Thursday, January 14, 2016

All Patched Up

James is out of surgery and doing well! They gave him the good drugs, so he will sleep soundly tonight. There are a lot of wires and monitors, but they are planning to slowly remove them over the next 24-48 hours. Throughout the night, they are going to wean him off of his breathing machine and hopefully by tomorrow morning he will be able to breathe on his own. 

So how did the Surgery go? 

Really well. The surgeon said his VSD was very large but they were able to patch it without any issues AND  found nothing wrong with his valves. (YAY!) He will have an awesome battle scar down the length of his chest to show off to all of his friends someday!

And with that, Mom and Dad are signing off for the night after a VERY long day. 

And now we wait...

After a long morning with a hungry baby, he was taken back to the OR about 1:45. We just got our first update from the nurses. All of his lines are in place and they are beginning the procedure. 

Here are a few cute baby pics while we wait. 





4 Months Old!

Hey everybody!

I am 4 months old today! I am 9 pounds and 23 inches long. I like snuggles and my toy fish at Sissy's house. I'm finally starting to tolerate bath time, and I am getting good at going to bed at a decent time. 

Before I forget...I have to tell you about my brother, Rider. He's pretty cool, but he has his jealous moments...


That tie... 😍


Ok.. Enough of this

Eyyyy... 😉

Until next time!
-J


Wednesday, January 13, 2016

Welcome!

Hi Everyone!

Thanks for following us to our new blogging home! We will be posting updates about everything going on next week here. If you enter your email address on the side panel to the right, you will be notified when there are new posts.

Talk to you soon,
A, L, & J

Monday, January 11, 2016

Normal

I have been moved to write this update several times over the last couple of months, but I haven’t been able to actually sit down and do it. So what stopped me?
Many of you have told me you were impressed by how positive I was in the first few posts. The truth is I haven’t always felt positive over the last few months. Having James home from the hospital by myself, having Alex back at work full time, it was hard. There is no other way to describe it. 
I have spent the past 3 months trying to find this mysterious thing commonly referred to as “normal”. I’ve found myself hearing/using that word a LOT lately.
Doctor XYZ: “What does a normal day look like from James”
Therapist: “The normal range for X developmental milestone is….”
Me: “How is that different from a normal baby…?””
etc.
What I have to keep reminding myself is that “normal” doesn’t exist. James is writing his own story. Yes, we can work to get him on a schedule. Yes, there will be days that are more typical than others. But expending energy trying to figure out how he compares to “normal” is a waste of time and could be a major point of stress if I let it be.
So what have we been up to?
Over the past 13 Weeks, we have gone to 12 doctors’ appointments, and had 12 therapist visits. We will average 1 appointment a week with various specialists through his first year. At that point, hopefully, we will be able to go longer in between visits.
Why so many appointments?
Some were typical pediatrician appointments, some were following up from his hospital stay, some were introductory to help us understand his diagnosis, and some were to prepare us for his upcoming heart surgery.
When is he having his heart surgery?
This is the (late) update that is going to get me in the most trouble with the public… James is having his heart surgery next Tuesday(1/19). We found out the week before Christmas that the cardiologist wanted to move ahead with the surgery earlier than expected. Everything is fine, but at the slow rate that he is growing, they feel it would be more beneficial to go ahead and fix his heart now rather than wait.
Why is he having surgery?
James has what is called a Large VSD (Ventricular Septal Defect).For those of you who know someone with this defect, it is fairly common. His specific hole is not correcting itself like some others may have, and that is why we are having it surgically closed.
You can read more about VSD  here.

We appreciate all of the support and kind words from all of you over the past several months. Keep the prayers and good thoughts coming! I truly believe that they are helping.