Eleven years ago Drew and I made the commitment to spend the rest of our lives together, for better or for worse, in good times and in bad, in sickness and in health. Today we celebrated our eleven year wedding anniversary here at the hospital, one of the least romantic places I can imagine spending our anniversary. Drew bought me a raspberry iced cupcake in the cafeteria that slightly resembled a mini wedding cake the way the icing was swirled on the top. It’s the thought that counts, and it was also a pretty tasty cupcake if I do say so.
It has been a very stressful year for us, as you can imagine, with all of Lucy’s medical issues, but our marriage is strong and we have become even stronger and closer this year than I could have ever imagined. I love our life! No, I never imagined eleven years ago today that I would be sitting in the hospital next to our fourth child’s crib side hoping and praying for answers to her health issues. I did, however, imagine that we would grow to have the very strong, loving, and connected relationship that we do have that has resulted in the many small children we call ours. This is our life, and we are committed to making it the best life possible for better or for worse, in good times and in bad, in sickness and in health. I love you babe! I know you will probably read this before I see you tomorrow, I’m looking forward to the rest of our lives together…
Now for an update on Lucy, she is doing better, a deep sigh of relief just came from me as I typed those words to you . I think the saying slow and steady wins the race applies well here. Her fever is way down, but ever so slight so they are monitoring her carefully. Her tube site, or stoma, looks great according to the nurses who have helped me take care of it. I’ll take their word for it, as a mother it is so strange to see a hole in your baby’s belly that has a tube sticking out of it. I know I will get over it, but for now it’s still so foreign to me. Today, I did all of the care and maintenance for Lucy’s tube, thank you very much. She is still experiencing a lot of pain at the site, we are trying to keep her comfortable with IV pain meds.
We started running food through her tube last night, well actually early this morning. The connection from her pump to her port was put in the wrong port on her tube so it disconnected and they fed the bed instead of Lucy. She woke at 5 am soaking wet, smelling of that oh too familiar aroma of Elecare. We have slowly been ramping up her feeds today and weaning her off of her D10 solution. She has been continuously feed today with the exception of taking an hour off this afternoon when it appeared that she was uncomfortable and stomach bile was leaking into her tube. We currently have her at her maximum feed rate, so far so good. Lucy is still NPO until we get the swallow study done on Monday. The plan is to wait until after her swallow study on Monday afternoon to be discharged.
My mom and the kids came to the hospital this afternoon to play and have dinner with us. It was so nice to be together as an entire family tonight. The kids saw Lucy’s new tube for the first time, they were all relieved to see that she still has her belly button. I think that they thought the tube was going to come out of her belly button:), creative thinking. I would probably think the same thing if I were still a kid.
Drew went home with my mom and the kids tonight. He needs the rest! My mom is going home tomorrow, she agreed to stay longer, but we’re pretty sure that we can handle things. We appreciate so much that she comes and takes on the responsibilities of our life for week at a time. She and the kids have their routine. In fact Sophie tells me often that Obachan (grandma in Japanese) makes something this way, or does something that way. According to the kids she makes the best French toast and oatmeal with sprinkles. She makes me laugh when she tells me how busy and active the kids are and how much they eat, she tells me as if I have no idea. I know she is exhausted and is looking forward to going home and resting, but she misses them and all their activities and hunger the moment she leaves and goes back to her normal routines. Thanks mom, for all that you do!
Drew and the kids are going to come back here tomorrow afternoon, we are hoping that they will give Lucy a six hour leave pass so that we can all go out and do something fun in Philly as a family tomorrow to celebrate father’s day. Lucy and I would love the change of scenery. It’s weird how quiet and empty the hospital gets on the weekend. If nothing else, maybe we can go outside and take a nice deep breath of Phily air.
Thanks for all of your thoughts, prayers, and support, we are truly blessed.