The Baby Pants Adventure
I recently took Family Medical leave for about a month. I appreciate all the thoughts and love people showed me while I was off. People wanted to know why so maybe this will help me deal with it and get you updated on why.
Last Easter morning, my wife Sabrina woke me up at 3am and told me she was pregnant. This was quite a shock. We were 41 and didn’t believe it was likely to EVER happen. We had given up trying and become more distant with our friends who had children. Every time my wife would attend a baby shower, she would come home upset. I was so shocked, I said “Shut up and get back in bed. I will believe it when I hear it from a doctor.”
Not long after Sabrina’s doctor confirmed it. I was so happy. I always wanted to be a dad. They originally said November 28th would be the due date. I was excited and couldn’t wait for my parents to hold my child. We did expect there would be complications because of our advanced age and my wife’s health history.
We told the parents and family. My niece screamed. My in-laws wept. There was so much joy. We were contemplating how to tell the world. The first day she THOUGHT she was pregnant, she stopped us in Howell because “the baby wanted some bread sticks.” She kept saying, “It’s a boy.” She really wanted a boy. I said “how the F*** would you know?” I started reading books about how to be a better partner and started to buy in.
The joy soon turned to concern, as my wife got very sick. She was throwing up all the time. At one point she almost lost her job. A job she LOVES and loves her back. But she was vomiting all the time. I crafted a Star Wars puke bucket for her so she could puke while driving to Detroit. When she was interviewing for the job, they asked her if she had children and she said “just cats. I can’t have kids.” The people she was interviewing with laughed and said “well, a lot of people who work here said that and recently got pregnant.” I never thought much of that.
I was going to every Dr. appointment with Sabrina and snapping selfies of me and the “female medical illustrations.” Sabrina got a kick out of this and I know her doctors all loved me. She always asks Sabrina on follow ups where I am.
In her second trimester, her doctor recommended we take this chromosome test. So we did. It was on a Friday when Sabrina called me and said, “the doctor just called and said the baby is 95% likely to have Down Syndrome.” I was like “So, we can’t pick and chose our miracles.” She was very upset and said “it’s a girl.” She then said “I think I am more upset she’s a girl.” I laughed out loud. As soon as I hung up, I wept.
I was at my parents and walked in, my mom grabbed me and asked “what’s wrong, Joe?” I told her, “The baby has Down Syndrome.” Her facial expression didn’t change. She looked at me without blinking and said “so, you got me, Joe.” My mom is 70 and I said “for how long, mom?” I then, put on my tough face and went home. Not long after, my dad arrived at my house. He had tears in his eyes. “We’ll get through this.” He said with a broken voice. I was playing tough for the wife and told him we would talk later. This was the second time in my life I have seen my dad cry.
Sabrina and I talked and she told me the office gave her a termination date, if we wanted to choose that option. I was very upset when I heard that. They also had another test, an amniocentesis, where they stick a needle in the womb and draw out fluid to see if there are chromosomal abnormalities. Both of us were against this. When we saw the ultrasounds of our baby, she was moving all around. When the Dr. showed us where they would stick the needle, Nugget stuck her little head right there. We came to the conclusion, what does it matter? We could never live with ourselves if we chose to terminate the pregnency. That is what I kept calling it.”We are not losing our miracle.” We informed them of that and they reminded us of when we could terminate the pregnancy by. It was very disturbing how late they would take it. So, I started calling the baby Terminator 2. That lasted about a minute until Sabrina started calling her Nugget. Her first ultrasound picture looked like a chicken nugget to her.
I got a bit depressed for a while. Every morning when I woke up, I would rub Sabrina’s belly. After I found out about the Down Syndrome, I stopped doing it. I no longer wanted to make our pregnancy announcement. Would people think this is a punishment or something I deserved? Did I deserve this? Then, I thought about my friend Annie.
