Too Little Too Late…

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I am writing from the hospital. Jennifer had some severe tummy issues so they admitted her. At first they thought she would have to have the feeding tube to get the sheer volume of meds into her. She has been a total stud though, rocking getting it all in herself. She is due for another dose in 20 mins so we shall just see how that goes.

What lead us here makes me feel awful. Basically she is severely constipated. Today we were at the Palo Alto jr museum and she decided she had to go, but she couldn’t. It sounds kinda funny but it was awful. She was screaming in real and true pain. She wanted me to help. They even shut the door to the bathroom to give us some privacy…and probably to drown out her yells.

That time in the stall with her was the perfect snapshot of how I am feeling in this path. Helpless. It’s a awful feeling to not be able to help your child. And especially to know this is a pain I could have prevented..

Twenty minutes passed and she wasn’t able to get more down. We gave her some meds through her port to help her relax for them to put the tubing in. She was scared and while the nurse readied the supplies she looked up at me with her big brown eyes filling with tears asking if she would be ok. How was I supposed to answer that one…

I held her hands and the nurse went to work. It was so hard to watch as she tried to get it down. Jlk was scared and saying it hurt but she was doing her best to be brave through it all and listen to the directions. She did cry and called for me and her daddy., we were both right there. But they couldn’t get it all the way in, 2 nurses tried. So they pulled it out to try the other side. She earned huge courage beads tonight in my mind. I am in awe at her perseverance in truly frightening situations. I whispered to her tonight she is my hero and I meant it.

When we told her they had to try the other side she got so upset. She cried and cried. She didn’t want to, but she is such a tough little girl. I took her head in my hands and went cheek to cheek and whispered to her. I was telling her how “we” would be doing this and taking deep breathes and swallowing the tube down, but the awful truth is it’s just her….I can’t do it with or for her. I am just her witness.

She is sleeping now but I just cannot silence her crying and calling for me. The sound of your child hurting and scared is horrible and just eats away at you. Impossible to forget. And we are just in the beginning stages of this wicked game. I know I will look back on tonight and think it wasn’t all that bad…I can’t even imagine how this will all get worse, yet I know it will.

Again they couldn’t get it down and she screamed this time. And yelled for mommy to make it stop. It was absolutely heartbreaking to have my child calling out for me to save her but being powerless. I did finally call it and say it’s not working, pull it out.

But too little too late seems to be the theme of the day. I didn’t do a good enough job recognizing the signs of constipation. She worked so hard with Tony to get down huge amounts of the nasty medicine to avoid the tube only to have to try it later on. And then even that didn’t work.

This whole damn thing was preventable. I didn’t cause her tumor, I couldn’t have stopped it from happening, but this experience I could have. I hate to think how uncomfortable she has been without complaints or telling me. And that If I had just trusted my gut more she wouldn’t be suffering in so many ways tonight.

The disgusting truth is we are doing all of this to improve her quality of life not to save it. But it sure doesn’t feel that way. I feel like so much of what we are doing is just so hard on her little body and mind. And I question it. Am I being selfish? Should we just be playing and going to Disneyland and the beach?

Will I regret all of this but only once it’s yet again too little too late…

11 Responses to “Too Little Too Late…”

  1. Libby, their is so much of your journey and struggles now I can not even began to fathom. But having a sick little girl in the hospital and going through so much and wishing you could make it all better and do it for her; I DO understand. I have been in those shoes. Rebecca was a year younger than Jennifer when she had to undergo numerous hospital visits and surgery. And I can say now what she remembers most is that I was there every step of the way fighting with her. I hope this thought gives you some peace as Jennifer will know you are there. She knows you are her rock. Even though you are raw and mushy on the inside, you are there for her. And she is not going through this alone. You all are a true inspiration. Tell her she is touching and changing lives everywhere by being so brave and strong!! We are praying hard Libby!! May God truly bless each one of you!

  2. giving you tons of hugs…
    Tell Jennifer to “twinkle” her toes (move them around) while getting a shot or having a GI tube put in. (I’ve had one and I still remember how horrible it was) I was in the hospital for 5 weeks and the few things that I loved were relaxing music being played, to drown out all the beeping, nice smelling lotions for a nice massage and to keep my skin hydrated, the drugs seem to dry you out like leather and a variety of lip balms in many flavors so you can feel like you are eating when you can’t! And one last thing, lots of pictures of loved ones.
    L-please let me know what I can do to help. You can leave the baby with me if you need. We are only a few minutes away. I would also love to make you a dinner(s) and have you guys over. I am sure our kids would love to play together and we have a large yard. Your kids are always welcome to play here when a park gets tough to go to.
    All my love, Stefi

  3. Why are our crystal balls only clear when looking back and so foggy when looking forward??? Praying that God will give you and medical community wisdom in every decision.

  4. You’re amazing Libby. Your decisions for your daughter are for the very best reasons, for her and for your family. I pray for JLK constantly throughout my day. She is so brave! And you’re right, a real hero. <3

  5. I read your events of this day with tears in my eyes. Although I don’t know you and will never meet you I felt like I was standing in the room behind you for some odd reason placing my hand on your shoulder and telling you she is strong and so are you. God made you into this magnificent creature, a Mother. A mother who had learned that life isn’t about loving someone else more than yourself. That little girl is a piece of you and she has your heart, your drive, your strength. You are her Hero! Stay strong and fight with her as you continue to do so. I am praying for your beautiful daughter, you, your family and the doctors who are trying to heal her. May God watch over you all. Praying for you on God’s love.


  6. Libby…only you can decide what’s right. But if it were me, and my child….yeah, beach and Disneyland. If God has a miracle planned, He won’t need radiation or hospitals to make it happen.

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