Worry. Not Worry. Worry. Not Worry.

Being the parent of a preemie has a different set of rules. Rules that seem to change on a monthly, weekly, daily basis. It causes me to worry than not worry than worry and so forth. You get the picture.

Roo had PT/OT on Thursday. We hadn’t seen her therapist for a few weeks because of Thanksgiving, travel, and a presentation she was giving. I was so excited because during the time we hadn’t had therapy, Roo was making so much progress. She was vertical, on her feet as much as possible and letting us support her to walk around.

Her therapist was also excited but because of those new developments was able to see something that she either didn’t notice before or missed. We knew that Roo has low muscle tone in her core and that was causing the delays in sitting, crawling, etc. But her low muscle tone issues are now being noticed in her legs and feet. And, could be affecting her mouth, which could be why she is delayed with speech.

Next week, we will do her 18 month assessment to see where she is developmentally. I have mommy brain and can’t remember for the life of me what it’s called – maybe one of the other preemie mommies can jump in. She has always tested incredibly high in the 85th percentile for her fine motor skills and in the 5th percentile for gross motor skills. After the assessment is done, the results are shared with us and Roo’s pediatrician, whom we see on January 7.

I know that we will be referred to a speech therapist. I won’t be surprised with that referral. But, I think people are going to start pushing us to see a neuro specialist to look further into her muscle tone and delays. I’m hopeful that this won’t happen but it is something that my parents (doctor dad) is pushing for and I’ve been very hesitant to pursue – for many reasons. First, I’m scared. Second, I hate subjecting my daughter to test after test after test. I feel like every other month she goes to a new specialist for something or other. In October it was the allergist. Third, I’m exhausted emotionally.

Do I want to be sure everything is OK with Roo? Of course, I do. If there is something wrong with her, I want to and currently do everything possible to intervene and help her. I’m just not sure if I can handle if there is something more wrong with my little girl. She’s been through so much and I don’t want to have to put her through more.

A big part of me thinks she will catch up – like she has in the past. She is on her own timeline. She meets all of her milestones – just in her own time. Do I push for more testing or wait and see? I know that early intervention is best but why intervene when she will catch up eventually?

The last three or four weeks, she’s done so well that I want to keep riding on this “normal” wave. Yes, she doesn’t walk or talk like all of her 18 month friends do but she communicates beautifully with us and crawls with such enthusiasm that she sounds like a rhino running through our house.

I just wish that I didn’t have to worry about my daughter’s development (or lack of) anymore. I want to be a normal mommy who worries about what mommies of children who don’t have developmental delays worry about like should I be looking into preschool? Yes, the moms in my mom group are starting to look into preschools because of waiting lists, etc. I haven’t even thought about it and will probably wait until she’s three because she’s so tiny, which is not until Fall 2015.

Moms of preemies, please help me. What do I do? Do I push for more testing and early interventions or wait it out? I’m so confused and scared. I don’t know if I can handle another diagnosis that requires more therapy and doctor’s visits. How do you get through it?

6 thoughts on “Worry. Not Worry. Worry. Not Worry.

  1. I am not a preemie mom, but I am a behavioralist working in the “field” of children with developmental delays. So I’m very familiar with what scenarios could play out, what options are available, what treatments, the sort of people you could work with, etc. I am sure it’s scary, but please get your child screened and rest confident knowing it’s for her own good, even if you feel bad while she goes through this. The most important reason being, if you don’t, she may NOT “catch up eventually”. A child missing milestones at 18 months may be the same child missing milestones at 2, at 3, at 5…remember that, when your little girl does finally get there, the other kids have continued to grow and hit new milestones. And I’m not trying to say that to scare you, because that’s where the early intervention comes in. I wouldn’t be able to put into words the success I have seen from kids with services (and lack thereof in kids where treatment was delayed), kids with delays more extreme with your little girl. But you have to give her that opportunity and give the professionals a chance to do their job and help her succeed. Best of luck to you. Please feel free to ask any questions if you need more help “navigating” this system.

    • Thank you Jamie. I appreciate the insight from a professional. I definitely am going to do the right thing and get her evaluated. I’m just scared of the outcome. But, I know everything will be ok. We will deal with the outcomes as they arrive and give her the best treatments and therapies available!

  2. I don’t have any experience in this area so I can’t give any advice, but want you to know you and Roo are in my thoughts and I’m so sorry you have to go through so much. You are stronger than you know…and will be able to handle whatever is thrown at you.

  3. Our 32 weekers who are now 21 months old started speech therapy about 6 weeks ago – and I can already see the difference. I am glad to hear you are going to have her evaluated – it seems like the earlier they get help, the more quickly they hit their milestones! I would love to share some further information with you if you would e-mail me.

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