I was so worried about our visit to clinic today, especially after our last visit which ended with us spending another weekend at the hospital. So in preparation for our visit today I packed weekend bags for the both us. My thinking was that if I was prepared to stay then they would send us home. I am not sure if that really was the trick or not, but we are back home after only a day trip to Boston. It was a really long day mostly spent waiting for lab results but there was no way I was getting back in my car to head home unless I new for sure that everything was okay. We waited for almost three hours for our lab results. Fortunately we did hang around because the first sample that was sent down was contaminated with TPN and the sugar count came back way high. They drew another sample and everything came back perfect.
Short bowel is something that I never even heard of til Juliana. It's a very complex situation that tends to absorb me mentally, mathematically and most definitely emotionally. I found myself in tears the night before clinic wondering why. Why can't Juliana eat like every other baby? Why is my child screaming for a bottle and I can't give her one? Why do I spend my days and nights thinking of poop and urine measured in grams per kilo per hour? There really isn't a good reason explain why we are here in this situation right now. I don't know why Juliana was born so early. The doctors don't know why my water broke and this is what makes this even harder. Is there something that I could have done differently to prevent this? Each time I ponder this question I come up with the same answer. No.
While I can't stop my mind from wandering every once in a while, I can remind myself that this couldn't have happened to a stronger kid. Juliana is the strongest person I have ever known and because of her I am a better, stronger person. I have learned more about life and medicine than I could have ever learned in a text book. She has changed my whole outlook on life and for the better. I am so glad to have her in our lives regardless of the stress, sleepless nights, financial strain, messy ostomy bags, feeding tubes, etc. She is our little miracle and I couldn't imagine living a day without her.
We are so glad to have her home and even more excited that we don't have to go back to clinic for another month. (Yeah!!!) We do still have to go back next week for another visit to the retina surgeon, but that trip won't be as stressful as waiting for lab results. Please continue to keep Juliana in your prayers. We are so grateful for everyone who has supported us through this journey and I know you all keep a little piece of Juliana in your hearts.