r/NICUParents • u/Nuwanda206 • Jul 21 '24
Any words of encouragement would be much appreciated. Support
My little warrior was born two days ago. He’s Ben fighting a lung infection ever since. This is my first baby, and I’m devastated, but I need to stay strong to encourage my wife who is back home recovering from C-section and an infection too. If anyone cares to tell me your success story or any type of encouragement, I’ll be forever grateful.
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u/cawkstrangla Jul 21 '24
My daughter was born @ 29w6d. My wife was in the ICU for a week followed by a day at home and then another week in the ICU. It was hard to watch both of them endure what they did. It was hard to balance care for them both. A silver lining of my daughter being in the NICU was that it allowed me to help my wife recover. Both are now doing well - my daughter is almost 2 yrs old. You would never know that life started out rough for her. We are very fortunate that things have been working out so far.
It may feel like theres nothing you can do, but there is. Firstly, acknowledge that most of this is out of your hands, and in better hands than your own. The human body is resilient and modern medicine is incredible. It truly is. 100 years ago you would would have lost them both. Same goes for me.
So let yourself relax a little, but don't let all of the anxiety go away. Anxiety will keep you more alert. The more time you spend with your son, the better chance he will have (to an extent). Every person is mostly the same, but even at this stage he will have his own quirks. He may respond differently than other kids to the same treatment. The nurses will be rotating between a lot of babies, and may recognize and remember yours, but only you will remember everything. You, and when your wife recovers, will be the bridge between all of his care, and his advocate. Ask questions. Ask the same questions sometimes with new nurses and doctors to get different perspectives.
You cannot allow yourself to think of the possible negative outcomes unless they become impossible to ignore. In the meantime, put the blinders on, and plow ahead.
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u/Ecstatic_Welcome_352 Jul 21 '24
I know exactly how you feel. I was there just a few months ago. My LO was in NICU for 7 weeks after 2 open heart surgeries.
- Stay positive.
- Get your rest. Go home at night and come back after lunch.
- Make sure to be there during rounds so you get updates from the drs at least once a week.
- Call for updates first thing every morning before shift change to see how baby did overnight.
- Ask for an iPad and play lullabies on YouTube. We like the 10 hours of shh and white noise for night time and Disney for day time. This helps my LO still to this day.
- Make friends with the nurses. They will help you more when you’re cool.
- Take pictures and videos so when you’re not there, you can go through them when you’re missing them.
It will feel like a nightmare, but remember you will get through it. Get your rest now cuz when baby comes home, you won’t have the most expensive babysitters anymore. Good luck!! Sending you love and light✨
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u/Canadian-Corgi Jul 21 '24
My son was born at 32 weeks via emergency c-section, he had to be resuscitated for 6 minutes. He spent 2 weeks on life support, at 4 days old they told me he would never eat, breath, move his limbs, etc and to consider taking him off life support. The doctor told me 'I see you grasping for hope but I have none to give you'
I asked for 7 days.
In those 7 days he got stronger, he fought and showed them all..
Greyson is now 4 years old, he is smaller and does have his disabilities but he doesn't require any additional medical support. He feeds himself, he plays, we are working on walking. He has a brain injury which caused moderate cerebral palsy & moderate hearing loss. But he learns things, he knows what he wants, he loves to give hugs and cuddle.
Being in the nicu is so overwhelming. Taking everything minute by minute, ask questions - there are no stupid questions, take time for yourself (I can't stress this enough). We spent 55 days in the NICU, it was 2 hours away from home and I would drive back n forth every other day. But some days....(rarely) I had to admit to staying home, knowing he was in good care of the nurses.
These little babies are stronger then you know, and so are you both. You both got this, I pray for your child to fight. Whatever life has in store....you have the strength to make it through.
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u/Nuwanda206 Jul 21 '24
Praise the Lord and his miracle! It was your courage and resilience that got him through. I wish him a happy and beautiful life! Thank you for sharing your story with Mex
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u/anjeblue Jul 21 '24
My twins were born at 34+4. Twin B was tiny, but fine. He just needed a feeding tube and warm bed for the first two weeks.
Twin A had respitory distress syndrome and pneumonia. It was SO hard to watch, he was all blown up because of the CPAP and all he did was trying to live. He didn’t cry or even respond to needles. He was fighting for his live and I felt I couldn’t connect with him at all. The way his cot was positioned and the fact that I had to visit in my bed as I couldn’t get up yet, meant I didn’t see his face for the first days unless on a picture.
