Notice Anything?

"Well do you notice anything different about me? They took out my NG tube today. I feel a lot better now. So far I haven't thrown up. Mom says that's a great start! This is what I look like right this second. Mommy thought you all could sleep better knowing I was resting well. Okay now I'll let my Mommy tell you about my day!"



Well today I had some wonderful emails, cards and packages that really lifted my spirits. I sat here thinking to myself, "How can I be so down when there are so many people thinking about us and praying so hard for her little body to heal?" I got a wonderful email from a prayer warrior for C.O.L.E. (www.colesfoundation.com) I also got a nice uplifting card from Vicki, a Mom that also had a cdh son. Then we got a package from Amber and Sienna. This is a Mom and daughter whom we have never met but she came accross our carepage and sent us two packages in the mail. VIDEOS for Ava! Plus all your supportive emails I get daily. It seems there is always at least 20 messages per post. How great is God? He knew I needed extra love. So thank you for all of you that listened to your hearts and sent a little something my way today. I know that it could always be worse. I can thank God that Ava is still with us. I got a few pictures developed today and my how terribly close Ava came to death. I just marvel at God's healing hands. Her fate could have been much different.

So I am in a better mood. We took her for a stroller ride (our stroller from home) and she once again Loved It! I think she was a little more comfortable in the stroller than in the car. I of course was too because of the germ factor. I think germs see me coming and they start crawling up!






This is the first time Ava sat with us on the couch. It felt really good. Now the next set of pictures is what Ava sees on the ceiling here. These are wonderful decorations and very cheery. Aren't they adorable?





Please say a prayer for little Ava tonight and our family. We appreciate you taking the time out of your busy life to think about us!

~Terri

Just plain tired of it all!

Today is really tough. Tomorrow we will have been here for 35 days, five weeks! We are all so tired and physically and emotionally drained. I woke up this morning feeling worse off then when I went to sleep. Ava slept very well last night but she too woke up a grouch. She was fussing and pulling on all her tubes and wires. It is so hard to tell if she is just sick of all this, or if she is really hurting. I don't think she is in that much pain when she is in bed but I do think she gets to hurting when I pick her up and move her. I can only imagine what it feels like to have your stomach open.

I know a lot of people have asked what they can do to help us. I was thinking this morning that it would be great to have home-cooked meals. If anyone wanted to make them up and put them in throw away containers we would just love that. We rarely ever leave the room. One of us always stays with her. She is old enough to know when we are not here. The last thing we want is for her to be afraid. I think in my heart Ava is in a good place right now. I'm a little nervous about what is actually going on in her insides but I have faith to know that God will work it all out.

We know that this is no where near over. She will have to be fixed, (her final closure surgery) if everything doesn't heal and then we will be looking at more time in the PICU and more time here. The surgeons are taking it all really slow because well that is how Ava needs things right now. Her tummy is feeling better and I think her nausea is gone. I have asked them to keep those medicines coming. Her tummy is not swollen that we can tell anymore. Last night I measured it and got 50.5 cms. So that is great news. Her drainage from the wound vac is very little and it is a light yellow color. All great signs. She hasn't had a fecer for a little over a week. Her blood counts were great this morning. She hasn't thrown up any more since they stopped the suction of her NG tube. ALSO we had poopy this morning. So things seem to be "moving in the right direction!"

She woke at about 5am and we took her for a race car ride again. She really enjoys that. We weren't able to get out of the room yesterday because this little girl slept peacefully ALL day. She didn't wake up until about 7:30pm! She IS getting rest.

I wish I could just open my eyes and realize this had all been a horrible dream. However I know that it is all very real.

Here are some pictures of her this morning. She is such an amazing little girl. She just rolls with the punches.
"Zoom, Zoom! I'm ready guys."
"Mom why are you stopping?"
Yes it is 5 AM in the morning, We are on "Ava time" everyone! My hair isn't even done, uggh!
Miss Ava's eyes look very sad again today. I wish Mommy could fix al your ouchies.
Princess Ava and her twin!

Now here is a video of her car ride. Keep in mind that it is 5 AM!

Photo and video editing at www.OneTrueMedia.com

~Terri

Rest Rest Little Ava.

Well yesterday we got moved into our new room on the Pediatric Surgical floor. Boy did we have a lot of things. It is amazing what you accumulate. So now we are all comfy and cozy. It is much smaller than our room in PICU. The great news is we have our own shower and bathroom! I did what I had to do but wow is it not in my nature to share a shower. Way too many germs for this little lady!

Anyway we are settled and I think Ava likes the quiet life back. She slept like a little angel last night. Perhaps her angels friends rallied around her and sang her the most beautiful songs ever heard. In fact she almost slept too good. Her heart rate was low. It hung around 98-128 all night. Now this little girl scared us with her respitory rate. It dripped down to 16! The monitor kept dinging and we got a little nervous. Brian would go to her and rub her back or uncover her to get her to breath faster. It seems crazy that just a week ago we wanted her to breath slower. She's probably like, "Mom and Dad make up you minds already, huh?"

We called the nurse in and made sure that it was reading right. It was! All her other numbers were fine. I am wondering if FINALLY she is getting her ever, so needed rest. Thank you Lord!

So the surgeons came in today and told us they were taking everything really slow. That sounds good to me. We will be attempting to remove her NG tube today. The NG pumps the stomach contents out so it is not sitting in her tummy. We want to get her little tummy to be able to pass things down normally through the intestines. They are not sure what other tests they will do on her to find out if there is a blockage. The GI was probably the easiest but well we all know what happened there.

Ava woke up bright and early this morning and I asked if she wanted me to hold her and she shook her head yes. I haven't been holding her much because she always acts really scared and is usually in pain. I don't want to cause more discomfort so I've been only holding her when we need to get her in her race car. She loves the car rides. I'm hoping it will stay nice out today and we could maybe get outside.

