Down Syndrome

imageMy Son, Big-C, has Down Syndrome

My husband and I were expecting our second son. I was pregnant and enjoying my pregnancy. This pregnancy was different from my last in that my leg cramps at night were so much worse, I wasn’t able to rest as much ( I was chasing my first born around), and I wasn’t reading all the what to expect when you’re expecting books. I had just done this two years ago, I couldn’t have forgotten that much. In many ways is was the same, we were expecting a boy and this time around we were planning for a C-section since that is how my first entered the world.

Little did we know our Big-C had a different plan. He decided to send me into labor 4 days prior to our planned C-section. SURPRISE! My parents, who were going to be home from their Mexico vacation at the time of our planned C-section, were still out of the country. We had to call in our emergency-in-town back-up to take care of D-Man (our first born) until grandparents could arrive from 2 hours away. My labor progressed very quickly and the contractions were 5 minutes apart within 1 hour.

We arrived at the ER, where I swear the intake lady could not have moved slower. Got up to labor/delivery and luckily my MD was on call, but they still needed an anesthesiologist. One did show up after my water broke and my urge to push was near impossible to resist. Everyone thanked him for coming, I being quite snarky at that point, said that he could have gotten there faster.




Emergency C-Section #2 finally commenced.  My husband was by my side while the drugs took effect and we began to get Big-C into this big world. Thank goodness he was there, I tend to panic when the epidural makes me feel like I can’t take a full breath. Then I heard it, Big-C let out a good scream and I think he might have been peeing all over too! Big-C was born a red head. SURPRISE! We have very few red heads in our family, but here he was and he was perfect.

They got him cleaned up, while I got stitched up and we rolled back to our room. I tried to feed him, but had a little trouble latching. I wasn’t worried I had the same trouble with our first. They wanted to let me rest and give Bid-C a good once over.

When Things Started to be Different

The husband and I rested and when I awoke someone was updating my board in the room with my new nurse’s name and my son was nowhere to be found. I asked her where he was and she said in the special needs nursery where they were monitoring him….SURPRISE! What did he need monitoring for?  He was having trouble keeping his oxygen levels up…

An excruciating time later (most likely just a couple minutes) a doctor entered, not my son. She had that look, I know that look, I work in a hospital, I don’t like being on this side of that look.  This doctor was a pediatrician, not ours but one in our group that I recognized that most likely was on for the weekend. She was the one that told us our son exhibited many signs of having Down syndrome. SURPRISE! She went through the list of them I was in shock and only half listening. I’m sure she said stuff like: reduced muscle tone (hypotonia), upward slanted eyes with folds of skin at the inner corners (epicanthal folds), one crease in the palm of a hand (simian crease), greater space between the 1st and 2nd toes (sandal gap), and heart defect (he has a balanced AV canal defect).

After she left my husband and I just held each other and cried. What does this mean for us, for our son, for our family, for our future, for his future. Too many questions and too many emotions were coming at me at once. I ended up mourning the loss of the child I thought I was going to have for awhile after Big-C was diagnosed. As I mourned that loss, I fell in love with the boy that I did have.

Big-C was born with red hair, blue eyes, Down syndrome and a heart defect.

What Does This Mean for Us?

He did not have the energy to breast feed, he could latch on but just wasn’t strong enough to suckle for nutrition. He needed a nasal-gastric tube to supplement his bottle feeds. I was able to pump and we also fortified the breast milk to give him a little bit extra. He spent a total of 3 weeks in two different Neonatal Intensive Care Units. We transferred to the second one because they had pediatric cardiologists on staff.

We went home without oxygen, without an apnea monitor, and without a feeding tube. We felt almost normal. Except that our baby turned bluish when he slept, we had a bunch more follow up visits than the typical well-baby-checks, and we had one medicine to assist his heart that he would take until we had his open heart surgery.
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This is a brief story of how we found out we were to raise a child with Designer Genes.

FUN HAPPINESS AND LIFE LESSON: I recovered from my C-section super fast because of all the walking to and from the NICU.

SPECIAL NEEDS PARENT ADVICE: When you are on a birthing floor and you see a new parent/grandparent obviously walking to the NICU or you see a new baby that has special needs with their family members always congratulate them on the birth of their child. It’s really not that important to find out what’s “wrong” but it is really important to the family to celebrate their newest member.

 

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