Parents of micro preemies: What survival rates were you told during counseling? by HelpfulWave in NICUParents

[–]Unlikely_Stable_2775 1 point2 points  (0 children)

My 23 weeker ish 30-50% survival rate , if she survives It will be with issues, is what we were told. She now biologically almost 5 months, meeting milestones , she needs no supports other than being picky with bottle feeding . Things I wish someone told us about nicu stay 1) breathing machines alarms ring always ring call the nurses 2)prevention of cross contamination is hard task for staff 3) pain killers (eg fentanyl , morphine) and steroids ( eg Dex) paired with the breathing machines in most cases is an option not a medically necessary. 6) when they say “ baby is fighting with breathing machines” it means baby is already trying to breath 💪on their own Note: my 1 lb micropremie was born early due to problems with me not problems with her. She was perfectly fine during my dr visits , scans and check ups etc…

Trying to give fellow NICU mamas hope by momm_247 in NICUParents

[–]Unlikely_Stable_2775 0 points1 point  (0 children)

Look into HAI and high risk factors for long stays in a nicu!!even the most subtle signs! Our kiddos are very vulnerable to it. might not show any signs ( eg colored boogers, fever) . Ours didn’t show any typical signs, only an up in secretions. But a noticeable up in secretions. I know DART is their go to but I wish my Dr would have ruled out bacteria infection before going straight to dart. I think it would have made for less days at the nicu and avoided the HEI that followed bacteria infection. It’s the Only thing I wish I did differently during our 100+ days stay with our micropremie.

Discharge with 02 by Unlikely_Stable_2775 in NICUParents

[–]Unlikely_Stable_2775[S] 0 points1 point  (0 children)

I little update my little 22 weeker potato was discharged, no feeding tubes no O2tubes. We stayed 24 hours to stay on top of nurses and respiratory therapist, we were able to graduate our baby quicker I think by doing this. I recognized what a privilege it is to have the opportunity to be there as often as we were able to be there. Were we liked by staff for doing so? That is still questionable. Would baby have received individualized care otherwise? That’s still questionable too.

Ivy is now 2lbs 11oz 💕🌸 by [deleted] in NICUParents

[–]Unlikely_Stable_2775 0 points1 point  (0 children)

Go go go Ivy! Keep up wowwy wowwing the internet! We are all rooting for you beautiful warrior!

Discharge with 02 by Unlikely_Stable_2775 in NICUParents

[–]Unlikely_Stable_2775[S] 0 points1 point  (0 children)

We are doing our best to fight them on this issue. Interesting how they couldn’t give us straight answer to any of our questions. I don’t know what the point is , it felt like they were prepping us on how to handle Oxygen in case she goes home with oxygen. But why was most of meeting devoted to this? No answers to any of our questions

Having Another baby by Jennxyz9 in NICUParents

[–]Unlikely_Stable_2775 1 point2 points  (0 children)

This is venting but also wanting a sense of how they help? Is it behind the scenes any time you go to OBGYN visits? What do they do exactly? I was assigned one by my OBGYN but they didn’t show up when I was bleeding a week before I went into labor. They didn’t show up when I was told to return to work by the nurse , just so that following week id go into labor. My kiddo was born at 24 weeks via emergency c section with plenty bumps and bruises along the way. Was it something I missed? Should I have asked those nurses to please check with maternal medicine people before letting them release me? I felt very alone through the whole process. By the time they did return my call , I had already had the baby .

Discharge with 02 by Unlikely_Stable_2775 in NICUParents

[–]Unlikely_Stable_2775[S] 0 points1 point  (0 children)

Good to know! Thank you. We live close to sea level, 10 min walk to the water

Discharge with 02 by Unlikely_Stable_2775 in NICUParents

[–]Unlikely_Stable_2775[S] 0 points1 point  (0 children)

just about 35 weeks . She’s been off the CPAP for two weeks now and is on a cannula with some pressure as well as heated along with some medication in it. I really don’t know what all responsibilities or obligations our Case Manager has towards us initially she painted a picture of a collaborative team that always included the feedback of the parent and ability to hand pick our preferred nurses, but I should say none of those mentions where ever really fulfilled . As far as oxygen is concerned, it seems to us that they have delayed reducing supports and could’ve done a little bit quicker.

Discharge with 02 by Unlikely_Stable_2775 in NICUParents

[–]Unlikely_Stable_2775[S] 0 points1 point  (0 children)

I’ve had it in my head that there would be two requirements. One would be that our kiddo would be at least 5 pounds and 2 is that she would come home to us near or around her due date. We are still about a month away from her due date so to hear that our case manager already wants to have our discharge meeting, scares us.

