Developmental follow up question

PhillyGal34 · March 2013

I have seen a number of posts lately about follow ups with specialists for development. Is this something that your doctors started when your babies were born or something that started later in life? The reason I ask is that no one ever mentioned anything to use about following up with anyone and I'm wondering if they should have. He seems to be doing well and we have our 9 month check up tomorrow so I'll ask about his development then but no one has seemed worried at all so far. I am wondering if this is something that will arise later on when he starts developing other skills.

Thanks! and I am SOOO proud of all your awesome preemies that are graduating. I know I don't know you IRL but I am always so proud whenever anyone takes another step because it is a win for team preemie!!!

Pips09 · March 2013

We were referred to a NICU follow-up clinic upon discharge from the hospital. I honestly don't know if they referred everyone, or if we had to qualify somehow. It's with a developmental neonatologist, and we see them every 4-6 months until the age of two or three. It's awesome that your baby is doing so well! If your pedi isn't worried, and you don't have any concerns, then I wouldn't seek it out.

kmz885 · March 2013

LO was born at 36.5 weeks. However, our pedi was always reminding us of developmental stages she wanted to see in LO and told us that if she hadn't met those stages by the next wellness appointment, she would recommend someone for LO. However, despite LO's earliness, she has met each of her developmental stages as they came up.

PhillyGal34 · March 2013

Thanks guys... DS was born at 31w 5 d and they didn't mention anything to us but I will definitely ask at the pedi tomorrow. I don't think he's having any delays but I'm a FTM so I'm not exactly sure either!!

komurphy · March 2013

Our NICU has great outpatient services. At discharge we were reffered to the hospitals Developmental Clinic that follows preemies and other high risk NICU graduates every 6 months for 2 years. They see a developmental ped and a dev. child psychologist at these appointments. At discharge from the NICU they also got refered to the NICU's outpatient high-risk clinic that followed them through 1 year adjusted (or longer if needed). Here they meet with their neonatologist and a nurse practitioner. They create an individualized plan so they meet weekly for the first few months out of the NICU then bi-weekly. Then monthly for a few months. Then every 2 months until they graduated at 15 months old.

ashk7 · March 2013

Upon discharge we had a NICU follow up visit Pre scheduled for 6 months actual and again at 6 months adjusted. It's standard in our NICU. We have not had any issues with delayed milestones but they will see her again at one year adjusted. She actually only sees the nurse practitioner instead of the neurologist, it's a quick apt but great for reassurance and if anything does come up where we may need intervention we have the drs all set! Like pp said if you and your pedi have no concerns than I wouldn't worry about it! Congrats on LO doing so well!!

Nita14701 · March 2013

Phillygal- not sure exactly where you are located in the city but Children's Hospital of Philadelphia and Abington Memorial Hospital both have NICU follow up clinics- I think some of the people at Abington also work at CHOP. I like our ped but I also like the idea of having professionals who are in the preemie world all the time looking at LO. It can't hurt to try to schedule an appt.

PhillyGal34 · March 2013

Nita14701:
Phillygal- not sure exactly where you are located in the city but Children's Hospital of Philadelphia and Abington Memorial Hospital both have NICU follow up clinics- I think some of the people at Abington also work at CHOP. I like our ped but I also like the idea of having professionals who are in the preemie world all the time looking at LO. It can't hurt to try to schedule an appt.

I actually went to Abington and they didn't say anything to us upon discharge!!!

eMiLee920 · March 2013

Our NICU has great High Risk Follow Up clinic that follows preemies til age 2. They can refer us to EI if needed. But NJ also assigned us a caseworker to check in and notify us about EI and other services the state provides so DS doesn't fall behind. I'm calling them tomorrow to see about the free developmental assessment - the state doesn't take his prematurity into account so he should qualify since he's not at his actual age developmentally (kind of silly, but works in our favor). You ladies had great advice and we might as well take advantage of any help we can get to get DS on track!

pathfindermon · March 2013

We're going for our 9 month well visit tomorrow as well!
My pt directed me to the physiatrist bc I was concerned about my lo's head shape. While I was there he checked all of his development. We go this month for our follow up. If it wasn't for my concerns, we probably wouldn't have gone to one either. I would just ask your pedi tomorrow.

