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.