We have now lived in a hotel for 5 months straight, yikes.  While unfortunate,  we are glad we are here because the alternative could mean RT didn’t make it. 

Snowflakes this morning! Always a beautiful sight. Does not stick though.

Nurse was one we’ve actually had several days. She is generally attentive to his food timings which makes the day smoother.

We thought tentative plan to start oral feedings tomorrow but…Pulmonologist is so impressed with RT, he recommends surgery soon-possibly later this week! He works on setting up a consultation with a surgeon. We should meet with him tomorrow. Surgeon recommends holding off on the oral feeds if we can get surgery scheduled for this week. That way we don’t add something new to the mix.

Well, glad we will get the surgery out of the way, obviously nervous about it as any parent is with theinerrant risks. G tube and inguinal hernia.

After surgery we will be in the PICU, but right now PICU is full, full of sick babies with stuff wedon’t want RT tobe exposed to.. RSV season came early, Also whooping cough…. These things could be detrimental to RT’s fresh lung growth.

Depending on surgery and how it goes it could potentially set us back.  Or RT could power through it like the other things he has.

To do surgery it means he has to be sedated and intubated again.  We know how hard it can be to get him extubated.

Mostly a happy boy today,  gets grumpy when he is hungry.  Wish we could give him larger feedings but he is fluid restricted.

Good belly time to let him work on his crawling,  he wiggled over a foot forward today, kind of like an inch worm!

Some stretches,  making him touch his feet, hand to oposite foot. Important to help make the bonds in his brain and recognize his body. We work on his stretches every day, gives him a better chance at not having as many difficulties.

Still constipated, sapository because he gets uncomfortable and angry.

Mom eventally gets him to settle down and fall asleep.

We hang out.

Anxious about what surgeon says tomorrow.

Then time to go try and settle our selves down and sleep.