What is it going to take to bust out of here?

[mrspotatohead91]

This was me two weeks ago. My NICU required that he took 100% of his feedings by mouth for 48 hours before he could be discharged. Feeding tube was pulled after 24 hours. I honestly didn't think it was possible for my 4 pound baby to eat that much 8 times a day for 24-48 hours. The nurses and Drs kept telling me a switch would go off one day and he would be able to do it. They told me that every day for almost 3 weeks since that was the only reason he was there. He started taking about 4/8 feeds 100% and within a couple of days progressed to 8/8. He will get there. He is early so it will take him some time to get the hang of it. Now my LO chugs his bottles in no time. I just told my mom today you would never know he spent 20 days in the NICU for feeding issues! Hang in their mama, I know how stressful it is but you will be home soon!

[motownthrowdown]

It really is a switch. All feeds by mouth for a couple days is pretty standard. We went for weeks of 2 or 3 feeds, partial feeds and then one day, we came in and the nurses said she'd eaten everything since midnight. We were home three days later.

I will say we had an 84 day stay, so it's not like we hadn't been there for a while.

[motownthrowdown]

Dec 14, 2015 11:58:29 GMT -5 @loonylove said:

Ok. I'm trying to be patient. I'm just so frustrated by sitting here watching the stupid clock. It is the only thing holding us back and my mom gut is telling me that if I could just get home and nurse on demand, he would be taking what he needs, when he needs it.

I am generally patient to a fault, but this experience has severely tested that skill.

Something that I've seen before and what we did was getting her docs to write her feeds as ad lib. It's a range instead of one end all be all number. Like, our range at the time was between 45 and 60 mls. If she finished 45, it counted as a full feed. I think it got her used to eating when hungry, as opposed to eating and then getting tubed the rest.

[theycallmekveld]

The switch will flip! Until it does it is so frustrating but it will happen! Hang in there, mama.

[motownthrowdown]

After we got out, we had to wake her every 3 hours around the clock. We did this for about a month and then we were told that we could let her self wake overnight. Something to do with the preemie brain wanting sleep more than food.

[runningmommy519]

It really is a switch as others have said. When my second was in the special care nursery I remember thinking something similar. That if they'd just let him tell us on his own that he was hungry that he'd eat. They finally decided to give that a try, to ad lib. They had a goal of a certain ml in a certain timeframe. That if he only took an 20 ml at this feed but made up for it later then that's ok. And he wasn't ready. When he did wake up he wouldn't take enough and after about 12 hours there was no way he would meet the goal they set for him, which they based on his weight and how much he needed to eat to gain at least 1/2 oz. we tried again a few days later and it worked.

Believe me. I know this sucks. It's the hardest thing you need to wait for. We waited 36 days for my second to get it.

I'm sorry you are away from your daughter. I was able to see DS1 everyday when DS2 was in the hospital and even that was hard.

Hugs to you

I am sorry that you are experiencing this.

[motownthrowdown]

Dec 17, 2015 9:20:35 GMT -5 @loonylove said:

Dec 17, 2015 8:04:47 GMT -5 DoesItComeInPink said:

@loonylove how is your DS doing?

He's good. He is gaining weight like a champ. Up to 5lbs 6oz as of yesterday. He had been having a bunch of bradys while bottle feeding, so we backed off yesterday and just did a lot of skin on skin and breast feeding. With weighted feeds, he was transferring 50-70% of his mls and not having the bradys.

He is so close.

Come on little dude!!!

[bromios]

I tried my damnedest to make my son PO all of his feeds (I studied his physical cues obsessively and could catch him before a desat started and get him to finish the whole bottle eventually without setting off any alarms). Then, as soon as anyone else fed him, he would desat and they would put the rest down his tube. I got so mad because I felt like if I were the only one doing the feedings everything would be fine and he would be out of there! In reality, I was just wearing him out and he wasn't truly ready. When I finally (with one of my very, very few tearful breakdowns) let myself realize that I couldn't make him be ready faster I stopped putting so much pressure on him and within a few days he got there on his own.

[mrspotatohead91]

@loonylove that is awesome that he is doing 90% of his feeds! He will be out of there in no time! Hang in there. The nurses told me the feeding issues can be the hardest part because it's something we can't control and make the babies be ready.

[minae01]

You are so close to coming home! The NICU will be a distant memory in the very near future. I felt like it took my 32 weeker forever to get it, but once he did we cruised on out of there within a couple of days.

Keep us updated on your homecoming status!

[sahara78]

Hope you guys are able to come home soon! It is frustrating to wait for the last milestones before release, much more so than earlier when DD was so obvious needed to be in the NICU.