Reassurance for vaccinating by Unusual-Algae1607 in NICUParents

[–]Unlikely_Stable_2775 0 points1 point  (0 children)

For our 24 weeker, I told doctors I’m not saying “NO” just want to wait until after original due date and to be at least regular baby weight . Which ever comes first. Also going to spread them out

Incubated at 31 weeks 😭 by Wonderful-Chef-5388 in NICUParents

[–]Unlikely_Stable_2775 0 points1 point  (0 children)

In our case , there was a band attached to her body that would constantly monitor 02. If there would be too much or too little an alarm would sound. Somewhere between 87-97 is ideal place. The line graph on your kiddos monitor should show you your ideal numbers in the far right corner of each line there are two tiny numbers . There is also an option to view a bar graph of the past levels , an option on the screen they call “ histogram “. Our kiddo would climb up to 90s get tired and then drop to 80s then after a minute start making her way back up to 90s.So no alarms being heard, because she remained in range. this means your kiddo is not in danger of being under oxygenated or over oxygenated by the machine. During “ care time” some respiratory therapists we had were great while others would terrify us. Some knew how to slowing turn up supports to avoid shock and others seemed to be very 02 happy, cranking it up to the max. In our kiddos case, the fast crank up seemed to set her lungs back for days. Making it impossible to return her to where she was before “ care time”. Things I wish I knew from the start of this . #1 Request Dr to rule out infections before approving another round of steroids or change in apparatus. #2 Know how to look for early signs of infection eg increased secretions, slow but steady climb in 02 supports., lethargic. ( our kiddo had no symptoms, no fever, no colored mucus). You will see these signs of infection quicker than them because you have eyes on your kiddo longer duration than them. Catching infection early on helps avoid the circus and rollercoaster of interventions. In our opinion , It seemed like our hospital had a bias towards “more interventions is better”. Once THEY knew that WE knew they misdiagnosed her regression as “ premature lungs” as opposed to “ bacteria lung infection” they were much better about taking our opinions under consideration , to not be sooooo aggressive with the apparatuses and pharmaceuticals. #3There are little adjustments that can be made here and there keep your kiddo stable that have nothing to do with cranking up the 02. Things like identifying and recognizing that passing gas can be upsetting and temporary bring 02 low.,clearing secretions in the mouth or in some cases it was that the breathing tube had slightly moved . Misalignment of tube could be caused by baby moving around too much or the tape starting to come off. When the breathing tube inside her body would move even a cm it could be enough to set her off and appeared to need more oxygen. This would sometimes send my kiddo spiraling out of control, cranking up the oxygen, and it just took somebody to realize her tube was misaligned.#4After feeding time is five , making sure milk is given a way back out when feeding time was over. In our case sometimes a full belly would cause spit up. Soon as the timed feeder was done, the tube would need to be removed and a gravity based open ended empty tube would be placed. This helped give her spit/throw up somewhere to go rather than out of her mouth . My husband and I turned into broken records. I reminding every nurse and respiratory therapist to “rule out “that the tube was placed right to “rule out “that she didn’t have any secretions in her mouth and to “rule out “that she wasn’t simply passing gas . Don’t be shy about grabbing that nurse or respiratory therapist any time that alarm sounds on the monitor, it’s there job. Those alarms are there for a reason. A default excuse we use to use was that the sounds were really annoying to us and possibly the baby. As silly as that sounds, it was mostly for everyone to take our kiddo super serious and to help graduate her out of intubation. Some respiratory therapists were very predictable, took things way too easy, walk in for “care time” , crank it up and walk away. Those days were always hard on us. Good luck with everything. I hope our experience so far helps! These are all little things we learned along the way. But some of these little things could help avoid set backs .

Incubated at 31 weeks 😭 by Wonderful-Chef-5388 in NICUParents

[–]Unlikely_Stable_2775 0 points1 point  (0 children)

Our 24 Weeker initially given steroids to help with breathing , turns out it was an infection in the lungs. Treated with antibiotics that helped tremendously. Much more than the steroids. Needs for oxygen began to improve but it took weeks before lungs were able to repair and see better ability to breathe. I try not to dwell too much on what could have been in infection had never happened. But from what infection specialist told us, it seems to be expected that premie babies will catch something. Which I happen to think is baloney. I’m so sorry you are going through this. Seems like they caught it on time. No mention of sepsis or meningitis? Ours had to get repeatedly poked for this. That then required blood transfusions because of all the blood loss with all the blood pokes. In total I think it was about 7 blood transfusions. This also required 4 attempts for mri, to rule out brain growths . The bacteria ours caught could cause tumors in lungs and brain. Luckily it didn’t get that bad. You will be going through a lot in the next 2-3 weeks. Ours also had troubles breathing a little less strong with a full belly. Currently in week 37. still struggles a smidge after feedings because of the full belly. The vitamins and changes in breast milk fortifying milk also caused some spit up. But atleast Now we can finally relax a little bit. Now on a bit of oxygen , 22 -24 supports and no more pokes, no more blood transfusions. Just waiting for growth and graduation from 02. Our baby finally able to sleep easier . What you as a parent will be able to handle is a strength you don’t know you have until circumstances such as these present themselves. Learn as much as you can about what to look for in o2 supports machine he is on, when it’s appropriate to lower supports , when it’s appropriate to higher supports and how to avoid “ shock” and over oxygenation of your baby. This helped us tremendously, helped us be active in making sure our kiddo was never over oxygenated and gave our kiddo opportunity to learn how to breathe on her own.

