62 days in. My 31 weeker is almost a week post op from his ostomy reversal (first surgery due to NEC) he’s doing amazing, bottle and breast feeding, in the 78th percentile - yet after our weekly meeting with doctors and nutritionists I feel like we still aren’t seeing the end. Our main doctor is heaven sent and is very optimistic but the nutritionist and social services lady who runs the meeting don’t seem to be. The nutritionists tells us his goal feeds could be different a month from now - a fucking month from now? I don’t want to be here for another month. Then social services wants to schedule our next meeting and suggests 3 weeks from today and my mood just gets worse. Our doctor interrupted and suggested we play it by ear because we aren’t sure what 3 weeks will look like from now. Feeds are the only thing we are working on and for him to be as healthy and big as he is for all the problems he has had…I can’t come to understand why we aren’t preparing for home by now. I’m so tired. I sat in the pump room after the meeting and just cried. I’m so ready for my baby to be home.

My 8-month-old isn’t teething yet, and thank god for that, because physical therapy should become much lighter once she starts crawling, which will hopefully happen in the upcoming month.

If teething does happen sooner, though, I’m genuinely terrified of how I’m going to manage everything. She’s generally such a sweet baby and has been sleeping through the night since 2 months old, which I presume is because of the intense PT.

But I’ve heard nothing but horror stories when it comes to teething, even though google assures me it’s just “discomfort” for an average baby.

Any parents here who stuck with intense PT through teething periods? Any advice?

Thanks!

I know people mean well when they say this. And normally I’m not really one who gets too worked up or passionate about the whole “not commenting on people’s bodies”. But hearing this stings when the answer is “well that’s what happens when you don’t get to finish the third trimester”. I wish people would understand what this kind of comment means to a NICU mom

Our little girl (born at 26+2, now 30+6) has been doing so well this week, a lot more stable, more alert and active, it has been lovely interacting with her and seeing her trying to take in the world around her.

At the ward rounds last night there were talks of monitoring her for another day or two before considering maybe reducing the peep on her bubble cpap. All in all a very positive few days.

Then today she suddenly took a turn. The overnight nurse had handed over that she had a few desats during the night. When I arrived this morning her nurse commented that she seemed quieter and less active than usual but other than that had been fine. Then at around 1pm she just started having desats, bradys and a couple of apneas pretty much one after the other. Seeing her so weak and lethargic was really hard, especially as it seemingly has come out of nowhere.

They’ve done a chest x ray which looked fine so they’ve run a septic screen to check for infection.

Just so hard seeing such a dramatic change in her and not being able to do anything to help her. Hopefully tomorrow will be a better day.

Hello, my sweet little baby boy is in the NICU he was born at 25 weeks and 5 days they did everything to try to keep him in but unfortunately it didn’t work and I’m very thankful that he’s here. So now I know what it means when they first tell you that he’s going to have some good days and bad days in the NICU. Today I’m not processing it so well he has an open vessel in his heart which is pretty common when they’re born early and they tried to use Tylenol to close it with a 7 day round of it and it closed it from 4mm to 2.8mm but it’s still considered large. Now the next step is they’re going to try indomethacin on him for 3 days starting today every 12 hrs but they said it can cause side effects if gut issues so they’re stopping his feedings starting this evening until Thursday morning which has me in a mood he’s made so much progress with eating. He’s officially 3 weeks and 2 days old and has went from eating 2ccs to now at 24ccs and being born at 1lb and 15oz to now at 2lb and 13oz I’ve noticed that he’s gets really antsy when he doesn’t eat the reason I know this because they had to skip two feedings to give him a blood transfusion just recently but I wasn’t aware of them skipping feedings until we went up there and was told by the NICU nurse. And maybe I’m in my feelings because I don’t want to see him hungry and I know that this medicine could help his vessel close in his heart which afterwards they can finally wean him off the ventilator but it really hurts my feelings that my baby will be starving for a whole day in a half and I’m having a really hard time with this because it almost seems like I can feel his pain and I never want to see him in pain.

Signed A Sad Mommy

Today I bumped into the mum of a NICU baby my baby shared the ward with about 6 months ago. It was so nice to see the baby looking big and recovering from all the various health issues. We exchanged our stories and experiences post discharge and it just felt really wholesome 🥲

My daughter (4mo adjusted, 8mo actual) has home oxygen and a home ng tube. Unfortunately, she has started reacting to the tapes on her face, and both cheeks are constantly red and covered in blisters. The doctors haven’t been able to give us any guidance or alternatives to the tapes.

