Is it acceptable to pushback? I feel they could get him home faster.

[eline]

Baby was born at 36+5 via emergency c section due to HELLP syndrome diagnosis. He made it clear pretty quickly he was NOT planning on being early. We’re now at almost 3 weeks in the NICU/SCN with our ONLY issue being reflux and occasional desats while eating from a bottle. He’s shown MASSIVE improvement in the past week. He’s been on 1/8 a liter of oxygen all week, and they finally decided yesterday to take it off except for feedings. He also took a full 60ml of his bottle yesterday with no desats. He’s on Prevacid, has had an ENT scope, an upper GI study, an Echo, and is having another fluoroscopy tomorrow. They’re still limiting what he can take by bottle (except once a day the SLP tries to give him more) and they put the rest through the NG tube, unless I’m there to breastfeed (I do that about 3x a day, he never desats on breastfeeds).

It feels like they’re progressing him SO slowly over a little thing like refluxing with a bottle. I’ve expressed that I’m willing to exclusively breastfeed until he goes to daycare in August. I don’t believe he needs supplemental oxygen anymore. Typically his desats are not drastic and he brings himself back up pretty quickly. Don’t all babies reflux?? Will they realistically fix this any time soon? I’m starting to get frustrated like we’re waiting around when this is an issue for which he could be sent home with a few modifications. My husband says be patient, but at this point, I want to pushback on the timeline and get my son home.

 

[lostandinsecure]

@eline I personally, I think you need to take it back a few steps. Pushing him too hard could lengthen his stay. The doctors know what they are doing.

 

[eline]

@lostandinsecure I hear that, but I think there’s a balancing act between pushing him too hard and not pushing hard enough.

 

[mccouchsky]

@eline With all due respect…the medical team knows what they’re doing, and don’t make arbitrary decisions. As much as any of us who had little ones in the NICU desperately wanted them to come home (/not need to be there at all!), need to balance that desire with understanding that NICU staff have seen hundreds or more babies in every variation of conditions. Trust the experts.

 

[schwee]

@mccouchsky With all due respect medical staff is also human and they can be wrong as well, you cannot just blindly trust everything you are your child's advocate when they cannot speak. To the OP my recommendation is compromise although we didn't have NICU we were PICU family, we made it a point to have plan of care meetings weekly to discuss progress and where we felt we could push and where we thought we need to peel back, the medical staff pushed him out of the PICU to early the first time and he ended up coding and being pushed back to the PICU after the lung Dr failures outside of the PICU.

 

[leeabc]

@schwee While all humans are fallible.

I would be cautious to remember that everyone in that medical team has spent years studying the management of premature babies and babies needing icu care.

Ask questions, advocate for your baby. But don’t forget that the people who are looking after your baby have made this their career. They know what they are doing. They have been put through testing at all steps of their education and training. If they are working in the nicu overseeing bodies have determined they are capable in their role

 

[helping217]

@eline I bawled my eyes out when I thought my daughter was coming home that week and she had a MINOR set back. I remember pumping in the NICU and being so angry. My nurse said “you want her to be here until she is 100%. If you have to return to the hospital because we let you out to early she won’t get NICU care.” I knew she was right, looking back I just wanted her home and was being selfish. She needed that extra time.

 

[mishkan]

@helping217 THIS. I’m currently holding my 31 weeker who is now 39 weeks and we’ve just been readmitted to the hospital because the NICU pushed us out too early. We were sent home after just 20 days and only 24 hrs of taking full feeds by bottle. I was worried, but they assured me she was fine and her spitting was just reflux that needed no meds. Here we are now 5 weeks later readmitted to our children’s hospital because my baby cannot hold breast milk or formula down and is losing weight instead of gaining. My best advice is don’t push too hard. I know it can be tough and seem never ending, but MOST of the time, the doctors know what they’re doing. You can always ask them to explain why they’re doing something, and even request a second opinion if you’re still not comfortable!

 

[reallyconfused0512]

@eline This was how I felt. 10 months later, I know I just wanted him home but that the medical staff knew what was best and kept him until he was ready. He will get there and this will all be a memory.

 

[eline]

@reallyconfused0512 How long was your son in the NICU?

 

[reallyconfused0512]

@eline 8 weeks

 

[eline]

@reallyconfused0512 Oh God I can’t do that . Monday is his due date, I can’t imagine doing another 5 weeks after that

 

[reallyconfused0512]

@eline It was so hard. He took a long time to learn how to eat and then got COVID from a nurse. He’s turning 1 this weekend and it finally feels like a distant memory. You will get through it and he’ll get there, hopefully soon!

 

[jsw3883]

@eline I say this in love, due dates mean nothing. You need to be prepared to leave when your LO is ready, not when you are. It sucks but it’s not always straight line to discharge.

 

[3john3]

@eline My child has been in NICU for almost 10 weeks and his due date is approaching. One of our nurses told me yesterday about another parent who pushed their nurse to bottle feed a baby who was not ready and the baby aspirated and will now be here for much longer. Please, please don’t be that parent.

 

[ahmed360]

@eline I know you want him home, but he still needs support. Reflux to the point he is needing oxygen just to eat isn’t just “a little thing” at all. If you had him home and he refluxed, clamped down, and didn’t recover, are you really okay with that possibility? Because I am a NICU nurse and I wasn’t okay with that with my son. I didn’t start pushing discharge until he was taking 80% of his bottles. Then I pushed for home feeds and home oxygen (we already knew he would be coming home on oxygen). He came home safely after just over 2 months.

It’s hard, but be patient. It will happen eventually!

 

[dude99]

@eline We all know this pain, of wishing things could move faster. But deep down, we also know that the professionals want our babies to go home as much as we do, and that they know what they’re doing.

My baby is 3 weeks old. She was born at 28 weeks and probably has another 7-10 weeks to go in the NICU. I didn’t meet her until the morning after she was born (I was severely ill). I wasn’t able to hold her for the first 11 days and I cried each day, because she belonged in my arms. It will hurt for a long time that I wasn’t able to have that crucial bonding time with her.

But I have to trust the nurses and doctors, because they believe as much as I do that babies belong with their mommies. And that we belong at home. But it can’t be that way yet.

 

[ineedserioushelp32]

@eline Hello. Fellow NICU mamma to a babe born early and having desats with feeds. Just so you’re aware, his reflux and bottles could be aspirating if he’s desating it’s for a reason and taking him home you’d not know which could be dangerous. Being early he could still be trying to work out what’s going on and even full term babies sometimes take their time. The NICU staff know what they’re doing as do his care team eg drs. You need to try not to be fixated on getting your babe home and make sure it’s safe for babe to do so. I know it’s hard, but my kiddo is now 11.5 months old and still on a feeding tube because of dysphagia and aspiration with severe reflux. Your babe could also have more reflux than you know eg, silent.

 

[scottbes]

@eline I’m sure home is imminent OP but I don’t think there’s any sense in rushing this last bit (we had a 7 week stay and I was also desperate for home). It’s true that most babies may have signs of reflux but personally I’d be keen for everything to be done while he is in there regarding this as once you’re home it can be incredibly difficult to manage and can really affect sleeping, feeding etc. He has taken a full bottle which is great so let him work up to full feeds and wean off all oxygen, this can happen quickly at the end. The staff want him home as much as you do. I don’t see sense in pushing your little baby too hard when you are on the home stretch, he will get there

 

[eline]

@scottbes It’s just hard because I feel like while this week he finally made some progress, I’ve been given no idea what the goalposts are. I’d just like a sense of when I can start to feel some hope.