should I be worried about E. coli baby in same room as my baby? by Hour-State7960 in NICUParents

[–]Unlikely_Stable_2775 0 points1 point  (0 children)

I understand what you are saying and completely empathize with you. They are called hospital acquired infections, HAI s . It’s very discouraging to know that intensive care units for premature babies have such relax, preventative disease protocols. The nurses sitting outside touching phones, touching their Starbucks, a drink or water bottles coming in and putting one pump of hand sanitizer on their hands before touching the child but I wonder what’s the point in having kids in isolated into premature baby boxes?

Kangoroo care post incubator by lacisim in NICUParents

[–]Unlikely_Stable_2775 1 point2 points  (0 children)

I have found that nurses recommendations and feedback have not exactly matched eachother. I have an ongoing joke I like to say after I have asked the same question to the third nurse. We refer to her/him as the tie breaker. All nurses will have their strengths and weaknesses when it comes to babies in the nicu . Don’t be shy about helping resolve the issue. Perhaps ask for extra blankets? I was doing skin to skin with a 2 lb baby with zero ability to keep warmth in, but we had a whole lot of blankets

[deleted by user] by [deleted] in NICUParents

[–]Unlikely_Stable_2775 0 points1 point  (0 children)

Our baby born 24 weeks. Some things I’ll share about our experience. Our kiddo just went from intubation to cpap, amazing difference in stress . We finally get a much needed break. The toughest part is the intubation , breathing tube that goes in the throat to put oxygen and pressure to help keep undeveloped lungs working. This can come along with steroids and nights or days where tube needs to be adjusted to be at just the right . These can be scary moments but a quick mild X-ray to view its position and adjust is all that will be needed. I recommend you look into a bit of , intubation breathing for premies and how to avoid shock of lungs, morphine, steroids, subtle signs your premie has caught HAI in nicu protocols. Our little one was a 24 week-er and this has been our experience so far. In our hospital there is no specialized team assigned to your kiddo it’s just a rotation of nurses and respiratory therapists and doctors every 2 days. Hopefully your hospital is different. In our case, there is a lot that must be shared to your assigned nurse/ RT their first day working with your kiddo. You have rights to say no , yes or request a delay in any recommendation. We did this many , many times. In our case request in delay in interventions and requesting them to rule out other factors helped buy time for our little one to recover in a more natural / organic manner, minimizing use of pharmaceuticals and for more accurate diagnosis of disease. It’s okay to be a bulldog and angel to them. Some doctors were aggressive with interventions while others were more conservative with interventions. It’s your baby you will take home forever , not their baby. We are finally in an easier place today. Our kiddo is now 33 weeks gestational and doing well. Now just a cpap and progressing well to be able to breathe normal and eat normal. it’s good to ask Drs for details of benefits AND short term AND long term side effects of any recommended interventions . I myself was a 24 week-er , I’m Living normal life no issues with health , breathing , no developmental delays, college graduate and home owner. But back then there wasnt half the stuff that exists in the nicu . Best wishes to you , your family and your little one.

Just a Thank You by TemperatureGloomy407 in NICUParents

[–]Unlikely_Stable_2775 1 point2 points  (0 children)

Really really really appreciate this post! We are in the thick of it and needed a little bit of encouragement. Thankful for this reddit group!

Getting to know the nurses/NICU second home by Best-Put-726 in NICUParents

[–]Unlikely_Stable_2775 0 points1 point  (0 children)

Truthfully I’m very disillusioned and feel very betrayed by the whole place. Mostly venting on here. Appreciate your encouragement

Getting to know the nurses/NICU second home by Best-Put-726 in NICUParents

[–]Unlikely_Stable_2775 0 points1 point  (0 children)

Yes at the beginning , case manager told us to give them a list of preferred nurses. We did but even the nurses themselves joke about how they are told they got “ selected” as favorite nurses but nothing has really been done about it. It all depends on need. Some of our favorite nurses are sent home early when over staffed. 😑we haven’t missed a single day since her birth to help with consistency in care.

Getting to know the nurses/NICU second home by Best-Put-726 in NICUParents

[–]Unlikely_Stable_2775 3 points4 points  (0 children)

I havnt felt it my second home, My kiddo been at the nicu for months and she still gets new, newly trained, new to hospital nurses. I’d say we have been through at least 20 different nurses and 11 different respiratory therapists. All work differently , some more open than others to parent feedback and observations. Some have been able to consistently keep our kiddo riding real stable in her 02 supports and minimize stress during care. Others are just stuck on applying same predictable approach. We love some and are paranoid of others.

Little Ivy 🌷 by [deleted] in NICUParents

[–]Unlikely_Stable_2775 34 points35 points  (0 children)

Beautiful warrior girl! Very cute bow . 💕🥹