Going home without my NICU baby- support needed

posted 7 months ago in Babies
Post # 2
1976 posts
Buzzing bee
  • Wedding: September 2017 - Pearson Convention Centre

Sending you lots of prayers. Don’t give up hope and faith.

Post # 3
713 posts
Busy bee

Sorry mamma, that’s really rough! He’s beautiful by the way! 

Not the same situation, but my daughter was in the NICU for a week due to low birth weight and low glucose, and it was really rough on us. Has your milk come in? Is the little guy able to handle breastmilk? I ask because when my milk finally came in, it made a massive difference to my LOs glucose levels. I’d pump at home and my husband would take my milk (during the wee hours) to the hospital to feed her. During the day, I spent as much time as I could with her doing skin to skin, holding her, and attempting to nurse. The nursing didn’t really work at the hospital, but the other stuff certainly did- I think. And since she was hooked up to all these monitors, it was amazing to see how her breathing and heart rate would steady when she was being held vs when she was in her incubator alone. Try to spend as much time as you can with him, holding him. 

It really sucked to be home without her, but I knew she was in good hands. I thought we’d destroyed breastfeeding forever, but we tried on day 10 (a couple of days after she came home) and she really took to it- thankfully! She’s now a healthy 3.5 year old!

Good luck, hope he starts eating soon!! 

Post # 4
738 posts
Busy bee

Oh my word, he’s adorable! 

I don’t have an experience to share from the parenting side but I was a 34 weeker and it hasn’t hindered my development in any way. And that was 37 years ago. I’m positive your little boy will be absolutely fine.

Sending you good wishes and virtual hugs xx

Post # 5
6319 posts
Bee Keeper
  • Wedding: February 1997

Oh, what a beautiful little boy; congratulations! My DS was in the NICU for breathing issues after he was born, and he was in a city about 45 minutes away from where we live (at a larger, better hospital than the small one where he was delivered). I stayed with him in the NICU, sitting in a rocking chair next to his incubator, every. single. day. until he came home. The only time someone wasn’t there (me or Dh) was during “shift change” times when I would drive home and Dh would go to the hospital. I did days with DS; Dh did nights. One of us was there almost 24/7.

I would hold him whenever it was possible; otherwise I would sit next to him and sing or talk to him or sometimes just read for a while when he was sleeping. I pumped so he could be fed through a feeding tube. We were lucky that we had the time and leave from Dh’s job available to do this, and I understand it isn’t possible for everyone. 

We were lucky in that DS wasn’t in the NICU for an extended period. I very much hope for you that your son starts to want to eat on his own and that he isn’t in the hospital for very long. But if it is possible, visit him as much as possible. I think that having mum nearby is comforting to them, even when they’re that little; it is a familiar voice and scent, at least. 

Post # 6
9544 posts
Buzzing Beekeeper
  • Wedding: August 2016

He’s beautiful. I don’t think I can say anything that will make this less painful for you but I’m sending lots of positive thoughts your way.

Post # 7
2517 posts
Sugar bee
  • Wedding: August 2013

Thoughts and  prayers are with you. When my daughter was born she was in transitional care for 5 days (that’s for babies who are just a little poorly) I got to stay with her. I hope you’re able to spend as much time there as possible and he’ll be home soon xx

Post # 8
775 posts
Busy bee
  • Wedding: January 2017

He’s beautiful! My ds was in nicu and  he also had serious issues eating and keeping food down. When they finally let us take him home, it was only because we promised to keep weighing him and working with a dietitian since he still was loosing weight at 2 weeks old. Can you ask about different formula? I know we were only able to keep him from dropping off his growth curve by switching to a hypoallergenic formula. He also had serious suck issues so we had to feed him using preemie nippes and sidelying when he finally would take a bottle. Ask about an slp visit if they haven’t offered it. 

