Is it acceptable to pushback? I feel they could get him home faster.
@eline We felt the same way. But I think they don’t want to say “ they’ll be home within 1 week “ and the baby have a setback and then you’d be more upset. I did what dustynails suggested. I asked what the steps for my baby to come home was. They said she had to drink 80% of bottles, gain back to birth weight. And get the gtube out. After she hit those goals they would watch her for 2 days and make a decision. And they did just that. I promise it’ll happen. Take it from me, I felt like the doctors didn’t know what they were doing and didn’t want my baby home with me. I’m already a paranoid person and have anxiety and think the worst. But looking back I know that wasn’t the case. My doctor was extremely happy and excited to call and tell me she could come home.
mearedaniel
New member
@mearedaniel I meant in terms of desats
mearedaniel
New member
@eline It really depends on why your child is in the nicu.
For my I’ve had 5 in the nicu. All feeder growers so with my last I knew she was ready to go home before the doctors said. Different doctors everyday and all had different opinions. I had a meeting with them all and told them this isn’t my first rodeo and she was ready. They all knew I knew what to look for and was very well versed. They let her go before hospital policy lets preemies. Normally they can’t go before 35 weeks. She came home at 34. Born at 33. But that isn’t the norm and I knew what I was doing. All medical staff agreed with me as well.
I know it’s hard not having your little one home but they will come home soon enough. Best of luck
For my I’ve had 5 in the nicu. All feeder growers so with my last I knew she was ready to go home before the doctors said. Different doctors everyday and all had different opinions. I had a meeting with them all and told them this isn’t my first rodeo and she was ready. They all knew I knew what to look for and was very well versed. They let her go before hospital policy lets preemies. Normally they can’t go before 35 weeks. She came home at 34. Born at 33. But that isn’t the norm and I knew what I was doing. All medical staff agreed with me as well.
I know it’s hard not having your little one home but they will come home soon enough. Best of luck
@eline This is unpopular but I pushed back against my son’s doctor, but not quite in the way you’re describing. I didn’t understand his treatment plan and asked to be educated and informed about options available. It turns out there were four treatment options for his specific issue but we had only been presented one. I didn’t accept “he’s just a preemie” or “it all depends” as an answer. The doctor FINALLY really went into depth about her concerns and what she was looking for.
It helped me understand their timeline and what they were looking for before he could come home. We actually did end up altering his treatment slightly when I found out about options, but insight was really the most important aspect of my “pushback.”
You’re his parent. If you don’t understand their timeline, I think it’s fair to ask why and expect and in-depth explanation.
It helped me understand their timeline and what they were looking for before he could come home. We actually did end up altering his treatment slightly when I found out about options, but insight was really the most important aspect of my “pushback.”
You’re his parent. If you don’t understand their timeline, I think it’s fair to ask why and expect and in-depth explanation.
kiwiatheist
New member
@eline My child also was in the NICU (though for 8 weeks or so) but her only issue was needing to gain weight and learning to bottle feed. The NICU said the beginning of any NICU stay is scary and the end is hard. The end is hard because your baby is doing so much better and you just want them home. That said, safely being able to bottle feed is HUGELY important to discharge and the reason that many babies have to stay longer even after they’re otherwise healthy. We had occupational therapists checking on the baby to make sure bottle feeding was going safely AND that we weren’t pushing her too hard. It needs to be a good, healthy, and happy experience for the baby to learn. I know it’s frustrating but while most all babies will experience reflux, no they shouldn’t be destating when bottle feeding if they have the appropriate skills. It’s about the mechanisms as well as the stamina and they need to pace themselves and learn to breathe during. As others have said, the medical team knows what they’re doing and I’ve never seen a team WANT to keep a baby longer. They also want the babies to go home- but safely. I’m all about advocating for yourself and your child but not at the expense of the safety of the child. I say this as I was there too… it’s selfish to want the baby home so much that you push too hard or push for them to come home when they may need more assistance or time. To you it might just be bottle feeding but it’s a big job for a baby! And one that most NICUs won’t discharge a baby until they know they have it down. This meant that we met a family who had been with their baby since being born at 26 weeks until 40 weeks in the NICU- the last month was literally just learning to take a bottle. It’s hard but it’s best for the baby.
