So, now this was the fun part, right? Hah… it was surely exciting but so nerve wrecking! We soon learned that the NICU never ends at discharge.
If I am going to be real, and I always will be. I will admit I struggled to approach the discharge. Don’t get me wrong, I love my baby and I wanted to bring her home more than anything. But, in my mind I kept thinking that she would come home like a “typical term baby” would…the NICU was going to allow that to happen. It was going to help her be healthy. The g-tube went against all of that. So, I had to grieve this too, just like I had grieved a full pregnancy and all that goes along with that.
The first week, we were trying to figure out how to live life, not only as new parents but as parents with all of the gear courtesy of the NICU. It was like we had our own little NICU in our bedroom. It was a maze at times trying to sort out the cords and monitors, while learning how to use the feeding pump. Our house beeped all hours of the day and night with all the equipment. To say we were exhausted was an understatement.
I remember feeling such a strong sense of resentment towards my husband during the first few months of “becoming a parent–at home”. I am sure this picture probably resembles much of what occurs in a majority of new parent homes.
Our daughter continued to have GI problems, vomiting became a norm in our home. It was not unusual for her to vomit 3-5 times a day. I would research all hours to find a diagnosis, a specialist, a treatment, anything to help her. Then, I was also fighting with SSI and Medicaid to get coverage for my daughter. If any of you have ever had to deal with these agencies, then you know it is an unbelievably frustrating one. Long story short, I was able to get her on a medical waiver due to her medical conditions but it was a 9 month battle. And, I felt that everything was on MY shoulders, not his. It was a real dark place for my husband and I. But, I will say after some real honest moments, usually painful ones, we have fought our way through it…together, plus the help of a couple sessions with a marriage counselor.
Being a parent means being busy! Each week we have multiple appointments for either doctors or therapies. We are always monitoring something or on the lookout for another thing. But, I will say as she continues to grow and get stronger, we have “graduated” from monthly specialist visits to more infrequent bi-annual check-ups. It is just on her
terms, which I should have known would be the case–typical Lucy. (grins)
I won’t go in depth of our feeding journey, because this is a heck of a story in itself. And, it is still going on. But, I will say that our girl had vomiting issues since day one of being home, and it was awful. I felt awful because she had to go through this every day, and I couldn’t fix it though I tried, I tried so hard. It became a massive science experiment, changing one variable at a time and measuring outcomes. Often times with results that did not make any sense. On top of the vomiting was the struggle with oral eating. She never really ate for us, so each feeding was a stressful event. I remember struggling a lot with the thought, “How can my baby not do something as simple as eat?”
She continues to see the GI Feeding Clinic at UNC Raleigh and receives weekly feeding therapy to help her develop the skills and desire to eat. It has been a very slow process, similar to that of the NICU, taking one step forward and taking two steps backwards. But we are grateful for the progress she has made. See, I told you the NICU never ends at discharge.
This GI feeding issue has been the crux of a lot of my stress as a new parent but I have come to live with it. And when I say live with it, I don’t mean succumbing to it…but more so, accepting it in a way that I still find love and joy through it. It wasn’t always like that, there were many ugly moments where I found myself regretting parenthood. It took a lot of processing and support to accept this as our new norm.
I am still pretty vigilant to anything that happens to Lucy, but I don’t think I would be any different even with a healthy term child. And, I still find myself in moments of healing from the NICU. I still think back on some of the losses from having a micro preemie, like a very plump belly, maternity photos, taking home my baby post delivery, etc. My eyes still well up when I reminisce on the tender moments of the NICU that rocked my soul. I can even admit that I do experience some PTSD-related reactions when things resemble a little too much of the NICU but as time goes on, it happens less and less.
Today, I am proud to say we have made great strides in this post-NICU journey. Lucy has grown stronger and is now walking and making messes everywhere like a typical toddler. She plays and laughs in a way that will surely make anyone crack up. She learns every day and I LOVE being a part of that.
My husband and I can laugh and enjoy one another again. We feel like a team again. We go on dates and we plan for the future. I mean, don’t get me wrong, I still want to throat punch him here and there, but I wouldn’t want anyone else to go through this crazy life of ours.
I no longer medicalize everything (this is huge!). And I have come back full circle into civilization again, socializing, working and making meaning out of all this, because NICU life is extremely isolating. It hasn’t been easy by any means. I still struggle at times but with time, things have gotten easier. I hope that for any of you reading this, you know things can get better.