Now, my daughter is constantly pulling at her tapes, and she is getting strong and coordinated enough to pull them off. She pulled them completely off four times today! Not only is that unsafe, but I’m sure it is making her skin even more sore. The only time she stops pulling is when I give her Tylenol, but I don’t want to give her Tylenol 24/7 for however many months she will still need these tubes.

Does anyone have experience or advice for keeping tape on your baby’s face?

Baby started gelmix finally yesterday, and it’s so hard to get to 98.6-100° for the right temp with our bottle warmer. Does anyone have one they recommend? Or anything good? Let me know please I’d love to figure this out. I know someone said microwave but my speech therapist said absolutely not. Let me know! Any warmers you loved? Thanks!!!

Just a few days ago we brought baby home from a three week stay in the NICU. I really wanted to breastfeed and baby was latching but he was struggling with eating in general. The nurses/lactation team were supportive but I was told just to try one or the other (breastfeeding or bottle feeding) per feed so he didn’t tire out. As he got more used to the bottle, he started crying when I would attempt to breastfeed. Since the breastfeeding wasn’t really counting towards his volumes anyway, I gave up trying and just bottle fed in the NICU with donor milk combined with my pumped milk.

I found pumping exhausting and frustrating, especially because my volumes were low and I was barely producing even a ML when I wasn’t at the NICU but I kept it up in hopes I could transition to breastfeeding. I tried supplements recommended by lactation.

I thought when I got baby home my supply would increase but that’s not been the case. At first, I was able to make nearly a 50/50 formula/breastmilk mix but now I’ve been having to use around 80- 100% formula. My supply has gotten even lower and probably because I’ve missed pumping sessions. With baby eating every 2-3 hours, by the time I prepare the bottle, feed him, hold him, pump and clean everything, I’m lucky if I have even 30 minutes to spare to get some rest. I try to prioritize pumping but sometimes I have no time between feeds. Since I’m barely producing anything, the pumping feels almost pointless but I’m having a hard time giving it up because I know it’s good for him what little I can produce.

I tried breastfeeding once at home but I’m scared because I never really got the hang of it in the NICU and feel like I don’t know what I’m doing. I want to make sure he has enough to eat, especially with my supply low, and I don’t know if trying both will exhaust him. I’ve been sleeping maybe 3 hours per 24 hour period and don’t know how long I can keep up with pumping. I’m feeling discouraged. Any words of wisdom?

I was diagnosed with preeclampsia at 32 weeks and was induced at 35 weeks with severe features. We have been in the NICU for 9 days so far and it’s so hard not to compare your story with others with similar aged babies who have already gone home by this point. Our little one is just working on feeding and is teetering around 50% of feeds by mouth. Of course we have to get to 80% with consistency and some days it feels like we will never get out of here. Not looking for much from this post, outside of just feeling not alone, I guess.

Anyone's baby also have this diagnosis after NICU graduation? What was the treatment protocol? Outcome?

Appreciate any feedback

Hi, my baby is 10 months old and will be having an open heart surgery soon to fix his medium to large perimembranous VSD and double chamber right ventricle.

Could you share your post operation experiences and advises on how to care for your LO at home?

Thank you!

I feel like this is neverending and we are sp close to getting our girl home..

Our girl was born at 34 and 6 - I had every hope and dream of the ideal pregnancy and birth plan that turned into an OB I was not happy with, misdiagnosed preeclampsia that was called Gestational diabetes, my water breaking that had me admitted to the hospital for a week and told something different every day about going home to wait out my labour to happen on its own and ending up being induced. Thankfully the birth was amazing for our first, while being the most intense experience ever.

My hopes were shattered after our daughter was taken to be checked over, only to find out she was a TEF baby and given 5 minutes of skin to skin contact before being rushed to NICU. She has been poked and prodded, moved to 3 hospitals after birth, second for major surgery and third for the remainder of her recovery which has come down to requiring her to feed with no NG tube assistance for a minimum of 48 hours before they will begin to look at discharging.

We are doing everything we can, asking for tips and tricks from nurses, having the conversations and working on ourselves to be skilled with our baby but always feeling like we are doing the wrong things and making her stay in the NICU because we can't feed her a bottle properly.

I am now terrified of food aversion from her having so much trauma on her throat in the first 3 weeks of her life that she is scared to drink and is on high alert all time.

I don't know what I wanted from this post more so then to get it off my chest because its so hard to talk to family and friends who just don't understand what is happening and I don't want to hear them tell me they can relate to my feelings when they don't see what we are dealing with every day.

I hope of you are a NICU parent as well, and/ or going through recovery with TEF baby that you don't feel alone through it because I sure do..

