It Could Be Worse

If you know me well, you know I watch a fair amount of tv. One of my weekly shows is Private Practice on ABC. It of course is about doctors and their medical practice and their personal lives that tend to involve a little too much falling into bed with random people. Anyway, watching last week's season finale gave me a pretty good perspective.

I've never really asked "WHY". Why is James the way he is? Why was he born early? Why did he have a rare complication of being intubated? Why did he develop Cerebral Palsy without have a brain bleed? Why are his lungs so weak? Why Why Why? I feel like I just have to accept it because if I keep asking why I'll only dwell on the bad things and keeping wondering WHY when I could be spending that time looking for new therapies or stretching James or reading books with him or just cuddling with him.  Still there are times I wonder if life will get easier for my baby boy. If he'll ever walk by himself, talk on his own, sit by himself, know how much I really love him.

This past week on Private Practice one of the main characters had a baby. Her baby was born without a brain. Within minutes of her baby being delivered he started having problems breathing and she handed him over to doctors to harvest his organs to go to other tiny babies so they could live. She got to hold her baby boy for minutes, and he was gone.

I get to give my son medicine every day to help him breathe. I get to give him more medicine so he doesn't gag and aspirate his food. I get to give him even more medicine to relax his muscles. I get to stretch his tight tight muscles and hear him cry because it's painful. I get to watch him lay on a bed in an OR about to have someone take a scalpal to him in hopes it'll make things better. It could be worse.

But you know what else I get to do.  I get to hold my baby boy every day. I get to see his gorgeous smile. I get to cuddle with him before his nap every day. I get to see the joy on his face when his favorite movie comes on and hear him laugh. What a beautiful sound. I get to watch him laugh at the silly things his little brother does.

It could be worse. I could have a son I couldn't take care of my own. I could have a son who has a trach and can't vocalize at all and needs a ventilator to live. I could have a son who's in pain every day all day. I could have a son who has no quality of life. I could've lost my baby boy before I even got to know him.

I have an amazing little boy. He loves me and I love him. He can smile at me and laugh. He loves to read books and be tickled. He doesn't like new people, but he loves to cuddle. This little boy is my life and I thank God every day that he kept my tiny baby alive and allowed me to get to know him and love him. It could be so much worse.

Elliot

I don't talk much about Elliot on here, so I figured that since this is our family blog, I'd dedicate today's blog to him!

Elliot is a typical 2 year old boy. He loves cars, cows, legos, playing outside, cuddling and Mickey Mouse. If you know Elliot at all, you know that he loves cows and once he sees one, he can't stop talking about them. He talks about them, he'll tell you what they say, and he'll tell you he is one. One of my favorite Elliot moments was when he was playing horsey with his dad. While on his dad's back and he looks at me and says "Mom, I'm a cow!" I said, "No, you're a cowboy." "No Mom, I'm a cow"
He just loves cows.

Elliot is just about 2 1/2 and what a fun age. All the normal milestones are new to us, since James doesn't meet the typical milestones. He talks a mile a minute in his own language and no one has a clue what he's saying. Every once in awhile we can pick a couple words like mom, daddy, cow, car, Mickey and shoes.

Being pregnant with Elliot wasn't the easiest thing I've done, but I would do it again in heartbeat. Warning: if you're squeamish, stop reading here. One of the first things I had to do was get a cervical cerclage. The reason James was born premature is because I have and incompetent cervix, meaning that as the baby grows and gains weight, my cervix can't handle the weight and will start to funnel, thin, and dilate on it's own. So, a cervical cerclage it was. The plan was to give me spinal block but of course that didn't work so general anesthesia it was. When I woke up there was a substantial amount of pain that I wasn't expecting. All the procedure really is, is putting stitches (with super strong string) keeping my cervix closed. So I wasn't really expecting any pain, stitches aren't too big of  a deal. Well after resting for a couple of the days the pain went away and all was back to normal. Part of getting the cerclage was having an ultrasound before the procedure to verify dates and after the procedure to check the cerclage. So as planned we had an ultrasound at 14 weeks to check on the cerclage. Per our usual, something was amiss. There was an area behind the neck that was collecting extra fluid. That can be an indication of Down Syndrome, or other chromosomal abnormalities like Turner Syndrome or Edwards Syndrome. Most of you, I'm sure, are familiar with Down Syndrome. Turner Syndrome affects mostly girls and I believe they have some developmental delays and and are infertile. Edwards Syndrome, Trisomy 18, was the scariest. Most of these children don't survive the pregnancy and the ones that do-most die by their first birthday and they have extreme mental retardation. Trisomy 18 spent a little time in the news lately-Rick Santorum who was running for the Republican Party candidacy has a 3 year old daughter with Trisomy 18. All I have to say is AMAZING. She's beat so many odds by making it so far, but she does have many medical complications. Anyway after the ultrasound we were given some options. We could do nothing and see what happened or we could have an amniocentesis at15 weeks to have chromosome testing done.
I decided I needed to know and so for the next week I was on pins and needles. The amnio went well with no complications-odd sensation though. Then it was on to more waiting. I think it was about 2 weeks later that we got the results, they were normal.