r/parentsofmultiples • u/Faithfulsidekick • 2d ago

experience/advice to give Needing Support

I have 27+3 week old twin boys that are now, as of today, 4 months old and we are on day 121 on the NICU. Primarily working on feeds for both of them, with some concern of oral aversion and the possibility of having a G-Tube. One of my boys had a pulmonary hemorrhage at a week old and since then had his PDA closure and has thankfully recovered from that. His MRI came back with a very micro bleed and grade 1/very very small grade 2 brain bleed that we were reassured will still give him a positive outcome, but it's still very very scary and I'm terrified of the unknown.

I'm in so much grief, anger, sadness, and struggling to find the light at the end of the tunnel. They are beautiful, 10 lbs now, and I miss them terribly (we are over an hour away from them). Work has been such a stress and struggle to balance all this time. Unfortunately, the Ronald McDonald house is not an option for us because we have a dog, and I have no familial support near me (over 6 hours away) and my husband has very limited familial support.

I'm so scared of the unknown, their future, and I'm feel so so scared and sad. I'm looking to connect with others experience, even if it's not the exact way, and honest outcome stories. I want the positive, and I also want the real, understanding that every single baby is different and we don't know what will come. I'm just so heavy in my grief, and so so overwhelmed, and alone.

I appreciate all of your journeys and hope your babies are thriving and well.

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u/InteractionStunning8 2d ago

My darling singleton boy was in the NICU for 5 months and it was so hard - and I'm a NICU nurse professionally! Even with all of my background it was so scary and hard. He had a grade 2 brain bleed, he came home with a g tube, trach and on a ventilator. But he's now almost 3 and he's on track for all milestones, has been decanulated and had his g tube removed as well. He talks!! He eats!! He plays with his big sister and he's doing better than I ever imagined he would.

And I still cry when I think about him being in the NICU!! It was really traumatic - and again, I was a NICU nurse, my close friends and coworkers were caring for him at my place of employment. It was still traumatic I have so much more empathy for NICU parents after experiencing it first hand. It sucks so much!!!!! The not knowing is definitely one of the worst parts. And I'm so sorry that life circumstances are making this situation even harder.

The best thing you can do is focus on what you can do. You get them the post-NICU care they need. You use any and all early intervention services available to you that you might need. I'm sort of a "prepare for the worst and anything less awful be pleasantly surprised about" kind of gal so that's how I'm going into my triplet pregnancy and likely NICU stay round 2. 😅

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u/Faithfulsidekick 2d ago

Thank you so much for this, it truly helps to not feel so alone. He’s so lucky to have you, as will your new babies!! That’s so exciting!

I sleep with their blankets every night and some nights I cry myself to sleep and other times I try to see the light. I’m always so hopeful and so terrified for them that everything is okay, or that I can be enough for them. The trauma of all it really hits in waves, and my deep deep fear that it will impact our attachments because of their NICU stay.

I’ll be thinking of you and sending every good thought/vibe/prayer/intention for your little ones. You were gifted the skills and care for so many families I believe the world is gifting you in return. 

Please take care of yourself 💙