Friday, December 14, 2007

Wow! What a day!

So, Thursday morning we left the house by 6am to be at Maryam's preemie follow up clinic visit in San Diego by 9:45. Woo-hoo! Imagine how fun that drive was! We get there and Dr. Bromberger goes over Maryam's development first. She's not doing all the things an 8month old should be doing. Basically, the fact that Maryam's not mobile at all is a concern for her doctor. So, the doc wants Maryam to start physical therapy twice a week to help her work on getting mobile. Also, she thinks that Maryam is left side dominant and that we need to work with her on her right side to catch up. She basis this on Maryam not protecting her right side from a fall and not using her pincer grasp on her right hand to handle her toys.
The doc asked about how her OT was going and I told her that Amanda thinks her eating problem is entirely sensory and the doc agreed. She also thinks the toe pointing is a sensory problem as well.
After we got past the whole sensory, OT, PT conversations we moved on to nutrition. Maryam's weight gain has stalled a little, but it hasn't disrupted or changed her growth curve on her adjusted chart. She's still in the 10% for weight at her adjusted age. Of course, she's not even on the chart for her actual age, but that's ok....I'm over it. So, we devised a few plans to see if we can't jump start her weight gain a little bit. Last time we needed Maryam to gain more weight she went into surgery a few days later! So, needless to say hearing the doc say she needs to gain more weight, made me a little nervous! I told Dr. Bromberger that her retching is getting out of control and that we think its a volume issue. The volume is too much for her to be comfortable, but she needs the calories to gain weight, what do we do? She suggested a few things. Increase the caloric count of her formula so she can get more calories on less volume and/or change her formula to a formula with higher calories in it per volume. So, we're doing both. We're re-formulating her mixture so we can get more calories in each feeding and we're taking some of the volume away and adding a new formula with more calories in it. Does that make sense? Basically, we're making the Enficare a 26 calorie per ounce formula, taking 30mls away and adding 30mls of Ensure that has 30cals per ounce in it. AND, she has to have a minimum of 5 ozs of water per day so she doesn't get dehydrated or constipated. We're going to keep taking the Enficare away and adding the Ensure over a month's time until we're only on the ensure. That way we'll be bringing down each feeding by 2 ounces and that will help take care of the volume problem.
Then we moved on to her lungs. Her lungs haven't gotten any better since July. In fact, her lungs have gotten worse! Imagine that! So, now she has to see a pulmonologist. We're trying to get an apt on December 31st with pulminology since we'll be in San Diego for her RSV shot. Just when I think we're actually getting rid of some of our apts, (audiology, and surgeon) we add new stuff!!! Jealous? I know you are!!!
So, after our apt. we went to visit Maryam's other neonatologists and nurses up in the NICU. She took them a cake(Brett made it!), pictured above. Of course they all loved it and they especially loved being able to see her! She showed off her big gummy smile and was all happy and fun! Which was pretty shocking being that she had just gotten 4 shots! Hooray, you're 1, let's put a bunch of needles in you.
After we left the hospital, Brett dropped us off at nurse Jennifer's house. We had a fun afternoon hanging out with her and her wonderful son Jake. He is the sweetest nicest boy I've ever met. He had fun playing with Maryam, I believe he called her, "pretty cool." He gave Maryam one of the stuffed up dogs that someone gave him when he was hospitalized last year when she wouldn't stop crying from being tired and sore. Oh and get this! He's growing out his hair to donate it to Locks of Love. Seriously sweet boy! Jake, if you're reading this, THANKS.
Oh yeah! I forgot to tell you! She started getting a tooth!!! w00t!! She's getting it on the bottom left! w00t!
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1 comment:

Chrissy said...

I know it's silly, but I still giggle every time Brett makes a cake :)