So I held her and tried to get her to stand between my bended knees. She did stand and her legs didn't shake this time. I'm thinking this is great progress! I only let her stand for about 30 seconds and then I scooped her back up in my arms. Many Moms take it for granted that they can even hold their babies. I will always cherish each and ever time I'm still able to hold sweet Ava.

She is smiling and nodding her head so I'm optimistic that this will be an amazing day! Keep the prayers rolling in!

~Terri

We're out of PICU!

Well this is a good news for sure. We came down to the Peds Surgery floor this morning at about 11:30 am. There is really no need for Ava to be in intensive care. She is getting better but there are still a ton of questions about her stomach that are left unanswered.

She is feeling a little bit better. I told them I wanted anti nausea medicine. There is no reason she should be retching. I have taken the symptoms of with drawl in my mind and I will be asking the doctor about it tonight. She has done really well about weaning. She didn't seem like the pain bothered her until last night.

Okay here are the pictures of us packing and leaving the Pediatric Intensive Care Unit. It was great to be leaving yet I was sad that we had to leave the wonderful doctors and nurses. We will miss you all PICU! How wonderful of a feeling that she is recovering.

Here is all her Teddy bears, balloons and books that were on her PICU shelf. The 3 B's!
Wow how did we get so much stuff?
Ava what are we doing with all your stuff? The next picture is what she is looking at.
AND this is only one cart!
What's going on Mommy?
Here we go!
Well are we here yet?
See me in my New bed, in my New room!
Here is my room Everybody!
I love the bear Joey and Emily got for me. Okay now I can sleep in my new room.

So now we are waiting for the doctors to come and talk to us. Her oxygenation levels have been running between 89-95 all day. Huh she has blow oxygen in front of her but no O2 in her nose. They may want to put her back on Oxygen. We shall see. Thanks for stopping by! Keep the prayers coming!

~The Helmicks

This is the way the "Cowgirl" rides.

Good Morning to you all out there is "Ava Update Land!" She really has been very sick (pukey) sick since the GI test yesterday. She was up all day yesterday until finally at 10pm she dozed off to sleep ville. She slept about 2 hours and then she woke coughing and throwing up. Her heart rate has been really high as well. In the 150's while she is sleeping and the 180's when awake. It feels miserable to be stomach sick. There is so little that helps the nausia go away. The have been weaning her Ativan and her Methodone. It was going well but I wonder if it is too much too soon. My theory is that her tummy hurts because of the GI test. (Well actually she started throwing up Sunday afternoon.) The test just compounded it 10 times! When she coughs it hurts pretty bad.

So another night with little to no sleep. I feel very tired today. I was doing our laundry in a few rooms down this morning and I thought to myself, "When is this going to end?" Our lives are so "up in the air" right now. Brian is going to have to return to work this next week. He has taken off all the work he can take off. He's burned all his vacation. The sad part is he just got it in September. I'm not sure what we will do when it comes time for her closure surgery. I try not to stress over money and bills. I know that God will work it all out. I have faith. He did it the first time with this "cdh monster" and he will do it again, I'm certain.

So the title of the post, well this is one of Ava's favorite songs. See the "cowgirl" rides the hardest and the longest. That is what I feel she is doing. She is such a strong and tough little girl. I know she is tired. Yesterday we had our daughter back. Today she is drawn back once again. I had them give her pain meds this morning. I know when she is in pain. Her tummy hurts so bad to cough but she has to cough to clear her lungs. She is getting to be quite the expert on coughing now. We are really proud of her. She makes us know what life truly feels like. We have been through the bad times, the good times, and the amazing times. We miss Lexis and Emeline so badly. I crave our normal lives. I know we will find a new normal and I can't wait until the day I say, "Everyone is healthy and here we sit, content."

The good news is that I talked with the docs here about giving her the syniges injections. This helps prevents or lessen the bomb is she gets RSV. We don't need that right now or anytime this winter. Normally they stop giving it at 2 years of age. I feel it is a necessity and they do too. Our insurance will cover it if it is "medically needed." I just don't want to be back in a few months with the RSV virus. I explained to them that Ava is very sheltered form the public and germs. Heavens know how many disinfectant wipes I've used since she was born. (I've gone through 3 big tubs of them since we got here!)

Now the plan, if you can call it that, is for the team to get together and figure out what test would work best for Miss Ava. Her body is so fragile that she really can't tolerate very much at all. It frustrates and saddens me that I can't take this pain and discomfort from her.

She is finally sleeping right now as I type. (So is Daddy) He stays up with her all night long so I can rest. I love my husband so much. I don't know what I will do when he goes back to work. I need him here and so does Ava. I guess God will have to lead us down that path when it comes. I do know that I picked the right guy. He is such a wonderful man and a loving and caring Father.

"God help us today to be able to sift through the bad and find the good. I thank you today for giving our beautiful daughter. She has filled our lives with so much Joy! She has made us stop and ponder what this great world is all about. Be with all the parents, babies, families, doctors and nurses, that are going through trials of their own. God you know every situation there is out there and you know that even though I can't help everyone I sure can love and pray for them. In the midst of this horrible storm we do see your love and strength. We know you are here and that things will get better. Thank you for all the wonderful strangers we have met along this journey. I am humbled by their actions and kind words. We love our family and friends and know that this is very hard for them to watch as well. Please continue to watch over Ava and give Brian and I the strength we need to face another day. We hold onto your word and we treasure all three of our precious daughter. We love and thank you for all your goodness and mercy. In Jesus name, Amen."

I know that one day life will return but until then we take this journey, "One Day at a Time."

~Terri