33 Week Preemie - Long-Term Outlook?

patchen30

My DS was born at the end of April at 33w3d.  He never needed breathing assistance, spent 5 weeks in the NICU learning to eat and growing, and was otherwise healthy. 

He's now almost 6 months old and is (not surprisingly) not meeting his 6 month milestones (can't sit at all w/o support, hasn't rolled over, not transferring objects btwn hands, low muscle tone).  He's also below the 5th percentile in height and weight (although my ODS, who was full-term, is also below the 5th percentile - DH and I are both very small).  Pedi said his development is consistent w/ his prematurity and suggested I do EI so I am. 

I'm now of course worrying about him - mostly, what his long-term outlook for life is, basically.  I asked the pedi this question and she was very vague.  I worry that he'll have a harder time in life and will be behind his peers...forever.  Does anyone have any comforting words or information?

brachysira

People love EI and it's great to get connected.  There is no way to tell what will happen--even if your baby is full term there are hurdles somewhere.  I am currently in love with micropreemie blogs.  I skip the NICU and read about when they are 3, 4, and older.  Some are dealing with serious predictable problems such as ROP blildness, but others have sort of weird problems like more tantrums.  Others are completely thriving.  A few still go to appointments about every day, but even these moms seem to be able to handle it and celebrate every step.  I'm pretty sure my 32 weeker is going to be fine, but these blogs give me hope that if I have another preemie that is not doing as well, we can do it.  An absence of a scary NICU is one thing on your LO's side.  I would expect the best and prepare for the worst by getting as much help as you can now.

jenniferraborn

I don't mean to be the ignorant one but what is EI? I came to the preemie board also looking for encouragement. I have an 8.5 month old DD who was born at 34 weeks and is failing to meet developmental milestones and I worry excessively if she is always going to struggle. She is a very happy baby but is not even close to sitting up, not pushing up on her arms or crawling on her belly, is just now rolling over consistently, no constant sounds etc. She was 4lbs at birth and only spent 2 weeks in the NICU with very few medical complications mostly related to size. It is really hard not to compare her to other babies who are younger but are so far ahead of her :-(.  

jenniferraborn

Thanks @BostonKisses2I am in Georgia and I think it is called Babies Can't Wait here. We have had foster children that have been evaluated but I am slow and did not think about Sarah (DD) needing it too. We have her 9 mth appointment in 2 weeks. I will talk to the pedi and see if they think we should request an evaluation. I'm glad the services are there and I want her to get everything she needs but I am sad to need it if that makes sense. We are already going to PT for torticollis/plagiocephaly so they are working with her a little one some of the physical milestones.

alphaphi98

Don't worry! Your LO is doing fine. My DD was born at 32 weeks last year and spent 3 wks in the NICU. Pretty much the same boat as you. She just turned 1 years old last month. She has always been in the 5% range for weight. I don't let it bother me since she's perfectly healthy despite her small size. She just has a little bit a of catching up to do. They say most preemies will catch up by 2 years old. There are no signifiant problems and late-term preemies grow up just fine. 

Since my DD was 2 months early, I'd say she's consistent with being 2 months behind for some milestones. She's not delayed on everything, just some. It's not a big deal. At 6 months old, she wasn't rolling over yet either, but was starting to sit up on her own. She started rolling over a lot at 8 months old. She started pulling herself up with her arms to stand at 9 months old. She started crawling around 10 months. From 11-13 months, she's cruising around the house. She holds on to furniture & walls and walks with assistance. She's starting to balance & stand up on her own for a few seconds now. The range for walking is big from 12-18 months. It will be fine!

Give your LO some time and he'll catch up just fine. No need to rush him on milestones. Like I said before, late-term preemies will grow up just fine. Don't worry! Be happy!

Mrs. Alice

I agree with everyone else.  6 months is way too young to really predict long term outcomes.  Statistically, almost all babies born around your son's gestational age, grow up and do the same as their full term peers. Plus it sounds like he didn't have any medical issues that might affect him in the long term either.  However I would definitely take into account his adjusted age for all milestones, growth and development at this age.  I think most moms worry over their babies development, and it's just even more heightened when you have a preemie. What you are feeling is so normal.

I kind of went through the whole first year on pins and needles and felt relief each time they met milestones.  They followed more closely to their adjusted age on things.  We thought they were almost caught up developmentally around 15 mo and then they never started talking or communicating with us.  Eventually they started EI which has a been a great help.  My twins are only 2 but I guess I've come to some acceptance that they might have more struggles than the average kid when it comes to learning.  However they are amazing and happy boys so we will just cross that bridge when/if it comes.

patchen30

Thanks ladies.  This quote from Mrs. Alice is kind of the information I was looking for: Statistically, almost all babies born around your son's gestational age, grow up and do the same as their full term peers.

Do you know where I can find specific stats about this?  Everything I've read online is so doomsday about preemies having developmental delays and disabilities.  The one statistic I was able to find was that 15% of preemies born 31-34 weeks have mild developmental disabilities and 5-8% more severe.  However, I believe something like 13% of all children have developmental disabilities (ADHD, etc).  It seems like there's not a lot of info like this out there!

Mrs. Alice

That's based on info we were given by our Dr. when I was pregnant.  I was told at 32 weeks risks drop a lot and at 34 weeks the long term outcomes are statistically about the same as a full term baby.  I also remember reading similar info in my Dr. Sears premature baby book. 

MrsRKJ

Every baby is different, and I think having EI involved is fantastic, and will help both you and your LO in the long run.  Your LO may be behind by a couple months, but in the long run will catch up as he gets older.  I liken it to his peers may learn how to ride their bike in April, but DS may not learn until July.  But he will learn.  Stay away from the Internet.  It'll make you crazy.  Just focus on your precious little man and it'll all work out in the end.  Stay strong!

(My DS was born at 33w in March)

kck329

I would just add that any statistics need a lot of context. For example, my 27-weeker would qualify as "developmentally delayed" because she had some significant delays in her first 2 years. At 2.5, she is still a little behind in gross motor but no one is worried about it and she is discharged from all therapies. So ... I wouldn't put too much stock in any statistics unless you have a lot of info to back them up.

Instead, make sure you are using adjusted age to track things, especially in the first year. And call EI, they are really helpful and the therapies usually make a big difference.

mmooki

My dd was born at 33w3d. She spent 12 days in the nicu. She didn't sit up until after 6 months. I remember this because she couldn't sit for her 6 month pictures. She didn't crawl until 9 months. She walked at 14.5 months. She's always been low on the charts for weight and head circumference. And in the middle for height.

Some milestones she met when she should, some were a bit behind. She was evaluated at 7 weeks (1week adjusted) by EI and didn't qualify. I fill out questionnaires every few months to see how she is doing. So far, at 19 months, she is doing great.

I remember at her 1 month checkup, she was on the term growth chart. At 1% but she was there. The ped said, "That's amazing, considering she isn't supposed to be here yet!"

patchen30

kck329 said:

I would just add that any statistics need a lot of context. For example, my 27-weeker would qualify as "developmentally delayed" because she had some significant delays in her first 2 years. At 2.5, she is still a little behind in gross motor but no one is worried about it and she is discharged from all therapies. So ... I wouldn't put too much stock in any statistics unless you have a lot of info to back them up.

Instead, make sure you are using adjusted age to track things, especially in the first year. And call EI, they are really helpful and the therapies usually make a big difference.

This is a good point.  When you read "developmentally delayed" in black and white it sounds scary.  But, in context, it can just mean that your baby walked 2 months later than is considered "normal" and that's the end of the story, for example.