After a CT scan today it looks like we finally have a clinical diagnosis for LO’s continued labored breathing : NEHI. Still waiting on other genetic testing to come back to rule out anything else going on.

As far as I understand it’s quite rare…but I wanted to see if there are any other parents of NEHI babies here? Would love to hear tips, things you’ve learned along the way, or really anything about your story to help us prepare for this journey ahead ❤️

We are currently still in NICU with the goal of finding his baseline o2 needs so he can be discharged on o2 at home.

Hello! My son has his first early intervention appointment tomorrow. They will come to our home for about 3 hours. Can anyone share what happens during this time? Anything I should be prepared for or ask? Thank you!

Edit: my baby is 4 months actual 2 months adjusted

I need help!! 😅 My son’s pediatrician at his appointment today said we should start him on purées. He’s 7 months actual, 4 months adjusted. He has good head control, and does watch his dad and I intently when we are eating, but im scared 😅 I don’t really know how to go about it, and id love some advice! I know to start him with stage 1 purées. When do I offer him the purees? Is it immediately after a bottle? Before? An hour after? 😅 How much do I give him? If he doesn’t take to it I’m not worried, I will just try again in a month. I’m in no rush, but I would like to offer him purees since he’s not really great about drinking his bottles, and maybe he will be better with food. I do know formula/breast milk should be babies main source of nutrition until a year old.

My ex 29 weeker has scars from various IVs and lines, including heel prick scars. We found today what feels like a small ball under his skin on his heel, about the size of a needle. It looks/feels almost like a tiny wart but is it possible it’s just one of his scars with just extra scar tissue or something? We haven’t noticed it before but can’t say for certain when it started looking like that. He’s 16 months old now. Has anyone else seen something similar on their nicu baby?

So my daughter is 11 days old, born at 32 weeks gestation and has been in the NICU since she was born. She has at least another month of being here if not a month and a half and now that we are on a schedule and getting into a rhythm with visits and all, the reality of her medical bills that are up and coming are starting to sink in.

My insurance is decent but it has a 2200 deductible which has been paid from prenatal costs for this year with 20% after the deductible for hospital stays. We are trying to get her SSI since she qualified due to being significantly underweight for her gestational age but we are worried about that bill. I think we make too much with my husbands salary to qualify for Medicaid for her as secondary insurance. To make it even better I got laid off back in late Feb at 6 months pregnant and we were just making ends meet off of what my husband makes.

My plan was to find a job before I delivered but while I’ve had interviews, the hiring process is slow and she arrived 2 months early. Its always in the back of my mind that we might end up with a couple hundred thousand or more in hospital bills in a few weeks.

Looking for any advice on how people got costs down so I can start to make a plan.

Insurance and the med supply company we’re trying to work with have been an absolute nightmare lately, so we are looking into purchasing a used Infinity MOOG pump. Any families of gtube grads out there that might want to sell to us? We’re in the Northeast, USA. Thank you!

My daughter graduated the NICU almost a month ago (April 17th) and it has been the best feeling having my baby home. I am so incredibly thankful for the support this group gave me during our 94 day stay at the NICU and I hope to go onto support other families in the NICU. My daughter was 39 weeks and 2 days when she graduated and weighted 3450 grams. She is now 2 weeks and 6 days adjusted and probably 9-10 LBS 🥹🥰

Hi, We just had a 32+5 little boy. He needed some breathing support right after being born: he was on cpap, then got intubated for few hours bc of his CO2 levels and risk of exhaustion, but O2 was good. Got extubated and back on cpap and is doing good, they are considering weaning him off tomorrow. He has been tolerating well being out of mask on changes since this morning. He is less than 48hrs and is having some blue light for bilirubin (he was not considered jaundice yet, but bc of his trends they already intervene) and fluids bc he had some small variations on blood pH and creatine levels. I know this is a journey and we should take it day-by-day but I’m curious of what are the major setbacks with people have experienced even when baby was doing fine? Anyone with a similar case? I know every baby is different but it’s good to hear from other parents.

Last night I had a horrible dream about some end of the world event, and us running around like crazy. My preemie wasn’t in the dream but when I woke up, I said to myself oh lord, I wouldn’t be able to run around bc I need to lug these oxygen tanks, and I also thought, I don’t really have an emergency plan. So my question is do you have any emergency procedures? Or things I should keep in mind? Like how many travel tanks should I have? I should probably get a fire extinguisher? Do I need to know the nearest place I can get oxygen if I run out? Anything else? Do I need a generator? Thank you!

