Thought you might like to see her beautiful smile. She had a great day. We had a very small party. Brian’s mom and my mom and dad came over for supper, then we ate an ice-cream cake. She was ALL smiles. Wow are we lucky to have three beautiful girls.
~Terri
Today is a wonderful day. This was the day Ava was born. I remember being so terrified of all she would have to endure. She was not allowed to take a breath on her own. As soon as she came out she was lifted up so Brian and I could see a glimpse of her then she was whisked away quickly to the adjacent room. She was hooked to so many tubes and wires. We prayed so hard she would survive. We knew her odds were not that great but we also knew that God was in control. No matter what happened this was our daughter and we were doing ALL we could to save her.
More times that I want to count we nearly lost her. I remember leaning over, looking at her tiny body. I made a vow to her whether she lived or died I would do all I could do to make others aware of what Congenital Diaphragmatic Hernia. This birth defect does not discriminate. AND still to this day the survival rate is only 50/50. Each time I hear of another family getting this diagnosis my heart drops. We know the pain. We know the fear. We know the hope that exists in the soul of the parents, family and friends.
I decided to do another video to celebrate Ava’s fight this last year. She has been such an amazingly, strong little girl. She absolutely loves life. I am honored to be her Mother. She has made me pay close attention to details and to never take a single moment for granted. In this video you will only see her happy and smiling face. Ava gets very sad when she sees pictures of her sick. (me too) SO this is a fun video celebrating all she has accomplished.
I made this video last year and posted it on September 27, not knowing that a few days later she would be fighting for her life in the PICU at the University of Iowa Hospitals and Clinics. This video really brought tears to my eyes as I watched it today. She had such a rough start at life. We thought all that was past her. Unfortunately for those of children born with Congenital Diaphragmatic Hernia they seem to never be safe from the after effects this birth defect possesses. I did a survey awhile back about reherniations. HALF of you said your child had reherniated. I had suspected this before I put up the survey.
Parents of CDH babies….PLEASE listen to my plea today. ALWAYS be concerned and alerted to how your child is feeling. Get to know their “normal” so that if anything out of the ordinary happens you will be prepared. I’m not trying to scare you. I wish someone would have told me the signs and symptoms. I believe that on the day Ava became ill, God put in my heart and mind a sense that her patch had broken and that she was in serious trouble. She is alive today because I listened to my inner voice. I say this not to brag in any way….only that you will also heed the warning signs.
Sign and symptoms of rehernaiton.
(They can have one or all of these signs.)
*Become VERY sick
* Not wanting to eat or drink and resisting feeds.
*Throwing up frequently – green bile is sign of obstruction
*Difficulty breathing
*Fever
*Lithargic- laying around and seeming very tired
*Can not get comfortable
*Is not satisfied even with Mommy or Daddy (restless)
* Eyes can be sucken in if dehydration occures.
*Popping sound can sometimes be heard.
I am in the process of making a video of this year. She has been through so much. God has kept a protective bearer over her. This picture is how I imagine her all the time. It is my favorite so far. He watches over His children. He guards Ava as though there is a light around her entire body.
We are finally getting used to no central line. It is such a different world for me not worrying. It was a constant threat of infection. We are back to a normal routine. Ava has a very bad cough and we have been doing breathing treatments. I’m hoping this goes away soon as it very much disturbs her sleep and her appetite. She is down a pound and a half. She doesn’t let it get her down in the least. Pray it passes with no complications. This was one of the reasons I was so scared to remove her central line. So far she is kicking this cold to the curb!
Her 3rd birthday is tomorrow. I CAN believe it has been 3 years since she was born. It makes me sad to think of her birth and all the medical troubles she has been through. Putting that ALL aside she is one amazing little girl. She rolls with the punches. Her nurse practitioner noticed how she will cry and scream during “procedures” like putting in an IV but you will NEVER see her pull away or be mad at the person doing it. What a cool cat Miss Ava is.
God has been good! Thanks again for the prayers!
