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Tips for Surviving a Long NICU Stay

The NICU is the sweetest and scariest place on Earth. It’s filled with amazing, tiny babies who were born too early to do things like breathe and eat on their own, but who have the spirit of a lion. It’s also filled with the most dedicated, passionate medical workers you can imagine! That winning combo of lion babies and miracle workers means lots of happy stories. Still, the days can be long! My baby spent 12 weeks and 1 day in the NICU, and here’s a checklist of what worked for me:

tips for surviving a long NICU stay

  • Attend rounds – Try to be there everyday (or as often as possible). Know what treatments your baby is receiving and on what timelines. You can be the advocate and the continuity for your baby. If you have a question or thought, share it! Your medical team is likely awesome and happy to help! I also suggest writing down the information and saving it. It’s really cool to look back at now!
  • Avoid Google – You can read my full post on this topic, but in short, I told my team that I wasn’t going to Google anything because that doesn’t always lead to the best information. Everything is either super vague that can lead you wondering if it’s something normal, or dire, or the information is super specific (and terrifying) – “if this happens, then it definitely means this or that.” Ugh! I decided that the right thing for me was to be at rounds, to know everything happening, to ask TONS of questions, and to really trust the team. 
  • Focus on the semantics – My daughter was born at 27/6 and developed a very serious lung condition that required her to be on a ventilator for one month, and then CPAP/nasal cannula for a month beyond that. I really hated to hear “this was a bad day” or “she’s having a tough time.” I told my daughter’s team that I wanted to hear things in a different way that still conveyed the seriousness, but was more positive. So, they started saying things like “She had a busy day.” That still told me there was a lot going on, but it’s not negative. To me, a lot of the things that were going on were “normal” for a 27/28 weeker. It would have been strange if she was breathing properly. It would have been a miracle if she didn’t need IV nutrition – so with that filter, those weren’t “bad” things, they were expected things that the medical team deals with everyday and knows how to handle. I didn’t ever want anyone to lie to me or to sugar coat anything, but I did want the people around me to be as positive as the situation allowed.
  • Form a “dream team” – I ended up developing a “dream team” for my daughter. I had an RN, NP, and Dr. who were amazing. They knew my daughter incredibly well, and I knew I could go to them at any time (even if they didn’t have her that day) and talk to them. With the PIE, they would say “We can’t give you any guarantees, but most babies with PIE recover. Most of those babies go home. Today is a good day and there’s no reason we should focus on anything other than her going home around her due date.” 
  • Create a mantra – This started out because I was super scared and I started to say a mantra to myself in the mirror. Then I started telling my daughter every single day, every time I left her bedside. I would say: “Kennedy is strong. Kennedy will be happy, healthy, and home soon.” Tell your baby about his room, your house, pets (or whatever). Our baby was very, very sick, and not going home was a very real possibility, but in our heads, that option didn’t exist. She was a fighter and we weren’t about to doubt her. 

The NICU is a scary place, but miracles happen every single day.

tips for surviving a long NICU stay

This is my daughter 1 year from the day she got home from the hospital! Time flies!

 

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