[motownthrowdown]

Oh no @loonylove. I'm sorry baby won't be home for Christmas this year. I want to try and suggest stuff you can do to make it feel more ok, but if I were you, I'd just want to be sad and pissed for a while.

[jense927]

Ughh @loonylove, so sorry for the set back. My DS was in the NICU during Christmas and when he was first born I had a few people say that he may be home by Christmas and when he wasn't it was pretty devastating. Sounds like you have the right attitude though! Have fun with your DD!

[runningmommy519]

@loonylove I'm sorry. Hugs to you.

[mrspotatohead91]

I am so sorry for the set back @loonylove big hugs to you. I hope you have a nice Christmas with your daughter! We spent thanksgiving in the NICU and I cried a lot wanting my boy to be home. He figured out how to eat just a few days later. Better to be safe than sorry with the A&B alerts. Hang in there mama!!

[sahara78]

I hope you enjoyed Christmas with your DD. We had a last minute delay once (lack of weight gain), which was so hard at the time.

[runningmommy519]

Dec 29, 2015 16:57:10 GMT -5 @loonylove said:

Dec 29, 2015 16:38:40 GMT -5 @clgsquared said:

@loonylove how did he do with the on demand feeding?

He gained 40 grams on boob only (and woke up every 1.5-2 hours). He passed his car seat test with one self corrected brady where he picked his head up. He's still having some brady episodes, but they've all been quick and self resolving.

As long as he gains weight again tonight, and doesn't have any apnea, we should be going home tomorrow.

My anxiety is through the freaking roof right now.

So close!! I'm couldn't believe it with either of my boys until we were walking out of the hospital

Hang in there

[motownthrowdown]

Dec 29, 2015 16:57:10 GMT -5 @loonylove said:

Dec 29, 2015 16:38:40 GMT -5 @clgsquared said:

@loonylove how did he do with the on demand feeding?

He gained 40 grams on boob only (and woke up every 1.5-2 hours). He passed his car seat test with one self corrected brady where he picked his head up. He's still having some brady episodes, but they've all been quick and self resolving.

As long as he gains weight again tonight, and doesn't have any apnea, we should be going home tomorrow.

My anxiety is through the freaking roof right now.

I also didn't believe it until we were walking out. I was waiting for someone to yell stop. Fx everything goes well. I'm so excited.

[sweetcali]

@loonylove I'll be thinking of you and hope everything goes well.

[mrspotatohead91]

Hoping things continue to go well!

[runningmommy519]

Hoping you are home snuggling that sweet boy!

[kate61487]

This is so great to read! Sorry about the nosy nurse, but it's behind you now. Your LOs are adorable

[motownthrowdown]

Yay!!!!! And they wouldn't have let him out if they thought he still needed to be there. So happy to see your pic!

[runningmommy519]

Yay!!! Happy homecoming!!!

[sahara78]

Yay! Such a sweet picture. Enjoy snuggling your baby at home!

[wicked22]

@lonnylove so happy for you that he's home now. I had a similar situation with DS. He had 3 doctors rotate ever 5 days. When it was time to go somehow he got each one on during a 3 day time period which made for a hysterical angry momma. His first doc that had him for 5 days said he could probably go home the next day. The next day all day I was waiting for a call to come get him that never happened. So I went in and the nurse told me he had a bradie overnight. It was one they normally wouldn't have counted but the second doc he had was on and is overly caution. He proceeded to tell me it could be another week. Next day 9am I get the call that he's being discharged. His 3rd doctor was on that day said everything was fine and mentioned why doc 2 was overly cautious.

[runningmommy519]

Jan 1, 2016 5:21:34 GMT -5 wicked22 said:

@lonnylove so happy for you that he's home now. I had a similar situation with DS. He had 3 doctors rotate ever 5 days. When it was time to go somehow he got each one on during a 3 day time period which made for a hysterical angry momma. His first doc that had him for 5 days said he could probably go home the next day. The next day all day I was waiting for a call to come get him that never happened. So I went in and the nurse told me he had a bradie overnight. It was one they normally wouldn't have counted but the second doc he had was on and is overly caution. He proceeded to tell me it could be another week. Next day 9am I get the call that he's being discharged. His 3rd doctor was on that day said everything was fine and mentioned why doc 2 was overly cautious.

Was my DS2 at the same hospital as you. We experienced similar things with various doctors every few days. It was annoying

[minae01]

Huge congratulations on baby's graduation from the NICU and his homecoming! I hope you all are settling in well. The NICU will be a distant memory very soon. Take care of yourself and enjoy your little family being all together!

[mrspotatohead91]

So glad he is home! What a cutie! Enjoy all the baby snuggles