Bringing Medical Equipment Home With Your NICU Baby: A Parent's Perspective

The day has come for you to finally leave the NICU and go home with your little one! You can't wait to leave the NICU behind and relax at home with no bright lights or constant beeping in your ear. You're so excited and those pearly NICU exit doors are right in front of you! But wait...your little one is bringing home a little extra something with them. It's medical equipment that they will still need to thrive at home. 

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There are many types of medical equipment babies can come home with such as: an apnea monitor, a feeding tube, an oxygen machine. These things can seem a bit intimidating without having a full NICU team there with at home to manage them, but don't worry! Before you leave the NICU, you may have to take classes or do training sessions on how to properly use the equipment, so you will have all of the knowledge necessary to clean and use them. 

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When my son Kylo came home, he had an oxygen machine to help with his breathing and CLD (chronic lung disease) and a g-tube to help with his feeding (he was silently aspirating in the NICU). He was also sent home with a pulse ox monitor which constantly monitored his heart rate and oxygen levels to be sure the oxygen he was receiving was sufficient. All of this equipment was extremely intimidating at first, I won't lie. The pulse ox monitor did give me a bit of relief because I could hear it beeping if something was off with his oxygen. But although I felt like it, I certainly was no nurse and I was constantly anxious about something going wrong with the equipment and us having to return back to the hospital because of it. Thankfully, nothing did and a few months later Kylo was oxygen free! But that scared me even more for a bit because that meant no more pulse ox and to my NICU PTSD riddled brain, that meant if something were to go wrong, I wouldn't be able to hear those beeps letting me know (this is the anxious cycle of a Preemie/NICU Mom 😩). 

 

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But the piece of equipment that really terrified me the most was his g-tube. The g-tube needed much more love and care than the other equipment Kylo had because it is/was an open wound that needed constant monitoring and cleaning, as it was an easy and dangerous place to get infected. Plus, it was the source of the only way to feed him, so it was super important to make sure it was functioning well everyday. If he happened to pull it out accidentally, we would be taking a trip to the hospital I desperately did not want to return to, because I was not yet trained well enough on how to re-insert it. Again, luckily none of my anxiety driven fantasies happened, but as a first time mom to a medically vulnerable baby, it's really easy to let your fears take over.

Today, he still has his g-tube and it comes with it's challenges (leaks, tube pulling/irritation, ulcers, etc..) but I'm grateful he has his tube to help him get the proper nutrition he needs. Kylo was on a ventilator for 3 months and was aspirating silently when he did try drinking by mouth, so it's no wonder he is skeptical about the whole eating/drinking by mouth ordeal. I try my best to model good eating habits around him to show him that eating by mouth is "fun" and safe to do and have faith that when Kylo is ready, Kylo will take that step to try his first bites of food by mouth, but for now, tubie it is! And now, I'm much more confident in my ability to care for it. I can take it out and pop it back in like a pro! 

Bringing medical equipment home can seem daunting and you may doubt yourself and your ability to handle it, but trust that the NICU would not have discharged baby home with that equipment if they feel like you couldn't handle it! Mishaps may happen, remember, we are human after all and we're learning. You can always contact your NICU, your baby's primary care and/or specialist team if you have any questions or concerns too. You are never alone on this Preemie/NICU journey! 

And remember, you're doing a great job!

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With Love,

Nico Shanel 💜


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