Thursday, September 8, 2011

Do Not Go Gentle Into That Good Night

I don't really know how to start this one tonight. Naya had a terrible night last night. Enough so that we got our first late night phone call from the hospital. The pneumothorax came back and caused her to de-sat. Her blood pressure plummeted as well. She was looking better when they called us though. When we came in this morning, her blood pressure was incredibly low and her sats were awful. Dan and I were sure we were going to lose her this morning and started preparing ourselves as much as someone humanly can. We both agreed earlier in the week that if she codes, we aren't going to let them do chest compressions on her. We also aren't going to let them put anymore chest tubes in her. We don't want to cause her any more pain and suffering. If she codes, she is letting us know that she is done fighting and we have to let her go.

The doctor decided to reposition one of her chest tubes to see if that would help the pneumothorax. After two tries, she accomplished it and Naya's sats and blood pressure started to rise. They are still looking good right now and I hope it's not a temporary thing.

I have to brutally honest now. Naya's situation is not looking good. In a normal course of septic shock, a patient will almost always be in the recovery stage during the third week of illness. Naya has been in critical condition for 6 weeks now. Her lungs are essentially ruined and her body is just not responding to treatment. Dan and I may be optimistic and want to believe that she will recover but we know the odds of that are very slim. Her quality of life after this is also definitely in question. There may be a point reached when we are not helping her anymore and treating her is just delaying the inevitable because we don't want to let her go. We are not quite there yet but the doctors feel that things may have run their course. We are still holding on but it's getting harder in light of the situation. We love our daughter so much.

Every night, I say the same thing to Naya. I tell her "Do not go gentle into that good night. Rage, rage against the dying of the light." The truth is, she came into this world choosing her own path by deciding to make her entrance the day before I was supposed to be induced. I will let her to continue to make her own choices.


  1. St. Gerard, who, like the Savior, loved children so tenderly and by your prayers freed many from disease and even death, listen to us who are pleading for our sick child. We thank God for the great gift of our daughter and ask Him to restore our child to health if such be His holy will. This favor, we beg of you through your love for all children and mothers.

  2. Jamie, we are praying soooo hard for Naya! We love you all so much and we wish we could be there to comfort you all at your time of need. Words cannot express what we are feeling for you. God bless you all and our prayers are with you! Love you!

  3. I hope I never have to be in a position of a decision like this. But I promise you, none of us will ever judge you for any decision you and your husband make. Not only is Naya Jane in our prayers but so is your whole family. I am glad you found a church down there. They can give comfort too. Take care. And thank you for sharing your hurts along with your joys.

  4. Every day, at all hours, I say 'please please please' give this baby girl the strength to live another day; give Dan and Jamie the strength to hang on. Followed by 'thank you thank you thank you' for answering my prayers from the day before. I still have hope and faith that Naya will improve. Love to all of you.

  5. There is now and forever love in our hearts for Naya. She has touched all of us in so many ways. She has allowed us to search into our minds, hearts and souls for strength. But within that search for strength we have also found a lot of sadness. We try to comfort Daniel and Jamie the best we can because our hearts hurt to see them hurt as they ride that roller coaster with Naya.

    I have watched her parents, grandparents and family talk, sing and read stories to her with the goal of comforting her while she lies on her hospital warmer.

    All the special nurses, support staff and physicians are providing their expert skills to help Naya. And yet, there are a lot of questions as to why Naya is not improving but there are no answers. Medicine isn’t and exact science for which there is a cure for all ailments. Our eyes, ears and minds focus on the different colored numbers displayed on monitors. We look at the number of medications and life support machines that are helping and allowing her to be alive with us. How much longer can Naya endure all of this? Is she suffering and in pain? I hope the medications are preventing those discomforts.

    Is Naya thinking, “When can I go home? I am getting tired of all this.”

    We are all praying, hoping and will continue to pray and hope for an answer that will allow Naya to recover so she can enjoy being with her family away from the hospital. But when will that answer come.

    To Daniel, Jamie, Ty, and Naya, I send my all my love, hope and prayers.
    Love, Rod

  6. Jamie, It is hard to imagine what you are going through at this time, but be assured that your friends are suffering with you.
    We will all support you in whatever decisions you make. Sometimes the hardest thing to do is to let go.
    The Bible says "Thy will be done, oh Lord" my Prayers are for all of your family.

  7. I marvel at what beauty surrounds such pain. Naya has joined so many together in spirit and in prayer that her life already holds such meaning. Your fierce parenting is humbling and inspiring. Wishing you God's grace in the days ahead.

  8. Jamie,
    I don't know you but my heart aches for you and your beautiful little girl. I hope you know you are doing everything you can. She will definitely lead the way.
    Sending lots of love to you and your sweet warrior,
    Sarah DiGeorge