Wow does the time fly by and so much has happened in the last few weeks. On June 23 Arin was admitted to the hospital and a NG tube was inserted as she was not taking in enough formula daily for her calorie or hydration needs. On June 30th we met with a surgeon and he scheduled her neission and G tube insert for July 12. She came through surgery great and after one night in the PICU as a precaution she was moved to the med/surg floor. She spent a total of 4 days in the hospital due to post op pain and making sure she tolerated her feeds. We guarded her IV like no tomorrow as Arin is a very hard stick….. they had to do her IV in the OR as none of the nurses could get it, the doc had to do it. She is now getting 17ml per hour for 18 hours a day via the G tube and pump. She also needs to take in a total of 4 oz by mouth during the day while either on the pump or off to get the proper requirements. Since she started the feeding via a tube she has gained almost 2 lbs (weight gain is now slowing back down) and is now way more alert and active then she was. I am so happy that we decided to go with the tube feeds. She is now cooing (sounding like a bird) and will move her arms around and kick her legs more. She is also doing a lot better with holding her head. She is starting to smile but not at anyone but to the point where I got a pic of it.
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- What a grin!
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- Pick me up mom!
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- Resting after surgery
Along with these big changes she as seen her urologist and had a renal ultrasound and they found that she has echogenic kidneys with small cysts and will do another ultrasound at the end of August. She was diagnosed with a ASD and pulmonary stenosis and will be followed for that. At the end of Sept they will be doing a modified barium swallow study as we think she is starting to have problems swallowing her formula and already has a poor suck. She will also see her neurosurgeon for her tethered spinal cord in Sept and GI/nutrition for a follow up in Oct. So far no seizures and are praying that it stays that way.
She will be starting at the special needs day care at the end of the month as I will be returning to nursing school (only 4 more classes for my ADN-RN and 6(?) for my BSN-RN)
Thank you all for your support both on here and on Facebook you all are a great source of inspiration for me.
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I forgot to mention that her current weight is now 8lbs 10oz and she is 21 inches long and wearing newborn clothes finally!
Awesome report! Sounds like she’s doing really well! And congrats on being so close do being done with school too! She’s such a cutie!! 🙂