I have often felt like a student through this process with Hope. Today my teaching was on NG tubes. I was given a book to study yesterday, which I carefully read through and tried to absorb. Today was the practical lesson, I was shown all the materials and given some instructions. Then, I was told to give it a try and remove Hope's NG tube and insert a new one. I was very nervous, but I know I have to learn these things in order to take her home. So, I stepped up to the plate and did it! Surprisingly, it was not as bad as I'd thought and I realized that I am capable of learning whatever it takes to bring my baby girl home. The doctor said that Hope could have the tube for months, so caring for it will be my job for quite some time.
Today we started Q1, that is the term for feeds that take place every hour. The continuous feeds were stopped and every hour, Hope received a larger amount of food for 30 minutes. She was then given 30 minutes to digest before the next feed began. Everything was fine until 11am, then we had a large barfing session. It's been 12 hours since the barfing and everything is going very well. She's managed to keep it all down and seems very settled with the new feeding routine. Tomorrow morning at 6am we are going to start Q2, she'll be fed every two hours for one hour. These are steps that lead us closer to home and we celebrate each one.
I haven't been getting a lot of sleep lately, it's after midnight and I've just gotten Hope to sleep. Please pray for strength and energy as we continue to walk through this. We have been so encouraged by everyone around us. Thank you to everyone that sent cards, packages or personal messages. Sometimes I feel like you all read my thoughts! This morning I went downstairs at the hospital to buy a drink at the coffee shop. I was feeling exhausted and needed a little pick me up. The prices were pretty high and I decided I wouldn't treat myself very often. A few hours later, a card arrived with a gift card for that very coffee shop! Looks like I'll be treating myself again tomorrow after all. We are truly humbled by the kindness that has been shown to us, I have learned so much from this experience and believe that I will now support those around me in a different way.
It's a long road to the second surgery. We are not forgetting that we will still be vulnerable after Hope is released from the hospital. Living in fear is draining, we are choosing to walk in faith with her each step of the way and to trust in God's perfect plan for her life. We pray that she will have a long and healthy life, but we celebrate each day with her and take it one day at a time. Today with her was wonderful, when I sit and look into her eyes, I can't help but believe that God never makes mistakes.