It has been just under 72 hours since my littlest guy finally came home from the NICU. He left there on his 77th day of life, all having been lived in the NICU. He weighed 2lbs 12oz when he was born at 31 weeks and left there at 11 weeks (2 weeks adjusted) weighing 7lbs 2.7oz. We are so excited and happy to have him home, but it has also been a big adjustment that has been marred with difficulties. The past 72 hours have been stressful, exhausting, chaotic, and filled with joy.
My littlest guy still isn’t able to eat like he should, so he came home with an NG feeding tube still in and a pump to gavage feed him meals he is unable to finish or eat. My husband and I had to be trained on how to set up and run the pump and how to replace his feeding tube incase he pulled or spit it out. As unfun as all this is (and a little scary), we were willing to do whatever we had to to get him home. We knew that, despite how many fingers we crossed, eventually we would have to reinsert his tube for one reason or another. We also knew that it would take time to become pros at all this, after all, we didn’t become NICU-pro parents over night either. We didn’t, however, expect to be tested by everything all once once.
Here is a little break down of our first few days home:
Thursday late afternoon, we got home with our littlest guy. We had about 20 minutes until his next feed, so we brought all the stuff from the hospital into the house and began setting it up just after being greeted by our older boys, my parents, and a few neighbors. I got a bottle ready for him and began to go through all the things the hospital taught us to do before feeding him; change diaper, check his temperature, and check the placement of his tube by checking his residuals. By the time I began to bottle feed him, we were about 15 minutes late on his feed, which wasn’t too bad, it happened at times in the hospital too. I began to bottle feed him, but it had been such a big day with his homecoming that he tired easily and needed to be tube fed the rest. This is when we hit our first major snag. As soon as the machine was set up, the milk was in it, and we were ready to start, we received an error message. I figured we had done something wrong trying to set it up and get it ready, so I called technical support. They had someone call me back 10 minutes later to let me know that the code meant that, despite it being a brand new machine and this being the first time it was ever being used, that code meant it was broken and couldn’t be fixed. Awesome! So they were going to send someone out with a new pump but it was now rush hour and they were coming from about 30 – 40 minutes away, so to would be at least an hour. Oh great, we were already an hour past when my baby was suppose to eat and he hadn’t eaten much by bottle. Since there was nothing I could do about it, I just did my best to try to get my son to take some more bottle. An hour came and went and then so did the time for my son’s next feeding. By the time the guy got to us with the machine, it had been about three and a half hours since the first call and my son had missed two feedings. Not a good way to start his in-home experience.
After that, we had to feed him late and then try to get him back on schedule. He is suppose to eat every three hours, so we had to shorten the time between his nighttime feeds to 2-2 1/2 hours to get him back on schedule by morning. So on his first night home, we had to get up even more often than the norm. That coupled with it being our first night doing all this and the learning curve, causing things to take a little longer, we got very little sleep. It also didn’t help that my second youngest son woke up several times around 1:30 and had a hard time going back to sleep and then my two middle children were up 40 minutes before we needed to do the morning feed. I’m pretty sure I only got three hours of non-consecutive sleep that night.
The next morning, my poor husband had to go to work and I had to take the baby to a doctor’s appointment. The doctor’s appointment was at 10am, which was when one of the baby’s scheduled feeds was for, so I had to pack the pump up and try it out on the road. I wasn’t exactly excited about this since things with the pump hadn’t gone so well the day before. To add to things, despite keeping my littlest guy’s hands mittened in his sleeves so he wouldn’t pull his tube out, he managed to spit it out, along with a lot of spit up, after his 7am feed. So we pulled the tube out and I figured I could just have the doctor help me put it back in. Things ran long at the doctors, the tube went in easily for me, but I was an hour late trying to feed him. On top of this, I couldn’t get the pump to work portably. I was frustrated, tired, stressed, and worried for my baby. I rushed home and tried to hook the pump back up at home, but still couldn’t get it to work. After another call to technical support, I was able to get the pump working, but by then, it was only a half hour before his next feed, so he had missed yet another feed. The rest of that day was spent with my other kids making demands of me as I tried to feed the baby, the baby crying whenever I put him down to pump, and trying to figure out what I needed to give the baby when. For the most part, I tried to focus on the baby and let my mom deal with the other kids, but that didn’t always work.
From there we managed to get the baby back on his eating schedule and not miss any more feeds or have anymore pump problems. My littlest guy did, however, manage to spit his tube out several more times, including once at 4:00 this morning (that was fun). We’ve also had to figure out timing, dealing with three other kids, getting everyone else fed, and remembering things like meds for the baby, meds for me, changing two sets of diapers (my 2 1/2 year old is still in them), check the babies temperature, and make sure to remember to feed the dog, all while functioning on very little sleep. It has been an adjustment and a juggling act for sure. I am happy to report though that I felt less stressed yesterday, we managed to get a little more sleep the last two nights (of course it is the weekend, so that helps), and we are starting to figure out ways to streamline things and set things up as much as possible to make things easier in the middle of the night. Of course, all this is with two extra adults in the house to help us out and make sure laundry gets done. I have no idea how we are going to manage it all when they leave in a week.
I do know one thing for sure and that is that we are all so happy to have my littlest guy home. My older sons are happier than I’ve seen them in three month. They look like a huge weight has been lifted off their shoulders, especially my oldest. I love being able to hold my littlest guy pretty much all day and he seems to have adjusted well. Within 24 hours, he seemed to get used to the idea of constantly being held and is sure to let us know that he doesn’t appreciate being put down. We have had some wonderful bonding time too. We spend lots of time just staring into each other’s eyes, falling in love.
It might have been a rocky start to my baby’s homecoming, and it is far from smooth sailing from here, but I know it will also get better. We will all tread water until we can figure out how to settle in and swim in our new little pond of chaos. It will eventually all become second-nature and we will become pros, at least until we are thrown that next curve ball, like a family outing. Until then, we will just enjoy the little pockets of quiet we can get.