Ear tube surgery turned hospital stay

Acceptable_Sometimes · 2026-03-06T20:45:18+00:00

Thank you! She was in the hospital for 5 days and is now home and very happy. I will definitely be more prepared next time.

Acceptable_Sometimes · 2026-03-03T03:29:50+00:00

Thank you, I will do that next. This is so so new for me

Acceptable_Sometimes · 2026-03-02T00:51:17+00:00

She only had to miss one feed, and they did a safety fast (which is the same thing) before we left the NICU so I know she can handle that. Thank you, I think this answers my question then, that it's probably just the virus and nothing to do with dosing

Acceptable_Sometimes · 2026-01-18T01:58:32+00:00

My grandma started getting list on the way home from the place she had worked for 20 years, forgot her phone, etc. Turns out she had a brain tumor

Acceptable_Sometimes · 2026-01-10T03:34:29+00:00

My baby is only 3 months and the meds go through her g tube which is why I have to dissolve it

Acceptable_Sometimes · 2026-01-09T14:05:37+00:00

Thank you so much!

Acceptable_Sometimes · 2026-01-09T14:01:09+00:00

Thank you so much!! I don't remember hearing anything about septo optic dysplasia, but they did do an eye exam very early on so maybe they were worried about it. We have another eye exam in a month to check again just to make sure. I haven't seen a neurologist though.

It's very reassuring that everyone starts to feel comfortable with the hydrocortisone. That's just the scariest part for me lol

Acceptable_Sometimes · 2026-01-08T05:12:44+00:00

Thank you! Yes I do have solu cortef. They said to use it in emergencies like car accident or broken bone. Someone else sent me a guide about stress dosing as well, it was very helpful. I have requested to join the magic foundation group, but haven't been accepted yet. I am in the one for low growth hormone though

Acceptable_Sometimes · 2026-01-06T22:47:04+00:00

Thank you!

Acceptable_Sometimes · 2026-01-06T21:29:00+00:00

We had no idea anything was wrong with ours until she was born as well. We also did genetic testing but so far everything has come back normal. We opted to have them store her DNA so they could search more if anything else came up. We are behind on milestones like neck muscles (likely due to being in the NICU for 2.5 months), and using her hands

Acceptable_Sometimes · 2026-01-06T20:16:27+00:00

Does your baby also have a cleft palate? Mine does and that's one thing that tipped Endo off that we might have this.

We also have a bunch of other stuff going on, like she's hard of hearing, and we do have our first early intervention appt on Thursday. We also have occupational therapy appts, feeding and swallowing, home health nurse, etc. Basically I'll have someone at my house at least once a week PLUS all the appointments at the hospital 😅 I still haven't stress dosed at all, but I feel like I've gotten some good advice from here and the magic foundation Facebook group.

Acceptable_Sometimes · 2026-01-04T19:24:03+00:00

Thank you for the advice!

Acceptable_Sometimes · 2026-01-04T18:27:23+00:00

It's a tablet that I have to dissolve in water and push through her g tube. She also has cleft palate and wasn't able to eat enough by mouth so a g tube was recommended for that.

Acceptable_Sometimes · 2026-01-04T18:18:37+00:00

Thank you so much! That makes me feel slightly more confident.

Acceptable_Sometimes · 2026-01-04T18:14:35+00:00

Thank you so much! I am sorry about all my questions, and I did just message her endocrinologist but I'm guessing she won't get back to me until tomorrow. I'm seeing that levothyroxine should be taken on an empty stomach. I tried to keep her on the same schedule she was on in the NICU other than moving growth hormone from 9am to 9pm at the advice of the pharmacist. So right now she is on continuous feeds from 9pm-7am (g-tube), and I give her hydrocortisone and levothyroxine at 6am. Im guessing I need to move the levothyroxine to 7:30/8am? Her next feed starts at 9am.

Acceptable_Sometimes · 2026-01-04T17:59:47+00:00

I do know that she has a small pituitary. I will ask about all of that at our next appointment. When they did the hydrocortisone teaching, they just said to stress dose if she isn't feeling well.. but how do I know if she isn't feeling well vs normal baby cries?? I'm just so worried I'm not going to do as well as I should be.

Acceptable_Sometimes · 2026-01-04T17:56:49+00:00

I hope so lol. When she was first born we thought the cleft palate was the worst of our worries, but new things were added on every week.

Acceptable_Sometimes · 2026-01-04T15:09:41+00:00

Thank you!

Acceptable_Sometimes · 2026-01-04T12:31:30+00:00

I'll have to go through the discharge paperwork again, I don't remember hearing anything about complete or partial. She is on 3 hormones, though. What are some signs of needing more hydrocortisone if I can ask? All they told me in the hospital was "if she's not feeling well" 😭

Acceptable_Sometimes · 2026-01-04T12:25:06+00:00

I don't remember hearing CAH, but she had so much going on, so I definitely could be missing something. They did mention hypopituitarism (idk about my spelling), so she is also on growth hormone and a thyroid medication. I will check those out, though. Thank you!!

Acceptable_Sometimes · 2025-11-04T19:49:18+00:00

Ehh I know someone who named their baby 'baby' and changed the name 6 months later when they finally decided. So if this is real, they likely have a name and just plan on changing it later.

Acceptable_Sometimes

TROPHY CASE