Annie used to listen to me on the afternoon. In 2009, she invited me to attend the Capital Area Down Syndrome’s Harvest Festival. I loved that she was such a fan so I went. While we were there, a few parents walked up and said “thanks for coming.” One parent pulled me aside and said “my daughter is the most loving girl in the world. She has a lot of health issues but I wouldn’t trade her if I could.” In all honesty, I was going to dance to show God, see, I am good guy. By the end of the night, I ended up thinking, “I would love a Down Syndrome child, if I had the chance.” Well… God heard me. I went to those dances 6 out of the next 7 years.
At appointment after appointment, it appeared our daughter DIDN’T have it. She didn’t have this small sign or that small sign. Eventually, we got our hopes up. Meanwhile, we kept reading about Down Syndrome stories. Then I met Kody Slaght from Kia of Lansing. Kody has a daughter with Down Syndrome and we talked for about 2 straight hours about how rewarding and magical his daughter was. I was in a really bad place. This guy helped pick me up and instilled a faith that I wasn’t going to regret it if she did have Down Syndrome.
I got my hopes way up there, probably bordering on denial. We ended up making our baby announcement video. We decided, just because she has Down Syndrome, doesn’t mean we should half ass it.
Not long before Nugget was born, Deb Hart said to me “Don’t you think you were being prepared for a daughter with Down Syndrome?” Deb was right and she was so amazing to Sabrina and me the entire pregnancy. She gave us one on one yoga classes and would NEVER take our money. She also got us a private session with Hillarie from Hilltop yoga. We told Hillarie when our due date was (December 3rd) and she said “no, no. You guys will be parents before then.” She knew us for about 5 seconds and she was right.
The following Thursday November 17th, Deb was off and I drove Sabrina’s car into work. I was going to get an oil change after work. I was working on the air and put my phone on silent. Well, a little before 8 I finally looked at my phone and see the missed calls and profanity laced text “ANSWER YOUR EFFING PHONE!” I called Sabrina and it was on. She was going to the hospital. She thought she was in labor. I put in some best of promos called the boss and he said “GO! GO NOW!” Deb was scheduled to have a vacation day the next day but still came in to cover our show. That is one bad ass partner.
I flew to the hospital and found Sabrina. She was in a back room. They said she was dilated 2 cm. We had planned on a C-Section because the baby was breeched. Sabrina was almost happy she would avoid those major labor pains. Well, someone didn’t get the memo because they called them Braxton Hicks contractions and sent us home. (WHAT!?) I know. I called the Dr. and told them but her office said “they’ll call us if they need us,” And they sent us home around 1pm.
Sabrina had a contraction app and was using this to see how far they were apart. She was writhing, screaming in pain on our couch when they hit. We sat there a few hours and she said “I think we need to go back in.” I kept telling her “they need to be 5 minutes apart.” Eventually, she got pissed and told me “WE ARE GOING IN!” There was no panic. Almost like slow motion, I calmly said, “grab a garbage bag in case your water breaks on the way there.” I don’t even know where that came from?
We drove the speed limit to the hospital. When we went to check in, they needed her ID and insurance info. She said “I just EFFING gave you this 5 hours ago!” They said they needed it again and I have never heard my wife talk to someone like that. We got back to our room and it was a storm. I remember looking at the clock at 7:30 when they told us she was fully dilated. “I EFFING told you” she said. I had to laugh because I was so scared. These doctors were moving fast and I saw some panic on their faces. I could hear nurses saying “why did they send them home?” I was bordering on panic. They gave me scrubs and said go wait here, and took me to a chair. I snapped a selfie of myself because I wanted to see how scared I looked. Then, in walks a labor room tour. A tour Sabrina and I were supposed to take that very day. The tour guide couldn’t believe it. The tour left and the doors opened up. “Come on back,” they said.
I walked into the room and there was Sabrina on the bed, all hooked up to her epidural. I was seated by her head and a curtain prevented me from seeing the surgery. My wife was getting all shifted around and wincing in pain. She said “sing Hallelujah for me.”
