Surgery is done.

My heart is aching so bad right now. They wheeled her in and her little head is covered with bandages because of the her skin graphing. They had to take the skin from her scalp to place it on her arm. The burn surgeon said all went good on her care. Her tummy is so large. I am very afraid.

The surgeon has yet to come and talk with us and it has been over two hours since he finished with her. I just want answers.

As I said she looks just horrible. I am dying inside. her heart rate is running close to 200. She is in pain. I know it. It tears me up. Why does a parent have to go through this. I find myself once again asking God, "Why?" I am so tired of her hurting. It is tearing us raw.

We just found out they shaved her whole head of hair off for the skin graphing. I am beside myself.

"God give me the strength. I feel like I am losing my mind. I know you promise not to give us more than you can handle and this is too much for me. Lord help me see how to get through this."

~Terri

Ava's in Surgery right now.

Ava all tucked in ready for today's surgery.
Mommy reassures Ava that everything is going to be alright.
Ava's nurse Amanda is helping the anestegeologist get Ava ready for surgery this morning.
Daddy's always watching Ava!
Mommy made a special name sign for Ava's bed.
The chore of getting Miss Ava all packed up takes about a good hour.
The stress just taking her down to the Operating Room.
"Stay strong Ava Mommy and Daddy will see you in a little while. We love you sweetheart!"

So they told us yesterday that Ava's surgery was scheduled for Tuesday afternoon. I asked them if they could move it up because she is really getting uncomfortable on the ventilator. they have weaned some of her pain and sedation and she was up almost all day yesterday and last night. Poor baby. So this morning they came in and told us that they were taking her first thing this morning. Wow God answers prayers! I just hate having her wait. She is so ready.

So here we sit waiting again. They will be placing a more permanent patch on with a vacuum suction along with a more central IV up by her collar bone. The burn surgeon is going to do Ava; skin graph while she is down in the OR. Take care of two things at once. I am a nervous wreck. When will this get any easier? Pray we don't lose our minds in the whole process.
I did get to go home for a couple of hours last night and see Lexis and Emeline. They were very surprised. Oh how it was wonderful to hug and kiss them. Emeline has a really bad cough so grandma is going to take her to the doctor hopefully today.

Pray for Ava's surgeon to have the wisdom he needs to help Ava and not have to go back in there for a few more months. She needs to get better. They tell us once she is better she will possibly be able to come home until her next surgery. However it will be some time before she is any where near better. She is still a very, very, very, sick little girl.

Thanks for you prayers.

~The Helmicks

God is hearing us!

See my baby is awake.
Hang tight Ava we will get over this soon.
Ava is looking so much better today. I am just a litttle shocked. Her face is back down to normal size. Her hands are still not quite there but much better. Her belly went from 54.5cm yesterday to 52.5cm this morning. I was getting very concerned yesterday that her tummy was still really large ina a spot. Her drain tubes for her belly were working over time yesterday and last night. I did get scared when at about 10pm we started seeing blood out her stomach opening drains. It was not severe so they thought it was alright. She is off Lasix and peeing great. She is really starting to really look like Ava. Her eyes are still very sickly. I think that might be because of the sedation and pain medicines.

As I mentioned before they are not sure when they are going to do the surgery to put a better patch in place to hold her tummy contents inside. The patch has to be strong so she can get up and start moving around. The OR here is just being used for emergencies because of staffing conflicts due to an anesteologist conference. Great reason huh? So I have my meeting today with the staff here to see if we can come up with a plan. I'm worried if we don't do this surgery soon she might get tired of the ventilator. She is coping pretty well for a two year old. Bless her little heart.

We are going to have Physical therapy and Ocupational therapy come in and do work with her. They also have musical therapy as well. This hospital has a program called Child Life that helps with all kinds of things. I think I have mentioned it before. They do crafts for the siblings and they also let parents borow laptops. They do all kinds of wonderful things. Robin is the lady I always to to about this program and she is so awesome.

Thanks for all the prayers. I love to see her being alive. She is just such an amazing little girl. Her will to survive is unbelieveable!

~The Helmicks

Decorating for Halloween!

This is Ava's newly decorated door in the PICU.
This is what Ava sees when she looks up.
Miss Ava looking expecially cute.
Sleepy Ava!
Barney giving Ava huggies. He loves her. She loves him,
Resty Resty Ava.
Ava's temperary skin.
Precious sleeping Angel!

Ava had a very good day today. SHE POOPED THIS MORNING! That is huge. I think she is turning the corner. Hopefully the docs will get her surgery done Monday or Tuesday because Miss Ava is way over breathing the ventilator. Her blood gases have been great. They just weaned her Dex. today and she is a pee champion so they discontinued the Lasix.

She was awake a few hours today and wanted to watch Barney. he would drift in and out because she is till on a lot of pain medicines. The good news is that she finally knows us as Mommy and Daddy. She pushes things away that she doesn't want. It is so nice to see her back! Her eyes are sucken in a little and her arms and legs are back down to the size they should be. Her face is still a little swollen and her bely is also very extended. BUT over all she looks great. I just wish they would hurry up with surgery and get her off the vent. She hasn't been fighting it, although we did have to tie her arms down because she was trying to pull out the tubes. YEP she is feeling better!

~Terri

Ava's Strength.

Make photo slide shows at www.OneTrueMedia.com

Well Ava had a very restful day today so I decided to take the opportunity to put her journey into a movie. If you know someone who has a child with CDH PLEASE pass this video on.

~Terri