Meet Olivia Danielle Freeth
BORN July 29, 2004 ANGEL December 20, 2004
Olivia was my angel my saving grace. When I went in to the hospital to have her I never had a worry in my mind that she wouldn't be perfectly healthy. I had two children before her that were very healthy and even though she was a surprise pregnancy I took good care of myself during the pregnancy... I went to all my appointments and also had a level 2 ultrasound and never thought that anything was wrong because the doctors told me everything looked normal. I had asked to be induced if I went over my due date and the doctors agreed that they would help me by induction 3 days after my due date.
I was in a lot of pain from the induction but the delivery was the easiest of all my children. We were told she would be around 9 lbs and she was only 6lbs 1 oz and she had a tiny head. So much so that she came out with her hand beside her head. We felt something was wrong from the moment we saw her. Dan kept telling me I did such a good job and yet he could see something was terribly wrong. I felt my world was spinning. I asked them to take her quickly to the table and my husband stood by while they worked on her because she wasn't making noise or breathing well. She was severely floppy. I couldn't imagine what had happened since she kicked so much inside me. I wondered if the induction had hurt her. I wondered many things that put the blame on myself.
We had a waiting room full of family ... they were so excited to be there. The news to come would not be good. Everyone was in shock... the quietness and tears and hopeful comments that all would be ok took over where joy and hugs and congratulations were supposed to be...This did not only break our hearts... it was breaking so many hearts. We were all scared and in shock.
The doctors were at a loss but could help her to breathe and they realized soon that she needed to be at UNC Children's hospital nearly an hour away. I checked myself out of the hospital and went straight to see her at UNC. The GI surgery and tests kept me from feeling any comfort... I was always worried. I never knew if the phone rang if they would say she had died. I needed to know her... I had some hope that somehow she would survive all this. It took 3 weeks of tests ... Most coming back negative... to find out she had Zellweger Syndrome. I remember all the times they said... "Well she doesn't have Downs Syndrome" ... "Well she doesn't have Prader Willi".... and I was relieved... I was happy she didn't have those syndromes.... When they called us in to sit down with 8 doctors and told us that Olivia had Zellweger Syndrome and that she wouldn't live more then a few months at most... I wished that she had Downs... Or Prader Willi. I would give anything for her to have something that would allow her to live.
I had come to the NICU everyday... for 4-6 hours at a time... Pumping breast milk for her so she could have the most nutrients she could get and sometimes I even went twice in a day driving home late at night or staying till 3 -4 am so I could meet her night nurses. There were times where she would have apnea spells with her seizures and I would ask the doctors a simple question about it. I guess my questions were full of hope.... because their answers would always devastate me. I broke down so many times and even told one of the doctors to "just stop"... that she was devastating me and I couldn't take it anymore. I wanted her to tell me how to heal her... how to make her better. There wasn't anything they could do and I was in denial. I wanted the doctor to give me hope and if they couldn't tell me that I didn't want to hear anything bad... Like it would take away the truth if they didn't tell me.
There were many sick sick babies in the NICU. Many were so tiny... some had breathing issues...but my sweet Olivia was the only one that absolutely would die. They all had hope. The other babies could fight harder and overcome. Olivia would just get worse. But when I took her home at 4 weeks old... She got a little better. We had some very scary nights but around her 3rd month she was doing better except for her bladder infections. I kept thinking that if she could get rid of those fully she would get stronger and be able to breathe better. We were never able to keep the infections away.
I learned how to do many things to care for Olivia. Many things I didn't want to learn how to do but I did and in the end I preferred that I do it over a nurse or doctor. I knew how to not hurt her. I never could completely give up hope. I took her to appointments that I know the doctors wondered why I would want to see if she could get a hearing aid or a helmet. I was trying to get her physical therapy for a long time. In the end I got it and put it off. I didn't say I didn't want them to ever come... I just said that I wanted to give her a break for a few days. I wanted her to relax during her days she was with me. She would get more from hugs and kisses and our love then she would get from a doctor or nurse trying to fix her problems.
I was able to bond with her and I cherished every day I had. I loved to dress her in pretty outfits and hold her at Kiss level... That is where you have their little head high enough on your shoulder you can turn your face and kiss her head with out leaning down. We took so many pictures... now I wished I had more. We also had taken pictures of her in the NICU and of us after her birth but to this day... I have trouble looking at those. I remember those days and of being so scared... the pictures remind me and I would rather remember the good days... snuggled into a recliner with her on my chest just singing to her and kissing her.
We learned to live for each day. In that journey I found Christ and he is strong in my life. Through him I will see her again. The day she died we all crawled onto our master bed ... my Husband, my Mom, Dan's Mom, My Pastor David, and our Hospice Nurse Nancy. We held her and prayed as she struggled to breathe. I had always prayed that God would not make me choose between treatment or no treatment for Olivia and that day I knew that it was Olivia's time, that there was nothing that could be done. I rocked her and kissed her through her last breath.
We kept Olivia at the house for 6 hours... allowing family to come in and see her and hold her. I think her siblings, Matthew and Jordan needed that time. We all did. In memory of Olivia...AND with a lot of help from my sister, Monica we started this support group and along with many loving Managers... we plan to bring hope to families that are given no hope.
I love you Livvie! Everything I do ... I do for You ... You are the Gift that God gave me. you gave ME life... because you showed me I needed GOD... and I am saved now. Till we meet again sweetie...
Pam Freeth
Non-profit organizational ID: NS012973
Tax ID: 20-3695622
Last updated: June 1, 2007 | 
