Pages

Thursday, June 2, 2016

Fight vs. Flight

It has been a while since I took the time to sit down and update all of you. The last few months have been chaotic  wonderful challenging busy interesting. 

James is over 8 months old now. He loves oatmeal and squash. He's bursting with personality. He enjoys bouncing in his jumper seat, and he would play peek-a-boo (Wheres James?!?) for hours if he could find someone willing to participate for that long. 

Today is our 45th day in a hospital. This is his second hospital stay since our last update and his 5th visit overall. After he recovered from RSV in February, he picked up human metapneumovirus and a touch of pneumonia in April. Now, he has another virus that has landed us back on our usual floor at Cooks. He requires regular breathing treatments and oxygen support when he's sleeping. But, he is taking it all like a champ!



He smiles even when he's obviously uncomfortable. He laughs even after we suction all of the junk out of his brain nose.  He plays even when he's hooked up to tubes and monitors. In short... James is taking all of this way better than his parents are. 

I just read an article about anxiety and how it relates to our natural fight or flight responses. Tonight I have my own version of that theory. Tonight  I am too tied to fight. Tonight I am going to sit and fantasize about taking a flight to an all-inclusive beach resort that serves pretty drinks with umbrellas. 



P.S. We are currently reevaluating James' daycare situation. While we LOVE his teachers, his immune system is just not ready for a classroom setting. If any of our friends and family in our area know someone that Is keeping a small number of kids at home, or might be willing to make some extra money hanging out with an adorable baby during the week, please let me know! You know where to find us! 

Tuesday, February 16, 2016

See you in 6 months!

"See you in 6 months!".....Is the best news we've heard in a long time.

It's also what the Cardiologist said at the end of James' appointment yesterday! We are slowly dropping specialists off of our list of monthly follow ups, and that makes Mommy's life MUCH easier.

After delaying several times, I'm sure our day care center was starting to think that this day would never come, but yesterday was also James' first day  half-day of day care. His teachers said he was wonderful and they are already fighting over who gets to hold him.

Until next time,
A, L, & J

Monday, February 8, 2016

Here we go again.

I noticed an increase in traffic on the blog this week. I assume that traffic is from people hoping for the updates that are quite overdue.

Yes... we are back at Cook's.

How did that happen?! 

It seems we picked up a cold before we left the hospital after his surgery. But not just any cold. We got the full blown version of RSV.

To make a long story short, we had been monitoring him all week until EARLY Saturday morning. He was obviously working really hard to breathe, so we took him to the ER at Cook's. He had very low oxygen levels and was admitted. He has been on oxygen and fluids until today. This morning we turned off his fluids and the oxygen. We are going to see how he does today and tonight, and hopefully we will get to go back home tomorrow morning.

With any luck, we will get to STAY home this time. For good.

Crossing all of our fingers and toes.

-A, L, and J



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.