We had an appointment today with Charlie's cardiologist. He works at KU Med but comes to Topeka on Thursdays for appointments. After checking Charlie thoroughly out he said "I couldn't be happier with how he is doing." I have to agree with him. Everyday Charlie gets stronger, bigger, and more aware. He loves to stare up at me and has been very smiley for the last few weeks. He started smiling a few weeks ago, but I always thought it was a fluke. Now I can get him to smile and even laugh a little with certain phrases or sounds. He likes when I meow like a kitty cat, or call him a little stinker. He also smiles at Steve and Marley. Marley says boogity, boogity, boo and he seems to think that is pretty smile worthy. Yesterday marked his 6 week birthday and he slept through the night for the first time. My mom said, after looking through my baby book, that I slept through the night for the first time at exactly 6 weeks too. Like mother, like son, I guess. So far Charlie is meeting and exceeding all of his milestones. He is able to follow movement, like a finger. He loves looking at faces and patterns, and anything on the ceiling. He can lift his head a little and move it from side to side when laying on his belly. He is also starting to grasp things. Yesterday when his pacifier fell out, down by his belly he reached down and grabbed ahold of it and put it up by his mouth. He did not get it in his mouth, but he had the right idea. He did this twice in a row. So far it looks like Charlie is not only on schedule but ahead of schedule.
I can see the love these two have for each other already. Marley refers to Charlie as Char Char in the most endearing tone.
I bought this little onesie for Charlie before he was born. I've always had a thing for peapods. The little hat was knitted by somebody who had a child in the hospital at Children's Mercy. It is a common thing around there to pass the time away. Sometimes women would come around with boxes full of the cutest knitted things. While we were there we were given multiple knitted hats in different sizes and colors and a little hooded sweater.
We had highs in the mid-50's today, so we decided to take a walk as a family and get Charlie his first breath of fresh air, besides going to and from the car approximately 5 times before and once in a helicopter. We got our warm clothes on and I strapped Charlie to me in a fabulous baby wrap/sling/carrier that I had purchased handmade from a mother on Etsy.com He always falls right to sleep in it. I think he feels like he is in the womb again.
We walked through our neighborhood, which is always a pleasure, living in a Victorian neighborhood. I even explained to Marley what the horse posts were in front of some of the houses, and how, many years ago when people used horses for transportation they would hitch their horses up to those very posts when they went into their homes. I carried Charlie on the front of me the whole way, and Marley walked part of the way and rode on Steve's shoulders part of the way. Especially when I told her the cat rustling in the bushes up ahead was waiting to pounce on us. She didn't want down until we were well past that Siamese cat, and he lived up to my story, almost. He poked his head out, crouched down, and stared at us like he was thinking about pouncing.
About half way through our walk we saw a Life Flight helicopter on their way to the hospital to pick somebody up. We watched as it was landing at the hospital a few blocks away. It brought back lots of memories of Charlie's ride to Children's Mercy. That night, one month ago, as Charlie was being flown away, clinging onto life we watched as the helicopter fired up and took flight, with our two day old son aboard. It was very , very cold that night, and we stood there a good 15 minutes as they boarded, got settled, and then actually lifted off. I was already numb emotionally and the cold left me numb physically as well. I kept thinking my tears were going to freeze on my face. I now knew a little bit about what the family of the person being life-flighted today must be feeling at that very moment. The helicopter was just taking off to transport the patient to their new destination as we arrived back at our house.
When we got home we brought the sidewalk chalk outside and graffitied the front sidewalk. I took a few photos of Charlie after we got home, with his stocking cap still on, and then I took some photos of Marley being totally goofy out on the front sidewalk. I'm not exactly sure what she was doing, but it was entertaining to say the least.
We had an appointment with Charlie's primary care physician in Topeka this morning, and I am proud to say he checks out great. We were able to remove his feeding tube, leaving him free at last from wires, tubes, IV's, catheters, tape etc. I will post a photo at the end of the photos I took of Charlie today (sporting his new tube free look) of just how hooked up he was just a few short weeks ago.
Charlie all hooked up after open heart surgery, just two weeks ago.
Welcome friends and family to my blog about two of my most favorite people in the world, Marley and Charlie. It is here that I plan on journaling, adding photos, and sharing my adventures in motherhood. Marley, my first born, just turned three. She has a zest for life and is a little firecracker, exuding personality, spunk and charm. She is very excited to be a big sister to her new little brother Charlie. Charlie is my new addition. He came into this world fast and furious, with the most perfect birth. You can view some of that here.
We had Charlie home for two days until we went for our routine 2 day exam with my midwife and mentioned his respiration had been a little quick. She sent us on to the pediatrician whom we had seen the day before, and he sent us on to the NICU at the hospital. By that evening our world had been turned upside down when it was discovered that Charlie had a heart condition, an interrupted aortic arch , and he was being life-flighted to Children's Mercy Hospital in Kansas City barely clinging onto life. Long story, shortened, they brought Charlie backed from the brink of death, and he underwent open heart surgery on New Year's Eve, when he was just two weeks old. While there he underwent some chromosomal testing and it was discovered that Charlie has DiGeorge Syndrome. That means the road that lies ahead for us is uncertain, with DiGeorge Syndrome the severity varies so greatly, ranging from not really even knowing you have it to more serious complications like greater risk for infections due to a low immune system as well as a great range in cognitive abilities. We have no choice but to play the waiting game to see how Charlie will be affected by DiGeorge, but regardless I couldn't love him more if I tried and we are not afraid what the future holds for this little guy, he has already touched the lives of many and left a great mark on the world and he is only 4 weeks old. I know he will do great things.
As of now we are all back home and doing well. We are adjusting to our new lives with two children. Most days are an adventure, but each passing day gets a little easier. And with lots of support from friends and family we are doing just peachy.