I have been thinking all day that I needed to post an update but didn't know what to right about. I know that you probably are all thinking that is crazy. We have had so much going on lately that there should be a ton to write about. I usually try to right about the positive things going on and we have had plenty of that to write about lately but today I don't have a very sunny outlook. I am trying to stay positive... negativity is my devil.
For the last 2 weeks we have asked and prayed to the Lord asking him to protect our little girl through the surgery, asked him to control her pain, asked him to help her heal quickly, etc. I am truly thankful to Him because he delivered on every request. I believe that we are all given a path to walk with hills maybe even mountains along the way. Our little Gabby has been selected to have more mountains than hills and we as her parents have been chosen to take this journey with her. Bart and I have said all along that we were chosen for a reason, God had something to teach us. That lesson is on going all the time and never ending. I believe that one thing is trying to teach me that my faith should NOT waiver that no matter the outcome it is His plan. But I also believe that sometimes the devil tries to reroute our path. I learned yesterday of a conversation that happened this weekend about our circumstances. As I said before we have asked and God delivered and the devil is angry. This is what the before mentioned conversation was about the devil being angry. I do believe this to be true. And I believe him to be trying to weasel his way into our family with negativity. I refuse to allow this to happen but it is incredibly hard. My family unit is strong, Bart and I work hard to keep it that way. I will not let the devil step in. Please pray for our strength, our faith.
Yesterday never seemed to end. Because again last night Gabrielle complained again all night long that she was uncomfortable and didn't like her NG tube. We ran her feeding overnight as usual. When did wake from a short nap this morning between 7 and 8 she promptly threw up. After spending some time cleaning that up we decided to walk across the street to the hospital and see if we could see urology. But before we went important business was conducted and we removed her NG tube. We wanted answers. They want us to fill her full of Pediasure at night and then expect her to eat during the day... how? She is full. Plus on top of that you try to eat and drink with a tube in your nose and throat. She asks for food but then gages when she tries to swallow it. So when we went to Urology we got to see Nan the nurse practitioner. She talked to nutrition and they decided to give Gabby's stomach and us a few days to rest, she said she could tell by looking at us that we were exhausted. Hopefully tonight Gabby will rest better. Now we need to figure out how to stress the importance of this to Gabrielle. The tube is out and you need to take this opportunity to eat and drink but yet she will not (lurking in the background is the devil with his negativity). We also had general questions to ask about her suprapubic drain bag from her bladder and were told to start flushing it out with normal saline nightly to prevent build up. I asked if she would continue to be on the Gentamicin bladder flush and the oral Bactrim (both antibiotics for her bladder). We were told that once the suprapubic tube is gone she would be taken off of them. Another question we had was about cleaning her incision site and were told to do so with soap and water. All in all a good meeting with Nan. We are scheduled to meet with Nutrition Thursday @ 11am. We will meet with Dr. Alam next Friday the 24th.
We are truly grateful for all of the positive energy and the prayers that have been delivered our way. Bart and I will never be able to express the gratitude we have toward each and everyone of you. Thank you and as always please continue to pray for good eating and positivity!
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