Friday, November 4, 2011

Micro Preemie

I've done everything I was ever told to do when it comes to keeping my kids safe. I sequestered Maryam for every winter, except this year. I did let her participate in more things last winter, than the winter before, but its been a slow process. Her first few years I didn't let anyone see her. I had to protect her from everything. Practically anything could kill her. The common cold wasn't just a cold for Maryam. For Maryam, catching a cold lead to more oxygen, more medications, most often bronchitis, bronchialitis, RSV, pneumonia and/or hospitalization. Winters have been rough for her. It isn't uncommon to hear me say, "I hate winter" or "I wish we could skip November through April".
For Micro preemies there are things in life that are just going to be more difficult for them than other children. I've known this from the beginning. We were taught early on what to look for and how to help prevent anything else from coming up. Things we learned to look for, or have already experienced are learning problems, hearing and vision problems, respiratory problems, feeding and digestive problems and Cerebral Palsy. Thankfully we managed to dodge a CP diagnosis, we had to fight until she was 3 years old, but she finally "grew out of the signs". You can read some of my CP rants here.
Hearing and vision problems are kind of interesting for us when it comes to Maryam. Brett has HORRIBLE eye sight. Terrible. We've been told that vision is hereditary. So, yes Maryam had ROP, yes she had surgery to repair the ROP, but she has no major side affects from the ROP and no longer has any symptoms of the ROP. She does have vision loss, but that could be hereditary. She doesn't have peripheral vision, but that's because of the ROP laser surgery. As for her hearing, she has had some hearing loss in her past. All of that has been linked to her multiple ear infections and is expected to be temporary. I'm inclined to believe that since her most recent hearing tests were normal. In case you don't know what ROP is, you can read about it here.
Feeding and digestive problems. If you've read my blog before, you know how important feeding is to me. You know how I struggled with feeding Maryam for years. You know that 4 weeks at the inpatient feeding program at CHOC changed our lives. All this goes without saying. Feeding is my passion. Every time Maryam takes a bite, chews it up, and swallows, a little miracle takes place. The extent of Maryam's oral aversion is not common. Its very rare that a baby or child just cannot eat. But Maryam is living proof that it does happen, but more importantly, she is living proof that it can and will get better.
Moving on to learning problems. I am happy to report that Maryam hasn't shown any learning problems. She has a TERRIBLE memory, but that could be inherited from me. We were told to put her in preschool as soon as it was medically safe to do so. Her pulminologist put her on a prophylactic dose of antibiotics to help keep her safe from the feared pneumonia. So far, so good. Research shows that early intervention can help prevent learning problems. Maryam started getting early intervention at home when she was almost a year old. Once she turned 3, the great state of California deemed it unnecessary anymore. So, once she was old enough for preschool and healthy enough, we enrolled her. Her teachers all say that she's very bright! Actually, "She's very bright, and very matter-of-fact about it." were their exact words.
So, that's a little lesson on the affects of being born as a micro preemie. Tomorrow I'll go over a new study that shows, being born as a micro preemie has the potential to affect her for the rest of her life. We will be in Orange County tomorrow for a reunion at CHOC feeding clinic. It should be fun to see all of Maryam's feeding team again! Weather permitting, we'll be hitting up Disneyland afterwards.

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