In all my wildest dreams about Button's birth, I never pictured the NICU. Though I don't think anyone anticipates or dreams about their precious bundle being admitted to the NICU. Even now after having our girl home a whole week, I feel like crying when I think about the time spent there. It's hard to explain how the NICU makes you feel as a parent. You are utterly helpless watching your brand new baby struggle to live. You have to step aside and essentially give up all your parenting. You have to give complete faith and trust to the nurses and doctors, while you put aside your mommy sense. In some cases you can't really touch your new baby, much less hold them. And you must settle with singing to them or reassuring voices for comfort. The NICU takes away all the basic parenting and you are left feeling helpless and lost.
The first day felt impossible. We were given so much information, yet no one seemed to know what was wrong. All anyone really seemed to know was that our girl was very very sick and not getting enough oxygen. The doctor wasn't sure if it was a heart issue, infection, fluid in the lungs because she came so fast, or that her lungs weren't developed enough. There was talk of flying her to Seattle and the children's hospital there. The staff kept saying twelve hours. The following 12 hours would be crucial. Twelve hours! I can't tell you the amount of fear that gives you as a parent. This beautiful feisty little girl that I had given birth to just over 12 hours ago could potential be gone in another 12. It shattered my heart and I felt completely undone. Luckily, Button is a fighter. She is feisty and strong. I am so thankful for those things. The doctor opted to give her antibiotics, a breathing tube, sedate her and do a echo on her heart.
For eight months I carried her, I dreamed about how she would look, and I imagined those first few days. I never pictured her being hooked up to all sorts of machines, having an iv in her belly button, or a tube to help her breath. I never imagined that I would be released from the hospital and she would have to stay. I counted on sleepless nights loving on our newborn, not worrying about her at the NICU. That's half the struggle, the desperately trying to find balance between home life and the NICU. It's impossible to do and left me drowning in guilt. Because it wasn't just Hubbins and me going through this. Our big girls were affected to, only they didn't really understand. They couldn't be at the hospital since its flu season; they couldn't see their baby sister. They didn't understand why she didn't come home with mommy, or why mommy and daddy were gone so much. How do you explain to a 3 and 6 year old that their baby sister is fighting for survival? How do you tell them how bad things really are, when you don't really understand? You can't, not really. So you try your best to juggle it all.
You work really hard to not let the guilt eat away at you. That was one of my biggest struggles, the guilt. I felt guilty that I failed in protecting our girl. For eight months I carried, loved and protected her. My job was to bring healthy baby into the world and continue to keep her safe. I failed. I'm not looking for sympathy there. I failed, and I know it. I also know that there were outside influence. There were things I didn't expect. No one could have. So I don't feel guilty now, but that first week I felt like I was drowning. Not only was I guilty for failing, but I felt guilty no matter where I was. If I was at home giving the girls much needed mommy time, I felt guilty that I wasn't with Button. If I was in the NICU with Button, I felt guilty for neglecting the girls. There is no winning in that situation. Only deciding what the least awful path was.
There are so many up's and down in the NICU. With every couple of steps forward Button made, there was always a step back. The first week was spent praying for answers, for improvement. Each time we spoke to the doctor or got to the NICU, I held my breath. I waited for news, good or bad. Then finally at a week old, her test came back leaps and bonds better. They were taking the lines out of her belly button. She could handle being off the ventilator for short spurts. They would be able to start stepping her off the ventilator and the sedation. We could breath a little easier.
But as she got better and they stepped her off, new things came up. Button had been on her sedation for so long, she was having with drawls. The second week began on a sour note. Button was cranky and the staff was unable to continue weaning her. They needed to get her back to being stable first. The only positive is that we could finally hold her. After over a week of waiting and worrying, holding Button was like finding a unicorn in the forest. It was magic and healing. Not just for her but for us as well. We were able to cuddle with her, sing her to sleep, rock our baby. All those amazing blissful things.
She was also able to finally get a bath and wear her first outfit. They did her foot prints and normal things. You would have thought it was her birthday, the excitement Hubbins and I had. Her first bath was long waited and the first normal baby thing we got to do with her. We were slowly getting to be parents again. Even the smallest things were celebrated. We could change her diaper and take her temp during care hours. I didn't expected to be elated about changing diapers, but I most certainly was.
Finally they were able to take the breathing tube out and take her off the sedation. Rounding into the end of the second week, Button was finally starting to be more baby like. We were allowed to hope. There was in fact a light at the end of the tunnel.
We had another set back going into the weekend. Button's withdrawals were out of control and they would need to put her on morphine. We wouldn't be taking her home after two weeks and were looking at one more. It was heartbreaking and frustrating to see all her progress over shadowed. But we had to keep the faith. Luckily, the NICU staff is amazing. Even in the worse moments, they were a constant support. The nurses truly cared. Some of them cared more than I would have expected and the comfort it brought is priceless. The nurses were a constant life line for us. They reminded us that she would come home. She was getting better, and progress is good. Small victories became my mantra.
Finally at the beginning of our third week, Button got a new bed. An actual hospital bassinet. She was also able to swing and I could breast feed. Visiting her became so much easier, and leaving was so much harder. But we could see the light, almost touch it. Then finally after 2 1/2 weeks, we got to bring our Button home.
That last night in the NICU with her was blissful. I was so ready to bring her home and start our life as a family of five. But it was bittersweet, the staff had become part of our family. They saved our baby and took care of her while she fought to live. They helped her breath and for that I am eternally thankful. We were aware just how bad things were, until the end. No one told us, we almost lost her those first 12hours. That in the beginning the nurses worked over time to protect our girl and us. Not only did they help her fight to survive, they kept us strong. Because I don;t think I could have survived through the first 12 hours knowing just how close to her going away we were.
I am so very thankful to the NICU staff, to my family and friends. To everyone who was there for support and comfort. I can't thank enough the people who cared for our big girls while Hubbins and I cared for Button. I am grateful to my best friend who sent flowers to brighten my day. To my mom who came down two weekends in a row to be there for me, to make sure I would get through it. To my dad, who visited regularly and was my rock when needed. To my sister in law, for loving the girls, being their for support or a laugh. To everyone who prayed for her, provided food for us or simply cared enough to check in. I'll never forget the NICU or the people that helped us all live through it.