Baby w/ many issues, still not making eye contact or smiling...

[lizzylou]

My daughter is 14 weeks old, 10 weeks adjusted. She was born with meconium aspiration and spent 4 weeks in the NICU. She left the NICU with an NG tube and an undiagnosed reason for poor oral feeding. We were home just a few days when she began exhibiting signs of extreme pain... turns out she had GI trouble and it took us 4 or 5 weeks to fix the situation. So it's fair to say that up until 9 weeks of age, her body was taxed with healing her lungs and with pain from her GI issues.

Somewhere in the midst of all that she was diagnosed with hypotonia. We saw a neurologist who wanted to do genetic testing. In addition to the hypotonia, she has several soft markers, all of which are fairly benign on their own (sacral dimple, preauricular cysts, 2mm VSD, high palate. Also had a single umbilical artery in pregnancy). So to make a long story short, she's had a complicated little life and many health issues already. In the past month we've figured out her GI issues and she's now a content baby most of the time - a complete 180 from where we were previously.

So here's my current concern: she still doesn't make eye contact. She is very curious about her surroundings and looks around a new place or when we're outside. She also likes lights. She likes to look at the TV. But she won't engage in eye contact - I'm lucky if I get a second or two. She doesn't really social smile yet either - she just started smiling last week and it's at random happy times, not necessarily in response to anything we do.

A little more info: My sister recently visited and she commented twice that in the past month Juliana's eyes seem much more focused. I haven't noticed a difference, but truthfully I've been paying more attention to her GI issues.

In the NICU she had an ultrasound and a CT scan of her head, both of which were normal. We don't have the results of the genetic test yet.

Any thoughts? I keep telling her that if she would just look at me and smile then I could worry a whole lot less.

[heatherdeg]

Well, although her adjusted age is technically 10 weeks, you can pretty well scrap that because kids with serious issues are preoccupied with those issues and development can be put on pause in the interim.  We saw a LOT of this when we fostered newborns (and they ALL had some significant challenge).  The fact that she's smiling at all and focusing a bit more is encouraging because really, 10 weeks is on the early side of normal for a baby without challenges.

Also, try to relax.  Sometimes, our anxiety doesn't make us feel warm and fuzzy to the babies so they're not really connecting the same as they would.

Are you going to pursue the genetic testing?  Have you spoken to a physical therapist--preferably one that works in/with the NICU that would understand hypotonia in infants facing challenges like yours?

[lizzylou]

Thanks. We did do the blood work for the genetic testing. We should have results in a few weeks.

We're still waiting for Early Intervention to give us a call.

[heatherdeg]

Keep us posted.  Try to focus on what you know right now: which is not much.  Hugs to you.

[JFTB1177]

About the eye contact: my DS1 had terrible eye contact as a baby and toddler, we worried it was autism but now at 5 he most definitely does NOT have autism and the whole eye contact thing is now perfect! On the flip side, our DS2, who had amazing eye contact from very early on, may be on the Spectrum. DS2's eye contact has suddenly become less and less at (now) 2-years-old.

HTH!

[lizzylou]

Thanks - stories like that are comforting. She's not really tracking either, so I don't necessarily think it's a sign of autism - it seems like if that were the issue, she would still be tracking. (?)

We saw the eye doctor and her eyes are healthy. He thought that he could get her to track for a second. He said that she is not yet considered delayed for her adjusted age, but that she does need to get with the program soon.

I've been doing my own "visual play therapy" where I try to get her to look at things. She does a little bit.

[hannahgrace]

Is her adjusted age based upon her EDD or because of the 4 week NICU stay? If its based upon EDD only, you need to subtract 4 more weeks from her NICU stay. Health issues will cause delays too. I think what you are doing - visual play therapy is a good start. Try bright, shiny colors. Books with single big pictures. Shiny pinwheels. Mirrors. Those are all good for vision. My boys have Cortical Vision impairment (their eyes structurally are fine, but its a processing issue) so if you need more ideas, let me know.

[lizzylou]

As of right now her actual age is 15 weeks. She was 4 weeks early, spent 4 weeks in the NICU, AND had an additional 4-5 weeks at home where she was still in a LOT of pain. So it's hard to say what her adjusted age should be at this point!

I looked up CVI. May I ask how your boys were diagnosed? She's had an ultrasound and a CT scan on her head and those were normal. No MRI - yet. I wouldn't be surprised if we're headed there though. Are there are any other visual processing disorders that wouldn't show up on a CT scan?

[lizzylou]

We've seen some improvement in eye contact. She'll look at me briefly though she's still not smiling at me. She will smile at things like a light, though. 

She's also started tracking a little more.

We're almost in with EI, I think. We meet the therapists next week.

Her blood work came back normal. I just posted another thread about that.

[LynnS6]

The average age for social smiles is 8- 12 weeks. If she's 16 weeks now, that means she's just barely 12 weeks adjusted, right? And if you subtract 4 more weeks for her NICU stay as someone suggested, you'll see that she's still well within the range of average for smiling. Smiles often start first with things, then people.

Glad to hear things are moving forward with EI - hopefully they'll be able to get her help if she needs it, and reassure you if she doesn't!

[lizzylou]

Thank you, you all have been very encouraging. :)

[TuiNZ]

I don't think you should worry about eye contact. When my DS was a newborn I remember discussing this with a few other mums. We were all worried our babies were autistic because they were more interested in looking at their surroundings than at us... and in all the books we'd read how newborns love looking at their mothers. So naturally we were all worried. Well... a month or two down the track (can't remember now) my DS started having great eye contact. Give her time and let her explore the surroundings for now.

[lizzylou]

Thank you, that's very encouraging - and I'll take all the encouragement I can get! :) I might have mentioned this earlier, but my son was early on many milestones. He was making eye contact very early on. It's tough to have a second baby who is so very different!

[Marissamom]

Originally Posted by lizzylou 

We've seen some improvement in eye contact. She'll look at me briefly though she's still not smiling at me. She will smile at things like a light, though. 

She's also started tracking a little more.

We're almost in with EI, I think. We meet the therapists next week.

Her blood work came back normal. I just posted another thread about that.

she sounds like she's doing pretty well for her adjusted age. I'm sure now that all her health issues are sorted out that she'll catch up in no time.

[hannahgrace]

My twins CVI was diagnosed by their hearing/vision therapist. There is a scale of severity and about a year ago they were a 2, and now they are a 7 (much much better) so with therapy and time it has improved a lot!  I hope you continue to see positive improvement!