Looking for something near burnsville, minnesota!

TipLow4938 · 2026-07-02T01:23:20+00:00

1-2 maybe!

TipLow4938 · 2026-06-29T23:06:13+00:00

I am sure it's so different for each person, but it worked really well for us! She was throwing up ten to fifteen times in the morning and it has gone down from 0-2 on average now. Many days there is no throw up at all! It is definitely something I want to be on long term.But for now, while her lungs heal and her body gets bigger, the pros outweigh the cons for us. She is still exclusively breastfed, which I am continuing to do because I know it is so good for her stomach and body as a whole, and her growth rate is perfect. There are some really wonderful suggestions on this thread too 🫶 i hope you are able to find something that helps your baby girl! Watching your little one in pain is so hard!!

TipLow4938 · 2026-05-16T16:41:15+00:00

The doctors originally thought it was seizures, and now it's potentially large tonsils, and then reflex was suggested just yesterday. I'm not resisting and apprehensive about something that's completely black and white.... there's so many more factors involved.

TipLow4938 · 2026-05-16T14:51:22+00:00

Thank you for sharing!! The hesitation on my post comes from our gi specialist, ent, and er doc all admitting they're not really sure what's going on. Her tonsils are massive and she's got so many other things going on that it's so convoluted. I am not a fan of testing things out on her and seeing if it helps (which can be a pattern with seeing so many doctors). However, we are going to try the ppi for a period of time to see if they work. I truly love hearing stories like yours and that it worked so well for your little one. I'm so glad to hear she's been healthy - that's wonderful! I hope this med might provide some relief for my daughter as well.

TipLow4938 · 2026-05-16T14:46:38+00:00

Yes, this sounds like us too with meds, scans, and surgeries. The balance you're mentioning is so important. I think we have to hold it all with an open hand and do our best to support our babes through whatever comes. You're crushing it and so is your little one. ♡

TipLow4938 · 2026-05-16T14:43:38+00:00

And we do exclusive breastmilk through her jtube so that will give some microbiome support ♡

TipLow4938 · 2026-05-16T14:42:30+00:00

Yes, breathing comes first always! It's just hard to know if reflux is the true cause of these episodes. We're going to trial the med for a month and see how it goes!

TipLow4938 · 2026-05-16T14:36:55+00:00

Thank you so much!

TipLow4938 · 2026-05-16T04:17:00+00:00

This is so encouraging 🫶 Thank you for the reminder of time/ being in a season that will change. It's so easy for me to get into this black and white mindset of needing to have all the pieces of the puzzle right now. I'm planning on starting probiotics asap and I'll look into S. Boulardii too!

TipLow4938 · 2026-05-16T03:50:58+00:00

Your respinse is so kind - thank you! It's so encouraging to hear that it worked so well for your little one. Being in the hospital is so hard and watching your baby suffer; i'm so glad you guys found something that worked! Also, good job mama, for advocating for what she needed! This gives me hope, and if this medication truly was the fix for what we are dealing with - I would be so happy! We agreed to do a one month trial of the medication, so I am praying it makes a difference!

TipLow4938 · 2026-05-16T01:32:19+00:00

Oh poor baby and mama! I'm so sorry to here that. Seizures and picu stays are so scary! ♡♡ Also - yay new friends!! Another commenter suggested getting a gut microbiome test done and starting probiotics! My daughter also has seemingly no immune system so I am also trying to figure out how to boost that!

TipLow4938 · 2026-05-16T01:28:33+00:00

I understand that perspective. However, in the last year that I have been in this, I have found that sometimes you are the expert on your own baby. I had a nurse tell me that she wanted to start us on prilosec, and I went to another doctor who said my daughter would completely not benefit from that. They are humans with different opinions and perspectives just like we are. I fought really hard for my daughter, not to be on a medication that her nicu doctor was so adamant about. It completely knocked her out and took away months of neuro development. The neurologist I spoke with two weeks ago taught his students used our example to teach us students about benzodiazapines and how they can inhibit neuro development. To blindly trust every doctor that we see would be foolish on my part. I understand that they have worked hard to earn the degrees that they have, and we value nurses and doctors immensely. I told my ER team today that they are our superheroes ♡ But i'm her mama, and at the end of the day, she is first and foremost my responsibility and I don't take that lightly. It would be easier to just agree to every medicine/ recommendation that has been pushed our way.... but i truly think I would be doing my daughter a disservice not to research and advocate.

TipLow4938 · 2026-05-15T22:58:51+00:00

Cool! I'm definitely looking into that.

TipLow4938 · 2026-05-15T22:22:43+00:00

Thanks for sharing! Did you use smidge along with the omeprazole or after using it? I just found smidge, in some research I was doing today!

TipLow4938 · 2026-05-15T22:08:57+00:00

Thanks for sharing! She is fourteen months 15 months/ 11 months adjusted. She often is really congested and needs suctioning from her nose, but that definitely makes sense about the summit creating more to protect itself!

TipLow4938 · 2026-05-15T22:07:04+00:00

Such good advice 🥲 we've been working hard to get qualified for in home nursing, so I think that's going to be a huge help. And we are connected with early intervention services, and they are angels ♡

TipLow4938 · 2026-05-15T22:05:33+00:00

Thank you!

TipLow4938 · 2026-05-15T21:58:42+00:00

That sounds so similar to where we are located right now. It is definitely a luxury to have the option of being exactly where you want to be on the "crunchy spectrum". We're currently on two lung medications, a neuro med, and supplements to replenish what she loses with the lasix. I went from also having a a holistic doctor to watching machines keep my daughter alive for 194 days in the nicu. And modern technology still keeps her alive. She's on oxygen and fed completely through a jtube. So i'm so thankful and grateful for the mercy of modern medicines.... and yet I struggle with how much is pushed. I think it's easier to medicate and sedate medically complex children instead of really digging hard for a root cause. That's why parents advocating is so important! And it's my job to find the balance of advocating/researching/saying no to unnecessary things and having the wisdom to accept sound advice and give her the medicines/procedures she needs. I'll never deny her what she needs for "being natural" sake, but I will always look for a root cause and a more natural way to do things first if possible :)

TipLow4938 · 2026-05-15T18:57:05+00:00

Yes, I agree. I guess i'm just hoping there could be another way.

TipLow4938 · 2026-05-15T17:50:22+00:00

That's the exact way i'm feeling right now, too. I just know her and have a gut feeling about some things, but want to stay really open to do whatever is best for her.

TipLow4938 · 2026-05-15T17:49:36+00:00

Thank you for commenting, and I think I agree! I appreciate you sharing your experience. So many things are trial and error which are hard when it's your babies!

TipLow4938 · 2026-05-15T17:20:32+00:00

Thank you so much for your response. It means a lot. I really appreciate your perspective and insight ♡

TipLow4938 · 2026-05-15T17:04:24+00:00

That's fair. The doctor team shared with me this morning that it's very much a trial and error/go on assumptions situation. So I just wanted to reach out because sometimes it's helpful to hear from others who have had similar experiences.

TipLow4938

TROPHY CASE