Top 10 NICU Knows for Parents

This is a list I’ve been working on since day one and I’ve finally gotten around to finishing it up. It’s been awhile since I was in NICU for those 2.5 months, but some things you’ll never forget. Here’s my top 10 list of things all parents should know if they’re having to deal with NICU. This is a list I wish I was given back in September of 2010 when my NICU experience began. I hope this list finds some of you unfortunate parents dealing with a baby in NICU and guides you through your NICU stay. You’re not alone.

Top 10 NICU Knows for Parents:

1. Take home everything!
This one seems silly but I took almost everything I could from NICU when we left: buckets, towels, blankets, clothes, diapers, rash ointment, bandages, etc… They will throw it away faster than you can blink, so take it. You’re only paying hundreds of thousands of dollars a week to have your child there. It’s yours for the pickin’.

2. Breaks from NICU are a must.
After one month of NICU I needed a break. I think in the 2.5 months Ellisa was there, I only took 3 days without going to see her. I felt like I could breathe on those days. I stayed home with Hudson and tried to relax. I think one night we even had friends over. Yes, I still felt guilty at the time–knowing I could be spending time with my daughter instead of doing something meaningless at home–but I knew she’d be fine and I knew I needed a break. You do too.

3. Keep a pen and pad of paper with you.
Write down a list of your child’s problems so that you don’t forget to ask regularly for updates. I had to repeatedly remind the doctors of everything that was a problem because they couldn’t remember. From diaper rash to major surgeries, it’s easy to forget when you are tired, stressed, and concerned for your child’s well-being. And if your child has as many complications as mine did, the doctors forget to update you on everything. I actually remember doctors saying, “Oh yeah, and we gave her more blood products today too,” after I asked how her blood counts were. Like it was something minor and not important to tell me. If they only knew how much of a let down another blood transfusion was.

4. Listen to the doctors, ask questions, and take notes.
We had amazing doctors but not all good doctors are personable. Some are straight-up awkward. So when they’re explaining complicated stuff with you, take notes. I wish I would have. Plus, at the time you think you’ll remember, but you simply won’t comprehend it all. And honestly, if you’re not a doctor, doctor speak is like listening to a foreign language. So ask lots of questions (even if they are stupid), jot down the answers, and take home their sketches. You’ll be glad you did.

5. Doctor’s tell you worse case scenarios to cover their bums.
Things are probably not as bad as you think. Keep in mind that doctors are liable for what they tell you. They aren’t going to tell you the best outcome when there is a chance (even if it’s a .05% chance) the best won’t happen. Instead, they’ll tell you the worst case scenario and if it doesn’t happen, you’ll be grateful. Right? This is a hard one. I can only share my experience here and you take what you will from it.

When Ellisa was born we were told she had grade III bleeds in her left and right ventricles. Grade IV were the worst. What did that mean? That meant that she could be fine, as some kids with grade III bleeds have no problems BUT chances are she would have some problems. Our primary doctor told us day two after she was born that Ellisa could have any of the following ranging from mild to severe: Cerebral Palsy, mental retardation, blindness, and deafness. My favorite part is when they say, “But we won’t know until she gets older. We’ll just have to wait and see.”

Today Ellisa is over 16 months old and she has perfect vision and hearing, she has not been diagnosed with CP, and mental retardation has been eliminated. What do these doctors know? Our current doctors are telling us now that worse case scenario is severe learning disabilities, meaning low IQ. I’d say that’s not bad considering. I’m guessing it won’t be that bad since they’re giving us worse case scenarios again. I wish I would have never been told all the things that she might have had wrong with her. Knowing that made me constantly worry and strip away the happiness I was supposed to have with my new-born daughter. Try not to let the doctors take your happiness away too.

6. Spend as much time with your child in NICU as you can.
Easier said than done, and quite obvious. The nurses do what they can, but let’s be honest, they aren’t paid to love your child and entertain them (work on development). Some nurses will take your baby and cuddle with it if they have some spare time, but I probably can’t count on one hand the amount of times I walked into NICU to see Ellisa being “loved”. Your baby needs you there and give them as much love as you can! Remember, they shouldn’t be in NICU too long. Be strong and be there.

7. Request your child’s nurse(s).
Why did no one tell me this?! I didn’t find out that you can request a primary and secondary nurse until over a month of being in NICU. You only need a couple of weeks to meet most of the nurses and connect with one or two. Once you find one you like, you can request that she/he be your primary/secondary nurse(s). Remember: They are with your child more than you will be. Your requested nurses won’t always be there with your baby, but if they are working, they should. If not, see my number #9 and raise hell.

