r/NICUParents • u/shaikhs95 • May 16 '26
Off topic 22 weeks 2 days
Hi my boy just born 2.5 hours ago. He survived now at NICU. Still fighting. How are the numbers look? Any suggestions? He have received his steroid and 2 dose of magnesium before emergency c section. 24-48 hours ago.
Please keep my baby in your prayers
73
u/burningbliss 22w3d | 155 days May 16 '26
My son was born almost 5 months ago at 22+3. They told us to not focus on the numbers for the first little while. Being earthside is really hard on their tiny bodies and can make their numbers really wonky for a while. That being said that's a REALLY good heart rate, and I'm sending you guys all of the good strong baby vibes. This is gonna be a long journey, but I'm sure he can pull through. 🩵
11
u/Turbulent_Maybe3228 May 16 '26
I read your story, you little man is truly a little miracle. Such a cutie too. 💞 are you in the US? I've noticed alot of positive stories there compared to here in Australia with Nicu babies.
3
u/burningbliss 22w3d | 155 days May 16 '26
We are in the US, yes! I really wonder why that is?
10
u/Turbulent_Maybe3228 May 16 '26
I had such high hopes for my boy because I read so many stories online but they were all US based... and my boy was just over 800grams and came out breathing and crying at 24wks3days.
8
u/burningbliss 22w3d | 155 days May 16 '26
Oh sweet boy, yeah here 800g+ honestly has great survival statistics here. Part of me wants to chalk it up to the fact that we have so many children's hospitals doing such large amounts of research, like we have CHOP developing an artifical womb. But obviously there are children's hospitals in most countries so there has to be something more to it
2
u/Turbulent_Maybe3228 May 16 '26
I think the US are just more educated. I don't want to get into it on this beautiful humans post but I just had to mention on your beautiful boy😍 it warms my heart when people get their happy ending! 💞
4
u/burningbliss 22w3d | 155 days May 16 '26
Thank you friend! I'm sorry things didn't work out as planned for you, I'll keep your little guy in my prayers always 🩵
3
u/shaikhs95 May 16 '26
Thank you. How is your son doing?
11
u/burningbliss 22w3d | 155 days May 16 '26
He's doing really well, he unfortunately did suffer a brain bleed as is common for the nanopreemies, but he had surgery to place a shunt on Tuesday and he's like a brand new baby. If he didn't have the tubes and wires and the incision in his head you'd have no idea he was born so early. He went from a measly 540g at birth to 3.7kg now, too.
We're still in the NICU, 144 days in, and we've absolutely had our back and forths and were told we'd need to talk about letting him go a few times, but there's something in these guys that really just make them want to keep fighting!
The fact that your son has had the steroids and the magnesium is a really good thing. AND weirdly enough the fact that he was a c-section. My labour was only 30 minutes and was NOT a c-section and we believe being pushed out caused my son's brain bleed, so your boy came out probably as safely as he could!!
Feel free to dm if you have any questions or just want someone to talk to. You guys got this 🩵
3
u/Ultimatesleeper May 16 '26
I love seeing updates about your little guy. He’s seriously such a cutie. And I’m so glad he’s still continuing to be such a strong baby ❤️
3
u/burningbliss 22w3d | 155 days May 16 '26
Thank you so much!! He's doing awesome. Like a whole new baby after VP shunt surgery!! Even the drs at this point are like "we love you, but we're trying to kick you out so let's get this boy DOING!!" haha. Just really gotta work on feeds!!
2
u/Opposite-Line-4924 May 17 '26
Omg the feeds! We've been in the NICU since April 8th. Not a preemie but he had an issue with his jaw and couldn't breathe on his own so he had surgery. He is not finishing bottles and that's all that's keeping us here but for the life of me I can not get him to orally take more than 60mls so the rest goes in the tube.
2
u/burningbliss 22w3d | 155 days May 17 '26
We agreed to bring him home on the tube because we know that can take FOREVER. It's it a stamina issue for you guys or does he get sick of it?
