“More harm than good”

After last night’s scare, Daddy and I were so concerned about Hannah’s breathing and second-guessing our decision to put her on a vent to help her breathe.  Apparently that decision is moot at this point.

Our hospice coordinator (who is our lead nurse) came to visit today.   We talked about how things were going in detail these past couple of weeks as she was giving Hannah a thorough physical exam.  We talked a lot about her breathing, especially the shallowness and increased apnea.

Then she asked a lot of questions about Hannah’s feeds.   We told her how she was only at about an ounce of formula an hour for about 18 hours a day (about 700 calories a day), and she wasn’t really doing well with that anymore.  We told her how her stomach always seems to get distended, and we end up having to give her 1 to 2 enemas every other day to flush her out.

I could tell she wanted to say something but was very hesitant, so I finally said “Just say it.”  She said,  ”there comes a point when feeds become more harm than good.  We are at that point.”

She went on to say that her bowels aren’t moving along anymore, which is why we are having to do enemas all the time (most of the time it takes two).  She also discussed how the food is just sitting there in her stomach, which is why it gets so distended so quickly, push up against her lungs and…and affecting her breathing.

My heart sank.  I didn’t expect this to be a problem.  In hindsight, I can see she is completely right because it all fits.

She is at an ounce over an hour right now, do you realize how little that is?!   She only gets an ounce an hour, and she can’t tolerate that?  Such a little, little amount, and it causes so many problems right now.

I told her that I couldn’t stop her feeds.  Making sure Hannah is fed is one of my primal responsibilities as a mom.  You don’t NOT feed your child.  I told her maybe I could compromise at lowering them even more, maybe a half-ounce over an hour.   After she and our nurse explained more to me, I knew in my heart that no matter what they said I wasn’t going to do it.

If we did this, we would lose her in a matter of days.  But I needed to talk to Daddy when he got home before that decision was made.

After the hospice nurse left, I went in my room (leaving Hannah with our favorite nurse) and just laid there, dumbfounded and in tears.   Angry that I have to make this decision because I don’t want to make any more decisions … I just want whatever is to happen to happen.  I don’t want to make Hannah leave us earlier than she is ready to, but I also can see, so painfully obvious, that her body just can’t tolerate it anymore.

But now Hannah is suffering because of it.   Are we really causing more pain and suffering because we are forcing her body to eat when it is already starting to shut down?

About an hour after this conversation, I went to pick the kids up from school and went to run some errands.  I had to get out of the house and clear my head really.

I got a text from our nurse saying that she tried starting Hannah’s feeds again, and after 5 minutes, Hannah started writhing and tearing.  She stopped the feeds.   Tried again later in the evening, and the same thing happened.

I never put two and two together, but this past week or so, most of the tears and uncomfortableness is when she was on her feeds.   Now that it was brought to our attention as one of our primary problems, we are now starting to see what the hospice nurse so painfully had to tell us.

She was on feeds longer yesterday without as much break as we usually gave her in between, and she had the major scare last night with her breathing and tremors, her stomach being so distended and tight (after having multiple blowouts from her enemas just a few hours earlier)…coincidence?  the reason?

Hannah is sleeping comfortably right now… not on feeds.  I am so desperate to hook her up and start her feeds, even at half ounce over an hour.   I just can’t NOT feed her.

But if I do that, if I start her feeds at even that low of a rate…am I really causing more harm than good?

Comments

  1. Michele says:

    Sending you love!

  2. You are making heartbreaking decisions. Hospice is there, in part, to help you with those terrible decisions. You have reached the hardest part of the journey. I an holding you all up to the throne in prayer. Much love.

  3. I can empathize with you. When Gage was in the PICU and we knew that eventually we would have to let him go, I was still very insistent that he was fed. It is one of the most natural things in the world for a mother to feed her child. Even when he was first sick and in the hospital, they wanted to rest his belly and it was agonizing. I am so very sorry that you even have to consider these options. Please know that whatever decision you make is the right one for Hannah.

