Friday, January 16, 2009

The Ups and Downs.

Hey there everybody. Ava has been having really good days and not so good nights. She generally only gets sick once or twice during the day and her nights are filled with gagging and retching. I try to suction her stomach before it has a chance to upset her. Most of the time it works. Lisa the nurse was over this afternoon to see her wound dressing change. She was shocked and amazed at how great it looks. I swear it heals before our eyes. The open wound is down to "2.5 x .5". Really if her body is healing as well on the inside she should be looking great come surgery time in February. The outside of her tummy goes up and down. On Monday it measured 52cm's and today it was 54.5. I think it has something to do with all the gas and gunk in her stomach. She has been farting great today!! ;) Also pooping almost daily! The antibiotic help move things along. Too bad she couldn't be on it all the time! She only takes water by mouth. She used to eat a little bit during the day but she knows that food makes her tummy upset and that it will soon come back up. Smart girl!)

Here is a few pictures from the last couple of days.

She knocked her sister out with that punch!

Okay here she is coming down the stairs carrying her hydration and TPN pump in her baby-pack! I wish we could put her regular TPN in this bag but it is just too big! She is so great about hauling it all around with her.

(To recap all her medicines and extra needs. She is on Protonics and Famotidine for reflux. She is now taking a Phenegran suppository at night for nausea. She also can have Zophran for nausea during the day. She gets a bolus of hydration at 7pm through her IV. She is on central line IV for her nutrition 14 hours at night starting at 8pm. I change her wound dressing pretty much every day. I change her Hicmann line dressing Monday, Wednesday, and Friday. We have only been using the suction machine to suction her stomach gunk whenever we think she is going to get sick. SO of course she still has her NG tube that goes to her stomach. We are not sure when we will discontinue the tube as I feel it helps me be able to do something to make her feel a little better. (Sigh) I think that is all of it!)

So yesterday I got to thinking we have so many followers from the Cole's Foundation that really do not know Ava's "whole" story so in my spare time (Ha, ha) I threw this video together. It is her journey from birth to now. You might want to grab a tissue as most is extremely hard to watch. I hand picked these songs as they best describe her circumstances. My baby what a story she has to tell. ALL through her life God has been right by our side. I feel lucky everyday I wake up and know that each and every one of my girls is safely in my house. I know what true happiness truly is!

I will be adding this video to my updates each time so that if the new followers can watch and "know" our sweet Ava and her fight to survive this fatal birth defect called Congenital Diaphragmatic Hernia. I want all to know that it does exist and it takes many babies lives each and every year. Her story doesn't end here. Her battle with this birth defect is not over nor will it ever be. Will I feel at peace someday? I hope so desperately. We will always and forever worry about her patch but I do know that God is in control and if He is then I can let go and enjoy life with my three girls and my loving husband!

God bless and once again thanks for your thoughts, prayers and loving, caring support!

~The Helmick's


Dotty said...

you are such an inspiration, not just as a mom but as a CDH mom. your faith and love shows thru your posts. Ava is a beautiful, strong spirited wonderful miracle, proof that God's great love does shine down! as always your in our prayers. the video was amazing, Ava is Amazing!!
much love and Blessings
mom to Zach lcdh 10-26-07

Kaden and Angel Ava's mommy said...

I am in tears. I know the pain and struggles Ava and your family have gone through. As I watched your slide show my heart started to ache. I know that I have read about Ava getting burns on her arm from the PICC line, but to see the pictures broke my heart for her and you as a mom who was trying to tell the doctors something was wrong. I couldn't watch anymore. I can't explain how sadden I am that Ava has gone through all that she has gone through. I don't know if I could have been very respectful towards the staff at the hospital after all that had gone wrong. You are a tough little girl Ava, evidently your mommy and daddy passed that down to you. I wish that I could have watched the rest of the video, but like I said it really broke my heart.

I know that these CDH babies are tough cookies. I too am blessed with one of these miracle babies. I feel so blessed to be given such a wonderful gift from God.

You guys are always in my thoughts and prayers. I hope that Ava's nights start getting better. Take care.


Jaxsons Fight said...

Thank you so much for the video. I have only been following for a couple of weeks so its nice to see her history. Hugs from Lacey and Jax

Evie's Mommy said...

Ava is such a strong little girl!! Much stronger than anyone I know. The things she had to endure on a daily basis, and yet she still plays and smiles and enjoys her life. She knows it's a gift-too many people in the world take that for granted and concern themselves with material, unimportant matters. Your little lady is going to grow up to be such a wonderful woman! She will be able to lead and guide girls just like herself and they can learn from her strength.
We are sending wonderful wonderful thoughts and prayers your way for surgery next month.
We've got our entire church praying for her!!!

Sarah & Evie

Fer said...

Beautiful video Terri. Ava is such an inspiration to me, to us all!. I keep praying for her.

My Three Sons said...

Your little Ava is such an amazing little girl. To see everything she has been through and still smile!!! Your an inspiration as well. I'm sure you have very trying days and I pray that you will get some well deserved sleep and peace of mind very soon.

God Bless

The Rice Family said...

Your video of Ava's fight was absoulutly amazing. She is such a tough little girl. I cried when I watched because it brought back allot of memories. My son is also a CDH survivor. I beleive they truly are miracles. So glad to hear things are getting a little better. Hope Ava gets to sleeping better. Stay strong. I think you are an amazing mom and also very strong. I know it's horrible to have to watch your angel go through all of this. We pray for your family every day. Remember baby steps. You will get there.

CureSMA4Stella said...

Hello Terri and family,
Thanks for checking in on Stella! I was so glad you left a message because I had lost your site when I switched computers. I'm so glad she is doing better, Terri and I will try to keep up so I can keep praying for her needs as you go into surgery. Wish I was back to the SE Iowa area so we could meet! I never get back anymore it seems. I'm sending you big hugs though and yes, you are a great nurse!!! Apparently I am one too?? Oh, and an RT . . . Funny huh?
Sarah and Stella