Our boys were born May 8th at 29+5. Both started on the vent, but our B twin has moved to Cpap 2 days ago & our A twin has remained on vent and been struggling with breathing. A has fluctuated on their oxygen & pressure quite a bit but has continued to struggle. We just got a call that there are large amounts of fluid in his lungs, particularly the left. They are sedating him and putting in a drain to remove the fluid and going to test to try to figure out the cause.

Anyone had something similar? I can’t even really find info on fluid in lungs as it usually comes up as Transient tachypnea but that usually occurs right after birth?

I was admitted at 21+1 for pprom, we laser ablation for twin to twin at 18 weeks. C-Section 4 days ago because of bleeding & contractions for me.

I just don’t know what to expect so anyone that has anything similar please let me know.

UPDATE: we’ve had some conflicting test results but it looks like either Chylothorax or an infection

My LO just had a follow-up swallow study last Tuesday that he passed! 🥳

He was previously on rice cereal for thickening and we have since been told to add an iron supplement since we eliminated the rice cereal and were only on a regular multivitamin.

Did anyone’s LO’s have a reaction to the barium or an added iron supplement? My LO had constipation for one day then looser green stools which I attributed to the iron now they are a normal color but a bit mucousy. We see pediatrician tomorrow so will bring it up then but he literally went to the bathroom 5 times today - green then back to the yellowish/gold normal but with mucous. I’m assuming the body getting use to the iron 🤷🏻‍♀️ no fever or anything out of the ordinary. And these are the only two ‘new’ recent changes/events. He’s been peaking on his witching hour phase that we hope ends in the next two weeks 🤞🏽🤞🏽🤞🏽but other than that pretty normal.

Support?

Hello all, I recently just lost my sweet boy on May 8th. He was 2 weeks old and the pain just doesn’t seem to make sense. I’m trying to find purpose, and in that I have decided to start a foundation in order to help premie babies and their families. From your experience if you lost a child in the NICU.. what would have been helpful to you during your NICU stay as well as post stay that you needed or felt if it was provided to you, you would have felt a little better. Please let me know and Happy Mother’s Day from our angel babies 🤍

Best Mother’s Day gift ever!! My sweet girl graduated from the NICU today and we were able to take her home. Her journey was only 16 days but it was so difficult.

She was born 4lbs 2oz on April 26th and is now 4lbs 7oz as of last night ❤️

After 4 months in the NICU and three surgeries (2 airway and 1 GJ tube placement) we are finally planning to head home soon. We will stay a couple more weeks to focus on feeding to see what progress we can make, then we will be discharged. I never thought this day would come. Like so many of you, we’ve had so many setbacks and many days we couldn’t see the light at the end of the tunnel. To all of you still in the early stages or middle of your journey - stay strong and know you are not alone.

Obviously we are SO happy to be wrapping up our journey at the NICU. But I wasn’t expecting to be this scared and nervous to leave. Baby girl is currently on continuous J tube feeds, and our path to any significant volume of gastric feeding is a long one. In the past, gastric feeds have caused scary heart rate drops requiring stimulation to bounce back - we will have to find a way to safely test things out at home. We will continue to work with speech therapy and PT from home once a week, but it will be a lot harder not having access to all of our amazing care team members every day at the hospital. All this to say, her care at home is going to be more complicated than we imagined. To those who have been discharged after a long stay and leaving with what might be considered a more medically complex babe, I’d love any advice, tips, tricks, etc.

Pic included of our sweet nugget after graduating to room air following her most recent surgeries!

I noticed my 32 + 3 weeker that stayed in nicu as feeder grower for 2 weeks(6 weeks old now and due date has not yet arrived may 17) has an inguinal hernia as well as umbilical. They can be pushed in but both come back out. Especially the inguinal when he cries. Should I be taking him to emergency or can this wait to see his pediatrician this week? I’m not sure how serious this is I do know 100% he has them both. I believe inguinal is both sides as well.

Hi all, my wife had an emergency c-section on Thursday at 31+3. Everything seemed to have went well. So far the baby is doing well. They tell us everything is pretty normal for a Preemie. She was much bigger than I expected but it’s hard to see other babies in the NICU doing well and farther along than she is. This was totally unexpected and we have so many questions that can’t be answered and it’s really so hard. Every movement and my heart drops. Especially the monitors and oxygen changes. My wife is having a hard time with this too, she feels so guilty for not being able to carry to term and that this is her fault. She was once told she might have a unicornuate uterus but then told she did not. Turns out she does and they found this out during delivery. I’m staying strong for her and trying to encourage her but it’s very difficult and so upsetting right now.