  4. I’m praying for peace for your mama’s heart honey. Praying for peace with Miss Hannah.

  5. Carrie, my heart just aches for you. I’m so sorry you’re having to consider these things. I wish I could take away the pain or at least carry some of the load for you, and I’m just praying for comfort and peace for Hannah and for you and your family.

  6. I remember going through this with my mom. It was the hardest decision to make, no doubt about it. And I can see how it would be 100 times harder with your child.

  7. Crystal Gaitan says:

    God bless you.

  8. Praying for you.

  9. Carolyn says:

    I agree–what a painful point in this journey. But you will continue to feed that precious child with your great love–a wondrous gift. Prayers for you and your whole family.

    Carolyn (in Las Vegas)

  10. I am so very sorry for all you, Hannah and your family are going through. Could they put her on TPN so she can still get the nutrition while resting her stomach?

  11. Dearest Carrie and Robert Hello from Paul. it is alway’s so painful to say anything as a parent who has lot their child to another parent facing the posibility at some time in the near future.

    Carrie Robert when it was Kevin’ time it happened all so quick He had been just laying on a Hospital bed for hours hooked up to so many tubes so still like he was in a coma. then a Doctor came in took one look and said It’s time. Go bring the mother in. as she was resting. we were in total shock. as we got back they had been prepairing him. Dont wary they said we will give him something ? you ned to go in the nextroom and we will bring him in to you and said sometimes it takes many hours but can be much earlier.but ater only 10 minutes they brought him to us I picked him up and saw the wonderful peace in his face He was gone. it had been so obvious e could not recover and as brave as he was he was suffering so mutch. at that point Carrie Robert you will know what to do. but please dont let a Doctor tell you to go in the next room stay with Carrie every precious second when it is her time. keep looking closely in to her eyes and she will tell you but for now Carrie Robert. just keep hugging her and tell her how much you both love her. With much Love and tender care.

  12. Denise H says:

    I am so sorry you all have to go through this. Praying so hard for your sweet family and for beautiful Hannah who stole my heart.

  13. My heart goes out to your family! When my grandfather was in final fight with lung cancer, he stopped eating and nearly stopped drinking. He was contented and in no pain due to this this. You will know what is right for her and always have. Hannah is a lucky girl to have such love!

  14. My God Carrie, what an absolute nightmare you are going through. All these desicions, a mom should never have to make. I totally sympathise with you, you must be one of the most tough person I will ever encounter! Love, Anna

  15. Janeen & John Zambo says:

    Carrie, You and your family are in our thoughts…

  16. Kelly says:

    My thoughts and prayers are with you still. As parents you have always made decisions based on what’s best for you kids. I know you will find the strength to keep making the decisions that are best for Hannah, even when it goes against what you want or need. Talk to the doctors, lean on the hospice folks (that’s what they’re there for). Love you all!

  17. Nana Waggs says:

    Dear Carrie, it’s without a doubt this is one of the saddest things a Mommy must have to do. You truly have Hannah’s best interest in your heart and your actions have always carried that through. I know you’ll again do the best you can at this time and you need to always remember you did what your heart lead you to do, loving Hannah more than your own life itself.

    Our prayers for each of you…
    Ginger

  18. As I read your post tears flowed down my face. I recently had to make the same decision for my mother who had colon cancer. I am a medical provider and I still feel so guilty for deciding to not begin IV feedings. She passed away five days later. I do know I spared her from being in pain but it is still a difficult thing to decide for someone you love so much.
    I also have children, one of which is chronically ill, and I don’t know what I would do if I were faced with making the same decision for one of them. My prayers are with you and your family and your little angel.

  19. Dee Graziano says:

    I work with Hannah’s grandmother at AAFES and I want to send all of my heartfelt sympathy for you and your family. She was a beautiful little girl and through your words i feel I know her a little. May god be with you in your time of need.