Friday, January 23, 2009

Welcome to my "crazy" world!

So Ava is constantly bewildering me. I started the Flagyl late Wednesday night. Our poor pharmacist had to mix it and it took quite the time, so he graciously, personally dropped it off at the house. I am amazed at how sonmany go out of their way for Ava.

Early Thursday morning Ava woke and was restless. I gave her a Tylenol suppository to help her. Then she got a slight fever. I'm thinking, "Oh no not now." Her heart rate got scary. It didn't settle. It ranged from 150-185. BUT for some reason I was calm. I suctioned her on and off from 2 am- 6 am and got 450 ml's, not to mention it was very dark green and smelly. The odd part was she never really woke up totally. She would just wine. So after her heart rate dropped back into the 140's, which is okay for her, I exhaustively, decided to go back to sleep. So the good news was when she woke she was crazy well. It was like I had my "old" Ava back. She wasn't nauseous at all. I called the doc to tell him what her output was and they were glad it had gone down but still knew it was high. We played and played all day long. I gave her a bath and noticed that she had a blister on her wound. I then covered it with her special band aids ($14.00 a piece)and measured her belly. It was "51" cm's. I just stared in disbelief. I then emailed a picture to her doctor. He thought that was normal since, it was new skin. I was not putting a bandage on it so it was rubbing against her shirt. So all day Thursday I didn't need to suction. It was like a dream. I didn't have to grab for buckets and I didn't have to worry about where the suction machine was. Lisa, our nurse, called and asked if she could come over early because she had read the blog and thought she needed to be looked at sooner. I gladly agreed. Her blood pressure was great and she had no fever! I was so excited when I smelled a dirty diaper at about 4 pm. "YOU KNOW I DO THE HAPPY POOP DANCE!" She LOVES this! (I'll have to video it some time, NOT!) Then at 5:45 pm she starting gagging and retching. My heart sunk, okay here we go again. She only threw up about an ounce. Then three hours later, same thing. I suctioned but got very little.

So now I'm up to last night. I was very fearful that since such a good day, that she was going to fall apart on me in the wee hours of the morning. Quite the opposite, in fact she slept really well. Not once did she gag or retch. I got up about 2 am and gave her an IV injection of her Zophran. (Just in case) I suctioned her at the same time and nothing came out of the tube. "Huh, very strange?" BUT hey sleep head me I went back to sleep. She woke a happy little girl as always. Very ready to tackle the day. I not so ready.....I said my usual prayer. "God thank you for giving me one more day. Help me to see all the good in this day. Bless my family. Thank you for all my beautiful girls and my husband. I ask that you lay a healing hand on all the babies and children that are struggling right at this very second. Give me the strength to face this day! In Your Name, Amen." So we head down stairs I got a call from Lisa and she was concerned that Ava should be admitted. I then told her of her wonderful day and night. She was worried. I reassured her that I was okay with how she was doing NOW. (I wasn't a few days earlier but no one else seemed too concerned.) Then Laura from Dr. Shilyanski's office called and wanted to know how Ava was doing. I told her the good news. I also explained that I thought Ava was coming to a "clear" point that her body was giving us signs that she needed surgery now. She told me she would check the schedule for next week. Here is my concern....I don't want to wait until Ava is really, critical ill and then rush her into surgery. That isn't fair to her at all. She is being patient but how long can she be this good? If it was you or me we would have demanded they do something a week after we became nauseous. We do have an appointment on Tuesday. I will be telling them this very thing, I'm telling you all. "The time is NOW!"

So I put Ava in the bath tub. This was the first time since surgery she was all by herself. See I would getin with her and then she sat on my lap. (I KNOW a lot of work but she loves baths.) She was so happy. I got her toys and she began playing and talking. As I was dressing her I noticed that her stomach looked exceptionally large. I ran to grab the tape measure. It was "56" cm's. My heart sank. I knew what was happening. The gunk was NOT going through but sitting there waiting to be suctioned. So really nothing much had changed. I called the doctor to let them know of my finding. She asked if I had suctioned. I told her no because Ava wasn't uncomfortable. Plus I wasn't suctioning because I was giving her the antibiotic through her NG and it had to stay down for at least an hour. How fun! So then at 3 pm I decided to suction. In a matter of 5 minutes I got 100 Ml's out of her tummy. (yellow) SO this is where we are right now. I worry, I try not to because I've found to worry only makes the mind wander, and what good does that do?

Please pray that Ava's body doesn't fight back hard and we wind up with an emergency. I really am baffled by what her little body tolerates. God is obviously laying His strong hands on her day and night! Thanks again for all your prayers. He hears them All!

Pictures of the last few days.

Nap time for one sleepy little girl!

Another Ava supporter hand-made her this adorable scarf and hat set. I don't know your name but God bless you for taking the time to make this for Ava. It is beautiful!

Miss "Do everything" at all times.

Miss TROUBLE! All over the place! And DO I worry? Yes she only has one small layer of skin over her open hole in her tummy! Yikes!

I just had to take this picture! Amber and Sienna she loves the horse you guys got her in the hospital. She hugs it tightly every night. Upside down, she doesn't care!

Yesterday it got up to 49 degrees here. It was so nice I opened the front door for her to see the melting snow. Notice what she is wearing around her neck? Yes that is a "real" stethoscope! She carries it with her a lot! Huh I wonder what this means?

Ava Fun Fact: She loves puzzles and books!

See what I was very large today?BUT her wound is all healed over. Isn't that amazing?

Last but not least, this is Ava lounging watching "Barney."

Thanks again for stopping by to check on Miss Ava. We love that so many care. We feel your love! To see her story on video, you can view it at the right of the page. On the blog it is towards the top and in the carepages it is in the "About Me" section. Love and Blessings to you all!

~The Helmick's


Weylin and Tori said...

I am so sorry that you have to go through all of this, feeling like you are always waiting or watching for something to happen. Like I said before, your strength is amazing to me! Miss Ava is so blessed to have you for a mother. What a sweet girl she is!

Tori Douglas

Lacey said...

She is so strong. It would be great if they could get her in quick for surgery. I don't know why they always wait until they are really sick. Praying for an earlier surgery date. Hugs from Lacey and Jax

Liz and Shane Nelson said...

her poor tummy, Ava is such a strong little girl. She has been through so much. We have her in our daily prayers.

Dotty said...

Ava is such a trooper, our thoughts are always with you. i hope you can get good news and she can start to feel better ALL the time soon. hang in there mom your an inspiration!
God Bless!!
zach's momma

Fer said...

Terri, I'm always thinking and praying for Ava. I hope she can have her surgery done soon.

Bethany said...

Hi there,
Thanks for stopping by the JRG Foundation blog. I have kept up with Ava for quite a while, actually. Word travels fast in the CDH community. I hope and pray that things continue to improve for Ava. Thanks for the kind words.

Bethany Gillham

blairspage said...

I hate that she has to go through all of this! No child should have to! Bless her little heart. Her stomach does look big... Blair gets blisters on her belly like that... even keeping it wrapped up. It's kind of a trial and error type thing with the wrap, but I think we got it down where it doesn't rub like it use to. The wound looks great and it's healing nicely! Such a big difference!!!!

Hugs -Tiffany