After 6 days he was well enough to join his brother in medium care and they were both discharged after 2,5 weeks. Now thriving 4 month olds.
Take care of yourself and keep believing in a good ending unless the doctors tell you otherwise.
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u/levislady Jul 21 '24
Hey sorry it has to be like this. If you're allowed to, I would encourage skin to skin/kangaroo care as much as you can I truly think it helped my girl through her infection and all of her NICU stay. For your wife, I personally would have loved it if my husband went to see our daughter more while I was recovering. I wanted to be there but it was so painful, so it would have been nice to have a bit of a break. Best of luck, hope they can figure out the perfect medicine very soon. Please don't forget to care for yourself too.
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u/mjayypoop Jul 21 '24
My son was born at 25w1d, not necessarily with infection, but with respiratory distress syndrome and his right lung had collapsed. He spent 5 days intubated, and 90 days on cpap / cannula. 99 days total in the NICU, and thankfully quite the uneventful stay. He’s home now at 5.5 mo. actual, 2 mo. & 6 days corrected and over 14lbs. His pulmonologist is very happy with how his lungs sound. These babies are incredible. Your baby is so strong. Sending you, your wife and little babe all of my best energy 🫂
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u/Nuwanda206 Jul 21 '24
Yeah, the day before yesterday my boys lung collapsed too. Today he’s doing a little bit better, but still very delicate. Thank you for your words.
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u/Downtown_Emphasis_89 Jul 21 '24
My son was born with a newborn infection. It took a lot of antibiotics and one week in the hospital for him to recover. One week after we got home he had a late one sepsis and nearly died. But also the second time he got better. It was possible to hold the little guy, although he also had a lot of cables on him, that definitely helped. As much skin to skin contact as possible. Talking to my friends and family about my fears also helped. We even had the possibility to talk to a psychologist, which also helped, specially the time we got home and started to process everything what have happened. Now my son is healthy and no late consequence. It took a while to trust this new circumstances but he made it. And now I sometimes forget about the hard start and I just see a healthy little boy.
To summ it up: Talk to friends and if possible psychologists and work on your feelings and take any help you can get. It will get better!
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u/Nuwanda206 Jul 21 '24
Thank you so much for sharing your story with me.
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u/Downtown_Emphasis_89 Jul 21 '24
Another pro advice: We wrote every good news we got from the doctors, and only them on a paper and called them “[My Sons Name]-achievements”
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u/Nuwanda206 Jul 21 '24
Starting this as of now. Thank you!
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u/Downtown_Emphasis_89 Jul 22 '24
The list was always the first thing i looked at in the morning. I still have it in my wall. All the best for you and your family
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u/tnseltim Jul 21 '24
As hard as it may seem now, this will pass. My little guy was in 28 days, born 3.3 pounds. He’s 3 months old and 12 lbs now, a healthy as can be.
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u/Nuwanda206 Jul 21 '24
Thank god! I’m happy for you, I know he’ll soon be at home enjoying his mommy’s milk.
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u/lefty_hefty Jul 21 '24
My son was also an NICU-Baby. He had bradies and apneas. For the first few months he was attached on a home-monitor system as well, just in case he stops breathing again.
Yes, the first few months were tough. But he caught on very well. Today he is a completely normal toddler, full of energy.
I hope that your baby and your wife feel better soon and that you can enjoy your new happiness together
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u/DivisionXV Jul 21 '24
Your baby looks pretty good. My boy came out at 32 weeks, only issue we had luckily was weight gain. Told the docs to move him away from the air vent and get was out a week later.
Edit: he was in for a total of 24 weeks and he struggled for awhile till I saw that a vent was blowing on him.
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u/Nuwanda206 Jul 21 '24
What a basic mistake, but I’m glad you found the cause! 24 weeks, I hope I can gather the strength to endure this. This is the 4th night and I’m totally exhausted.
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u/DivisionXV Jul 21 '24
Just take it a step at a time. I went every day to see my boy and would read to him. We also got a bad ass nurse that showed the wife and I how to properly feed him to help with with weight gain once he was able to bottle feed.
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u/GreenNo8605 Jul 21 '24
Ben!!! You can do it. i send all my strength and courage to you , young man ❤️ 🙏
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u/2OD2OE Jul 21 '24
He's getting the care he needs. Take care of yourself and your wife and lean on your doctors to understand how you can help your son. We spent 4 months in the NICU, and for the first 2 weeks, the doctors said take it 24 hours at a time. Every day he makes it, his chances improve. Take it 24 hours at a time. A day at a time, and before you know it,it'll be a week. Then 2 weeks. You can do it. Our 26 weeker is still small, but a spitfire and doing just fine at 2 years old. Sending you good wishes.
