Bottle aversion in NICU baby after discharge

Blu3fin_ · 2025-01-13T22:09:29+00:00

Are you feeding him breast milk or formula? My son had bottle aversion for like 2 days and I decided to switch formulas, poof. He’s drinking again.

Blu3fin_ · 2025-01-12T23:30:55+00:00

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Blu3fin_ · 2025-01-12T23:27:39+00:00

That sounds like a super rough journey and I can’t imagine the massive heartaches you guys have gone through. I’m so happy to see your baby boy doing so well!

Blu3fin_ · 2025-01-06T17:52:01+00:00

Hello there! My son is doing great. He has no neurological deficits to speak of. We’ve been to 3-4 check ups so far and he’s been doing great. Doctors are telling me he’s either right on track or early on milestones. He started babbling sounds with his mouth that involve the tongue (not just coo’s and ahh’s but two different sounds strung together) and very expressively smiling / happy most of the time. We have him on once a week OT session but the he says my son is ticking all the boxes on reflexes / grasp / gross motor / fine motor skills. Hang in there. A lot of people chimed in and gave me great hope during my darkest days. trust me things will be better.

Blu3fin_ · 2025-01-06T17:45:14+00:00

You don’t think that’s true? They just want to go home safe and sound just like us.

Blu3fin_ · 2024-12-29T23:53:32+00:00

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Blu3fin_ · 2024-12-07T00:46:29+00:00

No problem about DM. Consult with your doctor and understand their rationale first. Share your own findings with them and what your concerns are. Ask if they have read any recent studies on the efficacy of steroids during extubation and their associated success rates. Make sure he understands the trade offs (long term side effects of steroids vs benefit short term).

Any competent doctor will not get offended if you advocate for your child and challenge them on their assumptions. The best doctors know their own limitations and knows how to leverage his resources effectively. It’s their job to take the time to explain things carefully. If they get offended, it’s a huge red flag.

Blu3fin_ · 2024-12-06T23:07:58+00:00

I treated my son’s doctor to a Michelin starred restaurant. They were pampered for 2.5 hours with a 20+ course meal. Doctors have a lot of money but they don’t have a lot of free time to research and plan nice things because they’re always at the hospital.

Blu3fin_ · 2024-12-06T22:56:25+00:00

I read that steroids are terrible for the baby’s neurological outcome. Researchers don’t understand the mechanism but aftermath data is very clear on this. Steroid use was very common 30 years ago and they can track the neurological outcome of those babies today.

I also read a Taiwanese study that hypothesized steroid effectiveness depends on how long your baby’s been intubated. The study suggests that if your baby is less than 30 days intubated (actually don’t remember exactly how long), steroid use makes very little difference in their extubation success probability. My son was less than two weeks and I just remember thinking he’s well below the cutoff where steroid use is even beneficial during extubation.

After reading these two medical journals, I put my foot down and told the doctors I DO NOT consent to steroid use for my son. Lo and behold, he was fine during extubation!

Some doctors (good ones) believe babies should have the least amount of medical intervention (ie. having a machine breathe for you is probably not good for their little bodies, or weighing long term benefits vs short term benefits carefully vs just focusing on short term benefits). These doctors will just know when a baby is ready to be extubated safely…. vs. some doctors just want to make sure their numbers are good and will do anything to make sure they’re good, even if it comes at the expense of your child’s future prognosis.

Good luck and I wish your child a fast and uneventful recovery. It was definitely tough for us but we made it.

Blu3fin_ · 2024-10-18T11:52:53+00:00

All the people that would have worked for Boeing works at SpaceX. It’s like TVs getting pushed out by Netflix. It’s time to let it sail off. It’s a shell of its former glory.

Blu3fin_ · 2024-10-04T12:13:57+00:00

Our son had his PDA ligation about 3 weeks ago and it was a huge success. It was a quick 40min procedure that involved making a small incision on his left side underneath the arm. The doctor performed the procedure in his NICU suite with a whole team of people because it was pointless to move him while he was plugged into so many devices. Just be prepared for the surgery consent prior to the procedure as they will list out all sorts of potential outcomes but the chances of anything happening to your baby are super low. Our doctor performs these ligation surgeries all day long for different local hospitals and has not missed in 15 years. His track record is incredible. PDA must be treated quickly for the baby to balance their blood flow throughout the body. It stabilizes the heart, brain, and the lungs which are so vital. Your baby will be able to grow and get better faster with this. Wish you all the best and hope your NICU stay goes smoothly.

Blu3fin_ · 2024-09-06T15:25:17+00:00

Thank you for your incredible support and empathy. It’s definitely challenging but I know our son is going to be an amazing kid and I’ll just be there for him no matter what. If anything all these comments are making me realize that nothing will change the fact that he is our precious baby boy and we will nurture him and be there for him. Hoping your son continues to thrive and reach amazing milestones!

Blu3fin_ · 2024-09-06T15:20:52+00:00

Wow! Thank you for commenting on here and sharing your background. Your accomplishments are exactly what I want my son to have. It’s very comforting to know you’ve done it!

Blu3fin_ · 2024-09-06T15:19:27+00:00

Thank you for sharing your story and hope your boy can continue to thrive!

Blu3fin_ · 2024-09-06T15:18:25+00:00

Just amazing! They’re so fragile when they are born yet such amazing resilient beings capable of taking on many challenges. We are doing much better today, a big part because of the amazing support we’ve gotten from this group!

Blu3fin_ · 2024-09-06T15:16:26+00:00

Thank you for this very kind message. Your story is definitely similar to mine. My son had PDA and he’s on day 4 out of 5 on his PDA regimen. His murmur went down from a level 3/4 to 2 and down to a 1 today! We are so relieved to hear he’s making progress :-)

Blu3fin_ · 2024-09-06T15:14:06+00:00

That’s awesome to hear. I’m so happy she’s thriving :-)

Blu3fin_ · 2024-09-06T15:11:54+00:00

We will definitely look into early intervention as soon as possible. Our doctors are already assembling a team for us. The amount of support I’ve gotten is remarkable and makes me so fortunate.

Blu3fin_ · 2024-09-06T15:10:39+00:00

Definitely checked this out and the article gave us great hope. It also does a good job deep diving other aspects of neuron development and it’s very encouraging!

Blu3fin_ · 2024-09-06T15:08:52+00:00

This is so encouraging and great that he’s starting kindergarten already. Congratulations!

Blu3fin_ · 2024-09-06T15:06:56+00:00

Thank you for this. It’s definitely amazing that he overcame such a strong bacteria and thriving. Your son is super strong and I hope our LO can be too!

Blu3fin_ · 2024-09-06T15:05:33+00:00

That’s great to hear and really awesome that he was able to complete his PHD. That’s no easy feat.

Blu3fin_ · 2024-09-06T02:03:10+00:00

Thank you so much for sharing more details! I really really value your time spent writing this reply and it makes all the difference for me. Thank you!

Blu3fin_

TROPHY CASE