Sunday, March 3, 2013

Baby I'm Amazed By You!....

In the first few days after Carl's birth, we listened to doctors and professionals tell us all the obstacles they seemed sure we were going to face.  I remember feeling overwhelmed, defeated, scared, angry and sad.  I held my little boy in my arms and thought, he already has so much stacked against him. Low muscle tone, delayed learning, well according to those darling doctors, delayed everything.

While at CHOP, some of the doctors got worried Carl wasn't eating enough.  They assumed, because of his diagnosis that Carl was having trouble swallowing and taking in food.  Babies with Down syndrome are known to be poor eaters. Thank God one of our awesome nurses gave me a heads up, because next thing I knew, the nurse practitioner came up to us and said that she wanted to give my baby a feeding tube.  Mind you, this was a day after we discovered there was nothing wrong with his heart and I was really ready to get out of there and go home.  "No, no, no," I told her. I honestly didn't know how much he was supposed to be taking in at that point.  He was sleeping a lot, plus I was trying to get him to nurse. I did know my boy could eat and there was no way he needed a feeding tube.

The nurse practitioner asked, "what scares you, the procedure to put it in?" Um, yes! I thought in my head, how would she like it if I shoved a plastic tube down her throat? To make a long story short.... mommy won.... no tube.... and Carl ate... a lot.  I made sure my little man took in more then they  wanted him to. By the time they made the rounds the next morning, the doctors couldn't believe how much he had eaten.  Take that!

It was a good lesson learned.  People are going to under estimate my son just because he has an extra chromosome. Even I did in the very beginning, but he continues to prove us all wrong.  At his 4 month check-up his pediatrician said his head and neck control was better than most infants his age.  Not too shabby for kiddo who's supposed to have low muscle tone.  He also continues to eat, like crazy.  He'll be 5 months in a couple weeks and he's starting to wear his 9 month clothing.  He babbles and smiles, but what amazes me the most are his fine motor skills.  He can already pass a toy from one hand to another.

I know, I'm really lucky.  A lot of moms with kids with Ds, despite their best efforts are not having the success that my son is.  But, I learned, I need to hold him to higher standards.

Here's some pictures of Carl playing with one of his toys.


  1. Sara, thank you so much for sharing your story about Carl. When our youngest granddaughter was born with CHD it was nothing we ever expected to go through, but God is good! We have learned so much and have grown in grace and wisdom and in ways we never thought possible. Life has so many unexpected roads to travel and our journey can sometimes be challenging. However, when we embrace our journey, then we open ourselves to so many new possibilities! Carl is a special gift from above who was knit in your womb for God's purpose. God bless you and your family. Stephanie

  2. Oh Sara, I so know where you are coming from. It is hard not to have low expectations in the beginning when there is so much negative information out there. Keep your expectations high, that little guy will continue to amaze you each and every day!

  3. Hes super cute :).. I feel the same way. My baby is 9 months old& he has down syndrome. no heart problems or anything. He plays plenty and is very smart. He also pays attention to everything and does a lot of things on his own. Hes learned to sit up and feed himself alone. All his therapists are so akmazed with him and his strength as well. I dont believe my baby has a single weak bone in his body and I feel so luckybto be blessed with such a little angel..