And another thing, learn from these nurses. I learned how to change a diaper, put on diaper rash cream (I would have never put that much on!), take temperatures, swaddle (I can win a swaddle competition), breast-feeding tips, etc…They know what they’re doing and they’ve seen it all.

8. Things could be worse.
I obviously don’t know what you’re going through, but one thing I wish I would have said to myself every time I walked into NICU was, “Remember Mackenzie, things could be worse.” I really thought at the time that things couldn’t be worse. I was devastated. I couldn’t get rid of the image of my little girl in a wheel chair not able to feed herself, talk, or play. I know, it’s horrible. Since then, I’ve met moms who had it worse in NICU than me, moms who have it worse now that their children are home, and moms who had it worse in NICU and still have it worse now that their children are home. And the one I really hate, moms who had it easy. Yes, there are plenty of moms that had a baby in NICU for two weeks, one week, one day, and they still seem to complain. And yes, having a baby in NICU for under a week should be easy. Sorry if that’s you and you’re having a hard time. No matter how bad you think you have it, remember there is always someone who has it worse. It really helps to put things into perspective and it has really helped me–even to this day.

9. You’re your child’s BEST advocate.
Do what you think your child needs, not what the doctors and nurses tell you. That’s not to say ignore their expertise but NO ONE cares for your child as much as you do. So if you must, scream when your baby’s diaper rash is bad because the nurses are only changing it every three hours vs when it needs changed. Speak to a doctor immediately when you can tell “something just isn’t right” with your child, because chances are, something isn’t. Request that you leave NICU as soon as possible regardless of what contraptions or monitors you have to take home with you since you know, and the doctors know, every day in there is lost time with the outside world–something imperative for development. These examples are just some of the things I had to do. Stand up for your baby. No one else will.

10. You’ll get through this.
I know everyone is telling you this and you feel like your world is crumbling down, but you WILL get through this. You’re stronger than you ever knew. And one day–I hope it’s soon–you’ll look back and say, “That wasn’t so bad.” I’m still waiting for that day to come. I’m looking forward to it.

Ellisa with Dr. Dekowski, her last day in NICU

Ellisa with Dr. Dekowski, her last day in NICU

Ellisa with Nurse Vicky, her primary nurse in NICU

Ellisa with Nurse Vicky, her primary nurse in NICU

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Comments
5 Responses to “Top 10 NICU Knows for Parents”
  1. Wiley says:

    Hoping not to end up in the NICU again this time, but with twins it is always a distinct possibility, so bookmarking this to review and hopefully add to the wisdom we gained in our own stay.

  2. Aimee says:

    Great post! And it was great to see Dr. K’s smiling face again. We really need to make the next NICU reunion! I’m gonna share this list with some expectant hydro mommies I know!

  3. What a great list! I wish I had this information during our 39, 45, and 80 day NICU stays with my triplets. My husband wrote a similar list when our babies came home: http://thefarrell5.blogspot.com/2010/06/nicu-experience-dads-perspective-on-80.html. I love your Number 7- request a consistent nurse and number 10- advocate for them to come home as soon as possible, even if a monitor is necessary. I so, so wish I knew those things! I didn’t request a consistent nurse for the longest time and when I did, they still weren’t consistent and looking back I wish I had spoken up and really advocated more for that. I think my daughter Reagan, who was there the longest, would have recieved much better, more consistent care. One of her biggest issues was feeding/gagging/ and having apneas and bradys while eating and with all the nurses feeding her differently, no wonder she struggled so much! I also should have advocated much more for her coming home sooner rather than later. Honestly, I was scared of monitors because I had heard some horror stories. So I was not excited when the possibility of a monitor was discussed, and I think that made them keep her longer. She still ended up coming home with an apnea monitor anyway, so I wish I had just said “Send her home now! I don’t care if she needs a monitor!” One of my biggest regrets was all the time and attention she missed out on during those five long weeks when we had two newborns home and one hospitalized. That was so hard. We never missed a day of visiting her, but the visits were only an hour or two each. I still struggle with a lot of guilt about all the holding and bonding that we missed out on. But your number 8 is so important to keep in mind. Things could always be so much worse! I am very blessed with three healthy babies!

  4. How wonderful that you can pass this information on to others who may have their children in NICU in the future.
    “Things could be worse” is a good thing to remember even outside of this situation. I try to remind myself of that when I find myself complaining about things that don’t really matter.
    Thanks for sharing your story and Ellisa’s journey. She is a tough kid!

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