Preemie follow-up clinic

[jandksmommy]

So... my LO was a 1lb 6oz 23 weeker so was seriously under-developed. She has done incredibly well, amazingly well! Of course, she has chronic lung disease and still needs oxygen support occasionally and her retinas did not develop blood vessels in one area so she will have a blind spot in both eyes. Overall, I couldn't be happier with how well she is doing.

Yesterday, we had her preemie follow-up clinic where she was assessed by a few different medical disciplines. The physical therapist who assessed her acted very concerned at her development. She is almost 7 months adjusted age (almost 11 months actual age). The PT went on and on about how she should be sitting independently (she does sit on her own for about a minute before she over reaches and falls over), she doesn't lift her head high enough when she is on her tummy, and while on her tummy, she isn't able to balance on one arm while reaching with the other one.

She rolls to her sides all the time but rarely will roll to her tummy (she hates being on her tummy as it is harder for her to breath). She reaches up and to the sides to grab at things, she grabs toys and passes them from one hand to the other and brings them to her mouth, she plays with her feet while laying on her back, she jumps like crazy in her jolly jumper, can play for an hour in her exersaucer before wanting out, and when I stand her up she has no problem standing for a few minutes while holding my fingers for balance. Yet, she was assessed in the 5th percentile for gross motor skills. I thought she was fairly average in her development... not that far behind!

Sorry... just needed to vent some frustration. She is currently laying on the floor, holding her feet, and rolling side to side while laughing... just like her siblings did at 6 1/2 months!

 

[AP]

I am not sure why they "expect" things with preemies, as they are all so different. Alex didnt do any of that at that age but when she hit 18m corrected she was up on her feet from nowhere! She hasnt needed masses of physiotherapy, just monitoring with her IVH.

 

[Srrme]

What?! It sounds like she's doing wonderfully for her age!

 

[jandksmommy]

The stupid thing is that all the professionals who assessed her yesterday will sit down and write a report with recommendations for me to follow. With how the PT was talking, I think she is going to write in there that Reese needs to start seeing a PT more often then the once a month I already have her going to one. I do the exercises with her that the our PT has taught me everyday.

She already has 2-3 other appointments every month, her siblings are 20 month old twins, and I have to return to work next month... I just don't have time for unnecessary PT visits. I am stretched to my limits. If I thought for even a second that she was as delayed as this lady said, I would do whatever I had to do to get her the help she needed... I just don't see a huge delay.

 

[Srrme]

You don't see one because there ISN'T one! My 28.6 weeker didn't sit unsupported completely until almost 12 months old, and no one ever questioned that he was developing properly. He is now almost 3 years old and you wouldn't even know he was premature -- he literally has ZERO delays and is above average in almost everything.

All babies develop differently, especially premature babies, and I am very surprised they're not giving her more slack (if any!). She's still so young! I've seen full term babies doing less of the things she's doing at the same age.

If they request you go to more PT sessions, do you HAVE to or can you decline?

 

[jandksmommy]

I guess they can't force me to take her. Hopefully they just make the recommendations and just leave it to me to set up the visits. She has her monthly appointment with her PT next week, I am going to ask her to do her own assessment. She has been working with Reese since 5 months old (1 month adjusted) as Reese had torticollis and we needed to get the muscles in her neck stretched back out and working properly. I trust her assessment above a stranger who saw her for 1/2 hour.

And thank you so much... I guess I just needed someone to tell me that this assessment was craziness, that she is fine for her adjusted age.

 

[jandksmommy]

Congrats on your pregnancy Srrme!!! I just noticed your ticker tape for your new LO. My Reese was born at exactly the gestation you are now! Your little one is going stay in the oven much longer though .

 

[sunnylove]

Was this the first time these particular specialists assessed your daughter? My son is still in NICU but when the developmental pediatric doctor did his very first assessment of him last week, he made a couple notes that he "didn't like." That my son arched his back too much (only when he's uncomfortable?) and that his tone seemed "loose." When I talked to the occupational therapist the next day, who has been with my son from the very beginning, and told her what the doctor said, she said it would be very hard for him to make an accurate assessment based on one physical, especially since my son just woke up. She said she has never noticed any of the things the doctor mentioned.

So, it might be a good idea to get a second opinion? If you don't feel like your child is behind, he's probably not!! If something is wrong, you will know it. Some doctors are way too cautious with preemies to make sure they get some physical therapy in there early, just in case.

 

[Springflower]

This makes me so mad!!! I have learnt to take what "experts" say with a pinch of salt.

Honestly your lo is doing amazing! I have a 29w who was very very poorly and she didn't sit for ages. I think it was 11ms. She was having pt to help her, she's now crawling and pulling herself up on furniture. We went to pt once a week and it was a misery. She screamed and cried the whole time. Home life was horrid, we realised we were pushing her too hard and told the physio we had had enough and now go every 3ws and don't try to push her, she's much happier now and making good progress.

What im trying to say is they all do it in their own time. Your 23w is a miracle, the experts need to give her a break!

x

 

[jandksmommy]

Yes Sunnylove, this was the first time any of these professionals met her. All preemies born in the hospital she was born at are scheduled for this clinic on their discharge from the NICU, it's scheduled for around 6 months adjusted age. It was a 3 hour appointment where we sat in a room and had a series of different professional come in and assess her on their respective areas of expertise. She saw a nurse first, then a doctor, then a dietician, then a social worker came in to assess my stress levels and coping skills (to see if I needed extra help), and the last assessment of the day was the PT assessment. Apparently, they use these assessment to make sure the babies are getting all the help they need and also to gather data on preemie development in general. All of this after 2.5 hours in the car to get there.

I have calmed down about it . I guess I needed time to put it in perspective. My first instinct as her mommy was to defend her. Reading all of your comments has made me feel much better. Thank you all so much.

 

[familygirl30]

My boy was born 5 weeks 2 days early and it upset me at the follow up appointment about him not smiling at the time!think he was 5/6 weeks at time! He started smiling when he was 9 weeks old,they just know how to worry us,Im not looking forward to next appointment in oct

 

[jandksmommy]

Took her to the PT who has been seeing her since her NICU discharge, told her about the assessment, and she thought it was so wrong. She re-did the assessment, just for my piece of mind, and Reese assessed about the 25% percentile which is completely in the 'normal' range. I am relieved but madder than ever at the PT who did her follow-up assessment. Oh well, years from now when Reese is running around playing with her brother and sister, it just won't matter at all.