~Terri
We are Home! Wow am I tired. It hits me every time I walk in the door. Ava is doing great. She is literally running around the house with her sisters…….screaming, “NOOOOOOOOOO!”
So far the cultures are still negative for line infection which is the most wonderful news EVER! It was good that we were careful and just went ahead and removed it. I feel like a burden has been lifted off my shoulders.
Poor Brain couldn’t even celebrate her home-coming….he had to work. She did give him a pretty big hug as she saw him tonight but then waved goodbye as he headed out for his second job. What a good guy I have! Thanks for the prayers.
~Terri
They took her to surgery at about 8 am. A lot earlier than we expected. She was very nervous as she knows all about every step. It amazes me how much she remembers. I again carried her to surgery and left as soon as she was “sleeping”.
We are now back in our room and she is doing great. She ate a little bit. My mom came with donuts and she ate the center whipped cream out of one! So if she continues to do well and eat we will be leaving this afternoon. She is SO ready and so am I. She misses her sisters.
The blood cultures are all still negative for any infection. As of right now there was no infection in her central line. This is great news. We will be going home with an antibiotic for a few days.
This was right before surgery. We were snuggling.
Ava shortly after surgery in the recovery room.
Ava back in her room enjoying Dragon Tails on TV. She was still not quite all with it yet.
Ava eating the cream…yummy!
We have to get one last dose of her antibiotics (Zocen and Vanco) then we can go….probably this afternoon!
Thanks for checking in and Praise God her line is OUT!
~Terri
Ava has been so good today. She has eaten a little bit. She gets so impatient here and bored. Her temp has stayed under 100 all day today.We got to the hospital at about 7:30 last night. Blood cultures were taken. One from her central line and one from her arm. She HATES getting stuck with a passion. They started Vancomycin and Zocen (two of the antibiotic Big guns) at about 12:30 this morning. Her eyes still look sick. She was active today but not like normal. She feels stuck. She pulled the IV cart all over the room this morning.
The cultures so far have come back negative for anything. So this could mean several things. One that it is viral and nothing to do with her line. Or maybe it is her line but it has not come to the surface so to speak. Either way we are already here at the hospital and her line was scheduled to be removed next month so tomorrow she will have it removed. She is eating well and there is really no vital need for the line. It is a risk I was willing to take for many months but now I am at peace with letting it go. It took a lot for my mind to come to a decision. To a lot of people it was the only answer but with Ava I have to look at all aspects of her well being before making a decision. It is not an easy one. I think of all the sicknesses out there right now. Can she overcome a flu on her own? Will she be okay mentally to spend more time in the hospital if need be? I have no answers. We shall see.
I have learned by this very rocky road that none of us are ever in control of the circumstance. We may think we are but ultimately God knows what is to come. It is a choice we must make to give up the earthly control and hand God all the broken pieces and say, “Here you are God I can’t fix this and I give it to you…do not my will by Yours.” My friends if you have ever done this in your life and truly meant it, I suspect there may be tears in your eyes right now. Oh is it ever hard to do. To give it to Jesus. But I am telling you know He cares and He will bless you for it. Ava is one amazing little girl.
The last week many things have brought my mind back to her sickness. I normally try to avoid thinking about it. I have made the best of things that have come about. My sister is mentally not well right now.She was being hospitalized in our town. The song that we wrote together last year about CDH was life changing for her and I. I decided to take a card out to her at the hospital. As I pulled up my eyes focused on ONE thing. The helicopter that life flighted Ava to Iowa City that 4th day of October, nearly one year ago. Instead of shadowing away from it as I really felt like doing. I asked God to give me peace about it. Ava and I walked over and I set her down. Right then and there I thanked God for sparing her life. I asked Him for continued healing and to help me with this “anniversary” of everything. First her birth and all it’s complications and then her reherniation and many problems. Guys I took these amazing pictures….turned away and with tears in my eyes asked Him to give me strength in the days ahead…huh funny, ironic, whatever you call it. It was God’s way of letting me know there may be more but I need to follow Him because He knows the outcome. I truly believe without a doubt Ava has a very meaningful plan for her life. Something big is going to come out of all of her struggles. She is a survivor and such a fighter that loves life!
