Tons to do Tuesday!

The day finally arrived! Tuesday, February 26th was our full scheduled day at Vandy. We started out with our first appointment with Nutrition at 8:30.

We discussed the foods Fisher can and can not tolerate, as well as, how to help her gain weight. Unfortunately she has fallen off of the growth chart for weight and height. We’re going to monitor the “length to weight” growth chart and make sure she stays on track gaining around 2 oz a week.

Currently Fisher nurses every 2 hours. She takes a 4 hour nap during the day (along with many others but at least one big nap) and goes to sleep around 8 or 9pm and sleeps until around 1 am. She nurses then goes back to sleep for 2 hours, wakes up, nurses, sleeps 2 hours, nurses and is up for the morning. The nutritionist said we will only be able to have one 4-5 hour sleep stretch a day and that we need to stick with nursing every 2 hours. We will have to wake her if she’s sleeping past the 2 hour mark.

We are also going to look into seeing if Fisher has a soy allergy. We’ve still have some stomach issues with her and they said soy allergies usually go hand in hand with dairy allergies. We have a GI appointment next Tuesday, so hopefully we have some more answers then.

Foods we can have:

Pumpkin, peas, green beans, and sweet potatoes

Foods we can’t have: too many haha

After the nutritionist appointment, we had her ultrasound on the adrenal gland.

After that we had an Echo done on her heart to check to see if the ASD had closed up. We then met with Dr. Thomas. He informed us her PFO has grown down but not completely closed. It’s normal to have a little gap still. He said 3% of adults have a gap still. She has officially graduated from the Pediatric cardiology department!! Wahooooo one less doctor!!

After Cardio, we met with Dr. Benedetti (hematologist/oncologist). He let us know that the nodule on Fisher’s adrenal gland has changed slightly in diameter, but nothing too concerning. We are going back in 6 weeks for another ultrasound. If everything is ok then, we will go every 3 months for scans. He said he doesn’t know what the nodule is. It could be one of the three options still. He said he’s not worried about it, but we will keep monitoring it.

Overall, our appointments went well. Our girl is slowly growing and we’re making huge improvements. She is able to hold her head up a lot better and is rolling side to side.

Please continue to keep her in your thoughts and prayers!

P.S. Today is #ShowYourRare day! Please help raise awareness for our 2q babe by sharing and spreading the word!

GoFundMe-Fisher’s 2q37 Medical Fund

One thought on “Tons to do Tuesday!

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