The first 72 hours with Molly Paige...

After five hours of labor and delivering at thirty five weeks, I remember the momment I saw my new baby girl. She was so small and I was in so much shock sitting here holding my baby a day before Thanksgiving when she was to arrive New Years Eve. When I looked at her I kept thinking that she didn't look like most newborns I have ever seen. But also I have never seen a premature child so I dismissed the thought. She also seemed to not cry a lot, more like whimpers. I made a comment, but everyone in the delivery room acted like this was perfectly normal. The selfish thought did run through my head of "Yes, I got a quite baby! Thank god!!!" When they took Molly away a nurse gave me something to fall asleep and all I could do is think, at least she is here and healthy.


The next day I awoke with the hospital room empty. I went out to see my daughter in the hospitals NICU and saw my husband and father in the room with Molly and the doctor. When I came in he smiled lightly and said that everything on my daughter looked good, her lungs and heart were great, and I will never forget this "and well, she might have Down syndrome. We took a FISH test and the results should be here in a week...." and turned and walked away. We were all in shock. I couldn't believe it, my whole pregnancy they told me how she always looked perfect, strong heart beat, measured beautifully, gained the perfect amount of weight, no risk for anything, and now she is here five weeks early with tons of tubes coming out of her and she might have a disability! Even though me and my whole family have a lot of experience with people with special needs (since at the time I was a Para-professional for special needs students at a high school) it was still hard to grasp. You never want your child to struggle, or feel what its like to be different, and most of all have any medical problems. I tried tracking down the doctor again wondering why he felt this diagnoses could be true. After almost two hours we stopped him (like he was avoiding us at all cost) and asked why he felt this way. He stated "Well she has the line across her palm, some webbed toeing, and the point on the ears. I am only fifty percent sure she might be." Then took off again without letting us ask anymore questions. So when my friends, family, and co-workers arrived the first thing I would ask everyone is if they saw the Down Syndrome traits. Everyone would reassure me that she looked fine and I shouldn't worry. My co-workers even reminded me that a couple times in my pregnancy how I expressed the thought of what if my daughter had a disability, but everyone would say "It'll be fine, its just in your face all the time." Now I am wondering if those were gut feelings I had all along, but kept reassuring myself fifty percent is fifty percent so there was a huge chunk that could be she was fine. So I kept talking myself out of the idea that it could possibly be true.


The second day was Thanksgiving. I remember watching the Macy's day parade on the little TV in the hospital room and tearing up. I just kept wishing I could watch it with my daughter in my arms and feel truely thankful. But I tried to be as positive as possible and kept going "we'll get out of this hospital soon. It won't be like this forever...'' The nurses kept trying to tell me every reason that they felt Molly didn't have Down Syndrome. Even when I wasn't asking any questions about the matter. Maybe because they thought it would make me feel better I'm still not sure. But it didn't make me feel better, it just kept it in my head. This wasn't in my plan. I had this four pound baby laying there with an NG tube sticking out of her nose because she is to weak to eat from a bottle, a light shining on her from Jaundice, wires and patches everywhere, and her poor little frail arms bruised and drained from all the the blood draws and IV's. All I wanted to do is be like any normal new mom, breast feed and bond with my new baby. Except it was hard to be able to cuddle with all the machines let alone she was being tested on so much I didn't really get to hold her. And at this hospital they said there was a good chance I would never get to breast feed Molly so a tiny dropper was the only way I could. On top of everything you have nurses that have to be in the room and help with everything. I was scared and longed to be the one to take care of my child. Even to the point I tried to jump in and change a diaper when they would allow me. Nothings worse then feeling like you need permission on your own child. And I was scared Molly would get use to the nurses and not recoginize me as her mother. It literally started killing me inside. I tried hiding my melt downs from everyone, but sometimes they would come out and I would be so embarrsed. I felt like a basket case.
That night when me and my mom were in the NICU there was a baby who came in. I asked the nurse if the baby was just born and she said "No, we give the moms a break from the babies if they need it." I looked at Molly (and I can't bring this up without crying to this day) and said "So all that mother wants is a break from her baby, and all I want to do is be able to hold mine." The two nurses in the room and my mom starting crying. The older nurse came over and said "I think you need time with your baby." She went over and almost tripped on a wire and almost dropped Molly because of everything stuck to her. It scared the crap out of me and my mom, but at least I got to hold her for about ten minutes until she had to go back under the light. It was horrible I just keep thinking how long is this going to go on and could it get any worse...


