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
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 Children’s 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….
Well, they induced me on October 18th after giving me a round of steroids – she was due Nov. 10th. I had also developed polyhydramnios and when the doctor broke my water, they started losing her heart rate. Immediately the doctor yelled for everyone and said we were going in for emergency C section and they knocked me out quickly and had her out of me within two minutes. I was not able to see her until the next day as my blood pressure skyrocketed. But, the head of neonatology came in and explained that my baby was in critical condition, had a ventilator and chest tubes inserted on both sides. Also, she had a central and arterial line that went through her umbilical cord and they had her on blood pressure meds to get her blood pressure up. When I saw her I just cried! But, she was alive and that was all that mattered! Everyone from nurses to doctors in the NICU just were wonderful and they all fell in love with Lily! She amazed the doctors by her strength and after 5 weeks she came home! The head of neonatalogy told me – he did not expect her to get better so quickly!
Fast forward to today – today it is November 5, 2005 and Lily is sound asleep in her crib. We had a beautiful day today – we played, we laughed, she ate lunch and spit lunch at me – she screamed because her teeth are hurting, she babbled all day long and especially has long conversations using dadadadablahblahbaba – she has lots of stories to tell…. She gave me kisses and kissed all her babies – she pulled my hair and honked my nose – she was cranky because she was tired, yet she was a cuddle bug in my arms. I sang to her and she was soothed – she laughed and I was soothed. The whole point being is that my day with Lily was just like any day with any child – Lily is not really any different than Dustin was. I love Lily more than I could have ever imagined that I could love a child. She amazes me with her strength and her perseverance and her will to fight for her life. She amazes me by the way she loves me so purely – she amazes me the way she has changed my life for the better… I realize that Lily will dance and dance away – the dance studio that my neice belongs to is waiting for her with open arms! I learned that Lily is going to do more than I ever dreamed of. I learned that I did not know very much about Down syndrome before I had Lily – most of all I learned that there is really nothing to fear at all….
I could never be the woman I am today without Lily. She has brought me to the best place in life that I could ever want to be. I could never or ever would I want to imagine a day without my Lily in it. If I were never to have known her – I would have missed out on so very much of life. She is my everything – she is my hero and I love her more than anything – my love for her is undying and unconditional and I would not change one ounce of that beautiful little girl even if I could. She has taught so many people so many lessons about life and love and she has won more hearts than I could ever begin to count. Lily has changed many lives for the better and everyone who knows her has become a better person because of her and they will be the first to tell you so. She lights up a room and her smile is like a ray of light from the sun – I thank you Lily – for being my teacher, my hero – my everything….
Pages: 1, 2, 3, 4, 5
