My daughter was a 27 weeker preemie and spent 10 weeks in the nicu. Came home for a month and went back in for ROP surgery (eyes) for a week. Came out for another month and went back in for observation, sleep stufy, ph probe due to cyanosis and was there for about 4-5 days. Anyways, she was seeing OT but it was hard for me to get to them with 2 other children and all the rest of Emma's doctor appointments. They ended up discharging me saying that she "met most of her milestones and occupational therapy is no longer needed for this child". She was discharged about 3 months ago.
Anyways she is 8 1/2 months, 5 1/2 months adjusted age. She is rolling from front to back an back to front. She started this about a month ago. she still has REALLY bad tongue thrust issues, and gags on foods if we get it past her tongue, so we're putting a spoon on the middle of her tongue, and doing some mouth excercises. she takes a bottle fine but there are some issues with the amount and she will be having a g-tube placed soon for continuous overnight feedings. She also didn't start "tri-podding" until a few weeks ago. Even then she can only tri-pod for literally seconds and then will fall over. Most the time she arches her back when we try to get her to sit. she has good head control. She also still keeps her hands clenched more than 50% of the time. I know this was one of the concerns for the OT she was seeing.
Does all of this seem normal for a 8 1/2 mont (5 1/2 month) adjusted baby? Can you tell me what milestones she SHOULD be meeting by now? Anything I find online is not too accurate and has a huge range and diffferent sites say different things. Any help/reassurance you can offer would be great! Thank you in advance.

Just wondering if you've had a chance to look at this yet. I'm debating how hard to push to get her back into OT but don't want to if she doesn't really need it. Thanks in advance.

Hi Elaina:

Sorry about the confusion with your thread, but we will try this again J
Your big question is does all of this seem normal for a 5 ½ m/o (adjusted age) baby?
Re-phrase that question to say does this all seem normal for a former micro preemie who had a rough start with NG tubes (maybe even ET tubes for mechanical ventilation) down her throat for several weeks, was re-hospitalized for surgery and various illnesses, and has GERD and DGE?

Emma has some obvious oral-aversion most likely from the early negative oral-input she received in the NICU in addition to being fed months earlier than she was supposed to be fed. Babies typically sit up without assistance at 6 months of age on average. However, premature babies often present with increased shoulder retraction and extension of their upper trunks from the way they were positioned (not always in a flexed posture) or from GER that causes them to arch and flail. It sounds like Emma has some increased tone in her upper extremities, as she is clenching her fists. This is going to get in the way of protective responses. In other words, if Emma lost her balance sideways or backwards while tripod sitting, the body’s natural protective response is to extend an arm out with the fingers extended to assist with catching her balance. This is difficult to do if she has increased upper extremity tone and her fingers are flexed (clenched). I would highly recommend a re-evaluation with your OT to assess Emma’s upper extremity tone. Perhaps she can teach you some range of motion (ROM) exercises to assist with decreasing the tone in her upper extremities and trunk. It will be difficult for Emma to tripod if her back is arched.

Now to address the feeding. I assume a g-tube was just placed for the purpose of weight gain because you said she is drinking the bottle fine. A majority of reflux babies have a hyper-sensitive gag. Now factor in Emma’s negative oral input from the NICU. Most pediatricians are waiting until 4-6 months to introduce purees because of food allergies. With preemies, they typically wait until 6 months. Tongue thrust is typically integrated (goes away) at 4 months of age. If Emma is gagging and thrusting, I would take that as a red light. Take a spoon and put it on your tongue. How does that feel? Remember, you do not have a hyper sensitive gag. Think about backing off the spoon and trying different therapeutic feeding utensils until you have a positive oral experience. I just told Leigh that I use fake food toys from the Pet store and dip them in purees. I also use Infadent and Nuk brushes dipped in puree because they are non-threatening. Start in the anterior mouth and begin with some light lingual depression at the anterior first third of the tongue. If you go beyond that, expect to see some gagging, retching, and perhaps a little vomiting. Most importantly, I would do some positive sensory play in food first. Put her in a high chair with a tray table before a bath and put some tasty puree or pudding on the tray. Let Emma put her hands in it and even taste it. It she can’t touch it, it won’t go in her mouth. Let her get messy. Continue with positive oral-alerting exercises that your OT hopefully started you on. If not, write back and I will gladly give you some.

I think you have done a fabulous job with Miss precious Emma. Is she far off her milestones? No. I think a re-evaluation from OT would be a good idea just to see if tone is getting in the way of milestone attainment. The OT may say she looks wonderful and doesn’t need services. Elaina, don’t get fixated on what the books say she should be doing at what age. Remember she is premature and many milestones have ranges in which skills are attained. Keep up the great work Elaina! Happy holidays.

Robynne