“I don’t know all the words.” I said. So, I started singing “Swing Life Away” by Rise Against (she later told me it was a perfect choice). The whole time I was singing, there was blood at my feet, I kept hearing horrible sounds. At one point I thought, “If I leave here with one of these girls, it will be a miracle.” I got to a point where I knew they had taken Phoenix out. The seconds passed and all I could hear was my voice, it seemed like forever before she yelled. I ended the song because I was so happy to hear her, I began to cry. Sabrina said “what’s wrong?”
I said “she’s here and she’s alive.” I never once prayed for her NOT to have Down Syndrome. All I ever asked for was “healthy baby, healthy mama.” My prayers were answered. She was 6 pounds 4 ounces and 19 and half inches long. After congratulating my wife on her heroism, they said “you can come see the baby.”
I was in shock like, what CAN I do? So, I walked over to Phoenix. My wife asked “does she have it?” I don’t think I said anything, just nodded. I could see it, clear as day. My wife’s eyes turned grey and tears fell. They put her in my arms and I carefully walked her over to mommy. My family was complete. I sang to my baby “you are my one and only.”
We went into another room where Sabrina attempted to breast feed and it seemed like Phoenix got it. Sabrina’s mom, dad, sister and niece were all there. My niece and mom came up to see her. It was awesome.
We finally made it to our room. I had been up since 4am. It was around midnight. The baby kept waking up, crying. Sabrina was unavailable to get up, just having the C section. I was up all night trying to soothe her. As soon as I fell asleep, the door would open. The baby would cry. It was maddening. I didn’t really sleep that night. I never remember hearing anyone say “she has Down Syndrome.” I was like, maybe they won’t notice.
They gave us our day but the next day they came and took Phoenix. She wasn’t eating and they needed to get a feeding tube in her. So, Phoenix was put in the Neonatal Intensive Care Unit or NICU. We were devastated having her taken from us. Later, the doctors came in and confirmed it was Down Syndrome. Phoenix would need sometime in the NICU to learn how to eat. After she was safely in the NICU, Sabrina and I slept the rest of that day. When I woke up, it was like a new adventure began.
The nurses in the NICU were pretty awesome, other than one old goat. They taught me some cool tricks and knew, this was daddy’s girl. I was very hands on. Sabrina and I spent a lot of time with our shirts off doing skin to skin contact with Phoenix. The nurses said “they are always naked back there.” The baby really responded to the skin to skin. They made her signs and treated her like any other baby. We would spend one week in the NICU before being released.
We waited awhile before telling everyone about the Down Syndrome but most people knew by looking at her. The day we were released, the hospital sat us down and gave us a rundown of what to expect in Nugget’s life. It wasn’t pretty. “She’ll never look like you, she will look more like Down Syndrome kids. She could develop Alzheimer’s by age 40.” It was a real horror show. It kick started a postpartum depression with my wife we are still dealing with. I really wish they wouldn’t have done this but I kept thinking, “my daughter will prove you wrong.” I thought about my friend Annie who is in her 50’s and showing no signs of slowing down. I thought about all those happy kids I saw dancing at those Down Syndrome dances and remembered that thing I said to God. “I could be a parent to a Down Syndrome kid.”
It really bugs me when people say “I’m sorry.” We aren’t. It really bugs me when people use the word “normal.” I am not even close to normal. I would freak if my kid were a Normy. I get a different experience than most. There are more twists to our story but I just wanted to share this so I can show it to her someday. There are no coincidences in life.
Health wise, we have avoided some major problems so far. Her white cell count is good. If
not she would get sick all the time. Her heart has a small murmur and there is a small hole in between the upper chambers. But, she doesn’t have a thyroid issue. These are very common with Down Syndrome kids. Her Doctor says she is big for a Down Syndrome baby. She has even hit some milestones way ahead of schedule.
Sometimes we don’t even see it, We just see our baby. We just wanted to share our story. So now, if they offer you a termination date you know it’s not worth it. You would be missing out on something pretty amazing. I wouldn’t change a thing. She is perfect. Our Phoenix will rise.
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