Wednesday, April 26, 2017

Happy Birthday, Timmy!

Timmy got a little taste of homemade ice cream for his birthday.

It seemed to go well.

But, since he hasn't really eaten anything by mouth for over 6 months, it wasn't very well received. I finished the ice cream myself for him.

Also, not super interested in opening presents. . .

But with a little help he got a hold of his outfits.

He really just enjoys holding on to his clothes - just like a couple of extra blankets.

Some smile from Timmy while in his swing.
With his hands in his mouth.

   Right after removing his hands from his mouth.

And a smile in the process of going away. I love all his faces!

Friday, April 21, 2017

Celebrating 6 months home from the hospital!

Not much to report. He's been deciding to spit up more frequently after feedings recently, but other than that he has been doing well and sleeping well. He has been enjoying his new play mat and having some more freedom without needing the cannula in all day every day.

Enjoy the new pictures!

Monday, April 17, 2017

Timmy's Doing Great, Just Been a Long Week

These pictures at the top are almost a week old, but this has been the normal over the last week. Timmy goes without the cannula while he is awake. Smiling, noise making, moving around a lot.
And he's been taking a long afternoon nap. We are hoping the pattern will continue - a long afternoon nap, and sleeping well through the night.

Here he is this morning - I got lots of smiles. I am sure Timmy watchers like Summer and Colleen will appreciate the big smiles!

Timmy made it out to church yesterday morning - Jen bringing him over complete with feed pump since it was his normal feeding time. Tomorrow the plans are to bring him out for his great grandfather's funeral. He never got to meet him, but his great grandpa got to see some of Timmy's smiles in pictures. Grandpa's passing has made the week a long one, and also makes us that much more grateful that Timmy has been sleeping well and managing well during the day.

Saturday, April 8, 2017

Starting to feel better!

Timmy's congestion has been starting to break up well, and we confirmed yesterday that his lungs have stayed clear with this bout of congestion. He is making lots of noise and playing more these days, and even as he is still congested, has been able to go without oxygen again at times.

We saw the cardiologist yesterday and they did an echo on his heart and see the same dysfunction that has been going on in Timmy's heart since birth. The options for surgery are not any better than they were 6 months ago, and we are beginning to see the non surgical route as a better one for Timmy.

Even with the mess his little heart is, he is doing well. Surgery offers a chance of improvement, but definitely brings with it a set back, and increased risks and new medications. In cases like Timmy, the long term success of surgery is questionable, and may even cause more problems in the long run.

Some day, surgery may be a better option, but for now we are content to enjoy our little one and the many blessings he brings into our home.

Monday, April 3, 2017

Timmy's back to fighting congestion

It seems we go through pretty regular cycles. About every 2 weeks we have a health concern of some sort with Timmy. His food ends up leaking from the g-tube, he ends up not sleeping well, he ends up grunting all night long, he ends up sick, . . .

And then, he starts getting better, or we figure out what is causing him to not feel well and make an adjustment, and we have smooth sailing again. For a few days.

This round of congestion is knocking his oxygen sats way down. We are having to give him several doses of albuterol a day to help support his oxygen levels. The albuterol eventually makes it hard for him to sleep at night, but it is the option we have right now. 

Even in this, we know we are blessed. We know some families that end up back in the hospital every 2-3 weeks. Timmy has been home for 4 months and 13 days. He has been almost 3 months since having a cardiologist visit. Being at home has its struggles, but we like this option over the alternative.

We would appreciate prayers that he will be able to sleep well, and that the congestion would clear up soon. He sees the cardiologist this Friday and we are hoping to find out more about what may lie in the future for Timmy. More about how his heart is doing. Is it improving? Lots of questions. But for now, just a desire to see him back to breathing easier.