On my third day at the hospital I was being released, but Molly had to stay in until they got her to a proper weight and she could feed with a bottle. Strangly enough all the nurses seemed to be overly friendly and nice to me (even to the point they called the hospital masseuse in on a holiday to give me my complimentry massage). I felt like they were more about making me happy then they were about my medical well being (for example them not finding the extra placenta in me till thirty six days later, which should have never sat that long). I guess it was because they were trying to keep me happy till they dropped one of the worst news of my life....
We had a nurse come in to let us know Molly would have to stay in the hospital since she was premature and set up a room I could stay in while she was admitted. She told us I just needed to have a shot given to me and I could go. So my husband and me sat and discussed if we were going to go to his brothers to have a late Thanksgiving dinner. About three hours go by and we haven't seen or heard from the nurse. My husband grabs a nurse in the hallway asking when they were going to release me. She leaves, comes back thirty minutes later, and says our nurse is on lunch and she'll administer it after. A little annoyed we waited patiently until they decided to attend to us. My husband's boss calls and says she is in the area and would love to stop by and give us a gift. So we told her to come up and keep us entertained since the nursing staff seemed to be dragging their feet, or what we found later really was them stalling on purpose. After I opened one present the nurse comes in with a portable phone in hand saying it was the doctor on the phone for me. She then turns to my husband and boss stating anxiously that its about the mortality of our child. I picked up the reciever and the words I heard was "your baby has a hole in her heart. She is going to be transportted down to Aurora's Children's Hospital within the hour in an ambulence. If you would like to ride with her you can." My stomach sank, I felt like I was in a daze. I don't even remember telling my husband the news at all, just that I blanked out and then he was holding me crying. All of the sudden the nurse who is suppose to give me my shot shoots in, gives me the shot and hands me a bunch of paper work and says "I'm sorry." I was so lost, my what was suppose to be healthy baby now is even sicker and I have no clue what to do or say. On top of it, the doctor felt he couldn't tell us in person and that phone call to me was a very terrible cold way to release this news. I felt my body shake and this weird outter body feeling, like my soul accidently was stuck in someone elses body or even life. This wasn't apart of my plan, and now I have to be strong for my family and my baby, but I wasn't sure how to do that.
When I finally came to, I went in the NICU area where all the nurses were hovering around my baby. I saw they pulled her oxygen off and the nurses said "Children's Hospital told us too, were not sure what their thinking, but they should know what there talking about." I freaked, I am trusting these people with my kid and I wasn't sure who to believe and what was right, so we all sat there and watched Molly's oxygen levels until they arrived. When the ambulence finally came the people were very nice and assured me Molly was just fine. My husband, mom, mom's boyfriend, and brother in law all rode up in a seperate car since there wasn't enough room in the ambulence. Scared, crying, and feeling very alone the paramedics did everything they could to make things not so bad. They even let me choose the radio station to listen to on the way up. The driver was trying to get my mind off my baby in this huge plastic cyclinder with no oxygen on in the back. It was hard enough for me to hold her next to the bed, how was caring her almost fifty minutes away in a car going to be like? But everything went smoothly and for some reason I kind of felt like I could breathe again. Right when we came in the NICU staff and nurses greeted us warmly and professionally. They all surrounded Molly while my husband and me broke down again. The lactation nurse was so kind and took us around the hospital while they did their checks and stats. She even gave me the hope that I would be able to breast feed Molly (which I did get too for a bit) and also that this was horrible, but it would get better. The doctors came over and talked to us and said she would remain on the G-Tube with no oxygen and that they wanted her to get stronger and bigger before we talked about open heart surgery. We asked when did they find the hole in Molly's heart and the doctors said "About an hour after she was born. Why? Were you not informed on this?" Me and my husband were shocked, we were told from the other hospital how she was fine and great even though she apparently wasn't and kept it from us for three days! It angered me to know how they treated every situtation, and felt lying was helping. Thank goodness I felt comfort and hope at this hospital. They actually felt the best for my family was honesty about Molly's medical problems, not telling us what we wanted to hear, not giving us set answers unless they were one hundred percent positive, finding realistic solutions, and actually told us everything in person. I owe everything to Children's Hospital and for all they have done and will do with Molly. I am just glad the other hospital transferred us or I am not sure what would have happened with my baby.

The FISH test did finally get the confirmed diagnoses a couple days later that Molly has the rarest form of Down Syndrome called Robertsonian translocation. I'm not sure how we would have handled the news at the other hospital expectly since they seemed uncomfertable with it, but Children's was perfect. We had two genetic doctors and a main nurse who told us the news and sat down and gave us the proper information. The genetic doctors were funny and tried to make eveything light and reassure us that this was a great thing, expectly with all the new things in the medical fields these days. They had a couple of doctors in the hospital with children that had Down Syndrome and were willing to talk to us. Also they contacted the Mile High Down Syndrome Association (MHDSA) so we could meet new people in the community. I still think the coolest thing is how everyone congradulates you on being a parent of a child with Down Syndrome. It really has made the experience easier and reminds you that it isn't the end of the world, just a begining of a new exciting chapter.... which it has and I wouldn't trade for anything else in the world! I love you Molly Paige, my diamond in the rough <3