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! 

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. 

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.

http://healthlibrary.epnet.com/GetContent.aspx?token=83ee77b6-5d7c-451c-b269-7f0bab6eb1f5&chunkiid=223520

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.

The Hungry Games: Mocking-James

This week we have had one goal: Make sure James is eating enough. 

James got to start eating Saturday afternoon. It was a tiny amount (10mL) just to make sure he could tolerate milk in his tummy. He did really well with small amounts, so Monday evening they started upping the minimum amount he was expected to eat. The plan was to add 10 mL at every other feeding until he reached 50 mL. He was doing well and the doctors thought he might be able to go home by mid week. That was until he was expected to eat more than 35 mL. Any more than that, and he was just too tired to finish eating. 


At that point on Tuesday morning, his doctor ordered an NG feeding tube to be put in so they could give him the remainder of his meals through the tube. For those of you who aren't familiar with a NG tube, it is basically a tube that is inserted in his nose and runs down to his stomach. 


At that point it felt like we had taken a couple of steps backward. He was doing so well. He was off of the oxygen machine, and they had taken one of his IV's out, but now we had to be on a feeding tube... When I think of a feeding tube, I think of someone who is really sick, and James looked great! The only problem was that he wasn't eating enough. 


He spent all day Tuesday and Wednesday taking partial amounts from the bottle, but needing the tube to finish his meals. So, It didn't look like we would be making it home mid-week as planned. 


Thursday morning his doctor told me we had a couple of options. IF James looked like he wasn't going to get the hang of eating well, we MIGHT have to surgically insert a tube into his stomach. In that case he would have a port in his abdomen where we would manually give him the remainder of his meals just like we were doing with the NG tube. However, since we live so close to the hospital, we had the option of going home with the NG tube still in place. It would require that Alex and I learn to place, pull, and check the placement of the tube, but it would be easier and less invasive than the G tube. If we chose to learn how to use the tube, we would be able to go home this coming weekend.


So, that's what we decided to do. Alex and I have been thoroughly trained on how to use the tube. And while it's not ideal, I feel confident that we can place, pull, and do any other required maintenance on his feeding tube. 

.............................................................


It is now Friday evening, and it doesn't look like we are going home this weekend. 


Last night I was staring to feel a little uneasy about coming home so soon. I was worried that we would get him home with his feeding tube, and he still wouldn't know how to eat properly. It is common for kids with Down's syndrome to have feeding issues, and I was worried that if we didn't try a little harder to get him to eat in the hospital that we would be stuck using a feeding tube for a very long time. 


I talked to our nurse and his doctor this morning about my concerns, and they agreed that it might be best to slow down his discharge plans. Today, we spent some time with one of the speech and feeding therapists. She helped us make sure he was using the right size bottle nipple, and we experimented with different holding positions to keep him awake longer during feedings. 


So, now we are expected to be at the hospital for a few more days. Even though we are REALLY excited about the idea of having home home soon, I am glad that we are giving him a chance to learn to eat without his tube. 


To make staying at the hospital a little more comfortable, he was given a little room upgrade today. Our new favorite nurse, Lauren, brought him a crib style bed (since he no longer needs to be on the warming bed) and a bouncy seat! I'm sure he'll love having something fun to look at and will love getting to spend sometime out of bed in his new seat.