At work I see tons of adults who were medically complex kids and it often defines their identity. Trying to minimize that where possible. </p> https://boards.hellobee.com/topic/confused-by-advice-at-nicu-follow-up-looking-for-advice-or-support#post-2819501 Mon, 30 Apr 2018 19:26:10 +0000 Mrs. Champagne 2819501@https://boards.hellobee.com/ <p>She’s so cute!</p> <p>Sorry you had a frustrating appointment. Just wanted to chime in regarding speech.. my my daughters 18 month appointment they asked if she had 5 words! It seems like your daughter has quite a lot (I think more then my dd at that age for sure). </p> https://boards.hellobee.com/topic/confused-by-advice-at-nicu-follow-up-looking-for-advice-or-support#post-2819497 Mon, 30 Apr 2018 18:35:18 +0000 sillymilly 2819497@https://boards.hellobee.com/ <p>I’m sorry, that sounds like a frustrating appointment. I have a 16 month old ex 32 weeker, and to me it sounds like your LO is doing great! At my dd’s 15 month ped appointment, her only words were mama, dada, no, and turtle, and her ped had absolutely no concern about her speech. Also my dd never speaks or smiles at any dr’s appt, so I don’t think it’s fair to base their assessment only on behavior during an appointment w/o taking into account your input.</p> <p>I personally would weigh more heavily the opinion of your lo’s current therapists, ped, and teachers. It could be that this NICU assessment had more aggressive recommends because they see much more delayed children so tend to be more aggressive in their approach in general. They also don’t know your family dynamic, so perhaps they assume no one does the PT exercises at home and your lo only works on skills during therapy (which would be pretty obvious to your therapist). Try not to be discouraged from this one appointment! </p> https://boards.hellobee.com/topic/confused-by-advice-at-nicu-follow-up-looking-for-advice-or-support#post-2819493 Mon, 30 Apr 2018 18:15:29 +0000 Mrs. Tiger 2819493@https://boards.hellobee.com/ <p>I would trust the opinions of those who see her more frequently a lot more. Perhaps you can chat with the PT and see if they agree and/or just decide not to do the extra sessions. Sometimes we feel like giving 110% means doing every suggested appointment or activity, but sometimes the best way to make sure she can grow and thrive is by not forcing them through unnecessary therapies! When D was 9months ish his weekly PT recommended we also do weekly OT for feeding. We tried it for a session, therapist seemed very unhelpful, we were already making big strides using the early intervention OT, so I just cancelled them. </p> <p>Hang in there mama, I know its hard! </p> https://boards.hellobee.com/topic/confused-by-advice-at-nicu-follow-up-looking-for-advice-or-support#post-2819491 Mon, 30 Apr 2018 18:02:21 +0000 mrsmacSLP 2819491@https://boards.hellobee.com/ <p>As a SLP and a parent of a 12 month old (we were in the same birth group!) that went through early intervention for PT as well, my guess is she wouldn’t even qualify for early intervention speech! </p> <p>W didn’t qualify at 12 months for either service but particularly not for speech and he has 4 words! Mama, Dada, Rolo (dog) and Moo (milk)! </p> https://boards.hellobee.com/topic/confused-by-advice-at-nicu-follow-up-looking-for-advice-or-support#post-2819484 Mon, 30 Apr 2018 17:37:36 +0000 muffinsmuffins 2819484@https://boards.hellobee.com/ <p>That sounds so frustrating. I can only comment on the speech and hearing stuff but one thing that our SLP has done a lot is a take home check list of sounds and words and phrases as they know they don’t perform well in the clinic when that young. I want to say it’s a MacArthur bates inventory? You can find them online and maybe check off some stuff before your next appt so they can see more. As for the hearing stuff, I would agree the conductive stuff can be present without other symptoms. My son has had 1 ear infection but does have a motor speech disorder and 4 abnormal hearing tests. They now thing he has mild conductive loss. He had colds a bunch during his tests so they brushed it off but he’s now had two abnormal tests with no cold symptoms. His SLP says in a quiet focused environment it might not show up but in daycare or school where it’s noisy, it can hinder their language development. All that to say is I would keep it on the back burner and not rule it out completely. I know it’s super annoying to have to add a million appointments and drag your kid all over. </p> https://boards.hellobee.com/topic/confused-by-advice-at-nicu-follow-up-looking-for-advice-or-support#post-2819476 Mon, 30 Apr 2018 16:56:55 +0000 littleblessings 2819476@https://boards.hellobee.com/ <p>Increasing PT to get both sides working the same might be a good idea. From the sounds of it your daughter says more than mine. Mine says mama, dada, Nana and that’s it. They said she’s normal. If your ped, teachers, you and the father have no other concerns than motor control than I would dismiss their opinions for the time being and not stress yourself. No child “performs” their best in front of strangers. They can’t expect a toddler to say everything they want her to because she doesn’t know them. </p> https://boards.hellobee.com/topic/confused-by-advice-at-nicu-follow-up-looking-for-advice-or-support#post-2819475 Mon, 30 Apr 2018 16:49:42 +0000 Mama Bird 2819475@https://boards.hellobee.com/ <p>Aww, what a cutie! </p> <p>That sounds like a really frustrating appointment. Regarding the PT, it probably can't hurt, but do you have to travel to the appointments, or are they at your home/in day care?