Home

We walked in the door and it didn't feel like home. LeiLani went into immediate shock and her oximeter began beeping like crazy. The alarm on that thing is incredibly loud and even on the quietest level you can still hear it go off from outside the house. The house was stuffy and smelt like Kyle's work clothes. Kyle was bringing things in from the car and I was trying to figure out where to set up Leila's feed because it was a little passed the feeding time. The NG hooks to a bag that holds the milk she'll take. That bag is connected to a machine that looks like an old Gameboy. We were told that the bag had to be roughly a foot above the machine so that the cord didn't clog up and the feed would be more successful. To make this happen you can get a pole from Home Health but we didn't have one yet. We ended up just pinning it to the wall. I moved Leila's bassinet to the living room and let her be in there while the feed ran and I started to clean up the house. She cried a lot and the feeling in our home was tense as we both scrambled to get settled in.

Kyle went to work shortly after we got settled in because we had gotten home early enough he could still get some hours in. I was left alone and I set up the couch, grabbed a few blankets and I snuggled my baby. I dreamt of this moment everyday while she was in the hospital. I dreamed of it differently than what reality gave me but that's life. I found myself overwhelmed with the clutter in my home and wasn't able to clean. Do you ever look at a mess and have motivation to take care of it but you don't know where to start so you just don't do it? That was me.

The next day Leila had her first appointment with her pediatrician and this is quite a story. We all woke up at 7 and Kyle got ready for work. I made it a mission to not be the mom that's painfully late to her appointments. I got LeiLani dressed warm and began her morning feed. I went and got myself ready and found that I still had 40 minutes until it was time. In my head I thought about how I didn't understand how families are always running late but I would soon learn. I grabbed Leila's car seat and set her inside. I had to take her oxygen and the annoying oximeter with me. I packed her diaper bag and was all ready to go. Forgetting Leila was still attached to her running feed I lifted her up hands full and turned to walk out of the room. This is where I learned how families are always late. The tube pulled right out of her nose and she started screaming (the tube doesn't actually hurt her. It's just uncomfortable). Milk was squirting all over my bed and she still had half the feed left. For a second I thought I could totally put it back in myself. Then I remembered that no, no I couldn't. I grabbed the feeding supplies and supplies for the NG and left to the car with Leila still crying over what just happened.

I'm about half way to the doctors office and I see that it is five minutes passed the time we are supposed to be there. When I got to the office holding all of my daughters attachments I felt like everyone could tell I was a mom who didn't have her shit together. The receptionist didn't even realize I was late so that was cool. During the appointment I just kept apologizing for everything. Leila's nurse had never done an NG placement before and it was still pretty new for me as well. She held her head while I inserted the tube. To my surprise I got it in rather quickly and my taping job was immaculate. Literally. I was so proud.

My dad came over just after we got back from her appointment and he looked concerned the entire time he was at my house. Some of it was because of the late notice for November rent taped to my door when he initially knocked. He lent me his phone (oh yeah, btw I shattered my phone) so that I could call Home Health and get the rest of my equipment since I couldn't work my screen to answer their calls. LeiLani's oxygen was in the red zone meaning it was just about empty. I vented my feelings of being home and cried a little. I didn't realize coming home would be so stressful and unfulfilling. I dreaded going back to work for several days even before we had been discharged from the hospital. My head was foggy and I couldn't tell you what end of my life was up. My dad came back to my house every day the rest of the week. Laura offered to come clean my house and even brought her own cleaning supplies and food. She organized my clutter and helped me throw a lot of things out. She washed all of my dishes and cleaned under my furniture. That day my house was organized enough that I could breathe again and I knew where I could put all of Leila's supplies so they weren't all over the house.

We kept running feeds through Leila's NG for a few more days and then the next week when we woke up to it in her hands. We were warned that kids pull their tubes out in their sleep and that's exactly what happened. I look over and as she's holding her tube (with it dripping milk) she's smiling. I went to go put it back in and Kyle said he wanted to try for a day only bottle feeding and see how she managed. We made it that day without the tube and successfully ate each bottle without throwing up. Later, I reached out to a support group for CDH families and asked if any other kids had this happen. Turns out the tube can cause an aversion to eating by mouth but once it's out the kids can thrive. We haven't placed the tube since.

The first weekend being home I went back to work. I still felt a heavy weight but I knew I needed to do this. The house I am over was still afloat, the individuals were happy and I got to know my new employees. When I left that evening I felt really good and really motivated. The key to success at work is to not bring your home life to work. Same goes for home. I don't know about you but I have always struggled with that. I am always working that's just how I am. I have been successful so far with not worrying about my home life while I am at work. I am able to focus on the individuals that I care for and when I go home I leave work outside. We have been home for almost four weeks and I have felt so balanced. LeiLani and I have a routine and she sleeps through the night.

Adjustments are always rough, but after you find your groove it's amazing how quickly you rebalance. Leila wakes up with smiles and is very expressive. She loves baby Einstein's music and rocking. Her very favorite thing is bath time which, thank God!