labyrinth79
New member
@eline This sounds really similar to my son. He started eating better after 2 weeks, full feeds by bottle, and the only thing keeping him there was him oxygen desats. He always brought himself back up after being in room air but it took talking to the doctor in front of the nurses to understand how long he’s allowed to desat for. Before that conversation as soon as he would beep they would put the oxygen back on him. After the convo he was allowed to beep as long as he brought himself back within 10 seconds and didn’t sit at 88 for too long. He was home 3 days later. He has Down syndrome so the typically NICU stay is 3-4 weeks and we got out at 19 days. My biggest advice is ofc advocate for your baby but also trust the doctors and nurses want you to succeed and avoid seeing your baby back in the hospital. As horrible as it is, you will get to bring home your baby and the NICU stay will be a distant memory 
mearedaniel
New member
@eline My son is almost 13 weeks adjusted. He was born at 33 weeks. We only brought him home at 30 days because he came home on a heart monitor. He's 4.5 months old actual now. He still has desats, apneas and bradys. If we didn't have the monitor he could have died in his sleep already. I've already been back to work for almost a month.
If they are concerned, they have a reason to be.
If they are concerned, they have a reason to be.
bonngamchan
New member
teresafreez
New member
@eline I say this with kindness, but when I pushed back to my medical team, in THE SLIGHTEST, they sent my girls home. Like you, I wanted to get a better feel for potential time lines for my girls, so during rounds I asked about the metrics they were using to gauge their health and readiness to go home. This was something I thought would be a simple request and that the info would be readily available. Personally my work almost revolves around this type of situation, but I'm not going to post it here as it would be extremely triggering. But in those files it's standard to see goals for baby's. For example 24 hrs w/o brady event, able to fully regulate body temperature etc.
Anyway it went from them needing to stay until atleast their due date (4 weeks in the future) to them not even staying a full week. The doctor came back to me after rounds, slapped a big black binder and a tablet on the counter and told me to watch a CPR video on the tablet. I told her I was already adult and pediatric CPR certified, she had me sign a form and told the nurses to get the babies ready for discharge that same day.
That was horrifying, because then I felt like I was bringing unstable babies home that were going to die in the sleep or something. I didn't sleep much for months, and started hallucinating. I would only sleep when they were awake under my husband's care, because I needed to watch them sleep. I was just so scared.
So, even though it's rough, consider how you'd feel bringing your baby home if there was still a reasonable risk of something happening. It might cause you more anxiety and grief that a slightly longer stay.
Anyway it went from them needing to stay until atleast their due date (4 weeks in the future) to them not even staying a full week. The doctor came back to me after rounds, slapped a big black binder and a tablet on the counter and told me to watch a CPR video on the tablet. I told her I was already adult and pediatric CPR certified, she had me sign a form and told the nurses to get the babies ready for discharge that same day.
That was horrifying, because then I felt like I was bringing unstable babies home that were going to die in the sleep or something. I didn't sleep much for months, and started hallucinating. I would only sleep when they were awake under my husband's care, because I needed to watch them sleep. I was just so scared.
So, even though it's rough, consider how you'd feel bringing your baby home if there was still a reasonable risk of something happening. It might cause you more anxiety and grief that a slightly longer stay.
@teresafreez That’s kinda crazy they just discharged them out of the blue. I don’t think they’ll do that to us, they can sense my impatience pretty clearly, but definitely aren’t fed up with me enough to just send him home before he’s ready
@eline Are they concerned about reflux or aspiration? Reflux is pretty common and unfortunate but not too much we can do about that. Aspiration is when fluid goes into the lungs as well as esophagus when they are eating, which can cause desats and much much worse. With aspiration we absolutely do limit feeds because we are trying to determine if the baby is safe to eat at all. With reflux it’s more of a balancing act.