Juliana is finally home. A sentence I never thought I would say after 209 days in the hospital. She came home on February 5th (my birthday!). The first night was pretty rough for us. Juliana slept through the night but I sure didn't. Between emptying her ostomy bags every 4 hours, refilling her feeding pump and the pulse oxometer going off every time she moved it was quite hard to get a good nights sleep.
Almost a week later we are settling in and everything is going very smoothly. We have a visiting nurse that visits us once a week and an infusion nurse that calls to check on us. I was a little nervous about being home with both kids alone but little Omar is a great big brother. He has been very helpful and is always on binky patrol. Dad is getting used to working with her central line and has even set up her omegaven infusion at night. Juliana is very alert throughout the day and her cry is stronger than ever.
Tomorrow will be a big test for us. We are taking her back up to Boston for her first clinic visit. This will be the first time she has left the house since we brought her home. For the last few days I have been preparing her bags and double checking to make sure we have everything we need. I am very nervous about this trip because it will be a very long one. We have an 11 am appointment at the eye doctor in Boston and then a 1 o' clock appointment at the hospital. I am told that our first visit at the clinic will be at least 3 hours which means we will be done just in time for rush hour traffic home through Boston and then Hartford (yeah!) I just hope that we can make it home in time to put her TPN and Omegaven up at 8pm.
It has been wonderful being home with both of my children. It's the best thing ever to see how much they love each other. Now that we have settled in and have established a routine (that does not involve spending weekends in Boston at the hospital) I will try to spend more time updating everyone on how great Juliana is doing. I suspect that she will just blossom now that she is surrounded by the love her family every day all day. Thanks so much for your prayers.