Here we go with another “up all night” night. Trevor had better sleep past 5am in the morning, he only took two 15 minute naps the whole day and was otherwise a spazz. I can’t believe his energy.
Brendan was pretty much a spazz too, he was pretty happy all day. It is very weird seeing his little face now. When he has been napping and I haven’t seen him in a hour, I still almost do a double take at how cute he is and how different his little expressions are.
He had one major vomit early this morning but it was triggered by thick secretions around his trach tube. He had a handful of other spitups but they were really small. If he stays happy and his heart rate is good, then we are on the right track. No more vomiting would be ideal!
I have been worried about it all day long, it is so hard to know when you are making the right choices with him. There is a fine balance between pushing him to make him strong and recover and making him suffer. Then there is keeping him comfortable and over babying him so he never improves.
He did do an epic sprint off the vent today on the mist collar. It was so long we lost track of it. His numbers were so good and he was happy so we let him just keep going and going. He is sound asleep now!
He sure does like to play, and he loves this helicopter.
He was smiling at everything this afternoon
I told him he was a “camera ham” and it made him laugh. Now any time I say “camera ham!!” he giggles
Even though his naps were nearly nonexistent, Trevor was in a decent mood. He was very clingy to me today though. He was extremely active and played a long time in baby jail and played with his brother too.
He loves his straw cup now. He drank a lot of water today.
He reads the labels on his puffs very carefully, and even checks the expiration date. 🙂
(All the background noise is Brendan’s mist compressor)
It is so much different waitIng for the blog to be posted when I am not there taking many of the pictures that appear on it.
The first week I am at home, I go through my own kind of withdrawal from the boys, and seeing the sweet little smiles, and rocking those cuddly babies. I miss them very much.
I hope and pray that Brendan will do well with his feeding tube in his port, and if it needs to be changed, they can do it through the port, and he will not need any more tubes in his nose and down his throat, and no more tape on his adorable little face.
Trevor’s antics are even cuter in person than on video, but it is adorable the way he looks as though he is “reading” the label on his puffs. His “dancing” is hysterical! And the scooting made me laugh every time he did it.
I am so grateful to have seen through all of the sleepless nights, the medical emergencies, the surgeries and hospital stays, the medicines, the therapies, the constant caregiving…there are still moments of laughter, amusement, accomplishments, rocking, singing, cuddling, and great love. It is truly a testament of what really matters. No one who has had the opportunity to know Brendan and Trevor, either in person or on the blog, is not In some way touched forever.
Brendan shows us what real courage is all about. He also shows us what joy in simple things (like a toy helicopter) can look like. He is an example of those things we all miss, even when we have lived 60 years! Thank you, Brendan. I love you very much.
Thank you, Trevor, for making me laugh. I am very proud to be Gramma to both of you.
Lots and lots of love,
Gramma
I am so glad to hear that Brendan is doing epic sprints! It’s about time he caught a break on something. I do hope the feeding tube can be worked out OK, one way or another. Brendan really has been an inspiration to so many, and anyone who sees the pictures or hears the story is amazed at how far he has come. Trevor continues to thrive too – I don’t want him to ever think that he has not overcome things either. After all, this is the baby who although born 2 months early, you wouldn’t know it to look at him! Both boys have great parents who have made it all happen for them. Remember that boys, when you are 15 and stomping around mad because they won’t let you do something. They care about you and will always do what is best for you, no matter what that means.