So for those who actually read, I have some things I wish had been told to me a year and a half ago to say to any new NICU moms out there.
1) Own your story
Each NICU journey is so individualized that no one in there will have the same results. We had a long NICU stay mostly because Prudence kept having horrible reflux episodes. There were other 25 weekers who did better, those who did worse. There were parents devastated by having to be in there for 2 weeks. Some babies were born full term but for numerous reasons had to stay in for life saving surgeries. Own your own story and share it. I used to scoff at the moms who had a few day stay. But I realize now that no matter how long you stay there, we all have the connection of having a baby who needed help we couldn't give them. No matter the length of stay or reason. Share what happened so others know they aren't alone. Be proud of what your child has accomplished.
2) Let Go
The number of people who you thought were there will dwindle. A lot don't know how to handle talking about something challenging like a sick child. Some don't want to imagine it. We had one friend who refused to go see Prudence because of being afraid. Heck, some of our own family had an extremely difficult time spending more than just a few minutes with her. Friends stopped calling, visiting or even texting because they knew that when they asked how you were doing, they would get an answer about how sick the baby was. Its ok to let them go and also to let them off the hook. Its not an easy thing to think about. Its not an easy place to be. Let them off the hook if they can't handle. But also let them go if you can't reach out to them in times of need. You and your baby matter most. Surviving the NICU matters. Friends who were meant to stay will.
3) There is no normal once you leave
Or at least not the one you imagined. Unless you had an extremely uncomplicated stay, more than likely there is going to be an adjustment period where things look a lot different from what a healthy newborn baby experiences. We came home with an apnea monitor, a few follow up appointments and what not. We now have therapy several times a week to help Prudence catch up to her age group. Developmental delays are something that is a given and never as simple as "she just needs time to catch up." It has days when it is absolutely overwhelming. There are days when you realize the true beauty of the term "it takes a village." Because it does. To raise a NICU baby, there is usually several people involved to help your baby grow up. The calendar will fill up and you will learn in time to manage it all and rattle off every detail of your baby's life without having to hardly think of it. This abnormal normal will kind of scare some other people or make them think you are a super hero. But talk about it. Its ok. Don't just tell people they don't understand. Help them to understand what it takes. Its ok.
4) The "next" baby is terrifying.
The idea of the next is scary. Some moms get told there should be no next. That can be devastating. Some mom's get told that they can have more but opt not too. Being pregnant with my "next"baby, I can honestly say it has been hard for both my husband and me. We both feel like he isn't ours yet. We kept thinking it will be different when we finally hear the heartbeat, when we feel it move, when we find out the gender, when, when when. But being almost at the end, its still hard to feel like he is truly mine. There are still so many what if's. And we count down the weeks not in terms of when he will be here but of how developed he is and the likely problems he would have if he came this week.
Its scary. Its a little numbing. I am done with having kids after this one because we have walked on eggshells for the past 8 months. We can't do the NICU again if we can help it. Just so happens we can help it.
5) You will appreciate things differently
I look at videos, pictures and things I wrote when Prudence was in a NICU. I look at my husband in a different light because for 111 days we were single parents to our daughters. My oldest is the resilient one and seems unbreakable and for that I feel bad because she still needs us so much. Prudence's every move is a miracle to me. She climbs, runs and laughs and lives her life with so much zeal. Her first steps were so miraculous because less than a year ago I was told there was a possibility that she could have cerebral palsy. She is finally getting her teeth through which have meant so much to us. She does a lot of things a regular toddler will do and that is the most heart warming wonderful thing. Not that I didn't appreciate it with Lucy, but I took it for granted. Trust me, the way you appreciate things will change forever.
Mostly what I can say is to cherish every moment of it. The fear, anxiety, depression, and sometimes overwhelming heartbreak is worth it. Celebrate every diaper change, every gram of weight gain, every episode free shift a nurse can report. Celebrate every delay that is over come. But don't forget where it started. It is an amazing journey and I truly believe that it has made me a much stronger person. I can say that I am the mother of superheros. So can you.
