Three NIGHTS....4 DAYS....these are the number of days I spent in the hospital with Bella last week to have her feeding tube put in place. Not only did she have to have the procedure, but she needed to be rehydrated, they had to observe how her body would handle the feeding tube and lastly, a spinal tap. At 8:45 pm this evening....she PULLED IT OUT! She was sitting right on my lap, she started having a sneezing attack, I looked down at her and she was looking straight at me with her eye's wide open, a serious look on her face and the tube hanging from her tiny fingers. She knew what she had done. Every time she gets her hands near that tube I start telling her no. The boys were running around saying what do we do. My answer....'she's going to bed!' Of the 6 weeks since Bella was diagnosed, I have spent 3 of those weeks in the hospital with her. Two of those visits were because Bella would not eat or drink, this feeding tube was the solution. In the morning, I will have to call Bella's Oncologist.
In addition, we had a challenging weekend with Bella. She is pretty much on my hip as she only wants to be held by myself of Dave. If I leave the room, she breaks in to tears. She is terrified of going to bed and taking a tub. She wakes up in the middle of the night screaming and we cant calm her down. If Bella was a defiant child, we might see this differently, but she's not. It hurts my heart to hear her crying this way, I know that there is something wrong, but she is only 15 months and cant tell me.
I felt slightly defeated tonight and frustrated. My tank felt empty...I was running on fumes. After getting all 4 kids to bed, I grabbed my bible and headed for the tub. I was desperate for an answer from God. "I cant do this anymore...I am tired Lord, I am not strong enough for this." And He said "Your strength will come from settling down in complete dependence on me". Ish 30:15, The Message Bible. Just what I needed to hear, its not my job to figure this out...its not my worry, its His. I am to lean on, trust on and rely on Him. How very easy it is to want to take control of the situation, after all, if were made in His image, we can figure this out. And then, things begin to really spiral out of control and were yelling "Lord, I cant take this anymore" and He say's "I never asked you too, you did this all by your self." And then he calms us down and say's "My mercies are new every day". I personally take comfort in this knowing that God's time is not our earthly time, so "every day" can mean "right now".
I have a quote I used to keep on my mirror, its now etched in my brain (but after today, I think I need to put it back on my mirror). "Good Morning! This is God...I will be handling your problems today and I do not need your help". No He does not, it seems I get in the way every time I try to help Him out. So tonight, I go to bed forgiven for momentarily forgetting where my strength comes from and I "count it all joy" knowing that God is up to something wonderful.
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16 comments:
OHH no poor bella girl!!! She is such a angel baby i hate to hear she is in soo much discomfort..I hate when children are in pain!!
Sending some prayers your way!
Love the pics of the boys and bella around the tree!!!
hugs,Leslie
It is so hard to see their discomfort and know you can't help. You just want to put yourself in that situation for them.
On the feeding tube, I remember when my son, Brian, was in foster care. He had a feeding tube in his belly (from birth until he was 9 years old). We got a call about 1am one night that he had pulled his feeding tube out. He was in his cradle swinging it around and laughing. They drove all the way from Livingston, IL to St. Louis Children's Hospital for them to put in another one. (He could not eat by mouth). As scary as it was, it was quite funny to see him in good spirits because he felt he was free from this thing, but didn't realize how much he needed it. Modern medicine is wonderful.
Bella is beautiful. So glad she got to enjoy some snow!
Yet another wonderful post from a wonderful mom. That little stinker and that yucky feeding tube! I remember when Matthew was tiny and had a feeding tube AND ventilator that he kept pulling out--talk about not cool! I'm still praying for you, and especially for peace during this crazy time. Stay strong.
We have been thinking about and praying for your dear Bella. We are currently adopting from Peru and we have added your link to our site. Please drop in sometime.
Blessings!
Get an ergopack at ergobabycarrier.com I tell you they are so great and comfortable then you can strap her to your front or back without it killing you and you will have 2 hands free and she will be happy. I used this (and still do with my 2 year old) when she was teething or sick it was amazing, plus I lived in Guatemala so it was a must have walking everywhere. At least this might help the both of you because she can't understand what is going on.
www.missmayita.blogspot.com
I will be sure to stop by the Hermano Pedro church again today and light a candle for healing of Bella too! I hope she´s better soon! HUGS!!
Susie, your posts are always such an inspiration to me. You just don't know how far-reaching your impact is...I read the latter portion of this post to a dear friend today who needed to be lifted up. It is so clear that God is using you and even this challenging time for His glory and great things for your family. I will continue to keep your beautiful Bella and your family in my prayers.
Kirstie
poor sweet Bella... hearing them cry like that is heart breaking.. praying for strength for all of you & for better days ahead
alex
Dearest Susie I pray for Bella's peace as she heals and your peace as you care for her. Try to rest...you sound so exhausted but I don't know how you can work that in. But God knows and will carry you through it all.
hugs and prayers,
Angie
I hate I haven't checked in! I've sang at an extended family member's funeral today, so been on the road a lot. Call me tomorrow on the old cell phone number if you have time. Love, Cheri
I am so sorry to hear that Bella is in such discomfort. It is so frustrating to not be able to know what to do to make it better. We are sending many prayers that she will be feeling better soon. Hugs, Rhonda and family
Poor Bella!! I am so sorry she's had so much discomfort. I am continuously praying for her!!
Good words from a great mom.
We all can learn from your journey. Thinking of you guys and praying for you and Bella.
Chantelle
Praising the Lord for the beauty I see in you. Crying out to the Lord for Bella, for your family's strength and for rest.
Do you know that I think of you and pray for you throughout each day? Yep, it's true! You and your family are never far from my thoughts and prayers.
Love to you,
Stacy
too bad we want to help when it would be much easier to let HIM handle our troubles!
you have a beautiful family! I will keep your sweet lil Bella in my thoughts and prayers!
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