It took me about a week to accept that Mr. T was going to be in the NICU for the long run. That his health issues were serious and were not something that would be done and over within a few days, never to be talked about again. I was naïve when we first walked through those NICU doors. It was a Saturday and I remember thinking we’d be home by Monday. What was I thinking? He was about to have surgery, how did I expect that to last a day or two? It was a nurse that made me realize this was something bigger when she said to me “He is here for the long run, you should expect him to be here for at least 3 months”. My heart sank in that moment. I remember walking away and locking myself in a breast pumping room and sobbing. She had just burst my denial bubble but it needed to be done.
I was lost. I didn’t know anyone who had been through such an ordeal. I felt alone. The only thing that saved me from feeling totally lost was knowing that Mr. C was feeling just as helpless. We were in this hell together.
Looking back, I think there were ways in which we could have made the NICU stay a little easier for us especially as first time parents. I wish someone could have given me some tips on how to make a completely unbearable situation just a little bit more bearable.
I’m going to share with you just a couple of the lessons that I learned. Basic, small things I could have done differently which may have allowed my heart to heal just a little sooner than it did.
Accept your situation: I was in total denial for at least a week. I can’t even pinpoint when I finally accepted that this was going to be our life. When did I finally allowed myself to grieve for the loss of my dream? The dream that I had as a first time mother. I was not going to get to rock a newborn in the peace of a nursery. I was not going to have my baby sleep in the cradle that was sitting beside my bed at home. Instead I was going to give my child skin to skin kangaroo care, with tiny wires getting tangled up in his feet. Lullabies would be sung above the beeps of the NICU machines and I wouldn’t be able to give my own baby a bath for weeks.
This was my reality. If this is your reality, accept it. The sooner you accept it the sooner you can grieve for what will not be. You can move on and be strong for your baby. You will be in a better place to advocate for your child, to make the best decisions and to understand what is going on. It is so important not only for your own sanity but for the well-being of your child.
Personalize the crib/ incubator: Bring in mobiles, pictures of your family, your own onesies or baby blankets. It will help the environment feel a little bit more like home. It will make you feel like you have a little bit more control over the situation. Most NICU staff encourage you to bring in these items. Unless there are circumstances that don’t allow this, try it.
In the beginning I was too angry to bring in these items. The nurses urged us to bring in at least a mobile, saying that once Mr. T woke up and started to be aware of his surroundings it would help. I didn’t want to because I didn’t want him to be there. It was almost my way of saying screw you. Ok he had to be here but I didn’t have to like it and I wasn’t going to make it pretty. Eventually I gave in, realizing that my stubbornness was not helping the situation. It was the only way to make both him and us feel like we were home.
We brought in a mobile, some of his own clothes, pictures and even a Glo-worm that we received as a shower gift. The nurse was right, it did brighten things up a bit. As soon as Mr. T. started to be more aware he spent most of his awake time staring at that mobile, and eventually it took its rightful place on his crib at home.
Celebrate the small things: Did your baby gain half an ounce? Woo hoo!! Celebrate!! Did they make it through a night without desatting? Acknowledge the moment. Did they finally manage to eat an ounce from a bottle on their own??? That is almost cause for a party.
I remember holding my breath each and every time they weighed Mr. T. Nearing the end of his stay, one of his biggest issues was his ability to eat. They monitored this by his weight. Mr. C. and I would hold hand hands when they slowly placed him on the scale and if that number went up at all, even by a half an ounce we would whoop it up, high fiving each other and Mr. T. It was the hugest deal to us.
A NICU baby will probably not hit all the regular milestones while they are in hospital. While the average baby is learning about the world your baby is trying to grow, get strong, survive. Don’t worry, once they are out, they will catch up. They may need some assistance sometimes but eventually, barring other issues, they will make those milestones. So for now, celebrate each and every moment. Each accomplishment, regardless of how small it may seem, is a step towards home. Live it up!
Take Photos: This was difficult for me. I didn’t want to remember those moments. I didn’t want a life time record of Mr. T looking battered and bruised. Tiny and helpless lying in his incubator with a tube down his throat helping him breathe and another one through his nose feeding him. I wanted to leave and never look back. I avoided photos. We didn’t take one single photo, with the exception of right after birth, for an entire week.
It is my biggest regret.
As hard as it was to see him so sick and vulnerable, it is a part of his story, a part of who he is. I wish that I had taken photos of him so that he knew just how far he had come. Just how strong he is to have overcome what he did. When life gets tough I wish I had those photos so that I can show him and tell him, “if you got through this you can face anything”.
Take pictures, even if you are unable to look at them, take them. One day you may want to remember.
Don’t think this will be easy. It will be tough and you will probably have moments when you don’t know how you are going to move on. You have to take one step at a time. Live it minute by minute, hour by hour, day by day. Believe it or not, there are ways in which you can make the situation even tougher. Don’t do that. It’s hard enough as it is. Try to find ways to make it easier for you. It will help you stay strong. Help you to not fall apart. Help you begin the healing process. There is no manual, no guidelines on how to survive this, but here are just a few things I wish someone would have told me.