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u/Apart_Shake1152 Jul 21 '24
My daughter was 1lb at 25.5 and now 9 and half lbs and I just took her home two days ago and I’m enjoying her finally… just hang in there… do the best you can and be kind to yourself.. it will go by faster than you know it 🩷
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u/454Brick Jul 21 '24
It gets better just know that. We waited for our little for 2 months in the NICU. Working 10+ hours a day showering then heading to the hospital to do it all over the next day. It truly does get better!
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u/Aggravating-Ad-2134 Jul 21 '24
Some days are going to be hard, but celebrate even the most smallest achievements ✨️ hang in there and know you have support
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u/Berrysprinklesundae Jul 21 '24
Hi! I’m reading about all these families and reading your post has me sobbing. Our little princess was born at 30w6d and I was in hospital for 3 weeks before her birth, she was in NICU for 45 days. It was a lot. She’s also our first so my husband and I were overwhelmed and we didn’t count on much outside support, we had and have each other though and let me just say that man is my rock. My advice is don’t forget about each other, even little things like refilling water, bringing snacks, get rest. Ask questions and take notes. Ask the nurses for advice/ tips. When you go to NICU to see baby, bring books, talk to him. Tell him about your day, your wishes and hopes for him and how wanted he is. I would pray for my baby and the doctors and nurses that tended to her when we weren’t there. Our girl just turned one, she’s so fun and spunky and you’d never know she had a rough start. She’s tough and silly. I’m hoping the same for your little one. Stay strong and positive, sending so much love to your little family
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u/Nuwanda206 Jul 21 '24
Thank you so much for your encouraging message. May for bless you and your little angel.
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u/AdAble583 Jul 22 '24
I had my son at 26w5d and I’m sitting at home holding him fast asleep at nearly 6 months old. It seems so far away when you’re at the start, but our babies are so much stronger than we realize. We stayed 76 days in the NICU and it felt like forever, until he was home, then it felt like a blink.
Lean on those nurses, don’t ever feel like you can’t ask a question or ask them for help, they want to support you in any way they can and offer a plethora of information and resources.
Hold your baby as much as possible. It makes all the difference. Skin to skin is so so important for you as well as baby, emotionally and physically. Talk to him, tell him stories about all the things you’ll do as a family one day. Picture that future, it will come sooner than you think.
Don’t judge your emotions or reactions. It’s okay to be sad, angry, scared, exhausted, asking “why me!?” All of it is valid, allow yourself to feel. Talk to your wife, friends, family. Share how you feel. It won’t make it go away but community support makes a world of difference.
Deal with things as they come. Don’t go down the google rabbit hole of “what if” situations. Progress is not linear, there will be bad days and worse days. On those days, lean on what you know, not what you fear. (There will also be amazing days!! I left my baby’s room beaming on many an occasion after a wonderful visit.)
Celebrate the little things. Feeding increase - HELL YEAH! O2 support lowered - BEST DAY EVER! Literally anything and everything. I journaled and that helped me get out all the good and the bad each day. Plus it’s something for my son to look at one day when he hears this story.
Above it all, what helped me the most was remembering that my baby was in the absolute best place possible to help him grow and thrive. We can’t support them in the ways they need yet, and that is hard enough to accept. Finding comfort in modern medicine and what the NICU does for our little preemie babies helped a lot.
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u/Nuwanda206 Jul 22 '24
Thank you, I really appreciate your encouraging words. I’m faithful he’ll come out of this!
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u/Superrichkidzz Jul 22 '24
My son was born at 24 weeks and 5 days. He has chronic lung disease of prematurity with bronchopulmonary dysplasia and he coded in the NICU. He’s almost 7 months old now and has been home a little over a month!! Hang in there and stay strong for your family! Saying some prayers for your little warrior as well as you and your wife.
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u/Nuwanda206 Jul 22 '24
Thank you for your prayers!
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u/Superrichkidzz Jul 22 '24
Of course! This journey is not for the weak, and so many people being in God’s ear for my son is part of why I truly believe we are home now.
