So I decided today that I was going to blog no matter what, I have been trying to organize my thoughts for the last who knows how long and have many partial blogs. So this blog I decided would just be a collection of random thoughts and no real direction. … Who knew today would be the day that Jude would get very sick, thus my desire in what to blog changes ones again.
My faith has always been solid and comes easy to me, not just in these trails with Jude but all my life, my belief in God and the power he has. I am fully confident that God has been at work in this whole processes.
What is hard for me is pain I hate feeling pain and I hate to see others in pain. I will do anything to avoid pain and ease those who are hurting. The first day I saw Jude cry I thought my heart would break the hardest part about the whole thing is that he cries with no sound. Not only can I not stop his pain but it is like I am watching my boy from a glass wall, I have never felt so far from him. I have never felt so helpless. …. So as you have probably figured out, I did not finish my blog that Monday. We stayed with Jude till about 2am and then I went back and crashed but instead of starting a new blog I will just finish this one…. Jude’s pain has seemed to be an ongoing battle for me and everyone else this week. They have begun to wean him down on his morphine drip. Their reasoning is that they do not want him to build up a tolerance for it because he will certainly need a lot after his big surgery, as well the longer he stays on the morphine the harder it will be to wean him off. I understand both of these reasons and I even agree with them however I also believe that there is no reason he should be in pain. They give him morphine shots “as needed” to help with pain, this is where the cross road has become tough because my opinion tends to be different from the nurse, specially a new nurse. By looking at his status the nurse can tell he is in pain or not and by looking at him I as his mother can tell you if he is pain or not. What I call pain they call agitated or just a little fussy. I have talked with multiple nurses, doctors and others to discuss what I think is best. The response is normally “well you are the parent you are with him all the time and you know best, tell me what you see” I tell them what I see and then it is followed by a “well we will watch but all of his status are showing that he is not in pain” and then they end with the “you are his parent you do know him best” … this drives me nuts, if I know best why do you not do as I say? Or if you really feel you know best then don’t give me that line. … I am not saying this all to vent but to share that this is my battle it is not the issue of faith but allowing my son to be in pain when he has done nothing. This is what will quickly bring me to tears. I want every one of his nurses to love him and care for him as much as I do, even though they are great nurses this will not always be the case. I don’t understand why he has to feel this pain; I don’t understand why this has to be protocol. I can’t stop his pain or change it, I can’t just take him and leave I wake up every morning wondering how much pain he was in overnight and how much pain he will feel that day. This is truly a feeling of complete helplines. I feel like every day I understand more and more how God feels through watching our pain. I know this is something that will never get easier for me, how could I ever become numb to the pain my son feels? I just have to trust that even though I cannot hold him through his pain or take it away that he knows how much I love him and that it brings him some comfort.
tracy
Thanks for posting, Tracy! He has a really tough mama so I know he's hanging in there okay.
ReplyDeleteLove you so much, Trace. That is so hard, I'm sure a lot of moms can relate in some way, but I'm really proud of you for struggling with this instead of just giving in!
ReplyDeleteI will pray for Jude's pain level specifically.
ReplyDeleteChris and Tracey,
ReplyDeleteThis is Jen, Dan Quinn’s wife. I have sat down to write to you many times but always felt that what I had to say would fall short of being uplifting so I walk away. But this morning I was reminded just how important all the support we received while Ethan was in the hospital was to my survival and growth. So please know that we are praying around the clock. You two are young in your marriage as Dan and I are; please know we are praying for you two just as much as Jude. It sounds like this is a trial that is pulling you not only closer to God but to one another and our past year has done the same for us. I knew the day Dan proposed that he would make a wonderful partner. I didn’t realize that so early in our marriage I would be given a perfect example of the need for that partnership. There is no one on earth who will ever know what you are going through like your partner does. Take refuge in one another and, as strange as this sounds, be grateful for the strength God is incorporating into the foundation of your marriage through this trial.
No matter how much faith you have and strength you develop you will have many moments that overwhelm you. My advice is to let them, but only temporarily. You are keeping the beasts at bay I am sure, telling yourself not to let your mind wander to the scary corners. And that is good. You will find nothing there worth your time. You do need to, however, cry and melt into those feelings. I found that embracing the hurt sometimes was the best way to not let it take control. Dan and I would take turns losing it and always be honest with each other about how you are feeling.
I have no doubts that you are surrounded by the best medical team and we are so grateful for that. But as I am sure you have learned they don’t know everything. If we had listened to the doctors when we first left the NICU who knows where we would be now. Trust your gut, especially you Tracey. God connected you to that child and you will always and forever be linked to him in a way no one else ever will. The day Ethan was born I woke up and just knew something wasn’t right. Just a few hours later he was born by emergency C-section. Leaving the hospital they assured us he would not have any more problems with his heart. He went into SVT a dozen plus times after that. Luckily that means when they predict only bad they can be wrong too. It sound like you have kept the faith that God is in complete control and He knows what he is doing. We will pray for your continued faith and trust.
Thank you for sharing your journey with all of us. It has been such a source of faith and a reminder that each moment is such a gift. God taught me so much through our journey this past year and I am sure He isn’t done with me yet. I pray as He continues to teach and mold you, your hearts will draw nearer still to Him. I believe prayer is the most powerful tool we are given. It unites us and can change any outcome. We will pray like our pants are on fire. Jen
Chris,
ReplyDeleteI've been following--know my prayers are with you and your family. About the pain meds. Having been through three major surgeries I can give you my own experience. (Granted, the experience of an adult is very different from that of a new born, but it may help you as you sit with Jude.) Coming off of the pain meds was worse than pain from surgeries. My last one, I weaned myself off the meds starting the third day and relied on ice. I much prefer the discomfort to the continuing fog of codine/morphine. My faith is different than yours, but I know that the divine will be with Jude. Allowing him clarity will help him relate more closely to you, Tracy and the divine.
I hope today brings comfort to you all.