A day in the life:- Momma gets to the hospital around noon, baby is asleep. Momma steals sugars from baby's sweet spot (below his little ear lobe :)). Baby wakes up and smiles at Momma. Momma's heart melts.
- Baby coughs, Momma suctions trach. Baby rubs his eyes, rubs his nose & tries to pull out his feeding tube. Momma distracts with a game of patty-cake. Baby grins. Momma's heart melts.
- Momma gets Baby up out of bed & they sit in their comfy chair. Baby checks on his neighbors & Nurses. Nurses swoon over Baby's big bright eyes. Baby smiles at Nurses. Nurses heart melts.
- Momma snuggles Baby close (too close), and Baby's trach gags him. Baby retches & turns purple, Momma tries to distract Baby from puking (it works). Gagging makes Baby hot & sweaty. Momma takes Baby's clothes off & tries to snuggle again. Baby is too hot & sweaty to snuggle, so Momma puts Baby in his Boppy. Baby gets sleepy & makes his sweet little 'sleepy face', Momma's heart melts.
- Baby takes a cat-nap, while Momma plays Scramble with Friends (love that game!!) Baby wakes up & watches his mobile. Momma plays the 'kissy face' game: Baby's stuffed animals give Baby kisses all over his face. Baby grins his big open-mouth grin. Momma laughs. Baby coughs. Momma suctions. Baby gets tired of playing, Momma rubs Baby's head and sings his favorite song. Baby naps.
- Baby gets an afternoon bath. Momma and Nurse double-team Baby's stinky neck. (Baby's trach ties get funky!) Baby is such a good boy and makes bath time easy. Baby smells like baby lotion & gets a fresh outfit and looks like such a big boy! Momma's heart melts.
- Momma has to leave the nursery for shift change, so Momma pumps (yes, Momma's still acting like an ol' Jersey) & plays more Scramble with Friends.
- Momma comes back from the shift change with a new toy for Baby: a Kick 'n Play Piano. Momma & Nurse get Baby (& all of his accessories) situated in the floor. Baby coughs. Momma suctions. Baby stares at all his new friends above his head. Baby kicks & kicks his piano, making all kind of music. Baby smiles at Momma and kicks some more. Momma's heart melts.
|Baby says: Momma, this is so fun! :)|
- Momma gets Baby back into crib. Baby looks at the sweet baby in the mirror and grins. Momma steals more sugars. Momma prays the same prayer always prayed with Baby. Momma steals more sugars. Baby grins. Momma's heart melts.
...and that's about how our day went! :)
(With lots of more coughs & suctions, poops & pees, tangling & untangling tubes and cords, and melting hearts in between!)
Now, today was a really really good day with Mr. Clay. Some days are not so happy & smiley.
..Like this past Monday.
As I mentioned in my previous blog post, our plan was to slowly wean on Clay's ventilator settings. And we were making good progress. In a little over a weeks time, Clay's pressure control was down from 16 to 12, his pressure support down from 16 to 11. He was requiring 21-26% oxygen. All good things!
But, Monday evening, Clay decided he had enough of all the weaning nonsense--he got mad. And madder & madder & madder. He was air hungry and frantic. We changed trachs, gave extra oxygen, got x-rays, ambu-ed him, changed trachs again, tried every way in the world to console him. But nothing helped.
Finally, we went back up on his settings and he recovered.
It is the worst feeling in the world to see my baby struggling to breathe like that! Believe me, even though it was somewhat of a 'set back', I would much rather be in the hospital with a happy baby than pushing him to his limit like that. My mom & dad were there to witness his fit and I think it put a few more gray hairs on their heads (ha!). And he scared his nurses too!
So, we're still kind of unsure where we'll go from here. We will probably have to try a different kind of trach--a cuffed trach--with hopes that it will create a better seal in his airway. That way, he doesn't leak air around his trach & lose pressures that way. Keep your fingers crossed that this is what will do the trick!
And please continue to send your prayers & good vibes to our lil' man--that he'll be STRONG, HEALTHY & HAPPY :)
And in other news: I'm super pumped about seeing The Hunger Games movie tomorrow! You all should read the 3-book series by Suzanne Collins..It's awesome!
Peace & Love & Sweet Dreams to you all!