Feeding Issues aren't good issues/ Visitors made her day!

Part of Reagan's issues are feeding troubles. She takes the appropriate amount volume wise, she just struggles with it. She is still showing signs that she could be aspirating on her feeds. Last night she had a really bad feed. Her oxygen levels dropped and she seemed distressed. After that feed she kept coughing and was irritable. She did not let me put her down. When she finally let me put her down she wouldn't let go of my hand, every time I tried to pull away she would wake up and start crying until I gave her my hand back to snuggle with. I managed to capture a picture of it.

Her first feed this morning was pretty good. She still seemed uncomfortable feeding. Her next couple of feeds were not so good. Her last feed was even worse. She was coughing and her oxygen dropped she sounded awful after and seemed miserable. Her spirits picked up when she saw she had some visitors: Uncle David, Auntie Diana, and little miss Ava. She was even happier when she saw Auntie Julie and Addison came to visit! Here are some pictures of the visits:

Addison and Ava giving hugs bye bye!

Addison kissing and hugging Reagan bye bye!

Snuggling with Auntie Julie!

After her visitors left the doctors and her nurse came to chat about her feeds. In the discussion we talked about how they have to try to limit a child's exposure to radiation when doing the modified barium swallow. So in the study they did the other day they first tried regular formula and she aspirated. Then they tried formula thickened with oatmeal to the consistency of nectar (which is what she had been having at home), and she still aspirated. So then they tried formula thickened with oatmeal to the consistency of honey and for the little glimpse  they took her swallow look good and there was no aspiration. Over the course of the past couple of days she has still struggle with her feeds very similar to how she was doing at home. The doctors said that she could still be aspirating especially if the contents of her stomach are coming up. There is still a concern that she will aspirate especially if she is tired, or not feeling well during feeds. They said that the thickness of the new feed can be too much for her. So they came up with a game plan for the next 24hours she will have a tube that goes in her nose and down to her stomach called an Ng tube. She will not be allowed to eat by mouth and she will be fed and through this tube. If her symptoms resolve then they feel she still could be aspirating on the honey thickened feeds. And she will go home with an Ng tube and eventually have a G tube placed (which is a tube that's not in her nose and goes straight to her stomach). Ng tubes are not permanent and babies can rip them out, so she would need something a little more permanent, until hopefully she grows out of her issues. So far she seems less stressed out with her feeds. She does get a smaller amount over the course of an hour, so hopefully it makes a difference for her. I NEVER EVER wanna find her blue again. And if last sundays event was caused by aspiration (which they suspect it could have been) and these are the steps we have to take to make sure she is safe then I am fine with that. I'll post another update when I have one.

Sleeping after her Ng tube was placed.

Oh and good news! As I am writing this post the docs came in and told me her EEG was normal! Yay! One less thing to worry about, no seizures!

Hope this post makes sense, I am very tired today!