I share my story with all of you today. One year ago today I was blessed with my Down syndrome child! I share this with you in hopes to help protect un-born and newborn DS babies. Remember this is all my opinion and not at all Kutest Kids!
We tried for nine months straight after just having a miscarriage two months prior. Then, it happened.
I knew I was pregnant because of the dreams I was having. I’m a very vivid dreamer. I find out many things in my dreams. December 23, 2010 12:30-ish AM I woke up to pee. I took a pregnancy test at this moment because I was a few days late. It was such a methodical routine. Pee cup, pee, dip, wait, negative, smile, try again.
Nine months of that routine, probably thirty tests bought in that time. Yeah, I tested a lot! This time was different. This time there was a faint line. So faint, and the fact I had so many negatives, I threw it out. Then I thought, let’s re-look at that again, just incase. I can still see my hand reaching back into the garbage to retrieve it. There it was. I couldn’t believe my eyes. So much so I stood in the bathroom looking at it from every single possible angle and light for at least fifteen minutes.
I kept saying to myself it doesn’t matter how faint a line is a line. Also, I reminded myself about the dreams I had been having. I was in such a daze, it was so surreal. I immediately went to my phone to text my friend, yes in the middle of the night. Come on now do you think I was going back to sleep? Best Christmas present ever!
About 14 weeks along an ultrasound detected my placenta was low so they needed to watch it. If it didn’t move I was told I would have to have a c-section. Mind you I’ve never had any operation at all in my life. Well, about two months after I’m told this I dreamt my Dr telling me it hadn’t moved (I’m in my 9th mth in my dream) and I would have to have a c-section. Yup. I sure did have a c-section. As they were monitoring my placenta monthly they found “soft markers” for Down Syndrome. That meant both Down Syndrome and non Down Syndrome children can have these markers. Immediately I responded with, “They are all going to go away.”
I am a huge believer in the power of attraction. I 100% believed those markers would go away and they did. On a disgusting note. After my doctor informed me I had those markers I had blood work done to see if I was high risk for Downs this pregnancy. It turned out I was so he called to tell me. Once he told me I was high risk ect. he then informed me I still had time to kill her. Are you kidding me? I’m 22 weeks along and I have THE RIGHT to kill my baby. Who gives me that right? I can kill my baby but not my annoying neighbor or a rapist. How is that ok??
I couldn’t even find words to say back at first, then I almost threw up. My response was of what you can imagine if you know me. To this day it makes me so very sick I had the choice to end my child’s life ONLY because of Down Syndrome. I shouldn’t have THAT right no matter WHAT the case is!
Back to my story…Once the markers disappeared my thoughts were this. If she were to have Downs; which by the way should be called Ups because they are a blessing from God; it would be a very mild case of Downs. I kept telling everyone this, how mild I felt it would be. How everything was going to be just great!! They were nervous, I was excited.
My Mom told me I need to read about Downs and all the bad things that go along with it, you know to prepare myself. NO! I was prepared. The only things on line were bad and that was not in my plan for Riley.
Side note: When I would sit on my bed and look at Riley’s name painted on the wall I felt that something was a little off. I felt like nothing was wrong, but something wasn’t right. I just blew it off as my hormones. How neat I knew she was special before I even met her.
Thirty-six weeks and six days along…. Monday, August 15, 2011 early afternoon my ultrasound detects my amnionic fluid is pretty low and she likely needed to come that day! So… there I sat in one part of the hospital waiting to be told by my Dr to go over to labor and delivery.
I’m by myself chatting on Facebook and texting as I walk over to labor and delivery. I tell Brett to wait for me to call him back before he leaves work to head to the hospital incase they decide it’s not time yet.
Yup… It’s happening! Calling Brett to say come on… Posting on Facebook because I’m addicted and it’s fun! I love being in touch with everyone.
The nurse gets me ready as they wait for Brett to arrive. Now, it’s time!
The trip to the OR seemed like such a long ride, but finally we got there. Instantly about five different people start working on me all at once, prepping me. That spinal was WAY different than the two epidurals I had with my other two girls.
I’m strapped and drugged and in comes Brett. Slice, cut, pull, and she is here!!!!
I do not remember being wheeled back to my recovery room I was so heavily drugged. I DO remember my poor husband coming into the room crying.
He informs me the NICU head doctor just told him Riley has Downs. Wait, let me re-phrase this. He wasn’t told by this doctor he was smashed through the floor and had concrete dumped on him! Apparently he was admiring Riley through the glass as they were bathing her ect. and this doctor comes up to Brett and says “You’re aware of her condition right?” REALLY? I was so angry the head doctor of the NICU did this to my husband! That’s how you tell someone this? Separate from their spouse and so abruptly and cold. Is she aware of HER condition? The fact she has a sensitivity chip missing! Brett had forgotten I was high risk and there was still a chance Riley could have it.
I remember being angry and upset for Brett. I told him to stop crying because the girls were coming in and I didn’t want to worry them. He couldn’t. They told us this apart… and I was still so drugged I could hardly even hold Riley at this point. Our two younger girls were scared and confused because of how everyone was acting. I remember I was sitting there smiling.
As I looked down at my precious baby I couldn’t see anything at all different about her. She was perfect from head to toe.
That horrible doctor who knocked my husband through the floor would not bring me my child! I delivered her at 5:25 PM and it wasn’t until after 2:00 AM a nurse brought me Riley. That wicked spinal took HOURS to wear off so I couldn’t drag myself down there to get her myself.
I sent Brett home at 10:00 PM because he needed sleep and I wanted him fresh in the morning for the girls. All I was doing anyway was calling the nursery every 30 minutes asking for my child.
She wasn’t eating. Well no crap! She was just born, tired and wanted her mother! I kept telling the nurses to tell that Dr to bring her to me so I can feed my baby. That doctor just never brought her to me. Finally, on my 2:00 AM call the nurse who answered the phone said she was bringing me Riley. The head doctor left and this nurse wanted me to have my child.
About 10:00 AM I’m told they hear a murmur in Riley’s heart and it could be a hole. After crying for about 45 seconds I said she is going to be just fine. I cried through them telling me how Downs children are known to have heart defects. Blab blab blab. Not listening I’m not listening. Later that day, which seemed like forever, I am told around 6:00 PM the tests show it’s a normal murmur and her heart is just fine.
(breathe Jen breathe)
The next morning they took her from me, again. This time she was admitted to the NICU. She hadn’t truly pooped yet. I walk down to the NICU with my mother-in-law to find out what’s going on. Brett and the girls weren’t there yet.
They inform me how some Downs infants have bowl problems and she may need an operation if she didn’t poop soon. Once the operation took place it would be weeks before we could really start to feed her so she may be in there a while. Again, I cry as they tell me this. I’m not listening. I can’t hear you, rainbows and butterflies. I look up and say how she is going to poop and will not need an operation. Two hours later, she pooped! I was told she needed to stay in the NICU until we go home with her, but we can start feeding her in about 12 hours I believe it was.
That was such a long day. That night my mother-in-law surprised me and snuck back into the hospital to sleep in my room with me. She knew I was upset Riley wasn’t in my room anymore. That was Angelic of her to do that. The woman has Lupus and slept in a chair so I wasn’t alone. She did that two nights for me!
The next few days were a blur. Many hours spent in the NICU trying to get Riley to drink some breast milk so she could go home.
During these days I remember the looks on everyone’s faces. So nervous. I smiled and focused on “all will be fine”. Don’t get me wrong I had plenty of “cry-water” moments, balling my eyes out because I didn’t fit in that tiny little NICU crib she was in.