As far as leaving baby in nicu while you go home, it is SO SO hard. Let yourself cry in the car if you need to. And take so many pictures that you can look at while at home and while pumping if you’re tying to breastfeed. What helped me was constantly telling myself that he was getting the best care and that’s I needed to sleep so I could be there for him. Our nurses let us call at all hours of the night to check in on him, so that’s something that might help. Also well meaning people often say “I could never leave my baby” which I found made me feel SO guilty. If I had it to do over, I would ask people to refrain from saying things like that. Also if people are offering to help you, ask them to clean your house and bring you food to nicu so you can stag up there most of the day and only need to leave at night. You are so strong and you can and do this do this, even when it feels like you can’t ❤️❤️❤️

Post # 9
293 posts
Helper bee
  • Wedding: August 2014

My son was in the NICU for two weeks, born healthy at term but started having seizures shortly after we came home. I had to pump for the first day or so while they had him on a tube feed, but then he was able to breastfeed so they let my husband and I stay in a little room they keep for NICU/PICU parents at my hospital. You could ask about something like that, especially if he does start to feed. So we basically lived there the whole time, just went home to shower and feed the cat periodically. 

My hospital had these little flannel hearts you could take, and wear one on your body and then leave it with the baby when you couldn’t be there so they could be snuggled up with your scent. You could probably use any little bit of fabric. 

One thing I will say is that it was terrifying/stressful in the moment (plus hormones. The number of times I wept… make sure to look after yourself too!), it was remarkable how quickly we moved on and felt ‘normal’ after he came home (he was in good health once they sorted out his meds. I really hope your little guy just needs to figure out the eating thing and then you will be smooth sailing). This probably isn’t reassuring right now, but just know that it probably won’t be too long until you get to get back to an experience that looks more like you expected/dreamed of. 

Good luck! He’s adorable. 

Post # 10
6345 posts
Bee Keeper

Hello Finn! What a beautiful baby! My guy was only in the NICU briefly. Sending love and prayers your way–I hope he is home with you soon. Hugs. 

Post # 11
494 posts
Helper bee
  • Wedding: June 2017

What a gorgeous and sweet baby! Hang in there- this too shall pass. My niece was born unexpectedly at 35 weeks and was just barely 3 pounds. She too had some trouble with the whole eating thing- and ended up on a feeding tube for a while. She’s now a bouncing and healthy (though still petite) 2 year old. Take care of yourself. 

Post # 12
6870 posts
Busy Beekeeper
  • Wedding: June 2011

hafh2016 :  As a mom of a 32 weeker it is very hard to be discharged and to leave your little one there. But know that NICU nurses are there to help and are soo kind and will help you and your baby.  Emotionally it will be a  roller coaster but know you will be okay just keep talking to your husband and your doctor and the nuses there. Spend as much time as you can in the NICU with your baby.  I spent every day while my son was there.  He spent 4 weeks in the NICU.  He is now 7and a 1st grader! 

Post # 13
603 posts
Busy bee
  • Wedding: June 2007 - City, State

hafh2016 :  I’m 32 weeks and this is really,  really pulling on my heart. Im so sorry! I’ve never had a NICU baby but from what so many others have said it isn’t remotely easy. I never even liked having my baby in the nursery for routine things during my birth stays so I can’t imagine having to leave them at the hospital and go home. He is so precious and he looks strong mama! You have to take care of yourself so that you can take care of him, he needs you now more than ever. Go see him as much as you can/want. You can even go home, shower rest and eat, and then go back tonight! He is in the best place for him right now since he came so early. You will make it through. Again, I’m so sorry. He is beautiful!

Post # 14
7733 posts
Bumble Beekeeper
  • Wedding: October 2010

My daughter was full term but spent time in the NICU for a couple different issues and it was so hard to leave her. I cried as they wheeled me out to the car. I had another child and it was hard splitting my time between home and the hospital. The only positive was that I was able to get some decent sleep and recovery while my baby was in the NICU before bringing her home.

Post # 15
758 posts
Busy bee

hafh2016 :  He is adorable!

I know that there isn’t anything that we can say to fix the difficulty of your son being in the NICU, but maybe this can help you a little. I was a 34 week old preemie, stayed in the NICU for weeks after being born, and my parents said that I had a lot of trouble eating not just in the NICU but in my early years. I turned out totally fine and completely normal. I’m sure they’ve made advances in neonatal nutrition and care in the ~30 years since I was born, so I hope Finn has a smoother road.

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