I say this all the time to her..."Don't smile!" and then she does this.
Hello all! Ava is doing so well. We changed her formula that goes to her G-tube. We are now doing Elecare. I got some wonderful advice from several Mothers and decided on this one. So far she has tolerated it great. She is still on 100% TPN for her nutrition but as we increase the g-tube feeds then they will lower the central line feeds. I put her on 8 ml's per hour, continuous feeds on her pump. When she woke she had the biggest smile. I said, "Good morning Love, we are home!" She threw up every morning at the hospital but this morning no throw up and no spit ups. YEAH!
This is a picture of her feeding set up at night time. Where is Ava?
Ava and I slept in until 8 am this morning. It's a good thing the girls get up all by themselves. They are such great daughters!
I have been thanking God all day for everyday things like....our hot shower, our stoves, our washers and dryers, and just having a home with a nice comfy bed! Things we all take for granted until you have to stop your life to spend it with your sick child in the hospital. Life sure does take it's twists and turns.
I made scrambled eggs for breakfast and right away she pointed to the stove. I knew what that meant....she wanted some too. This was one of her favorites before she re herniated. I made her a small plate. (Children quickly start their oral aversions, which means they are very leery of foods. If they see a lot on the plate they cringe. They also get nervous if you force them to eat more.) I sat it down and she started picking at it. She ate about 5 bites and I could see that she was just chewing and the food was sitting in her mouth, after about 5 minutes I asked her if she was done, most of the eggs were gone. She shook her head yes. I put my hand in front of her mouth and asked if she wanted to give me the "extras?" She spit them in my hand and then started gagging. Up came one ounce of Gatorade but no formula. I was glad about that. So that means things are going down but she has a fear of swallowing. She remembers too well that once things go down they come back up and that is no fun.
We had a fun day playing and just enjoying taking a bath and scooting around in our very own house. I decided that since she was doing well with the 8ml's I upped it to 9ml per hour. An hour later I upped it to 10ml's. (This was what the doctor wanted her to be at today, but I told him we go at Ava's pace.)
Lexis and Emeline came home from school, took their showers, (This is a rule in our house. We have to keep Ava safe by getting rid of school germs.) put on their masks (they are still coughing a lot.) and started playing throw the ball with Ava. See her huge smiles?
I decided to make spaghetti for supper. Guess what? She ate about 5 strings of pasta and didn't throw them up AND didn't gag or look sick even once! I am more than happy. Oh and even better news when she was sick and her tummy hurt she wouldn't have anything to do with her sassy. She started sucking on it yesterday!! This means a lot to me. She is feeling better!
See the sassy? That is a sign that her tummy doesn't feel sick.
Brian's sister Marsha came over tonight to help us with our taxes.(Thanks a million Marsha!) Since Brian had to be off work for a few weeks we didn't know how the bills were all going to get paid. I wasn't worried because I put that in God's hands. We are getting enough back to cover our bills. I knew God would come through. Sometimes just when you think life couldn't stink more God shines a light on your way and says in a very clear voice, "I am with you." What an awesome God we serve!
Ava has also been pooping a few times a day which is another wonderful reminder that her body is healing and on it's way to recovering well! She is tucked into bed and is sleeping soundly. She woke twice last night and wined and rolled over and went right back to sleep. I slept really well. We even took a nap together today. I feel great. It's absolutely phenomenal to be home!
Keep the recovery and healing prayers coming. We still need them very much. Again thanks for all your warm and loving messages of encouragement. I feel blessed by all of you and humbled that you care for our daughter.
~Terri and Brian (and girls)