Hard Day

Hello Ava friends! Ava is still in the hospital. Today was very difficult. Here is what is going on.

*She is partially obstructed- The xray shows that she has stool just sitting in the small bowel getting ready to go into the colon. Something is stuck.

*She has an NG tube that goes from her nose down to her stomach. She is hooked to a machine that sucks out all of her stomach bile (contents) Today she produced about 1400 ml's. (Yes that is a lot.) Yesterday was about 1800 ml's.

She is on IV fluids and they are going to increase it as she's not had very good pee output today.  We don't want her dehydrated. She did have very loose stool after walking finally today.

So long story short she is VERY sad and frustrated with the tube. It's very mentally draining. The tube is big and it hurts her nose and throat BADLY. There is no pain relief for this as the body keeps fighting a plastic large object that shouldn't be there... yet it's essential. We need to decompress the intestines so that the obstruction whatever is blocked can flow again. They think it's a partial block because she is passing gas and has soft stools occasionally.

Bad news... it is a long process. And it is not assured it will clear the intestines. We are praying that God will help her pass this so that she won't need another surgery. Her incision from last 8 days ago is healing great. The doctor told her she could take off the steri strips if she wanted to... silly girl took off about 5 this morning and then said, "Mom I think I should wait." I told her that was a good idea.

Again showing the CDH parents that want more detail. Here is some of the fluid that was pulled today. It is very dark green. It fluctuates throughout the day from dark to lighter green and sometimes it even turns clear. 

This morning she sat in the chair and it must have gotten stuck in a place against her side wall of her stomach because she became nauseous after about 20 minutes. We couldn't understand why she felt this way until we moved her back to bed and as soon as her head was further down the green started pouring out. It makes me so sad. She went through this process when she was 3. I knew it was hard but never fully understood how excruciating ng tube suction can be. If you have followed Ava's blog since the start you would know that she had a tube like this for a little over three MONTHS. Yes months. She was a toddler and she acted "okay" about the tube in her nose. I don't know why this happened to her then and I certainly don't understand why it's happening now but I do trust and have faith that God will see her through. His ways are not understood in our human minds. I try to remember that I can give my best... my all but she is still in God's hands. (He has always had her. I just thought I had some sort of say in the process because I'm her mom.) I love her so much and it's been a very brutal day for both of us.

Brian left for about half the day to figure things out for work so that he can be here with us. I've always been honest in my blog posts about all topics... this post is difficult to share as Ava was so discouraged today that she told me she couldn't live like this. My heart just sobbed inside for her. She said she wanted to give up. I've never seen her this way. She's always been so strong and pushed through even through pain. She will be 14 next month... THIS IS HARD.

God sent Kirsten, the music therapy lady, to us today at the exact moment. I honestly didn't know how to process the information Ava was telling me. I knew she was in pain and is so very tired yet  I never thought she would get weary. She's always been my strong little girl. Kirsten lightened my load a bit today so that I could get a grip on the situation. She played and sang, "You've got a friend in me"...per my request. "Thanks Kirsten. Keep rocking the songs and cheering people up that live in the hospital It means the world to us!!"

Please pray for Ava. This is mentally exhausting. She hurt so badly yet has to get up and walk so that her insides will start working properly. If she doesn't move the process will go slower. How do you tell your daughter to keep fighting? Of course I told her that I loved her and that she was not alone. I do not know this kind of pain but I do know pain you can't stand. I understand having plastic inside you keeping things working. Looking back on those 4 months not too long ago that the doctors couldn't figure out why I had abdominal pain and then learning after almost 4 months that it was the tubes in my kidneys. I feel for her deeply.  I told her to keep hanging on that so many people loved her and that we know she will get better. 

God also used my amazing sisters to help lift her spirits as well this afternoon. They got her these beautiful flowers, balloons, the softest teddy bear and coloring kits. 

"Sisters, you will never know how much this simple gesture of ordering something could made my heart know how much we are cared for... you helped me step into my soul and feel your love from miles away. THANK YOU for your continued love and support from the bottom of my heart. I love you all so much!"

My heart was so grateful today for Doug (Mr sister's fiance) He was born with a severe birth defect as well and has been through MANY bowel obstructions... many NG tubes. He had just the right words to say to Ava to make her understand the importance of getting up and walking. It's the most difficult thing to do yet it is KEY to getting opened up. "Doug she walked two times today because of your words of encouragement. THANK YOU so much!"

I also want to thank my friend Jade. She sang Ava and I a song and gave us encouragement today through just a simple video she recorded after I asked her for prayer. She always makes me feel like I'm not alone and that Jesus is right here beside us fighting hard. His love surrounds us!. "Jade your songs touch me every time and make me feel like God is directly using you to talk to my heart. I love you my friend, Thanks for this gift you give me!"

We have such amazing family and friends. We appreciate ALL your love, support, prayers and even your good thoughts sent our way. We know that with God ALL things are possible. We will keep believing and enjoying each day that God gives us. I'd go nuts without your support. THANK YOU!

-Terri, Brian and Ava