We placed the NG tube today. It took only minutes for the nurse to feed a tiny noodle-like tube up her nose and down to her tummy. It was tough to watch. Even worse, I am waiting right now for the nurse to come back in and watch me do it myself! They need to make sure that I can replace the tube at home if it were to come out. Yikes...don't mean to be a wimp, but nursing is not my thing.So, I have had a mixed bag of emotions all day. Sadness, disappointment, relief...
This is one thing I really did not want to do. I have been so grateful that "at least she can eat on her own!" Now, I feel in some way like we have let go of that too. The good news is, we are still feeding Reese solids by mouth. We only use the tube for fluid so that she can finally reach her goal and stay fully hydrated.
I have never seen her smile as much as she has today. I hope it is because she feels so wonderful now that she is reaching her fluid goal!
I read this paragraph tonight in the latest Brennan Manning book and felt like this is where I am:
"When the night is bad and my nerves are shattered and the waves break over the sides, Infinity speaks. God Almighty shares through His Son the depth of His feelings for me, His love flashes into my soul, and I am overtaken by mystery. These are moments of kairos--the decisive inbreak of God's fury into my personal life's story."
I am moved by the way God intervened physically, spiritually and emotionally. He brought the dehydration to our attention through a routine blood test--we would not have known otherwise, as Reese was not presenting typical symptoms of dehydration. He changed my heart and Mario's heart as we moved toward a "yes" regarding the tube. He has given us both a perfect peace as we moved forward with a dreaded decision. I am overtaken by mystery as I contemplate God's love for us and His intimacy with those who love Him. I am amazed at the depth of His love and care.
I don't know if I am ready to face the stares, questions and comments from the world out there. I can't stand it when people stare at Reese. I know I will get used to it at some point and stop caring, but for now, it makes me want to scream. I guess it is my next challenge...
here is my story: one of my girlfriends has a little boy that was born with a whole host of problems, mainly dealing with his lungs and his heart. he is about to turn 3. he does not talk. he can not sit or stand by himself. he has no muscle controll and he is on an oxygen tank. this tank is his only source of oxygen. she told me one time, that he was "healthy" enough to be in public. he was 2. he had not been well enough to be at family functions. when they had doctors apts, she would call the doc. office when she got into the parkinglot. the nurses would let hi in a door that was not connected to the waiting room. he was too sick to be around anyone.they spend the first 6 or 7 months after he was born in the childrens hospital. 3 times the priest was called to his room for the "reading of the last rights". and many times they were told that he would not make it through the night. but he did, and he is a fighter, just like reese. when they got the ok to be out and about, she started getting looks by people, mostly adults, but a few children. then the questions started. after a while, she had 2 sets of answers. one set for children, and the other for adults. when kids would ask her questions, she would explain that the oxygen tube gave her beautiful baby boy the oxygen he needed to stay alive. and most of the time, that answer was enough for the kids to understand. her answer for adults was a little be more medical. after a while, she decided that she was spending so much time and concentration on her answers that she would only take on what she could at that time. she told me that some kids would come straight up to the stroller and touch him, or pull on the oxygen tube! and that is when she decided, only family and friends get the answers, other people, especially the rude ones, just got a smile and she would walk away.
ReplyDeletewhat i am trying to get at is this, you get to decided how much "strangers" get to know. and they don't need to know everything. have a standard answer that you are comfortable with. explain with all of your love for reese that she is completely perfect in God's eyes and yours. she is a key player in your family. kill them with kindness.
kerry, i have never walked in your shoes, and i have never had to deal with anything close to what you and your family are dealing with. but if i had to choose anyone to be an encouragement,or a source of comfort,or a teacher, it would be you. hands down. you are an amazing mother/daughter/friend/example to your girls. all of them. even me...
i hope this is helpful.
jill b
Such powerful words so beautifully written. I love your heart.
ReplyDeletePraying for your sweet gal and for your sweet mama's heart. Big Hugs for you!
I love your heart and love for the Lord! Just remember, people stare only because Reese is so beautiful!
ReplyDeleteKerry - I found that I had made a note of your blog address when we first met and am excited now to know where it is as and to have read it. You and yours are CONSTANTLY on my heart as I pray for you and Miss Reese. Would love to chat when things calm down. Yours, In Him - Andrea Austin
ReplyDeleteI can't imagine as a parent you could ever stop caring if someone stares or points at your child. But I can't help but think that for every so many stares there is one that comes from a child who, when he asks his mom about Reese, is told that the reason "that little girl" has a tube in her nose or looks like she does is because that is how God made her. And from that begins to learn that God makes children who look all sorts of ways. So I pray that from those stares a few people will ask questions and start to learn tolerance and understanding for those whom God has made just a little more special, and through that Reese will have touched even more lives.
ReplyDeleteKerry, I am just now reading the blog from the end on June when the tube was placed. My heart aches for you and Mario as you deal with this daily emotional roller coaster. (honestly, tears are falling everywhere) Your love for Reese is awe-inspiring, and your committed love for the Lord is truly inspirational. It shines through in everything you say and do.
ReplyDeletePlease remember that when people stare, they are wondering how you handle a situation that they might find devastating. This is your time to shine! So many people used to stare at me and my mom, esp. when I would take her to the bathroom. I would have to walk her in there, show her where to sit, find the toilet paper for her, answer sometimes very awkward questions in public...all this from a 60-65 year old woman who basically looked normal, but had alzheimers and vision impairment. I dreaded that part of caring for my mom, but it was these times that God gave me the most opportunity to tell of God's blessings in our lives, despite hardships....and people listened! (my mom is still alive, but unresponsive in a nursing home for 2 years now.) I know our stories are dissimilar, but I wanted to tell you that I do draw inspiration from you and remind you that that's what people are looking for...hope.
Also wanted to remind you that you have more "nurse" in you than you give yourself credit for. Here is a story that has stuck with me since college. We went with Kendall to New Orleans for her to try out for Jeopardy. I had just gotten a mole removed from my back and it was really feeling irritated. At the hotel, I was so surprised when you wanted to look at it to make sure that it was alright. Then you put neosporin on it because it looked a little red. I really felt like I had a mom or a nurse there, but it was my sweet friend, Kerry!
I love you Kerry! God bless