Feeling Deflated

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!

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7 thoughts on “Feeling Deflated

  1. My thoughts and prayers are with you all. Remy sounds like a tough little girl and she is letting you know she is not giving up. I can’t imagine being in your shoes. God has your back so just continue moving forward.

    God Bless

    • I so feel for you all. Our son will be 23 on Monday. He was born at 26 weeks. He was in the NICU from April 25 to the end of July. Those were long months of a roller coaster ride. Over the years we have had many many hospitalizations due to his complications of prematurity. Keep your faith in God, He will give you the strength to endure each day. We will lift you up in prayer.

  2. I am continuing to pray for the three of you and I hope that in this way I can lift a bit of your burden. You have my deepest respect for your strength and maturity. Remy is very blessed to have you as parents. Much love coming at you. Mary Cullen

  3. I am so sorry that you are all going through this – I wish I could wave a magic wand and make everything better. Just do your best to hang in there. We will all keep pulling for Remy – we have to believe she will get through this and you guys can get through this. I want nothing more then for you guys to be able to give her big hugs and kisses.

  4. Peter and Mary, you two are doing the best you can. You are wonderful parents. We don’t know God’s plan for Remy, but we pray to God to give each of you strength to heal, grow and overcome obstacles. Love and Prayers your way always.

  5. Love lift you up, and I know it does, keep the faith, YOUR ALL DOING GREAT!! Love, light and prayers to you as always, xoxo

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