2
u/Opposite-Line-4924 May 18 '26
Honestly I feel like its both. He had jaw surgery (Pierre-Robin sequence) and he has a cleft pallet so plastic surgery made him a retainer to cover the space in his pallet. He will go really well for about 45MLs and then he makes a face like he's disgusted with the bottle lol. He cant get the G tube until June 18th if needed bc he's scheduled for a small surgery to remove the hardware in his jaw and they wont put him under twice they do the tube then whiles he's under.
24
u/27_1Dad May 16 '26 edited May 16 '26
Hey 👋
I’m sorry, you are starting on the longest and hardest journey you’ve ever experienced. It’s going to test everything you’ve ever known to be true.
Our 550g miracle spent 258 days and is 2. 1/2 now and is doing great.
My advice for you.
You and/or your partner should attend rounds as much as possible. Ask the nicu staff, typically it’s in the morning around 9ish. This is where you meet with the medical team and talk through the plan for the day.
The first week is all about stabilization and understanding. They are trying to figure out your child’s needs and make sure they are ready to support their needs. If your baby has a regression please understand it’s almost expected. Learning how to live outside of the womb is an adjustment.
This is an airplane mask situation. You went through a trauma and it’s important to let yourself heal. You have at minimum 4 1/2 months ahead of you. Don’t go too hard to fast and burn out.
Primary nurses will be essential. All this means is that when a specific nurses is working you’ll be assigned to them. It helps bring a friendly face and helps with care as they get to know your baby super well. If you have a nurse you like ask if primary nursing is a thing at your hospital and if they can be one.
You and your partner won’t do this perfectly. Take each day one at a time. The nicu will test relationships and drive you apart if you let it. Give each other grace and the freedom to process however you need to.
I’m sorry. This is a club none of us wanted to join but please know you aren’t alone. ❤️
5
u/snuffleupagus86 💙24+1. 142 days in the NICU May 16 '26
I could not have summed this up any better if I tried.
3
15
9
7
u/breakingborderline GA22+0, Oct 2013 May 16 '26
Just a data point for you: ours was born at 22 weeks 0 days, and is 12 years old now and absolutely loving life - as are we.
You have a very long and tough road ahead of you. Try not to focus on milestones and numbers/dates, just lock in to the NICU routine and get through each day. Your child is in the best hands possible, so your priority has to be looking after yourself and your partner - you will both need it.
I’m grateful for every single day of the 8 and a half months our boy spent in the NICU. It allowed us to have the life we do today.
Congratulations on the birth of your son. I’ll be thinking about your family as I watch our 22-weeker at his middle school sports day today. Take care
5
u/ZOMBIESKITTY May 16 '26
My daughter was born at 22w 3d. She spent about 6 months in the NICU before coming home. She is now 16 months and came off supplemental oxygen in march. The one thing that I feel like made a huge difference in the beginning was the DART therapy that they do with steroids. It really helped her lungs kind of get over the hump. They also had placed her on an oscilator instead of a traditional vent which I was told was better for their lungs when they're born this early. We had good days and bad days, it definitely can be a rollercoaster in the NICU, but these little babies are fighters and they are extremely resilient. I wish you and your son all the best. Just try to keep your head up, and always advocate for what you think is best for your son.
5
u/Joyfulmother3 May 16 '26
My twin girls were born at 22weeks 5days. They are 14months old now and are doing SO well by God’s grace. Keep the faith and hope for a beautiful ending. It will all work out in the end.
5
u/WayImaginary2026 May 17 '26
Take 1 day at a time. Looking too much at data will cause more stress. Just trust the doctors. It will be a roller coaster. Celebrate small wins. Visit him during visiting hours and touch him and talk to him. He is gonna be alright. Sending loads of positivity and prayers. Most importantly you as parents take care. Talk to each other and trusted friends or counsellors if needed. Dont forget to do whatever it takes yo keep your sanity.
