Change. This is the theme of our lives with Hope. Nothing is ever the same for long and something that works for a time, usually stops working. Hope has tolerated and then not tolerated certain feeds for the last year of her life. Now that we have tried every type of formula or feeding option, we are going back through and trying a second time. As Hope gets older and her gut matures, there is a chance that something we previously failed at, will now work perfectly.
I often receive advice from people that are following Hope's journey. To all of you that I have never responded to, you are not alone. I get too many emails and do not have the time to respond to each one of them. I do read each of the messages and blog comments and appreciate people taking the time to share. I apologize if this has offended anyone. Many people have suggested that we try removing milk protein from Hope's feeds. This is not something that made sense before, as Hope was tried on a formula without milk proteins and actually become more intolerant. As a result, it was ruled out. For the first 6 months of her life, Hope was consuming my breast milk and a mix of formula. She tolerated this beautifully and I was consuming a lot of dairy. Now that we've run out of options, the doctors have decided to revisit this idea. Yesterday, Hope was started on a formula that is free of all milk proteins. I have never hoped that someone would have an allergy to milk protein so badly. We really want this to work.
Today I walked into Hope's room, just minutes after she had spit up. After spending the night on 1/2 formula and 1/2 pedialyte, I was sad to hear that she had thrown up. Hope's tummy was distended and I feared that we were failing again. As the day continued, Hope did not throw up or gag at all. She appeared to become more content and her belly came down a little, but has a ways to go. The doctors feel that if there is an allergy, her tummy will remain distended for another few days as her guts heal from the reaction to milk proteins. There is still hope that this will work and we are moving forward.
At 6 pm this evening she was started on 75% formula and 25% pedialyte. Tomorrow morning we will begin 100% formula and see how she does. If she tolerates the formula for 24 hours, we will be sent out of hospital on our first pass. Seeing as I was crushed so recently, I am choosing to be very guarded about Hope leaving the hospital. I obviously hope that this will be successful, but am not getting too excited. This is a formula that we have tried, and failed on 3 times in the past.
I am feeling more stable, as the reality of our failed attempt to get home has set in and I'm back into my routine of spending my days at the hospital. I know that I need to be careful as I'm still fairly sensitive and don't want to burn out. If this formula fails, we'll be starting our TPN training on Monday and will have at least another 4 weeks in hospital. I have decided to take this Wednesday as a day for myself. Shawn is going to spend the day at the hospital with Hope and I'll be taking a day to rest and treat myself with some Christmas gift certificates that I had yet to use at a spa. I am praying that a day away from Hope will refresh me and give me the energy I need to finish her hospital stay, however long that will be.
I've been able to start talking to God more and no longer feel the anger I was feeling on the weekend. I do still feel as though I've been in a heated argument with a friend, and getting back to a place of true comfort in our relationship will take a few more days. It is a blessing to know that no matter how human I am, God is still the amazing forgiving God that he has always been.