Welcome to the NICU. You have just been thrown into an overwhelming and scary place, and I'm here to try to help you get a grip on what is happening, how you'll get through it. You're in the right place - this is the first step on an incredible journey. Take a nice deep breath, exhale, and read on. You'll be fine!
It goes without saying that you're probably not feeling prepared for this situation. Your ideas of parenting and meeting your baby and becoming parents did not look like this. It's a shock. You're worried, you're sad, you're conflicted between beautiful joy of meeting your baby and fear for her well-being. Read on for some quick pointers for just getting through these first few days.
Firstly, one of the most important tools for coping is education. This is a foreign world, and it's OK that you don't know much about it. So, learn about everything you can. Ask questions. It can seem overwhelming, all of the new medical terms, the wires and the machines making noises, all the medicines, different hospital staff and equipment. The more you ask about everything that is now part of your baby's life, the more you'll understand. Even simple questions like "what is that machine for?" or "what is that medicine for?" help you in two ways :
- You become informed, which helps your mind put the pieces together and start feeling comfortable, and
- You start the practice, early on, of being an advocate for your baby.
Today, in the very beginning phase of your NICU experience, you will certainly not feel like the "expert" and you most likely feel overwhelmed and inadequate. We may be the experts in "NICU babies" in general, but you are the expert on your NICU baby. Consider getting a journal or notepad to write down questions that you may have, so you won't forget them when you finally have your chance to ask them. Also, do write the answers down, because you'll also forget stuff easily right now. (If you want some help coming up with questions to ask, try this list of good starter questions.)
2. TAKE CARE OF YOURSELF
Think of the flight attendant's instructions in case of emergency on an airplane - why do they tell you to place the oxygen mask on yourself first before helping small children? Because you are not helpful to anyone, including small and dependent children, if you are not able to breathe. Take this advice - it is very important that you take care of yourself right now. Get sleep, stay hydrated and well nourished, and get some fresh air. OK, I understand - you may think "How can I sleep when I'm so worried? How can I leave my baby and still be the good mother/father I want to be?" Please let the guilt go as quickly as possible - you ARE taking care of the baby by taking care of yourself. If baby was healthy and home with you, you'd be resting and sleeping as much as possible. Regardless of the fact that your baby is not with you, your body still needs healing and the rest. For many of you, taking care of yourself may include being near your baby. You have to decide what feels best, but be honest with yourself. Your goal is to be healthy for your baby so you can be there for her, now and in the long term. The nurses will NOT judge you badly if you are doing a good job of taking care of yourself.
3. BE BRAVE
Thirdly, be as brave as you can. You may feel hesitant to touch your baby, you may feel scared to hold her. In fact, you may be afraid to even visit the NICU. But I suggest you do this for your baby, and do it as early as possible... Be as brave as you can be. If you think it's hard holding her or touching her, remind yourself how hard it is for her to be there alone and be brave for your baby. If your NICU staff ask you to do something that feels scary, try to do it anyway. Having your baby in the NICU makes bonding hard enough, and every time you connect with your baby you help both of you. Parents report time and again that they're glad their nurses encouraged them to do things they felt scared to do.
4. LET OTHERS HELP YOU
Fourthly, let others help you. Think of how vulnerable and helpless you feel right now, and then realize your loved ones feel much the same way. They want to help! They most likely feel desperate to help, so let them.
But how can they help? There are some very helpful things family and friends can do, and some things that are more of a burden than a help. The help that you need is the help that YOU want. If you want sleep, let people help you with that. If that means letting a friend drive you home for naps, or friends who offer their home near the hospital, say yes, let them help you. If you want more time with your baby, but have too much laundry or no food in the house, let your family help with that! They want to! Give them a grocery list, give them a key to the house so they can clean the kitchen or feed the dogs. Loved ones may not know how they can be helpful, so give them guidance. Tell them "the doctors and nurses say I need rest, and when I'm not resting I need to be with baby. But I could really use help with X or Y or Z." What is usually not helpful at this time is having lots of visitors. Many parents feel guilty about not wanting to talk to all the loved ones who want to visit, but it's normal and perfectly okay to need time alone.
Also, let the nurses & doctors help you. One insider tip - we can be the bad guys! Here's what I mean: when you don't want mother-in-law or your next door neighbor visiting, you can kindly tell her "my nurses say I need to rest, so I can't have visitors today." Or if friends want to call and hear how you are doing, tell them "I'd love to talk, but my doctor says I need to rest & stay off the phone for a few days." Get the idea? Let us be the fall guys when it's too hard to set limits.
If your NICU has a support group, I highly recommend you join, at least to try it out a few times. Nobody else can offer empathy better than someone else with a baby in the NICU. Nobody else understands as well, and it is so important to be heard and understood. Finally, consider setting up a couple of things - a blog, and a care calendar or a meal calendar. A simple blog, or at least a bulk text contact list, can be an incredibly helpful way to avoid having to tell your story over and over and over to each concerned family member. Keeping all of your loved ones informed can be exhausting, which is not helpful to you right now. And yet having their support and love is critical. Consider having a close relative help set up a blog, or post to your facebook with updates that can keep everyone in the loop and relieve you of telling your story over and over and over. Here's an example of what one ambitious mom put together, and here's another.
5. STAY FOCUSED ON THE POSITIVE
Lastly, try your best to find the positives in the situation and focus on them. It may seem hard to be thinking of the positive right now, particularly because we NICU staff often forget to tell you much about the positives. You will hear all about potential risks, tests we need to run, difficulties your baby may encounter. We want to help prepare you. But it will help you cope if you can ask for examples of babies who had this same condition and survived. Ask about success stories (I've put together a short list of examples here), and remember the positives. Did your doctors say your baby is stable right now? That's something to hold on to, to celebrate. Did your nurses say your baby is doing something really well, like maintaining her temperature or digesting her milk or pooping all by herself? Again, that's totally worth celebrating. There is plenty to worry about, no doubt about it. But there are likely lots of things to focus on that are going well. Remember these things often.
There are so many more strategies to talk about for making the most of this new journey you are on, but I don't want to overwhelm you. You've got enough on your plate. When you've had a chance to get past this initial intense, overwhelming time, come back and comment on what advice you would give new parents in the NICU. For now, take care of yourself and hang in there - you will survive this.