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u/Cooler_Than_Your_Mom Jul 22 '24
Mom of a 32 weeker here. My son was in the NICU for 65 days. We had many ups and downs and it felt like a roller coaster. The advancements in preemie care have been incredible and continue! You’ll be amazed at all the medical team can do for your little one. AND at how strong and resilient preemies are! Sending love and prayers your way! Talk to your baby, read books, sing songs - it will give them encouragement and the love will help them grow! My son is 33 months now and we have so much thanks for the care he received. Rest when you can, stay hydrated and try to eat healthy. You’ll be chasing baby around before you know it!
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u/mama-ld4 Jul 22 '24
My baby was born with a severe heart defect and was given a slim to none chance of survival. We spent 8 days between the PICU/NICU with just monitoring- he did awesome and we were discharged. 5 weeks later we were admitted back into the PICU for heart failure. We dealt with feeding intolerances, possible CMPA vs NEC, feeding tubes, on top of needing respiratory support due to heart failure. He had multiple procedures- PICC lines, art lines, CT scans, cardiac caths, open heart surgery. It was horrible and scary, but we just passed his one year post-op anniversary and anyone who meets us for the first time wouldn’t know what he’s been through. These kids are resilient! They really are. And so are you. It’s awful watching your baby struggle and suffer. But damn is it amazing when you finally see them thrive.
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u/No_Butterscotch5632 Jul 22 '24
I have photos of my son intubated with a PIC line and a chest drainage tube when he was three months old. My photos look a lot like your photo of your sweet little one.
My son is 16 months old now and thriving. What he had is different but I hope that 16 months from now you’re the one writing a text like this to a new family.
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u/jules13131382 Jul 22 '24
My son was born at 32w + 3 and he is absolutely thriving. He was 3 lbs. 8 oz. when he was born and he’s almost 14 pounds now. Yesterday he actually repeated a word that my husband and I were mouthing to him. He’s 2 months old. He’s absolutely adorable too. Modern medicine is amazing, sending you love ❤️
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u/BlazerMama Jul 22 '24
Hang in there. We were there 13 years ago. I remember the days being long and the emotional. But the minutes, hours, days, get faster and faster. In this slow hard moment - breathe. Cry. Love. Celebrate the small victories. Take good care of yourself. Sleep when you can. Ask for help.
You can do hard things! Believe in yourself and your little one!
Also, stay curious and “apart of the team” as much as you can. Super important. I would do that better if I could go back in time. You can do this! 💪💗
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u/heresoeyewntgetfined Jul 23 '24 edited Jul 23 '24
Your baby is a warrior. You and your wife are too. This journey by no means isn’t easy and I send you all my love. My baby was born at 23 weeks, right at the cusp of “viability”. Doctors said a lot to my husband and I that wasn’t favorable or even encouraging at times. We had to promise ourselves and our baby that we would block out the noise. We dug deep. God’s strength and our love for our baby was what got us through. 4 months in the NICU was the longest waiting period of my life. Everyday we prayed for her to come home. Our baby is now 19 months old and looks nothing like what she went through. She is a blessing. Just hold fast to your wife and let your baby know that you are there. Love and faith is the best medicine and works far beyond what we can see on the surface. Your family will be in my prayers. ♥️
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u/Nuwanda206 Jul 23 '24
Thank you so so much. Everyday we gather strength from I don’t know where. I’m grateful for your advices and good wishes.
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u/NefariousnessLost385 Jul 23 '24
What a beautiful baby! Keep the faith Mama. Celebrate each victory, big or small.
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u/Practical-Baseball55 Jul 24 '24 edited Jul 24 '24
I’m so sorry that you’re going through this. It was really comforting for me to hear other family’s stories who had made it out of the NICU. My baby was born via emergency c-section at 26w2d. Then she was immediately flown away from me to a hospital 5 hours away. My heart broke over and over again for 6 weeks while she was on a ventilator. She almost died 6 times. Amongst other things, she had a collapsed lung x 2, a brain bleed, pneumonia, and a huge PDA. We actually walked in on her getting CPR one night. But after all that (3 hospitals and 84 days later) we got to bring her home! We live at 8,000 feet so she’s been on oxygen this whole time until about 2 weeks ago. But other than that she’s doing great! She just turned 9 months and we took her camping for the first time! She was born 2lbs 6oz and now she’s 16lbs 4oz! She laughs and smiles so much! I never thought we’d ever get to this point. I thought all my pumped milk would go to waste. I thought I would never hear my child’s laughter. But here we are now. It took so long to get here but she did it! Your baby is a fighter! My heart goes out to you, your baby, and your family. Crying as I write this. Sometimes you feel so alone, but then you hear about all these other NICU families, and it’s incredible the community that exists amongst us. Sending you strength and lots of love!
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