I have learned through this experience that optimism is a dangerous thing. In full awareness to the danger, I feel extremely optimistic that Hope will tolerate full feeds on the breast milk and will be home in less than 4 weeks. I tell you this, not to convince you, but to prepare you for the extreme disappointment I will feel if this does not happen. I'd like to believe that this is a mother's intuition or God speaking into my heart. I simply believe this is going to work and it's going to blow the doctor's minds. I often daydream of Hope being discharged on the morning of her birthday party and wheeling her into the party with no entourage of nurses or an IV pole. It's a beautiful picture in my mind and in stubborn optimism, I refuse to let it go.
Hope has started eating once again. For the next 24 hours she will receive 2 mls an hour of what we've started calling 1% milk. Hope is technically out of the chylothorax treatment period and is ready to have fat reintroduced to her diet. The doctors are playing it very safe and are not ready to hit her with full fats, especially with Rotavirus in her system. So I continue to remove the fat from her milk, but with less care and a more laid back approach. As a result, it's no longer fat free, but not full fat either, so we call it 1% milk. This wastes much less of the breast milk and will ease Hope into the fat content of the milk that is to come. Our goal is to have Hope eating 5 mls an hour by Monday morning.
Hope's poop was sent yesterday for lab tests and came back today, still positive for Rotavirus. That makes this all more complicated, more food could cause more poop. Please pray that as we increase Hope's feeds, that we do not increase her diarrhea and send her electrolytes off the wall. That could set us back a great deal and will force us to continue waiting before we move up on her feeds.
If we reach Monday morning and Hope is doing well on the 5 mls an hour, they will begin upping her feeds by 1 ml every 12 hours and lowering her TPN (liquid nutrients) each time they up her feeds. At that rate, it will take us about 3 weeks to arrive at full feeds. Assuming there are no further set backs or unforeseen issues. All of which I have already confessed will be very difficult to accept and will likely make me cry. We all know how I feel about crying, it's like requesting a migraine.
Shawn is away this weekend with some guys on a ski trip. This is so important for his mental health and it is always wonderful, as a wife, to see your husband enjoying life. I'm not completely crazy though, I am still fully aware that this means a weekend of craziness for me! There will be a few hours tomorrow where I will be at the hospital alone, with two kids! This is not easy and will involve a lot of TV and ipad games for Sadie. To all the TV hating parents in the world, I promise you would change your mind if you had a chronically ill child! Please pray for my sanity as I balance both children and not having Shawn to help me at night when I feel like I need a break. Please also pray for Shawn and his friends. Pray for safety and for an all around enjoyable weekend of good laughs, fun memories and a mental break that will bring them back refreshed.
I am currently in a season of dreaming in faith. I have decided that Hope will come home and that when she does, we'll have time to enjoy her. It may not be as long as I would like, but I dream of that time and all that we'll be able to experience with her. I know that God has plans for her life and I'm simply trying to be the event planner's assistant! I am still aware that we could lose Hope and that it would be difficult to deal with that loss on top of my disappointment. I'm not as delusional as some doctors may perceive. I simply find that faith in God's ability to heal Hope, His ability to bring her home and His ability to give her a future, give me the ability to get up and start each day. Although God is able, it does not mean that He will. I choose to cling to the hope that He is not only able, but will. I pray it is true and yet confess that I will love and trust Him either way.