Friday, December 10, 2010

so... yes AND no...

I don't really know how to write this post- I'm still a bit confused myself. We just returned from our video fluoroscopy- or swallow study at Children's Hospital. On our first study, they tried thin liquids first, saw she was aspirating and went directly to honey-thick liquid (formula, breast milk thickened to the thickness of honey using Simply Thick). Gemma didn't aspirate the honey thick liquids so we were placed on a regimen of feeding her thickened liquids for all feeds- either with Simply Thick or with rice cereal in formula.

Today, we started the study with Nectar thick liquids for Gemma. This is one level thinner than the honey thick. They were trying to minimize radiation and since she didn't aspirate the honey thick last time, they didn't need to see it this time. They wanted to check her thinner liquids but I told them she was a gulper so they worked with a thicker liquid first. This is where the yes and no comes in...

1. No, she did NOT pass her swallow study.

2. No, she did NOT aspirate... that's good.

3. Yes, she shows potential to aspirate... that's bad.

4. Yes, she will most likely grow out of this by 1 year (if she doesn't have any other developmental issues- which we don't see any delays in development at this point.)

5. Yes, it could absolutely have to do with her reflux.

6. No, they don't know why she's aspirating or showing potential to aspirate.

The bottom line is: she has a slow swallow. Her swallow and anatomy are just fine however when she swallows, she lets all liquids get to the top of her airway and then "lazily" closes it off with the epiglottis. Most people are quicker about this reflex and she needs to be too in order to pass her swallow study. She didn't aspirate any of her liquids but they did kind of pool right at the top of her airway- the speech clinician said that if she got tired or lazy while eating, she could definitely aspirate. Not a guarantee but a distinct possibility. So, as of right now, nothing has changed in their recommendations for her feeding schedule.

She is currently getting preventative inhaled steroids through her nebulizer that we may or may not continue on our pediatrician's recommendation. We will for sure continue on her reflux meds and were advised to try to switch formulas to Gentle Ease by Similac (I think). Supposedly, this can also help with her reflux.

We also asked about her contact with people and the Speech Clinician thought that it was just fine to be reasonable about her health. For example, we can have visitors who are healthy (and have healthy families), and preferably have had a flu shot, at any time. Also, if we want to take her out to church or to a "public place" the real risk comes from us touching things and then touching her or someone coughing or sneezing on her. So, if I cover her up and bring hand sanitizer with me (and use it before I touch her), I should be able to take her out in public. All that being said, that's what ANYONE should do for ANY new baby during flu and RSV season. That's common knowledge- if you or someone you live with are sick, don't be around a baby. I don't know how much of an increased risk she's at anymore since we are keeping her from aspirating her food. She still could be aspirating her saliva which could irritate her airways and make her more prone to a more serious respiratory response to germs. We just don't know. She doesn't show signs of aspirating her saliva- I don't think she does, anyway. But since we can't know for sure, I'm thinking our pediatrician will continue with our same course of treatment- nebbing, keeping her away from obvious germs etc.

So, yes and no. No, she didn't aspirate her food at all. Yes, she's still getting really close to aspirating it with each swallow... So what does that mean? I guess we continue on with the same course of action until March or April when we'll go in for another swallow study. Hopefully, by 6 months, she'll be fully developed out of this. So, yes- what we are doing is helping her. No, we are not done yet. Yes, God is faithful- No, we do not doubt His ability or willingness to heal her. Yes, we will keep thickening her feeds and watching to make sure she's not aspirating her food. That's all we can do. We'll continue to treat her reflux by elevating her, medicating her, switching her formula, and thickening her food. That's all we can do right now and that's our "normal". Bottom line... Gemma's healthy, she's perfect, she's beautiful! What more could we ask for!?

The Lord is faithful and present. He hears our prayers. He is near to us in our times of fear and our times of joy. He is more than we could ever hope for and everything that we need. We will continue to rejoice for all the glorious blessings we've received in our beautiful daughter Gemma. She truly is the most precious of all jewels.

Philippians 4:4-7
Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

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