Tri-Somy 21. These were new words to me. I had never even known anyone with Down’s syndrome before. We were about to get a crash course! This was baby number 5 for me. I was a busy mom with a 7 year old son, 5 yo daughter, 3 year old daughter, and an 18 month old daughter. My baby wasn’t due until February (2009). This was going to be my closest gap between children. My homeschooling journey was just beginning and, so far, I was the only one learning. Like, how to keep toddlers busy during school time. Oh, and I forgot to mention, that our house was on the market with frequent showings to be ready for. This was my life as I waddled through my 5th pregnancy.
I Love Being Pregnant
Feeling this new little life inside my body is so amazing to me. I figured this transition would go about the same as the others. A fun newborn stage, mostly staying home, meals in the freezer, learning to function now with five children. One day, mid January, I couldn’t sleep. As a busy mom, I love my productive early mornings while littles are sleeping. Finally, I can concentrate without interruption. Quietly, I slipped out of bed and went downstairs to work on my craft/school room. I had many boxes already stacked up ready to store in the basement. Although I wasn’t exactly sure when we would be moving, it was so helpful getting every extra thing packed up and out of the way. After packing up a few boxes, I began to stack them together, and …noticed a contraction.
Overdoing it again
I was moving too much again. You’d think by this pregnancy, I would have learned not to overdo it, but it’s so hard to ignore those free moments you get. After a few more minutes, I went back to bed to get some more rest before the kids started to wake up. As I lay there, however, the contractions kept coming. Not fast or hard, but still there. I called my midwife an hour later to let her know. I knew what she would say. Keep resting. Despite my best efforts, he came 3 weeks and 1 day early.
A Mellow birth for a Mellow baby
It was a slow, mellow birth, and I started to feel like it was never going to really kick into gear. My mom and other children got bored waiting around and decided to hang out with some cousins for the day and come back in a few hours. I felt stuck between wanting labor to stop (since he wasn’t due yet) and wanting labor to progress. Finally, he arrived at 3:40 pm. My midwives had an oxygen tank available in case his lungs were still premature.
Is this Down’s syndrome?
As I lay there, dreamlike, and so thankful he was out, my midwife put him into my arms. I cradled him close and began to notice him. The first thing I noticed, was a bulge, about the size of an egg, in his umbilical cord. It was transparent and looked like intestines all curled up inside. Then I noticed his thumb. Or thumbs, rather. His right hand had two thumbs stuck together. I had never heard of “extra digits” before. His eyes seemed different as well, but I couldn’t quite put my finger on what. “Is this Down’s syndrome?” I asked my midwife. “We don’t know that,” she replied. (We all suspected Down’s syndrome, but we didn’t officially know until we got his results back from his DNA testing a few weeks later.)
Shock and Denial
My thoughts were racing. Everything in me screamed “No!” This can’t be my baby. I don’t want this baby. My baby is healthy… my baby looks normal. How could this be happening? My midwife gently took him and was doing his newborn exam when I heard her say, “Well, that works fine!” as she cleared away the meconium. Amidst a whirl of thoughts, I heard her mention that we would have to go in. He was stable, but would need a surgery to put his intestines inside. She wrapped his cord to keep it sterile. She had a foil blanket to keep him warm and called the hospital to let them know we were driving in. My older children were gone for the day and would miss the chance to meet their brand new little brother. It couldn’t be helped. Within the hour, we were headed to the hospital.
Bringing my Down’s syndrome baby to the ER
I can barely remember the drive there, sitting next to him so tiny in his carseat. They wheeled me in behind him, and got us in a room. He peed on the “peed”iatrician, and so we knew that worked as well. I remember the nurse asking me how I was doing and I told her I was thirsty. She proceeded to get me ready for an I.V. Thankfully my midwife noticed and stopped her from admitting me. I guess I should have been more direct and asked for a cup of water! Sheesh! It was such a whirlwind. My midwife then had to battle the staff to convince them to get me discharged. The doctor explained that our baby would need an immediate surgery which they could not do.
Everything was moving 500 miles per hour
They wanted to rush him by helicopter down to the University of Minnesota, a 45 minute drive. I wasn’t allowed to fly with him, and I was terrified to be separated from him. What if I couldn’t find the right baby when we got down there? I remember as I handed him over, the pilot commented, “Don’t worry. I’ll try to keep it under 500.” It’s too bad we didn’t know then that, being a Friday, and he was stable, he would not have surgery until Monday or even Tuesday.
Our new reality starts to sink in
As my husband and I drove down (and our midwives followed behind us), a swirl of thoughts flooded my mind. Would daddy love him? Could he accept him for who he is? I think this was my safe way of wondering… could I love him? Could I accept him for who he is? I know we talked on the way down, but the only thing I remember him saying is, “I don’t think God chose us (because we are special) to bless him. I think God chose him (because he is special) to bless us.”
Down’s syndrome in the medical system
All of my children have been born at home. I was very anti-doctor. My firstborn had had one ear infection that he had seen a doctor for. That was the only dr appointment we had ever needed. Terrified, I had no idea what to expect going in to the hospital and felt so intimidated. I am so thankful for the amazing support I had from my midwives. One midwife had stayed home to take care of laundry and inform my mother (when she returned with my children) what was going on. The other midwife was by my side every step of the way… (follow us on our journey in the next post)
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