frustrated

flerlgirl

Joshua was born at 26/1. He's now 36 weeks adjusted/almost 10 actual. At 36 weeks he should need less O2 support and begin taking oral feeds. The dr is concerned that he isn't where he should be for a 36-weeker. 

However, he was born at only 1 pound, 7 ounces. So, yes, technically he is a 36-weeker, but he had stopped growing for a while before he was delivered. So he's more like a 32-33 weeker based on his current size (3.5 pounds). I'm frustrated because the dr keeps expecting him to do things on a certain schedule and it just isn't going to be the same for him. They keep trying to wean his O2 support too quickly and while I understand we can't stay there forever, he has to get there on his own time.

And speaking of time, the staff pretty much confirmed for us that we aren't leaving on his due date (May 30th). More like the middle/end of June. So I'm just a grump today.

 

Courtneyw04

The NICU can get very frustrating. I got so annoyed when our due date came and went because the Drs were telling us the whole time they would come home on or before their due date. Just remember that you are so close to him coming home! He has come so far and these preemies are on their own schedule :-) 

Jenrn2203

It's ok. We feel the same way. Our 24 weeker will be 38 weeks tomorow and is just starting to nurse just a little bit to practice for Bottle. And shes on oxygen too.We are behind too and it's frusterating but we know she will get there when she's ready. Hang in there!

DrRx

(((hugs))) The end of the NICU journey can be the most frustrating part.  My daughter (born at 26w2d and was 1 pound 12 ounces) ended up coming home on oxygen, which wasn't the worst thing ever.  I was so concerned that we were never going to start oral feedings because she was on oxygen.  They didn't want her to be on high-flow oxygen and oral feeds, but when she went to low-flow oxygen we finally started the bottle feeding process. 

We came home 2 weeks before her due date, so 38 weeks exactly.  She came home, however, on oxygen, a pulse ox, and an apnea monitor.  And, as intense as it was having her home with all that equipment, it was definitely less stressful than having to go to the NICU every day multiple times a day.   I know it is tough, but hang in there.  You're almost at the end of the NICU journey!

gault530

I'm sorry for all the bad news. Does he have one doctor or do the doctors rotate? Our doctors rotate once a week or so and I ask the same questions of each doctor because I'll get a slightly different answer or explanation.

I know how hard it is and more than anything you just want to take your baby home! I have no advice, just hugs.

thishappyhouse

Have you moved to a continuing care room?  Thats when all of our problems with unrealistic expectations by doctors and nurses started.  It was almost as if they forgot how rough her start was  (25w 0d, 1lb 7oz and intubated for 7.5 weeks).   It was like they were comparing her to 30+ weekers who were the same gestational age.  The problem that arose was that they started to come up with other reasons why she wasn't progressing respiratory wise or with bottle feeding and led us down a path of lots and lots of scary testing.  In our case she just needed more time for everything.  After nearly putting in a g-tube, she came home at 42.5 weeks without oxygen and on all oral feeds.  

All this to say, trust your gut, advocate and take it one day at a time.  Its rough, I know.     

MrsRKJ

Hang in there mama!  I know it's hard, but know that your LO is getting the best care they can get.  I understand the frustration - although the NICU staff was wonderful when Henry was there, the communication with each other was lacking.  I'd have one doc say one thing, then another say something else - it was annoying and frustrating!  The day we were supposed to take him home, the docs that were there at that time (we had to spend the night at the hospital) didn't even know what we were talking about - the day staff didn't leave any notes about us taking him home!  Ugh.  Be the squeaky wheel - if you don't understand something, or you want more information, ask and be annoying as much as you have to get that info.  It's YOUR child.  You need to be comfortable with what's happening, and in the know.

DS is home on oxygen and an apnea monitor... took a little while to get used to, but not a big deal at all.  Could that be an option at some point?  Good luck to you - sending positive vibes!! 

flerlgirl

gault530:

I'm sorry for all the bad news. Does he have one doctor or do the doctors rotate? Our doctors rotate once a week or so and I ask the same questions of each doctor because I'll get a slightly different answer or explanation. I know how hard it is and more than anything you just want to take your baby home! I have no advice, just hugs.

He has two main doctors and then the one who works nights. They rotate about every 5 days. I did talk to the doctor today and she said that because he is so small (in the third percentile), she feels like she needs to wean him more aggressively. He isn't acting like a true 36 weeker. Poor kid. He just wants to take a nap How are Silas and Quinn? 

flerlgirl

thishappyhouse:

Have you moved to a continuing care room?  Thats when all of our problems with unrealistic expectations by doctors and nurses started.  It was almost as if they forgot how rough her start was  (25w 0d, 1lb 7oz and intubated for 7.5 weeks).   It was like they were comparing her to 30+ weekers who were the same gestational age.  The problem that arose was that they started to come up with other reasons why she wasn't progressing respiratory wise or with bottle feeding and led us down a path of lots and lots of scary testing.  In our case she just needed more time for everything.  After nearly putting in a g-tube, she came home at 42.5 weeks without oxygen and on all oral feeds.  

All this to say, trust your gut, advocate and take it one day at a time.  Its rough, I know.     

He is still in the more intensive care part of the NICU. I don't know that we have anything like a continuing care room. It's so weird because just a couple weeks ago they were saying don't rush him, let him take his time. But I guess he isn't progressing like they want. She said his breathing is really behind.  

flerlgirl

Thanks for the encouragement!! Sorry for the post and run  

caden1206

I am so sorry.  I know it is frustrating.  Keep hoping a praying, sometime these little guys just kick into gear.  Plus, coming home on o2 is the worst thing in the world.  My son did and was off about a month after coming home.  Praying for you and your LO. Keep your chin up.