Nita14701 · March 2013

PhillyGal34:
Nita14701:
Phillygal- not sure exactly where you are located in the city but Children's Hospital of Philadelphia and Abington Memorial Hospital both have NICU follow up clinics- I think some of the people at Abington also work at CHOP. I like our ped but I also like the idea of having professionals who are in the preemie world all the time looking at LO. It can't hurt to try to schedule an appt.
I actually went to Abington and they didn't say anything to us upon discharge!!!

You're not alone. That's were I had LO and talking to some of the other moms who were in the NICU around the same time some dr's mentioned it verbally on discharge some didn't, but when mom's went back to re-read the discharge summary they noticed that it was written on it.

PhillyGal34 · March 2013

Nita14701:
PhillyGal34:
Nita14701:
Phillygal- not sure exactly where you are located in the city but Children's Hospital of Philadelphia and Abington Memorial Hospital both have NICU follow up clinics- I think some of the people at Abington also work at CHOP. I like our ped but I also like the idea of having professionals who are in the preemie world all the time looking at LO. It can't hurt to try to schedule an appt.
I actually went to Abington and they didn't say anything to us upon discharge!!!
You're not alone. That's were I had LO and talking to some of the other moms who were in the NICU around the same time some dr's mentioned it verbally on discharge some didn't, but when mom's went back to re-read the discharge summary they noticed that it was written on it.

oops... I should check. I was so overwhelmed. The nurse that did our discharge didn't even tell me he had an eye appt the next day. I got a call from the doctor's office confirming our appointment and I was like what???? I will say that I LOVED the doctors there and most of the nurses but I felt like discharge was a bit of a mess. It was also the 4th of July so I think some of the nurses weren't regulars. I had never seen the one we had before. She was very nice but didn't quite cover everything I guess.

KM2008 · March 2013

We just had our NICU 9 month (adjusted) follow up for our 31w1d twins. Someone mentioned the program in passing when we were being ushered out the door, but then didn't hear a peep until just about a month ago. Based on the results of their evals, we go back when they are 18 months adjusted to see if they are closing the adjusted/actual gap. It's run by the children's hospital adjacent to the hospital where the boys were, so maybe poke around and see what's up?

In our experience, so far, specialists have been terrible at scheduling/letting us know about follow up. It's probably because they are so busy and backlogged. So, yes, definitely ask the pediatrician and I hope that he or she can shed some light on what follow up may be or should be in the works! Good luck!

PhillyGal34 · March 2013

Thanks everyone! There's not really a reason that I'm worried... he seems on track but I tend to worry more than ever just because of all the "what if's" that are out there. I will double check with the pedi tomorrow but if he's not worried I'll just have to trust that since I have no reason to think anything is off!

IUIBaby · March 2013

Unless something comes up, not for us.

rslhmg · March 2013

Our developmental and other specialists were prescheduled for us before we even had a discharge date, I'm not sure if it is required by KY or just the nicu she was in to have the developmental appointments every 3 months until age 2 unless the developmental specialist determined more or less frequent visits are required. Her other specialists were of course required because of her healthcare needs. I'm sure we could opt out of the development appointments altogether, but its a comfort to us to keep an eye on her since her uncle is autistic and that puts her at a slightly higher risk for autism, we aren't concerned about it, but it does make us feel better knowing we are already seeing someone who knows exactly what to look for.

thishappyhouse · March 2013

We weren't referred to a follow up clinic either. I was surprised since we were at a large university hospital with lots of other research going on. We still haven't even heard from anyone regarding some of the follow up testing that was supposed to be done as part of 2 other studies that we agreed to take part in.

DrRx · March 2013

We didn't do any kind of clinic (or were informed of it) through the NICU, but A has been in EI since she was discharged. Her first EI assessment was actually on her due date (2 weeks after we were discharged) and then had an EI visit every month until July or August where we started having EI come every week.

sdtchica13 · March 2013

The hospital where Corri was delivered has a level 3 NICU and wonderful follow up program for all babies born before 32 weeks. We went for developmental follow ups every six months (adjusted) until this last one, which was at age 3 actual, since most preemies are considered caught up by then. It was frustrating at times because I think they judge preemies way more harshly than regular docs do in terms of development, but it was also great to hear that she was doing well!

MrsHunter2Be · March 2013

We have had someone come back and talk to us a couple of times from a program our state has called Early Access. They will assign us a social worker when we leave and will assign therapists to us based off his needs. They will come to our home to meet with us for two years (and beyond if needed). They will also work directly with our pedi and vice versa to make sure everyone is on the same page.

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