I will never forget looking up that very dark night watching that helicopter take my baby away and wonder if she would be okay. Knowing I did all I could do….
Then having her spike this fever brought me back… having to come back to the place we nearly lost her. As I pulled up I just had an overly load of sadness creep over me. Will she ever be well again? Will we ever stop worrying? Again I have to place this worry on Him and ask for help. Her birthday is always tough for me. Her birth was not happy but very frightening and sad. It nearly took my breath away to see her little body laying there hooked to every machine possible to save her tiny life.
As I drove here a wonderful song popped into my head. “Count your many Blessings.” We have SO much to be grateful for these days. Ava will get through this and if all goes well she will be discharged tomorrow. Surgery is scheduled for 9:30 am. My heart breaks each and every time we walk the long, very cold hall to the operating room. Her arms squeeze my neck tightly as she is very aware of what is about to happen. I am thankful that they allow me to take her back and place her on the table. I stay with her until she is sedated. Her eyes close and her body becomes very heavy. My child is no longer in my arms but in God’s…..
Please Pray for all of us. It is a fairly easy and quick procedure but we know Ava. She likes everyone to leave with a little extra knowledge under their belts! Ava gets very “knowing” and she gets quite scared. The girls are worried and Brian is anxious. I will not lie I will be glad when she is back in my arms safe and secure! Thanks for your love, support and prayers. God hears us all!
~Terri
Ava’s fever went away for most of the day. I took her to the ear doctor that confirmed with a test that she had no ear infection. She woke up from her nap with a 101.4 temperature. I called her doctor and they want us to head to the University. (Deep breath) They will culture the blood in her line and also take some blood probably from her arm. Antibiotics will be started. Most likely she will have her line removed tomorrow. I am okay with this. Is it hard? Absolutely. I hate every time I have to lay her on that operating table. It doesn’t get easier. Please, please pray things will go smoothly and we will be back home in a day or two. We just can’t spend her birthday in the hospital.
This is Ava this morning in Dr. Lyons chair.
“Lord please be with Ava. She has been through so much. Her health has been wonderful the last few months and I am going to do every thing in my power to keep it this way. We love that you have given her back her beautiful smile. We trust that you will heal her completely. In Jesus name I pray….Amen.
“Rainbows are just ahead.” I took this picture a few days ago. God is good!
~Terri
Okay so the last two nights Ava has not been sleeping well. Today she spiked a fever. It was 99 for awhile then got to 101. (I was waiting to give her meds to see how high it would go....to help rule out line trouble.) I gave her Tylenol because she said her left ear hurt her. I will get her in tomorrow morning to Dr. Lyons to see if it is an ear infection. She has been dumping a lot of water over her head during bath! She had tubes put in at around 17 months. I'm not sure they are still there. I am praying it is her ears and nothing to do with a line infection. I am watching her closely. Her last line infection started with shivers and fever. So far nothing more than just a bug. I'll keep you informed.
She has been eating great today and nothing else seems to be wrong well except her sleeping disturbances.
Please pray that this is nothing major.
~Terri
Ava has been great. I did have to change her g tube on Thursday night…it came halfway out. It had been in three and a half months so it was time to renew anyways! HOWEVER it was MY first g tube change. I was a little nervous but got through it just fine! She cried. I tried to console her and do it as quickly as possible. It is a tight fit for sure! So glad it is done!
Ava had a tea party at the park today. She is so funny. I love to watch her and of course photograph her ever move. Here are some of the highlights of today.
Say, “Cheers”!
Ava giving her bear a little face drink…:)
I HAD to do a little art with a few of these!
On August 31 Ava will be three. It is amazing the story of her life….already. I intend to write a book. I did start and have a lot more to write. She is such an inspiration to me and to so many. I want to thank everyone that leaves messages. YOU all are my blessings. I can’t wait for Ava to someday read through all these lovely messages and know how many people were praying and supporting her. We are so happy that we will get to celebrate yet one more birthday with Ava. My grandfather that is 80 asked me the other if I ever doubted whether Ava would survive. I have to admit I really thought she might die many, many times. However God had His own agenda. Praise Him!
