A few updates!

You know what they say, no news is good news. I've been meaning to update for a while but I've been happily caught up in the busy and rewarding job of being William's mom. He is 6 months going on 60, wiser than his "months".

We had a quick trip to the ER a few weeks ago. It was a weekend and Will wasn't wetting diapers and was pulling on his ear. Sure of an ear infection, but concerned about dehydration, we rushed to Vanderbilt. We got a room and he was hooked up to leads, which gave me a chance to see his HR and Sats for a few hours, which was nice. He wasn't dehydrated. I was grateful because he didn't have to have an IV! He was so good for the doctor who confirmed an ear infection and gave him antibiotics. We were there about six hours total and were home in time for the bedtime routine.

Will is still in physical therapy, and doing well. He has a few things to work on to stay caught up. He is also starting feeding therapy tomorrow, because he is still primarily tube fed. He has started solids, though, and is doing reasonably well with those. We are anxious for help, however, since we have never had to tube wean a baby!

Christmas is just around the corner and Will has been very good. Santa will be spoiling him for sure! We hope you all have a wonderful holiday!

Ready for the holidays

Hello friends.

Since I last posted, William has caught up developmentally and is now exactly where he should be a five months old!

That was the good news. The not so good news is that he has been sick for a week now! Nothing serious- his first cold. But any sickness can turn bad quickly for him so I am monitoring his Sats more, checking his temperature several times a day, listening to his lungs and having Tylenol ready. He has had a few minor fevers, and some other symptoms where I was ready to head to the doctor, but I've spoken to the pediatrician and cardiologist. With some pedialyte and the close monitoring I'm doing we've managed to stay home. We are skipping physical therapy and staying home until his is 100% better.

At this point we are just looking forward to the holidays. It's hard to believe they are coming so quickly. I definitely remember many times wondering if William would be with us, so this year they will be extra special in so many ways.

Please pray that this cold is as bad as it gets as we enter cold and flu season, as anything worse could be very difficult for his heart.

Happy Halloween!

William is five months old now- how time flies! We are ready for some Halloween fun!

Will is working hard at physical therapy. He loves it. We have met a lot of goals in only two weeks! He is rolling now, sitting better and longer, bouncing on his feet, and more!

We hope y'all have a fun and safe Halloween weekend!

Music and molasses festival

Yesterday we took will to the music and molasses festival with our friends! It was a blast and the weather was perfect.

Photos!

William was accepted for an organization called inspiration through art. They helped us connected with a local photographer who did a photo session for us, Tausha Ann Photography. She was great! These are some of the pictures she did!

How it feels to be a heart mom

I wrote this poem this morning. The photo is by Tausha Ann photography.

How does it feel to be a heart mom?
How does it feel to fear the worst?
To cry tears of joy just to hear
His heart failure has been reversed

To spend hours in a surgical waiting room
Not knowing what news you'll receive
What's happening under the knife
While people urge you to "just believe"

How many times do we wake up at night
Just to make sure they're alive
Then lie in bed and wonder
Will my baby live... Will they thrive?

We are told that the future is unknown
All we can do is work on today
So we go to our appointments
And pray that things are okay

You hold your breath at every nuance
Hope that this visit is brief
And all of his good X-rays and echoes
Bring only temporary relief.

How does it feel to cheer and rejoice
When they drink just a sip or two
While healthy babies eat too often
And that sounds like heaven to you

How does it feel to cherish
Every time he is in your lap
Because you remember what it's like
To have a week long gap

To feel anger like you've never known
When others express sorrow and pity
When they say "I feel so sorry for that poor baby
"But at least his eyes are pretty."

To wonder daily if you've made the right choice
Why did I put him through pain?
But at the same time I know he deserves life
It's something I just can't explain

I hate that I know how to drop a tube
Or that I know about iv mil
I don't want to be medically savvy
But I must advocate, so I will

People tell me that I am strong
If you were me, what would you do?
My life belongs to my child
I do what we need to pull through

One thing I will never know
Although it is my heart's desire
Is how it feels to be my son
For he is the one we should admire

I don't pretend like I'm the only one
Who suffers with my fate
In fact I feel I'm luckiest
To know my life is great

Card visit

Will's appointment went great! His pc said he looks awesome! He had an echo that showed a bit of improvement in function. It's still slightly depressed but any improvement is good and it could continue to improve with time. The best part? We don't have to go back until next year! Our next visit is in January. This will be the longest will has ever gone without seeing a cardiologist! Love it.