Our Story Lisa and Lily a Story of Fear Turned into Love and Hope and Acceptance
Completed November 5, 2005
Pages: 1, 2, 3, 4, 5
I finally managed to get up the strength to call my sister. As soon I as heard her voice I started crying and just blurted out that Lily did have Down syndrome and I broke down again on the phone. I hate crying uncontrollably in front of others, yet I could not even talk. She wanted to come over, yet I just wanted to be alone. She said she was so sorry and to please call her and she would be over any time I needed her to be. I thanked her, but told her I just wanted to be alone I was so devastated I was so incredibly devastated. I wanted to call my mom, but it took every ounce of anything I had left in me to even call my sister. But, my mom must have had that mom instinct because she called me right after I hung up with my sister to see if I had the results back yet. She could tell right away that something was wrong. I managed to tell her and she said she was so sorry she knew I was not wanting to get this news. She also did tell me that although she was sure that I did not want to hear this right now that she knew that God gives special children to special people and she knew I was someone very special and that God loved me very much and trusted me completely with this beautiful child that was mine. I went to sleep off and on out of sheer exhaustion and everytime I would wake up it would hit me again and I just cried for forever it seems. I would wake up and think oh I just dreamt that and then I would realize it was my reality
.
My days after that were a blur, with Dustin being gone I was all alone and just spent the next three days crying and researching online. I was afraid about everything. I was afraid of any health issues she might have I was afraid she might not make it. I read somewhere that most babies with Down syndrome usually miscarry. Hmmmm luckily I had no plans of terminating as some of this misinformation may have swayed me. But, I kept researching and I posted immediately on the Down syndrome message board on Baby Center. I was amazed at the outpouring of support and love that everyone there had for me. I was overwelmed by all of this and it helped get me through. I do not ever recall a moment in my life that so many beautiful people were there for me and understood what I was going through and gave me so much hope. I was just hoping for the day that I would not cry any longer. I was unable to tell anybody else as everytime I did I broke down in tears. So, my sister was kind enough to tell everybody else for me.
I went back to meet the genetic counselor again and also another Doctor from the Maternal Fetal Medicine staff and they again apologized for having to give me such news. They explained that I was probably feeling lot of different emotions and that it was ok. They gave me a book called "Babies with Down syndrome. A New Parents' Guide" and thumbed through it going over different things with me. They explained about the heart defects and other health issues that she may or may not have. They explained that she would learn to walk and talk, and dress herself and go to school with other kids and that she could even go on to hold a job and possibly marry one day! They told me her options were wide open, and how much hope there was nowadays as opposed to just 5 years ago. They gave me a list of support groups that I could be in contact with. They also made sure to find out if I had anybody to support me such as family or friends, especially since I was doing this as a single parent. They told me the best thing I could do for my baby was to love her and treat her like I would any baby and to expose her to as much as I could! They gave me lots of hope and lots of information - it was great! They made me feel better!
I found the Trisomy 21 site through someone who posted to me from Baby Center and I posted there and immediately knew I was at home. Each day got easier and the tears became less. I found a family on the T21 site and I was overwelmed with the outpour of support for me and Lily. I learned so much from everyone and I grew to accept Lily as Lily a beautiful little soul who would just be whoever she was meant to be. I read "Welcome to Holland" over and over again I always cried, but I kept it close to heart. I found the strength to tell others and explain it without fear or sadness. I explained to everyone all the things she would do and that my hopes for her were still the same that they always were. I learned to be stronger and fight for Lily I had to already advocate for her to a couple of people who thought that I should consider her quality of life and terminate. Boy did they hear it from the new me! The super charged super strong mother who I never was before. I sent them lots of information and made them realize I knew exactly what I was doing and of course once Lily was born I had lots of people believing me!
The rest of my pregnancy came with lots of heartache and ups and downs
. I found out that what was thought to be a small VSD turned out to be an AV canal that would definitely require open heart surgery. I was devastated once again I cried and cried I did not want my baby going through this at all
. But, the doctor explained that they do this all the time and that she would live a long life like if she had never had a heart condition. Then at my 34 week appointment with the Fetal Cardiologist I found out that Lily had fluid on her lungs and abdomen. They kept talking about Hydrops I was not really clear as to exactly what this meant. He told me I would probably need to go to the hospital, but my ob/gyn would decide that. He said he was going to call her as soon as I left - I told him I had an appointment with her that afternoon and he said "good"! I did not know what all this meant, but knew he sounded serious. I had a brief minute at home to do some research and read something about "Hydrops" and that it had a high mortality rate. I was so scared and just thought, I am sure it must be something else. I went to my ob/gyn and she said go to the hospital now! She would not explain, but said the high risk doctors were expecting me and they would see me there.
My sister and I went straight to the hospital and they did another u/s. The high risk doctor came in and said, yes my baby did have fluid on the lungs, but not in the abdomen. He explained that it could be there for several different reasons and at this point they were not sure. I said, ok if all looks well than I can go home tomorrow and he was like "well I did not say that either"... I went to the Antepartum and they determined she had developed Non Immune Hydrops. They sent the head of Neonatology in to speak with me after being there a week. He told me the good, the bad and the ugly - I was devastated once again. He explained how serious Non Immune Hydrops is and how it could have so many causes they may never know. But, he explained that it was very serious and there was a chance she might not even make it. He said there was a chance she could be stillborn, which is why they were not letting me go home, and would just keep her inside of me until they determined that she was not doing well inside. He said if she were not stillborn then she had a 50/50 chance of making it. He said even if she did make it, that she would be in NICU for at the very least weeks but most likely months. He explained she would be on a ventilator and have chest tubes inserted as soon as she was born to remove the fluid. He explained there might be a chance she would have to be flown to Childrens Hospital in Detroit for emergency surgery due to Pulmonary failure or something like that. And once again he left and although I appreciated the truth I was even more scared. At that point I did not even care about the heart defect or the Down syndrome this was so much worse. The fact that my baby might not make it just made every part of me hurt! I broke down in tears just like when I had first found out about Lily having Down syndrome. Immediately my roommate Alina came over and just hugged me. She told me that God loves all the babies and that God would not take Lily from me. She prayed for me and with me and I felt like she was my angel that night. I just wanted to hold my baby I just begged God to please oh please let her live I told him nothing else matters to me I just want her alive. I was so scared to think that we could have come this far only to lose her
. Everyday I talked to her and told her to be strong everyday I prayed everyday lots of people all over the world came together and prayed for Lily I knew she was meant to be for so many reasons....
Pages: 1, 2, 3, 4, 5