~Terri
Ava is just truckin’ along doing all the things she loves to do. HEr vocabulary is slowly growing. She is now saying “No!” (gotta love that one) “Baby” “Bob” (She still calls me this.) Oh and my special favorite…. “Please?”
I went back down to two cans of Compleat Pediatric at night. Three was making her sick. And with two cans she will eat breakfast for me in the morning. She is gaining weight and is up to 29 pounds. I just talked with Josh our NP. I scheduled her line to be taken out September 21. I am so scared not because I don’t think she is well enough….just that it means if she gets sick we must go to the hospital if she needs fluids. AND for Ava this is not a pleasant thing. I may call and change it to October. (Feel free to give me your opinions!!) I’m concerned with the upcoming fall/winter months ahead where the flu runs rampid that she could benefit from the central line IF we needed it. Although I do know that she can’t keep it forever and it is a HUGE infection risk.
She is really doing great. Her bowel movements are SUPER. Actually they have never been better.
Here are some pictures of Grant’s Farm when we were in St. Louis. Ava was thrilled to ride the “train”. She had a huge smile the entire time.
See her checks?
Miss Ava and Daddy feeding the goat. She liked it at the start but then they started trying to eat her shoes and then she was not a happy girl!
The huge turtle!
Ava following the horse hoofs!
Thanks for your continued messages of support and your prayers. We are thrilled so many still follow Miss Ava in sickness and health. She is our miracle.
~Terri
I am happy to tell you Ava saw the “Wiggles” LIVE in concert last night. She was excited talking about going to the show. Then when we got there she was a little afraid. One thing you have to keep in mind is that Ava has not been around many children or adults. We have sheltered her from sickness and germs. She has never seen more than a few small children at a time in her entire life. She really did not know what to do….a little in shock too! The concert was GREAT! The Wiggles are such happy guys. They are talented. They dance and do flips the whole show. Ava was entranced. I held her at one point but then she wanted down. I made a HUGE sign for her to hold. Murray read it out loud. We were the only ones that had a sparkly sign! We also brought roses for Dinosaur Dorothy!
Thinking about how the Wiggles got Ava through her many, many days in the hospital and how they always seem to make her smile when her little body was fighting so hard makes me know how special they are to her life. It was a “full circle” moment for me. She is getting better and they helped her. We will always be grateful! Her sign says it all, “Miracle Ava loves the Wiggles!”
Before the concert she was all kisses!
Taking pictures around the pond. My sister and her husband made this pond. It is so peaceful and relaxing. We love it!
A few right before the concert.
Daddy got a great picture. Does she not look just like me in this picture?
AND here is Ava at the concert. This is her first expression! She didn’t have any emotion at all. She is much like her Dad….he is hard to read sometimes too!
For those that are not familiar….HERE ARE THE WIGGLES!
SAM!
ANTHONY!
JEFF!
MURRAY!
AND Murray did acknowledge Ava’s sparkly sign!
Thanks Wiggles for a FANTASTIC show! I am so glad we were able to take her. YES I was afraid of the germs….and yes I was a nervous wreck…and yes I am praying she stays healthy BUT she is ALIVE and is healthy at this perfect moment.
“Thank you Lord, Jesus. I am humbled by your gifts you have given us…. We are honored to be able to hold Ava up to you and count our blessings that she was able to experience something every child should…..THE WIGGLES! Continue to give us the strength to live each day and to never forget your goodness.”
First thing when we got home from St. Louis tonight Ava put her Wiggles movie in the DVD player and proudly held up her sign up to the TV screen. It is something I will never forget. I know she will remember this forever. I know I will!
If you will continue to help us pray Ava stays healthy. Tomorrow she will get a blood test to see how all her levels are doing. I’m pretty confident she is doing fabulous! Also pray fro Lexis she is not feeling well tonight. I hope it is not the flu. Her tummy is really bothering her. Thanks for popping in!
~Terri
