Monday, December 17, 2012

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!

Monday, November 5, 2012

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.

Thursday, October 25, 2012

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!

Sunday, October 21, 2012

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.


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!

Monday, October 15, 2012

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

Wednesday, October 10, 2012

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.

Tuesday, October 9, 2012

Physical therapy.

The good news is that William passed his OT evaluation. The disappointing news is he did not pass his physical therapy eval. I was fairly surprised because he is sitting on his own and already trying to crawl. However, he isn't bearing weight well on his arms, not straightening his legs, not Rolling over, amongst other things. The only thing I knew about ahead of time was that he didn't roll over. The rest was news to me. So, every day we will work at home, and we will go to pt once a week. It could be worse, for sure. I was just so sure he would pass.

Sunday, October 7, 2012

Busy week!

Will had a busy week and more to do this week. We still haven't heard the results of his OT evaluation. His pt eval is tomorrow. Today, we had photos done with inspiration through art through Tausha Ann photography. If you're in the Nashville area I highly recommend her! We had lots of fun and the pictures looked great on her camera screen. I can't wait to see them after she edits them! Will was a perfect angel, as usual.

Yesterday we went to a pumpkin patch, and Will had a blast!

We have a cardiologist appointment on Wednesday. I think that I will always be nervous for these.

Wednesday, October 3, 2012

Baptism and milestones

Will's baptism went great. He was so well behaved. He say through the whole service quietly playing with toys, then fell asleep right before he was baptized (which he mostly slept through). It was wonderful to get to see family and friends from out of town.

Will has suddenly reached a lot of milestones. He is reaching for and playing with toys, and he sat unassisted at his OT evaluation yesterday. Still waiting on results for that. He was tired and not completely cooperating. Lying on his back he would not reach for the toys (even though he can) and would just wait or her to put them on his chest to start playing. Some things he did not demonstrate, I showed her pictures and videos. I don't know if they count when you do them that way but it was worth a shot.

Will is still not eating well. We are pretty positive one of his heart meds is affecting his appetite. If he gets very hungry he will eat just enough to not feel hungry (half and ounce or so) and stop. So we know he is able to eat and also associates hunger with needing to eat a bottle. That's all very good. Hopefully once he gets off some meds he will feel better.

Thursday, September 27, 2012


Hi friends, not much to update. Will is doing great. He is going to be baptized this weekend and meet some of his out of town family. Hope y'all are enjoying the beginning of fall - we sure are!

Sunday, September 16, 2012

Post Glenn life

It's our second weekend home after William's surgery and we are having a blast.

We had a scare the other night when one of the bandages fell off of his incision and it looked infected. We sent a picture to cardiology and they had us rush in to the emergency room. It was about 10 pm when we got there. Will's pc stayed late when she heard he was coming. She came down to the ER, looked at his chest and said it looked great! The picture made it look at lot worse than it did in person. We were home shortly after midnight. I'm sure it was the shortest ER visit ever.

Will and I have been taking advantage of our life outside of isolation! We have gone to the mall, the park, out to eat... Any and everywhere we can! It's so easy to take advantage of life and all of the things that "normal" people do. I know I never will again.

Unfortunately being in public you are exposed to people who are unkind. We have had a few comments made me uncomfortable, but I just have to shake them off. People see his NG tube and they know he is different. I wish it wasn't like that, but it is. They ask if he is sick, if he will be okay.. And I don't ever know how to answer. Is he sick? Well, kind of. Will he be okay? I hope so. Some people are not polite. I don't mind the curiosity- I prefer to educate people who want to know what he is dealing with. I wish I could educate people who say rude things, but I am not quite sure how. This is just part of our life now. Will still isn't eating his bottles well, but I know someday he will get that tube out and look just like everyone else. Until then, we will just have to tell him and everyone else how amazing he is... In case they don't already know.

Wednesday, September 12, 2012

Surgical follow up

Will had his surgical follow up today. His X-ray looked perfect. The only concern is that he is still not taking his bottles, but said we will give it a few more weeks before we start to worry. She said we don't have to come back for two months, but I am used to once a week so I asked if we could come back sooner- one month.

He is feeling much better. We went to the zoo last weekend and he had a blast. Will loves adventure!

Thursday, September 6, 2012

Discharge today!

Wow! I can't believe we have been inpatient for a month.. And that will is done with his Glenn! Life should be much easier now. His new physiology is much more stable. We are excited to conquer the world now.. Because we are going home!