very premature babies

southphilly

Just wondering if moms of very early babies remember "turning a corner" in the nicu-when did this happen?  The nurses say it sometimes just magically happens, but I feel as though we've been treading water for a month.  Looking for inspiring stories.

 Thanks,

purplepuggles

i'm not sure what you mean by VERY early.. but DS was born at 27 weeks and he did magically turn a corner a couple times. at about 34/5 weeks for bottle feeding, and about 37 weeks for brady/apnea issues. he just all of a sudden got it one day with both things. i didn't believe them, but it totally happened. it was amazing *HUG* hang in there!

Rachel&Joe

Stella is a 29 weeker but seems more like a 26 weeker as far as how she has developed.

Anyways, we noticed HUGE changes when they administered a course of IV steroids for a week (decadron).  They got her off the vent which was a big step for her.  Maybe talk to your Dr. about steroids.  Then again, I am not sure what your baby's particular challenges are...

Hang in there.

southphilly

When was Stella able to get off the vent?  We are working on this now, weaning down the vent settings, but he's not tolerating it very well. 

southphilly

27 weeks counts as very early!  34 weeks seems so far away...  It's just frustrating because he's been in the hospital now for five weeks and nothing seems to be going forward.  He is finally gaining a little weight, but we're still on the vent and the settings aren't going down.   Thanks for your reply.

Mrs. Destructo

My kids were born at 30 w, but one of them had stopped growing at 26 weeks and behaved more like a 26 weeker in the NICU. The turning point for him was right around when he hit 1500 g. One of the NPs told me that 1500 g seems to be a magic number, and she expected him to start taking off when he hit that weight. She was right - the day he hit 1500 g was incredible, and everything just fell into place after that.

southphilly

wow, thanks!  we just got to 1kg so that is something to look forward to.

preemieparent

My daughter was born at 24 weeks.   She spent 3 1/2 months on the vent.   It took a long time and there were many days when we didn't think she would ever get off.   Unfortunately time is one of the biggest things - babies born so early need time to figure things out.   The fact that your little one is gaining weight is great!  It's a good first step towards other things.

What are the vent settings at?    How much does your LO weigh?   What happens when they try to go down on the vent?   Is your LO on a standard vent or an oscillator?  Has your LO had any other issues?

Ultimately they may have to do steroids to help your LO get off of the vent.  Olivia received hydracortasone (a milder steroid than decadrone) and that helped her stay off the vent.  

Have you had a care conference with the docs and nurses to find out what they "plan" is for moving forward?  Sometimes that can help.

Feel free to email me at lifeinthenicu@gmail.com if you want to ask questions, etc. 

Denesdia

Our DD was born at 25 weeks and was the most ill for her first 6 weeks in the NICU until she was diagnosed with NEC in the nick of time.  After her second major surgery, where most of her large intestines were removed, she was a new baby.  She even looked like a baby, finally.  The weight gain and the weaning off of the artificial support was still tedious, but we weren't sitting on pins and needles about the raging infection as much.  She actually had one final surgery, and then she came home just a few short weeks later.  All in all 96 days was our journey.  It will be hard for the team to give you a timeline, because your little one determines so much.  Stay strong and visit the board often.

TriciaJoy

Robbie was a 26weeker. We had a magic marker when he was 5 weeks actual and they put an NJ tube (from nose to intestine instead of to stomach) and got some of his reflux under control. That, plus a round of steroids is what finally got him off the vent.

Before the NJ, he would literally high sat and low sat in the same minute.. constantly. They had to put him on a team with a low-need baby because no one could keep up with Robbie and another child. It was awful. Then the NJ came and suddenly he would alarm twice an hour. I couldn't believe it.

Then we had another big marker about 5 weeks later (so now about 36w gestation) when he was able to go from high flow to low flow oxygen.. I don't know what happened, but suddenly he was just so much better, started nippling etc etc.

Yes, it does happen quickly. I didn't think we'd ever get off that vent.. he failed off of it 3 times.. then we had 3 more weeks of CPAP.. they told me he was coming home on oxygen for sure. But he didn't. Just like they say "click" suddenly his lungs got it. He came home w/o it..

Hang in there. We were in the hospital 96 days and even now, thinking about them.. it seems like a year. Watching your child struggle, worrying about every little thing.. it's a LOT to deal with..

southphilly

Preemieparent-

His settings are 56  (frequency?  they tried to get down to 52, but his CO2 level was 70 something) and 21 (pressure?).  His oxygen has been consistently between 26 and 32.  He is 2 lbs 4 oz (up from 1lb 10 oz at birth)  He started on cpap (one week) then regular vent (one week) then the oscillator for close to three and now back on regular vent.  I just mentioned steroids ot my dh and he said the nurse had mentioned in passing.  I will speak to doc about-this is the first we've heard of it.  He has had a lingering infection which they think may be interfering with weaning-he is on antibiotics.  I would love any information you could give.  I'll send you an email-

thanks

southphilly

thanks preemie parent-I sent you an email

southphilly

Robbie sounds like my guy-he is all over the place-high and low sating constantly, he is only ever in the appropriate range on his way up or down.  Apparently his reflux is now manifesting and they turn up his oxygen to feed him.  That is interesting that the NJ tube was helpful-at this point they are drawing out his feeds over an hour to help but it hasn't been that successful.

lstaylor73

It is difficult to say, every kid is different.  But I promise you will go through several phases of this throughout the first year of their lives.  When you think it's never going to happen, even if it takes months and months of working with OT and PT and speech, it will finally happen whatever it is you're waiting for your little one to finally figure out.  They just suddenly figure it out, the light switch goes on.  Hang in there, I know it feels like it will never happen.  But it does.

Rachel&Joe

stella was on the vent for 3 weeks.  she got a lung infection when she was 1 week old which made it worse.  They got her off the vent after just a few doses of steroids.  then she was on CPAP for a couple of weeks & then on the high flow canula ever since.  the steroids were like a miracle for her.  she was like a whole new baby.  even with the risks/side effects, i would say yes to steroids.

TriciaJoy

the steroids can't be given while they have an infection, that's probably why you haven'et gotten them yet.

 Robbie was on continuous feeds forever.. Gosh, I think he was 8 or 10 weeks old before they went to Q2 feedings.. and that's even with the NJ tube for a couple of weeks in there.

We found out later that he was born with an incomplete diaphragm causing a hiatal hernia, and he ended up needing surgery (don't freak out. It's *SUPER* rare and not related to prematurity. The director of our NICU said he'd seen it twice in 18 years- Robbie being #2) so he had all kinds of crazy stomach issues. Reflux is HELLLLLLLLLLLLLLLLLLLLLLLLLLLL.

lemen99

Hang in there DS was born at 26 weeks.  After about a month things got "easier"...this became particularly obvious when we were no longer the first patient seen during rounds every day.  There were still issues, and it was still stressful, but the issues were less life-threatening.

Hang in there!