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!

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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

All good things.....

So hello and I know I promised an update the other day but wow have we been busy. On Sunday I decided to tackle painting my bedroom. (My Mother was gracious enough to help me.) It is very large almost the entire length of our house. It is like 30 feet by 15 feet, very large and MANY walls. But it looks so much better. OH and we also brought out her toddler bed. I wasn't sure how she would in it, but she loves it! Plus it makes life easier for me as well! So she's a big girl. now!








So now to Ava. She is really doing well. The antibiotic is doing it's trick and she is healing nicely. She is still on suction a few times a day. If I see that she looks like she is getting nauseous I suction her and then the sickness passes. BUT she still manages to throw up 1-3 times a day. This is the best she has done so far! She is pooping too! I was getting green intestinal bile but now it is either clear or yellow, which means things are passing through at a slow rate BUT are going through! She doesn't have an appetite lately this bothers me. It is expected sad to say. Her canister (suction) output is also slowing down. The last four days all I've gotten out was 300ml's TOTAL!

Her stomach is also getting smaller. I swear by this suction machine. It is taking all the gunk and air out of my baby and making her feel better. Here is how her tummy looked a few hours ago at dressing change. The wound is closing nicely!



In case you are interested this is her Hickman line without the dressing. And not that is NOT blood it is beodine. I change it 3 times a week since she has an allergic reaction to the Chroraprep. (Normally a line dressing would be on a 7 day change. Not lucky me!)



So we are hoping to take this month slow and then get her into surgery, early February. She is an amazing little girl. She is always so happy. She loves life and she loves her family! Enough talk here is a few more pictures!









Thanks for checking in on Ava! God bless.

~The Helmick's

L.E.A. ~Sisters!

Hello! I will update tomorrow but HAD to put this video of them "doing their thing" tonight for all to see. Way too cute for you to miss. As you can see Ava is doing better. L.E.A.~ Sisters stands for Lexis, Emeline, Ava ~ Sisters!

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God Bless you ALL!

~Terri

Kick'em when your up, Kick'em when your down.

Hello to All! So Miss Ava has a new problem we learned of last night. The last three days or so I've been noticing Ava grabbing her at her bottom. Her bottom started getting red, irritated,and a tiny bit of blood. I asked them about it at the doctors on Tuesday. They told me to put cream on it and it was probably a rash. That didn't settle right with me although I did give her two suppositories the other day (per docs orders)to try and get her to pass her stool. (It didn't work.) Yesterday she wouldn't keep her pants or diaper on for nothing and she was itching so I called our local doctor. They got us in before the nightly "crowd" arrived to avoid germs. I was so happy to see that our favorite Doctor was there. They did a swab test and she has Perianal Streptococcal Dermatitis. In easy terms, Strep in her butt. Can you believe this? I called Josh in Iowa City and he felt bad. He said sometimes we forget she is a kid and she can get the very normal things as well. So for her treatment we are going to try and give the Amoxicillin through her NG tube. It has to stay down for one hour to get into her system. We did get an cream as well to double whammy it. Pray it works and fast. This may have been a big part of her problem the last few days.

Last night she slept a tad bit better. She still woke about 5-6 times whimpering. Poor baby girl but at least she wasn't crying. I suctioned only when I felt she was getting nauseous yesterday and last night. I got 500ml's out. Her urine output is on the low side so we are going to start her bolus hydration today. She is not dehydrated but they think she is using ALL her TPN to keep her hydrated and then there is not so much pee. I hope this makes sense as I was a little alarmed last night that her diaper wasn't soaked like normal. (Okay I just felt her diaper and it is pretty wet so I feel better. She is still sleeping.) She thought it was time to wake up at 6am this morning. Yea, not so good for Mommy.

On a good side, if there is one, she only threw up once yesterday. Naturally it was in the car on the way out to the doctor's office. Oh and I had no bucket. Her blanket caught it all!

We are hoping she starts to feel better soon.

Thanks for your prayers and messages. They truly help me in a way you will probably never know!

~Terri

Coping

These are some pictures from yesterday.










Hello to everyone. I got a small nap today and I feel a little bit better. My mind is still running a little slow so bear with me. Last night I was a nervous wreck having her on the suction machine because our machine isn't for "constant" suction it is an intermediate device. I called the Apria company to find out what "Low" suction meant, which was what they told us to put her on as soon as we got home. Well the guy was shocked that they let her come home. He told me that he thought if we ran her machine at constant it would burn up. Then he said there was no accurate way to set it at a low setting. I panicked to say the least. He walked me through the steps of setting it at the lower speed. Then he told me that he would see about a different machine but again it might be tough to do for a home situation. So all night long I shined the flashlight to see if everything was working properly. It was. My eyes almost never left her pulsox machine as I studied her heart rate. I knew one sign that she was in distress was high heart rate. She seemed to be doing fine heart wise. Then I got a little concern because she was putting out quite a bit but once again I am not a nurse. So I watched and got little sleep. She still rolled around about 5 times as though uncomfortable. Then she would fall back to sleep. Oh yea another thing about her suction machine is it is SO loud. It's vibration and noise could be heard through out the entire house!

She finally woke at 6am and wanted to go play. I called her doctor and asked about her output and he was thought that seemed high so he told me to set her to gravity unless she seemed to have an unhappy belly. This made me rejoice to say the least. Did I mention my pounding headache from the loud machine all night long? It was bad! So we stopped the machine and she was able to move arounf better but still hooked to her TPN. After we unhooked that she was back to her normal happy self. My Mother came over to clean this morning. "Thanks Mom!" Brian does pretty good about doing the laundry and keeping things straightened but dishes, well let's say he's not thrilled about doing them. And also Karen, Brian's Mother went and bought us groceries. I am so greatful. I just can't leave the house and Brian is always working.

The plan for Ava is to give her boluses of IV fluid. We don't want her to get low and become dehydration. That would be a little hard to do since she is on 100% TPN feeds but we need to be safe since she did throw up quite a bit and her output last night was so much. Then if she starts feeling better we wait of course. She has an appointment January 27. They want to do a revere swallow. (That is NOT the technical term so don't laugh!) That means give her an enema and see where it goes that direction. Also to do a swallow study AGAIN. I hate them and I told them NO yesterday and insinuated on the CT scan. They are pretty much the same just the scan shows a little more. So far today she has not thrown up. I say that and then it WILL happen in a matter of minutes but so far she is good. Then how do you throw up if there is nothing in your stomach? When she awoke from her nap she seemed a little more uncomfortable. We will see how she does tonight. I am not going to let her be uncomfortable as I know we will have to move surgery up.

Here is a video of yesterday. I will also add pictures of her today.

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She was spreading out her blankie all by herself!






On a very sad note we found out this morning that Brian's cousin was murdered by her X husband. He strangled her and then started her basement on fire. We are all in shock although we all know he was very weird and might be capible of this horrendeous act. Cyd was a wonderful, caring, lady. She was one of the sweetest people in my life. She has two daughters and they already miss her so much. Her Mother and family are just devastated. We all are. Her killer is behind bars. Thanks you God. Please pray for healing in our hearts as life will never be the same without our cousin Cyd Crawford.

Thanks for checking in on Ava. She still has a long road ahead of her. God heals!

One last thing.....all your messages well the truly give me the strength and stamina I need so to all that pop out and write I want to thank you from the bottom of my heart. You are my angels!

~Terri