</p> <p>The speech delay thing is just puzzling. That really doesn't sound like a speech delay. Sounds like she's doing great. If they were evaluating her during the appointment, it's possible she was feeling shy or tired and didn't want to cooperate. I'd put a lot more weight on what you're seeing at home and in day care.</p> <p>The hearing thing may well be due to all the colds this winter. FWIW there may be some mild conductive problems without obvious symptoms. My son had a lot of ear infections between 1 and 3, and he often measured as having eardrum problems on the test they run in the pediatrician's office... but at home we never saw a difference, if anyone whispered about chocolate he'd come running from the other room. I don't think it affected his speech, but we did have to address this eventually because he was on antibiotics just about every month. It turned out he had an under-treated adenoid infection the whole time. </p> https://boards.hellobee.com/topic/confused-by-advice-at-nicu-follow-up-looking-for-advice-or-support#post-2819471 Mon, 30 Apr 2018 16:37:03 +0000 Chuckles 2819471@https://boards.hellobee.com/ <p>That really sucks. It sounds like it makes sense to increase PT, but their explanations about speech are confusing. And also, speech or OT? That makes no sense.<br /> Did they have specific info on why they said there was a receptive speech delay? (like not following directions, etc) Otherwise it sounds like no one else has concerns. Plus kids never show all their skills on command in a new setting, so it's not surprising that she didn't use all her words. AND... kids at that age sometimes use words once or twice and then you don't hear them again for awhile anyways. I would definitely ask for more specific details about the speech delay before pursuing more therapy. I know how exhausting it can be to juggle multiple EI appointments each week. Hope you get more info soon! </p> https://boards.hellobee.com/topic/confused-by-advice-at-nicu-follow-up-looking-for-advice-or-support#post-2819465 Mon, 30 Apr 2018 16:08:19 +0000 yellowbeach 2819465@https://boards.hellobee.com/ <p>Ok, feeling overwhelmed and just need to vent. Took our 14 mo ex 32 wker with hydrocephalus to her 12 month NICU follow-up today. She had some stunting in the development of her corpus callosum 2/2 the hydrocephalus, but otherwise structurally brain looks ok. First off, I wish someone would have told me it was a 4 hour endeavor - we missed lunch and nap time... both of us were hangry! That aside...</p> <p>We've know for months now she has some motor asymmetry and delays (only pulls up with her right side, increased tone in her BLEs) and have been working with PT biweekly for 3 months now. Everyone (me, dad, daycare teachers and her PT) all seemed to think she was making strides if not almost caught up. Today the NICU recommended more intensive PT, at least weekly. My reaction: exhaustion.</p> <p>And brand new today is an apparent receptive speech delay. This one really caught me off guard. She had maybe 10-15 words at home, including kitty cat, cup, ball, mama, dada, dog, milk, no, hi, bye... probably a few more. She only said "hi" and "uck" (instead of duck) for them and otherwise just babbled. Her teachers at daycare last week told me they felt she was ahead of the other kids on the room (ranging 12-18mo) in her speech as she used words and sign language to ask for things rather than just grunting for attention. But as of today's appointment, we are "way below" expected levels and have been recommended for weekly speech or OT. They couldn't even really tell me if they were recommending Speech vs OT. :/</p> <p>I have a theory on this whole thing, but perhaps I'm being short sighted. I think they are anchoring to her having hearing issues. Another long story, but when it came time for her NICU hearing testing follow-up, they were full and had to schedule her 2 months after the ideal age. At that point, she was babbling and phonating constantly, so they couldn't test her "soft sounds." At 12 months, we were getting sedation for a surveillance MRI anyway, so we decided to do the hearing testing while she was under. The ENT wanted us to consent to putting bilateral eustacian tubes in if there were any effusions so they could complete the test. Neither my husband or I would consent to a surgical procedure to complete a screening test for something we had no specific concerns about. Plus, this was February, and we had all had colds all winter. So, her hearing testing remains incomplete and she's labeled as having some kind of conduction loss, even though we have no concerns and she's never completed testing. We see ENT again in June when hopefully flu season will finally be over.</p> <p>So, my sense if that they might be anchoring to this "hearing loss" as a cause for receptive speech difficulty. Obviously I can't say for sure that she doesn't have any hearing loss since we haven't completed all the tests, but I've never had any concerns. I just don't know what to do with this "expert recommendation" by a team that saw her once in 6 months for 2-3 hours total, vs myself, her dad, her teachers and her Pediatrician. I contacted our EI coordinator to set up weekly speech as well as bump the PT to weekly, but I'm really frustrated and not sure what to do with all this new information. </p> [attach=7491/18/p80o1v.450x600.30728314_10101486482124777_2196707369262487397_n.jpg]