Sunday, February 12, 2012

Emma's Story

Today I chose to profile a heart child who is celebrating her birthday today. Sad thing is,she is celebrating it in heaven. That is reality for so many heart parents and it is heartbreaking.

Emma is my 3rd baby. My boys before her were normal and healthy but from the second I was was pregnant with her I knew I felt funny. I figured I was pregnant with a girl. Yay for me I was, my first princess.

At 14 weeks we were sent to a specialist because her right kidney was enlarged, while going for ultrasounds every few weeks it continued downhill. At 18 weeks they said she had a heart problem but were not quite sure what it was. At 21 weeks they said they could no longer see the problem in her heart but I'd continue with the ultrasounds because of her kidney. I knew that they were wrong. Everyday I argued back and forth with myself over her heart. I even had them print ultrasound pictures of her heartbeat out instead of normal baby pictures. They thought I was crazy. I should have pressed harder to get answers and have the doctors dig a little deeper. I learned through my pregnancy with her that I should always trust my gut. She was delivered via c-section 5 weeks early after an ultrasound the previous day when they brought up again that she has a heart problem. I was told it had something to do with her aorta. I had an amnio the morning of her delivery and waited for the results. I prayed her lungs were mature enough for delivery. One week in the NICU and she came home with extensive follow up with all types of specialities. Mainly cardiology.

At 2 months old we were prepped for the worst... She had 4 different heart problems. Hypertrophic Cardiomyopathy, Endocardiac Cushion Defect, Pulmonary Valvular Stenosis and Sub-Aortic Stenosis. The kidney was put on the back burner because it was functioning fine.

At seven months old Emma was finally put on the transplant list for a new heart, after me yelling and screaming at the hospital that she was going to die and they wouldn't do anything. I think stress got the best of me. 17 days after being placed on the list she received her new heart. 10-7-09!!! YAY! She was just under 8 pounds at the time. It was the scariest time of my life. My fear was not for Emma but for her siblings. I always treated them like adults throughout her journey because I knew if I sugar coated how bad it could get then they wouldn't be emotionally stable if she ever died.
We then spent 3 months in the hospital because the heart was just a bit to big for her chest. She eventually was placed with a trach because she developed tracheobronchomalacia as well as left main bronchus compression and I had to go through all types of training on CPR, meds and overall care for a bed bound baby! She had an NG tube for the remainder of her life. Her brothers (ages 6 and 4) even learned all about her vent maintenance and helped with the daily up-keep of it! They were so brave for her.

She started to grow at the time of her death she was just over 15 pounds.

To her death: The night before she went into cardiac arrest she start throwing fits, which she had never done. For example, she would kick her legs up, slam the down... arch her bach. The next morning we had a doctors appointment but before that time even came I had called my transplant nurse because of her change in attitude. She said she'd take a look at Emma when we came to the hospital in a few hours. Emma's heartrate was normal and her pulse ox was 96. I started to get Emma ready... changing her clothes, trach ties, etc. Well Emma started throwing a fit, followed by the worlds largest poopy diaper. Seconds after I changed her diaper she passed out. Turned blue and stopped breathing. CPR followed with 911. EMS worked on her for 35 minutes while taking her to the closest hospital. Once stabalized she was transported to Children's Hospital in Detroit. Days later after EEGs and MRIs we were told that lack of O2 lead to complete brain stem damage. We really had one choice and that was to remove her from life support.

I have found great peace in knowing that I was the last thing that Emma ever saw! My touch was the last thing she ever felt before she slipped away! It was me! I never left her side!

That all started on Feb 4th. She was turning 1 on Feb 12. Her father and I decided to wait for her birthday so all the other kids (13,11,6,4) could see that she made it to her first birthday! 3 days later we removed her from life support. It took just over 45 minutes for her heart to stop but it was very peaceful! I held her the whole time. We even tried to donate her organs back but again lack of O2 during her passing made it impossible. But we found out after her death that the "swelling" of her right kidney was because it was 2 kidneys fused together both fully functioning. Which was so cool to me!

Emma has taught me so much about the true meaning of love! I have many rough days but overall I have found that if it weren't for her life and death then my family would still just be existing in the world today! Now we try to make a difference and stay positive! I am forever in debt of my daughter Emma! 

1 comment:

  1. Godless always , i am truely touched by the princess & her long battle ! She truely a perfect Angel in heaven<3