It has been tough to get out posts the past few weeks. This is my first phone post. With long work days, visits to the hospital whenever I am not working and just so much to catch up on in everyday life it grows tougher to keep a grip on everything. I was able to spend the day with my girls on Wednesday. We had a good day overall. It has been a tough week. Mary has especially been hit hard. Remy has seen some ups and downs this week. While she is now peeing like crazy and releasing fluids she is not losing much weight. Her chest tube was removed and then had to be reinserted just four hours later, due to air accumulation outside the right lung. Her left lung collapsed improved and again collapsed and improved. Her eyes are still unable to open despite some short moments of squinting. She remains swollen and the staff is having trouble locating good veins to move her I.V. lines, as this has been necessary to do. Her oxygen settings needed to be raised, btut she was taken of the nitric.
We are being patient, as patient as possible, but it is growing more difficult. We worry about our baby girl so much. We have watched so many new babies arrive, and so many recently leave. While extremely happy for our newfound friends and there healthy babies, we want so much to see our little Remy follow in their footsteps and see progress now!
We had lunch with our cousin Cindy, who is like a sister to me. For those of you who don’t know, she has had the great misfortune of watching her 3-year-old son Ty suffer from cancer and has spent her past nine months practically residing in the hospital full-time. It was so great to spend even a short time together. We talked about how we just want our babies to stop suffering and be okay, and how much our lives and perspectives have changed in so many ways. We are going through two very different experiences but share so many of the same. Most of all, we want for our children to be okay and would trade places in a second with them if we could, and we ourselves just want to get back to worrying about normal stress.
Mary and I know that Remy has a long road ahead of her. We do not feel sorry for ourselves. We are just drained and scared and want to hold our girl again. Remy has been on different means of life support for close to a month now and while she has made improvement in many ways her status still remains in limbo. We continue to remain strong, to move forward and to work with Remy’s doctors and influence their decisions whenever we feel we must. We are enamored by their talents, care and dedication. We will continue to fight this fight with our baby girl and keep our strength and hope alive and well. We are deflated very often but still going and not pessimistic. We are human, and if the tone of this post sounds like we have been beat down, well we have. However, each day is a new day, and we remember no matter how hard this becomes it much more about our baby girl than it is about us. It is okay that sometimes we will get beat down, it is just important that we get back up and stand strong for our girl!