Life at Home...

Life at home is wonderful. Super busy, but wonderful. The first day at home was a bit of a blur. A joyful blur. We were greeted at home by our home healthcare team of nurses and administration as well as supply companies, RTs, and the oxygen man. I was quickly swept away from the moment with a million papers to sign. Our home nurse left early that afternoon to give John and I some family time. Later that evening we all slept on the living room floor together. It felt so good to be that close to each other and safely under one roof. We came an official family of three that night. My heart felt whole again. The rest of the week was filled with phone calls, arranging appointments, dealing with missing medical supplies, working with the home nurses to learn Sophia's routine, and John and I adjusting to our now mommy and daddy roles. At home we are able to put our MD badges in our back pockets, but we still whip them out time to time. Evenings are busy for us. Sophia's nightly routine is quite tasky. Getting her transported to her room with her all her gear takes a minute. Then we start our nightly routine of trach gauze changes and care, gtube care, tube feedings, clothes changes and bedtime stories. Followed by getting up and down all night to answer monitor and vent alarms. Sophia has been alarming her apnea monitor 3-5 times an evening. I've already spoke with the doctors and they have came to download the monitor but for now we just have to keep watching her. She also likes to keep us on our toes by disconnecting her leads and knocking loose her vent tubes. Talk about an adrenaline rush in the AM.Thank goodness for great home nursing during the day. It is wonderful to have the extra hands and eyes to help out around the house. It also allows mom and dad to get a few peaceful/worry free hours of sleep. This first week at home has already gone by so quickly. We have even had our first doctors visit already. We went for our well baby screen with our ped doc. That was definitely a test run for getting her in transport mode and all packed and ready for an outing. It certainty takes patience and organization to get her packed up and ready in a somewhat timely manner. We really are never going anywhere fast. We literally started to get her ready to leave the house two hours before we needed to leave and made it out the door just in time for our appointment. Loading that wagon is seriously either going to make me super strong or make me through out my back. Not to mention my car was packed to the brink. Sophia's poor nurse was cramped in the back. So needless to say, John and I went looking at vans today. Yup, VANS. I told my husband to face the facts, we are old and we need a van. With all of the craziness this week has brought with adjusting to home life and dealing with missing medical supplies.  Nothing at all compares to the feeling of being able to turn around and see my baby at any given moment and walk up and kiss those cheekies. Having the ease of mind and heart of being together is a gift.