Life in the NICU is scary. It’s also exhausting, and confusing, and loud, and uncomfortable. You and I both know that it’s awful it is to have a child in the hospital.
Our son spent 93 days in the NICU. It felt like the longest 3 months of our lives. Looking back, it’s almost impossible to believe that we made it through! If you’re just starting your NICU journey, please know that you will make it through, too, even if it doesn’t feel like it now. Here are some of the things we did to make our stay more bearable…
1. Be there as much as you can, even though it sucks. I found out that after a while, the place actually became somewhat comfortable. I knew where the “secret” bathroom was. I knew the shortcut to the cafeteria. I knew the receptionists by name (and they knew me). All of these things don’t sound like much, but the more familiar I became with the hospital, the less scary it seemed to me.
2. But also take time for yourself. I learned very quickly that the only way I could really take care of my son was to also take care of myself. (I need to remember this, now that he’s 18 months old and running circles around me!) Don’t let anyone make you feel guilty for taking a break! It’s not physically possible to be at your baby’s bedside all the time. Make sure you take breaks to eat healthy food, exercise, and sleep.
3. Leave a scent-cloth with your baby. Even though I knew I needed to take breaks, I felt still guilty leaving. So, I started sleeping with a cloth at night and kept it in my bra during the day. When I left the hospital each day, I left the cloth with my scent on it in Jax’s isolette. It gave me some comfort to know that Jax could still smell me even when I wasn’t physically there with him.
4. Ask questions. All the time. I asked about one hundred billion questions over the 93 days Jax was in the NICU. I probably asked the same question over about a thousand times. If I didn’t understand something, I asked about it. If I didn’t like an answer, I asked someone else. I kept a notebook in our room and wrote down everything that came to mind, no matter how trivial. Asking questions helped me be an informed part of Jax’s care team.
5. Be an active part of the Care Team. You are your child’s biggest advocate. You know them better than anyone else. If something does not seem right to you, SPEAK UP! If your child is acting funny, tell your nurse and make sure they take you seriously.
6. Remember that you are the boss. It might not seem like it, but you are in charge. You hired the doctors and nurses to take care of your child. If you do not like the way a staff member is making you feel, tell the Charge Nurse. You should never be made to feel like you are in the way or that your concerns are not important. If your nurse makes you feel this way, you have the right to request a different nurse. Think of your nurses as your teammates; if you cannot work well together, it probably is not a good fit.
7. Remember that nurses are compassionate human beings. Don’t be rude or harsh. Be respectful when discussing your concerns. Thank them for caring for your baby. Be honest about your feelings and your trigger points. Do all you can to be a good teammate, too.
8. Accept help when people offer it. Soon after the baby is born, your friends and family will probably be bombarding you with frozen lasagnas, offers to walk the dog, and gifts for the new baby. Take the help! Even if it is difficult to accept, remember that you are in a position that requires help. It will be so much easier if you just say yes. Also, take the help as soon as someone offers it – after a while, the “novelty” wears off and people aren’t as willing or quick to help. (I’m not bashing helpers out there – it’s just that real life continues on for people outside of the NICU.)
Please know that you are not alone right now. We’ve been there, too. Please reach out to us… What are some things that helped you survive a NICU stay?
(If you’re interested in reading Jax’s story from the beginning and throughout his NICU stay, check out his Care Page at www.carepages.com/jaxmully.)
An Early Start 
Thanks for mentioning number 4. While some nurses might take fine care of babies, they aren’t so good dealing with parents. Some of them forget while that it might be their job to be in the NICU, but it’s my life. I didn’t know that I could request that only certain nurses take care of or didn’t take care of my child until my second stint in the NICU with my second preemie.
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So many parents feel uncomfortable with their nurses! While we know it’s their job, you’re right – it’s our life! Our hospital kept the idea of a “primary nurse” pretty well underwraps, so we had to seek them out. I’m so glad we took the time to do that – we loved our team of nurses and so did Jax!
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As important as it feels to be there all the time, I really wish I had NOT been there so much. That I had taken the time to go for a run now and then, or eat a meal, or take a nap. Truth is, baby didn’t need me there that much and I really could have been more productive getting my head screwed back on right.
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Good point, Alissa! It’s so hard to take care of yourself, too. I had a really tough time with that, too. Luckily, I had a dog at home that begged for walks, so I was forced to get some exercise. I’m so glad for that because it really helped me clear my head each day before I went to the hospital.
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