Four days after Max came home from the hospital, Addie was able to join him. Her homecoming was far less dramatic than his and she was as calm and happy about coming home as the precious photos of her in a floral smocked dress and perfectly coordinated accessories would suggest. It was one of the most surreal feelings that Sunday afternoon once we were home and unpacked. We sat there on the couch with both babies and didn't quite know what to do with this blissful new freedom. It had been eight months since I had been home on a Sunday afternoon and all our experiences of holding our babies including a room full of company, alarms and at least nearby flurries of activity. Now our home seemed so refreshingly but eerily quiet and the fact that these precious babies were at last together in it felt both extremely exciting and somewhat unnerving. We sat and soaked it up, smiling, feeling grateful and triumphant. For those few minutes, we savored the milestone.
And then we got up off the couch and we carefully mixed up special formula for babies with kidney issues. We spent half an hour cajoling to get them to begrudingly drink less than an ounce before we then set up their feeding pumps and primed their food and made sure they were fed. We lined up medications and took great care in ensuring that each baby got their correct dose at their correct time. We designed systems for how we can do all of that without error. Then we went upstairs to what was once a game room but had now been coverted to our little home hospital. Two cribs and two dialysis machines and two IV poles dominated the room and made the lingering couch and television look suddenly out of place. We put masks and gloves on and helped each other hold down a baby one at a time while we changed the dressing around their catheter sight, carefully cleaning it and applying antibiotic cream. We then temporarily removed the masks and gloves and stripped each baby down to weigh them. We recorded the weight on our trusty chart and then took each one's blood pressure. With that information, we then determined how much fluid we thought needed to be pulled with dialysis and made decisions about how to set up their machines. Since we were still so brand new at doing this, we then exchanged texts with our wonderful dialysis nurse and confirmed we had made the best decisions. Then the gloves and masks went back on and we meticulously set up their dialysis machines, calibrating them to their needs that day. Then we lathered everything in iodine and cautiously connected each baby to their machine. A lot of buttons were pushed, sweat was collecting under our masks and finally they were running on dialysis. They were now going to spend the next 17 hours within 6 feet of their machines in the gameroom hospital. We sat there with them, holding them, playing with them, watching the machines carefully, addressing any beeps or issues that would occur.
And once they were all sleeping, I left Al upstairs to sleep next to them, and snuck down and get some sleep while always listening for beeps and worrying about how they were doing. My alarm went go off at 5am and I got dressed and left for my teaching job. The Monday after Addie came home was my first day with a brand new set of students so it was enthusiastic introductions, repetitive rule emphasizing and high energy and activity. As soon as the students left for the day, I ran to my car and hurry home to my second job waiting for me. Hug and kiss the babies. Soak up the novelty of them being home. Laugh and take great joy in everything they did. And then load them upstairs, get out the masks and gloves and start again...
That is how the first 24 hours of them being home went and it is how every day was for a while. A couple of weeks after they came home my in laws arrived and helped with staying up at night and listening for the machines. My parents would come over and help play with and entertain the babies. But, Al and I had decided we would be the only ones to do the actual medical care so it continued to follow the same basic schedule. My teaching job would many days feel like my easy relaxing job and this new home routine felt like the most wonderful, rewarding, important and incredibly difficult job I had ever done.
By the time that first week of school was done, I had never known tired like I felt then! I remember missing the NICU. I loved having my babies close and I loved being the one to take care of them but the reality had really sunk in that we did not bring healthy babies home- we brought home sick babies needing a hospital level of care. It was an awesome privilege that we could do that at home. And it was incredibly difficult. And I did miss my beloved nurse friends who took care of all the medical details and listened to me ramble about my day while I just held my babies all afternoon. I missed having like 5 doctors check on them every afternoon and knowing it was never really up to me to determine if they were doing okay or not. I missed my village that I had come to value so deeply. It was a big adjustment.
And then Saturday morning came. And I woke up in my bed instead of the inflatable hospital mattress at the Ronald McDonald house. And I went upstairs and laid down on the floor with my sweet hooked up babies and cuddled with them for a couple of hours. In my pajamas, in my own house. And it felt amazing. When dialysis was done and they had 6 or so hours of freedom, we got them all dressed up and loaded them into their precious personalized car seats and took them for their first ever trip to their grandparents house. I took hundreds of pictures of the beautiful moments of them being there. Eight months old and they were getting to go outside for the first time, getting to see new things for the first time, getting to go to their grandparents house and play with all the toys accumulating there for them. Eight months of life and my babies were finally living. And that day I didn't miss the NICU. I didn't care that I was tired and worn out. I didn't care that we would have to go home and head up to our gameroom hospital and pretend to be nurses. All I cared about was that my children were enjoying life and I was getting to watch them experience it and I felt so blessed.
The next couple of months adjusting to having the babies home would follow this same trend. It was incredibly hard work and I would feel insanely exhausted. I would miss my NICU friends and the reassurances of living in the hospital. But I would savor each new experience and soak up the joy and know each night when I went to bed that Max and Addie were exactly where they were meant to be.
When I think back on those months now, I admit I wonder myself how we managed to do it. We would daily have someone express something along the lines of 'how do you do it' to which we would answer with anything from a shrug to a full blown explanation of how blessed we are to take care of these children. But the truth of the matter is that we did it back then because they are our babies. And that's what you do for your babies. Whatever it takes. Like the old story of the mother who found she could bench press a car to save her small child, we surprise ourselves with what we can do for our children. With what we consider it a joy to do. And in that respect, our early days with our babies home were no different than any new parents' experience. New parents do not suddenly dislike sleep and become fascinated with poop. Rather they wake up all the time and go through piles of diapers because they love the new baby in their home. Parenting is exhausting and it's challenging and it is selfless. And it a joy and it is most rewarding sacrifice you can make. And that is exactly what those days were like for me. Rushing home from work to sweat under my mask and try and help run our gameroom hospital- it was parenthood in the extreme: joyful draining sacrificial love.