Hurry up and wait

So it's been a while since I've posted. It's been a combination of being homeless for a few days and just not feeling like it. But I'm back now and going to try and catch up for the last few days.

Thursday you had your first physical therapy session. You didn't full on hate it but you didn't exactly love it either. You physical therapist is super nice and really patient and gentle with you so that helped. While your in the hospital you will be getting PT sessions on Mondays and Thursdays.

Baby jazzercise!

Thursday afternoon uncle Sean came and met you. Uncle Sean is good for your Dad and I'm so grateful your Dad got some guy time.




So Friday we spent the day with you then left around 11 pm to drive back home. It was nice to see the place (and to sleep in my our own bed so soft!) but the house felt like a corpse to me. You know like when someone dies and they say whats left is just the body. The the soul and the spirit had gone and now it's just the corpse. Without our family there that's exactly what it felt like.

Then on Saturday while Granny spent the day looking after you we spent the day with your brother. It was so great to see him. He kept giving me hugs and calling out Mommy. We didn't do anything fancy but we got to spent some real time together and it was wonderful.

Leaving was hard of course. I don't really want to think about it.

We got back to the hospital in the evening after figuring out where we were going to stay and you did not look good. In fact you looked awful. At one point they were even thinking they might have to re-intubate you but instead they gave you some steroids and increased you oxygen and you made it through the night.

Dad and I never left your side. We got a parent's room at the hospital and Dad and I just traded off shifts. It was a long scary night and we both felt so helpless.

Sunday not a lot happened. You spent the day getting better while Dad watched the Superbowl.


Monday Dad and I got back into the the LA Ronald McDonald house. We are in room #44 this time and it's twice as large as the room we had the first time.

You'd think we were moving in for a month or something!

After we got settled in we spent as much time with you as possible before he had to leave to go back to work.

I managed not to cry when he left. Well mostly anyway. I can promise you it's way harder on your Dad to leave than it is for me to stay.

Tuesday you looked amazing! At one point you were awake for almost an hour. We talked, we played, you cooed. We had a wonderful time.

Sleeping on Mommy's lap

Hey Mickey what's up?

I wanna put on... my my my my boogie shoes and boggie with you.

I had a meeting with the ear nose and throat Dr about your increasing stridor and respiratory distress. It was a long discussion that kinda went back and forth but in the end what we deiced is too go in and take another look and see if your laryngomalacia and mild subglottic stenosis have gotten worse.


Depending on what we find it will give us more information on what the next step is. The Dr said that in only 5% of cases is surgery warranted and he is thinking you may fall into that 5%.


The surgery sounds pretty invasive and only has a 50% chance of improving your breathing issues so I'm hoping it doesn't become necessary. For now you are back at 2 liters of O2 at 40% and are comfortable and happy.


I have asked the Dr's to coordinate the L&D and your tube feeding surgery so we only put you under anesthesia once and that's what they are working on now.


So again hurry up and wait. We're getting pretty good at that.