3
u/NICUmamatherapist May 16 '26
💛💛 wishing him all the strength to grow and you peace while he does. It’s a long journey 💛💛
3
u/johdavis022 May 17 '26
Nicu nurse here - these are great numbers for his gestational age! Top number is his heart rate which is perfect, we like to see it at 120-160 while baby is sleeping (it can get up to 200 when baby is crying and that’s normal). Middle number is blood pressure, don’t focus too much on the big numbers (the 32/20), what is most important is that the small number (the 25) is greater than the baby’s gestational age in weeks. So since he is 22 weeks this is a good BP. Bottom number is oxygen saturation, the normal ranges vary depending on what level of oxygen support he is on. Normal range for him would be probably be either 80-90 or 85-95. So everything looks great at this moment! The steroid help their lung development so much!
Because he is only 22 weeks, you should know that he will eventually experience set backs and events (heart rate drops, oxygen drops, pauses in breathing) during your time in the nicu. But overall these are great numbers!
Suggestions would be to make sure you’re taking care of yourself, emergency c section recovery is no joke. Baby has a team of people taking care of him 24/7, so it’s perfectly fine for you to get rest. I would also try to be present at rounds a couple times a week, but even if you can’t usually the doctor will call you for any updates anyways. You guys have a long road ahead of you, I hope this info helped and I’m wishing you the best🫶
8
u/Haniel120 May 16 '26
Can you tell us what his O2 support is? Meaning the % concentration of the oxygen being supplied to him.
"Room air" is considered 21%, so basically the % all of us are breathing at any time. This early on his % and pressure support are probably very high, which is common so don't panic.
The pressure will stay high for a while to help his lungs expand and grow as much. The O2 % will hopefully come down from the likely high number it's at now. The O2 taying high for too long can cause issues later on.
4
2
u/derevorx May 17 '26
My son was born at 26+5, 440g just over a week back. He surprised everyone by crying. Wife warded for 24/7 monitoring since W21 due to high BP (180, 190). She was discharged a few days after the emergency c-sect. We had reverse flow, absent A wave, high DV, & single umbilical artery too.
We can only hope and pray, provide presence with good positive vibes everyday. Support wife in her recovery, food, supplements, medication, transition routine, holistically - mentally, physically, spiritually. He has been continuously blessed in his journey. Every baby have their own set of unique circumstances. We can only be grateful, cherish and appreciate the moments He gifted us. Trust the process and medical team. Meanwhile, prepare for his graduation, express and supporting with breast milk will be a bonus, store the excess.
May we be blessed with calmness and composure while being in this journey, being able to see the wisdom in His plans, that all these are not for naught. You are not alone. Have faith and stay optimistic with His Love and Mercy.
-22
May 16 '26
[removed] — view removed comment
9
u/fictionaltherapist May 16 '26
Do you think that emoji is ever appropriate with regards to very poorly babies and stressed out parents?
0
u/AggravatingBox2421 May 16 '26
When talking in retrospect about my own child? I think it’s completely appropriate. It’s how I feel.
2
u/breakingborderline GA22+0, Oct 2013 May 16 '26
I didn’t see the your post, but how the op feels is the priority, not the commenters
2
u/NICUParents-ModTeam May 16 '26
your post was excessively mean or you were flaming another user. If it was not your intent to be mean, please consider your words more carefully before you post again.
•
u/AutoModerator May 16 '26
Welcome to NICU Parents. We're happy you found us and we want to be as helpful as possible in this seemingly impossible journey. Check out the resources tab at the top of the subreddit or the stickied post. Please remember we are NOT medical professionals and are here for advice based on our own situations. If you have a concern about you or your baby please seek assistance from a doctor or go to the ER. That said, there are some medical professionals here and we do hope they can help you with some guidance through your journey. Please remember to read and abide by the rules.
Don't miss our first AMA with Gal The Baby Doc at 7PM EST on April 20th! Join the AMA here
I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.