Weekends in the hospital are not fun! However, the best part of our weekend was hearing from and visiting with friends and family! I can not express in words how grateful we are for the blessing in our life that we are honored to call our friends and family. Our family has been blessed over and over and we can not thank God enough for all that he has given to our lives. So many people are praying for our Lucy and our family, please know that prayers are being answered in many ways for us all of the time.
My parents arrived today willing and eager to help us with our three other major loves in our life, who I miss so much it hurts. When we were admitted on Tuesday, I told my parents not to come, we would figure things out. Instead I encouraged them to go on with their plans to help my sister and brother in-law with their new babies. Matthew and Ryan we born October 15th, and have been a wonderul blessing in all of the chaos of our lives this week. My sister and I talked last night, and she said that she was sending mom and dad our way, she told me we needed them more than she did, and they needed to be here as well. That means so much!
The older three kids had a fun filled weekend of activities, play dates, and sleepovers. They attended a workshop for siblings who have a sibling with a chronic medical condition. We planned to attend this months ago, not realizing how appropriate this would really be for our kids this weekend. Whenever I spoke with the kids this weekend I was so proud of them for being so loving, understanding, and having so much care and concern. I miss them all so much! We did not have dinner together as a family tonight because I knew that they were exhausted from their weekend excursions, and they needed to eat dinner at home, and go to bed on time, so that they could be ready for school tomorrow.
I wish I had better news to report today with regards to Lucy, sadly I do not. She is exhausted and and uncomfortable. At times she is hypersensitive to things and extremely irritable, and then just when you lest expect it she’ll give you a tiny glimpse of her silliness. Lucy is not tolerating any feeds. We attempted again today to start her on feeds and she retched, gagged, and vomited. Her stomach has completely shut down, as it continues to pour out green bile into her drainage bag. We are able to run Pedialite through her J-tube for a few hours before she gets uncomfortable and starts retching, but no formula. Lucy has not had any “real” food since Tuesday of last week. I am afraid to weigh her, we have worked so hard for every ounce. We had to place another new line today as the one she had placed on Friday night stopped working, D10 solution is very rough on IV’s because it is so thick. Thankfully this line placement went much easier than the three hour fiasco we had Friday night trying to place a line. As for Lucy’s bowels, we feel that the Golytely is out of her system now, her stool has changed from looking like apple juice to now looking more like the color and consistency of mud. This sudden change has the doctors worried that she could be malabsorbing what little food we have tried to feed her through her J-tube. Ugh…
Drew and I stayed with her all last night and today, she even went in her wheelchair for a bit this evening, and we walked the empty hallways of the hospital. Towards the end of our walk she was having a difficult time holding her head up, so we called it a night. We tried to get her out and about this morning, but she was too uncomfortable.
Tomorrow our main doc will be in bright and early, we have a lot to talk about. Please pray that Drew and I have the clarity of mind to continue to make the right decisions for our little one. Pray for Lucy’s comfort and that her little body can get the nutrients it needs to survive. Please pray for our marriage that it continues to remain strong through these difficult times. Pray for Jack, Megan, and Sophie that they always have hope and know that no matter what they will always be taken care of and loved!
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