*surgery update #8

As you may have noticed, when Will is home the blog updates are scarce. We did come home on Tuesday!

So far, so good. However it is very difficult to manage the pain of someone who can't talk. I have medicine to give him and we were schooled on the signs of pain but honestly, I just can't be sure what is happening. All of his signals are different now. He has two new cries - as in hungry cry, pain cry, change my diaper cry, or sleepy cry - but I don't know which is which. And he has always had a really quiet grunt but now he appears to be using that differently too. Also he is more verbal so I sometimes mistake him growling just to entertain himself as a wimper.

The only other difficulty about being home is holding him. I had a routine of carrying him around some of the day in a carrier/wrap. And when he needed comforting we would hold or rock him a certain way. Temporarily we can't put him in those positions so when he does one of these new cries I'm not able to try the old tricks. Depending on the trick that worked in the past we could figure out what caused the crying. Now we are inventing new things like bouncing the mattress in his crib. We are postponing our massages and little exercises. And clearly we have to forget about tummy time for building his neck strength for awhile. I'm looking forward to having him lie on my chest with his head on my shoulder again.

Here are some ways Will is still the same old Will: his happy smiles, likes his swing and bouncy seat, likes to "hold hands" [and no this isn't the baby grasping reflex...he really likes to hold onto my finger!;)], rub his eyes when he's getting sleepy, fascinated by his favorite toy, vocalizing more, and appears happy when I do the Isty Bitsy Spider and Patty Cake. We are constantly encouraging him to make more noises because we are really looking forward to him laughing regularly. I think he made a real  laugh once but we haven't heard it again. His laugh now is so quiet...he hasn't realized how much more noise he can make. When he is really happy he has a big open mouthed smile...we are waiting for the sound! We will often mimic his throaty cat-like sigh. It also has a bit of a grunt. And he mimics a sound from us but it still sounds like the throaty grunt sigh. We celebrate anyway because he does it on cue!

Twice a day we are cleaning the incision on his chest. So far I am only comfortable with squeezing the soapy water out of a washcloth onto him, rinsing the same way, and patting him dry. Bath time was already difficult with the feeding tube and now we have to keep him in pretty shallow water so none of his healing spots are under water. We are really looking forward to baths getting easier.

Next up is getting rid of the feeding tube. The one they sent him home with is longer than him! It has two ports on the end which is a mess because sometimes one pops open when you are shooting medicine or water down the other with a syringe. And since it is long he ends up sitting on it in his swing. I have to lift him and hope that dragging it out from under him won't snap off a top. Then milk pours out and we have a big mess. Not much longer though.

Well I've stopped typing about twelve times this morning to play with Will. I need to wash about 20 milk storage bottles and squeeze in a round of This Little Piggy before it's time for him to eat again.