Vent...Follow-up NICU Clinic

neko621

We took the twins to their follow-up NICU clinic yesterday.  What a waste of time! It took us an hour and a half to get there.  Then, we waited for 2 hours to even be seen.  The "team of doctors" that was supposed to see the twins ended up being one neonatologist who did nothing different than our pedi when we go in for appointments.  Then we had to wait another 45 minutes while she wrote up a summary report that basically consisted of the things WE told her about the twins.  Her recommendations for us included: "continue synagis shot" and "continue PT" as if we were going to discontinue either, and to "see audiologist" (we told her we already had an appointment).  I'm sorry for the vent, it's just we were really hoping for some answers yesterday (DD isn't babbling or cooing yet, we had an ENT snip her tongue tie this week and don't think he snipped it enough, we're concerned about her hearing---have an appointment with an audiologist in a couple weeks), and we didn't get anything.  They spoke to us as if we were idiots asking us if we "knew why we were there" (they told us we were there because our twins decided to make an early appearance.  Really!?) and if we knew what "adjusted age means".  Are you kidding me?  These sweet babies are my life.  I think I know these things!  Has anyone else had a similar experience?  Can you opt out of these clinic visits?  We don't want to go back, even though they had us schedule another appointment in a few months.    Again, sorry for the vent!

Medtwin

You know.. this is the way I feel about the NICU clinic appt we have in april.. i may just cancel it..my pedi really wants Grace to see them..but they sound like they 'chck her out'..and give recommendations...and honestly we've done everything that our nicu (out of state) had us do.. i dont get the whole 'fu thing"

irishdo

You know I really think it varies from f/u clinic to f/u clinic.  They are all run differently.  Ideally you should see a team...Neo, PT, OT, Speech and at some appointments a pyschologist/developmentalist to do screening tests.  DS went to 2 f/u appointments and my husband had to take him due to scheduling.  at both visits there was only the PT who also has a masters in education so does the screenings as well.  I felt we gained no info from the sessions at all.  I spoke with the PT who runs the program and basically told her such.  I feel like we have a good team in place for DS (24 weeker) and are always reevaluating.  I hate wasting my time.  I told her I would bring him in if they need to collect data on him but I am not going every 3 months.  He has not been back since early last year and probably wont go back.  Its a nice service but probably not 100% necessary if you trust your ped to guide you into services.

jenmikw

I am sorry yours sucked.  Hopefully Owen's is better.  He goes in two weeks. 

In Canada our NICU follow-ups appears to be the equivalent of your EI appointments.  Owen will be seen at 4, 8, 12, 18, and 24 months.  Each appointment will have an OT, PT, Neo-natal doctor, speech therapist, and a nurse.  All of them (except the speech therapist) are people who work in our NICU so we already know them and they know the baby's background. 

JakesBride07

Do we go to the same clinc... we had an appt yesterday too and it was horrible appt was 12:15 we didn't get done until 4:15! In my opinion it was completely rediculous. And I agree they do no more then the pedi does at their check ups.

We go to UMMC in Baltimore and I don't think we'll be going back to the NICU follow up clinic. Several of the other specialist have offices outside that are much better and your not waiting all that time. I am going to discuss it indepth with the Ped next time we see him (later this month) and as long as he is ok with it we're done.

neko621

JakesBride07:

Do we go to the same clinc... we had an appt yesterday too and it was horrible appt was 12:15 we didn't get done until 4:15! In my opinion it was completely rediculous. And I agree they do no more then the pedi does at their check ups.

We go to UMMC in Baltimore and I don't think we'll be going back to the NICU follow up clinic. Several of the other specialist have offices outside that are much better and your not waiting all that time. I am going to discuss it indepth with the Ped next time we see him (later this month) and as long as he is ok with it we're done.

LOL!  We DO go to the same clinic!  We were also at UMMC in Baltimore yesterday! 

JakesBride07

LOL...too funny! Yeah they suck!  What's worse is the twins weren't even born/admitted there (DD was later transferred there though), but all the Neo's at the other NICU "belong" to them. I hate going there for any appt its always a super long wait, and I wish that all the specialists weren't affiliated there. I always try to aim for appts at the satelitte offices for the specialists and have gotten better results that way.

DH went with me yesterday and he couldn't believe how bad it was. Plus they totally made us feel like the babies should be waaay furthur ahead.

They told us that a 7mth old baby should be able to eat with a spoon and feed themselves finger foods with no problem.

neko621

Yeah, same with us.  The twins were born at AAMC, then transferred to Hopkins Bayview after birth (because AAMC's NICU was full), then transferred back to AAMC 40 days or so later once they had room.  It was super annoying yesterday because we live on the eastern shore and we didn't get home until 7 something after sitting in rush hour traffic after we finally got out of there. 

DH was also with me and was livid because of the waiting.  He doesn't have great patience and I had to work hard on getting him to keep his mouth shut while we were there!

JakesBride07

neko621:

Yeah, same with us.  The twins were born at AAMC, then transferred to Hopkins Bayview after birth (because AAMC's NICU was full), then transferred back to AAMC 40 days or so later once they had room.  It was super annoying yesterday because we live on the eastern shore and we didn't get home until 7 something after sitting in rush hour traffic after we finally got out of there. 

DH was also with me and was livid because of the waiting.  He doesn't have great patience and I had to work hard on getting him to keep his mouth shut while we were there!

LOL....yeah my DH doesn't either, however he typically keeps quite, but I thought for sure he was going to say something yesterday.

I was talking with our PT today and she said there are other developmental Peds that can do the same thing the NICU clinic does if we felt we needed it but that we don't have to go there at all.

mrsV719

I don't have much to add... ours was 2 hours late too. We didn't get much other info than what we already knew, BUT they did advocate for us b/c we weren't getting PT b/c our EI team didn't have a preemie PT person (WTH?!?). So they helped us get that. 

 

I am writing, tho, because I am surprised at how young they did that for your LOs. We were 6m adjusted and will go back at 1 year adjusted. What can they tell from a 3m adj baby? IDK... I just think it is too young for a follow-up!  

KatFCo

Can you request a referral to another clinic? My daughter saw the neotatal team every couple of months and while there we saw the neonatologist, dietician, OT and PT and were welcome to bring up any concerns (i.e. if we wanted to see an audiologist we could ask about it). We went to a children's hospital. If you're not going to one, requesting a referral to a children's hospital neonatal clinic might give you a better team. If the clinic themselves won't do it, your pedi might, especially if you explain that you don't believe your questions are being answered and that you are not being treated with respect as parents.

I'm not sure how early your babies were, but mine was 16 weeks early, so the attention might vary based on how early they were.