100 days and counting

Missi576

Hi all.  What a trip.  I can't believe it has been 100 days since we started this journey.  

Olivia is home and has been for almost two weeks.  She is doing amazing.. amazing at keeping me up all hours as well of course     We've been to hearing screenings, ROP follow-up examinations, and the pediatricians twice.  I still need to get PT set up (must poke them because they were wanting to wait until Alex got home).. and to go to her follow-up cardiology appointment for the PDA that never closed but isn't symptomatic.  We stayed home for Easter, but we ventured out to church yesterday.  It was nice.  I wish Alex as already with us, but it was good to be doing something normal with one of the twins at least. 

Alexandria is still in the hospital.  The good news?  There is an end in sight.  One of the neonatologists told me that since her only issue is not finishing her bottles, if she hasn't shown significant improvement in the next week, we'll discuss a G-tube.  If she goes home with that, it will only be until she starts eating everything by mouth.  Mainly it is because she is ready to leave other than her feeding and we all think she'd do better at home.  

Still can't believe it has been 100 days since they were born.  

SarahA918

I'm sorry if I'm really out of the loop and might say something you've obviously tried. I definitely don't participate in this group very much so I haven't read the whole story about your babies, but my son was in the NICU for 170 days. He has a gtube because of significant oral aversion after being put back on the cpap and not being able to drink bottles after loving them while he was on the nasal cannula. I'd push to have a different speech therapist or OT work with your daughter to get her to finish her bottles. It's an actual surgery and there's a lot of risk of infection and irritation at the site. It seems like an easy fix to get your daughter home but I'd look into more non-surgical options first!

Brummy14

...butting in... our NICU let us take the girls home on NG tubes. DD2 used hers for only a few weeks post-discharge, but like you allude--she really did thrive at home. She was about 50% PO at discharge, and just was a much better on-demand eater! Also another thing to ask vs a surgical option, depending on where she is right now.

rkcaraway

I'll weigh in on the g-tube issue too.  Try everything you possibly can to get her to take a bottle and not let them push you right into the g-tube.  They are good for a last resort to get baby home, but honestly they suck.  The pump is inconsistent.  And you have to find just the right combo to get baby to eat but not push so much that they spit or vomit.  Sorry to sound like Debbie Downer.  I am so very very happy Olivia is home and Alex is doing well.  

e74

So excited for you! One of my twins had difficulty finishing bottles as well... He did eventually get his percentage up to where they wanted it so that he could go to feed on demand,,, even after he was home, he was not one that would finish bottles easily, but he gained weight.., good luck to you!!

Missi576

I really really appreciate the input about the g-tube.  Thank you so much!  It isn't something I felt pushed into, it was more mentioned as a last resort as she goes past 42 weeks gestation.  That won't be for another week and a half or so.  Honestly, I'm not fond of the idea.. but I'm not sure what else to do at this point   I wish we could go home on an ng tube, but that is against hospital policy.  

I'm going take in a different type of bottle tonight and see if that helps at all.  She just has such a time getting her tongue organized.  

thishappyhouse

We were in this position with our DD who had some really severe choking episodes.  The neo's wanted to decide on a G-tube before 42 weeks but the research I was reading indicated that poor suck,swallow, breathe can really fall under normal variances until 44 weeks.  As much as I wanted her home and felt she would do better at home I insisted on giving her until 44 weeks.  When I stood my ground they offered NG as an option, albeit one they dont like to regularly use.  

I hope she figures things out soon and makes the decision for you! 

SarahA918

I feel like they can always make exceptions on their policies! My son's hospital said they don't like sending kids home with ng tubes and make parents bring the kids back to the hospital each time it needs to be changed or gets pulled out. I do know some parents can get trained on how to do it though.