Excuse me did I say Thursday?

What was I thinking??

We are STILL waiting to have the sleep study read. I was told our study is in a stack of studies waiting to be read (read shut up,sit down, and wait your turn).

Things are happening though.

Debbie, our awesome case manager, made a list of all the medical supplies we will need to go home with and is getting that all set up and I got my Pertussis vaccine which they only give you when you are about to go home.

So we're closer but otherwise just sitting on our butts twiddling our thumbs.

If no progress is made by this afternoon I'm going to go all "Mad Elephant" on them.

Should be fun. Or not.

In the mean time enjoy some cuteness that is you.

Your favorite activity other than being held by me

You have full on conversations with your aquarium. It's so adorable.

If we go home before Saturday last night was our last night with your favorite night nurse Jackie. You already miss her (so does Mommy)

The waiting game....

We had a nice Saturday at home with Daddy, Pierce, and I. It just felt so close to right. The only thing missing was you and Bonnie. We were almost there but without you far from being a complete family.

Not a lot is going on. You now weigh 7.7 lbs and are 21 3/4 inches long. Now that they aren't turning off your feedings every other day your starting to grow! We hope your going to start packing on the pounds and inches now.

Your breathing is getting better and better with longer periods between your de-saturations.

We are just waiting on the sleep study. We have been in line since Thursday. We hope to have it done tomorrow but aren't promised anything.

I've been squeaking as much as possible to get this wheel oiled as soon as possible because....

once we get the test done (as long as the results are good)

we do the car seat test

we do our overnight test

and then......

we

get

to

go

HOME!!!

Dad and I can't let ourselves get too excited yet. But we are so close.

Fingers crossed that we get the sleep study done tomorrow!!

and...

Our Internet isn't working so I won't be posting again till at least Monday.

I'm just leaving your room heading home to spend some time with Pierce. Granny will be here with you tomorrow.

No sleep study tonight which is good in a way. I don't want to be exhausted. Pierce deserves some quality time with me.

Your de-saturating to the 70's when you get in a deep sleep. I'm trying not to read to much into it.

Just going to keep going with the flow. See what tomorrow brings.

Stupid H word.

The H word...

Yep, that word again. It's back. It's trying to sneak it's way in and take over.

I blame the Dr's and the nurses for part of it. All talking about next week. The happy little smiles. The quickened rate at which things are being ordered and carried out. The are feeding it. Encouraging it. Trying to distract me and let it sneek in.

It's partly your fault too. Your back on 2 liters through the nasal cannula for over 24 hrs now and your doing well.

Hanging out in your new swing. Sometimes you like it.

Really well.

and so it's back.

Hope

Hope for home. Hope for our family to reunite and be whole. Hope that this part of our journey is coming to an end.

Your first big boy outfit that nurse Jaclyn bought you. Look at your dinasour feet!

Us with your night primary nurse Jaclyn. She's absoultly wonderful and nurturing to you. Mommy can always sleep really well when nurse Jaclyn is on.

The Dr's want to do another nap study which is where they will montior your oxygen levels over an hour while you sleep. I'm asking for a sleep study which will be done over a whole night as you sleep.

Your even doing better during your PT sessions.

We had a nap study done before and the results suggested your oxygen levels were fine at one liter of support. Well they were for a couple of days and then it wasn't enough and you crashed and almost got re-intubated.

I just don't feel that an hour study, which means only watching you for 20 minuets on 2 liters, 20 minuets at 1 liter, etc will give us a clear picture of your oxygen needs. The Dr's think I have a good point and so they are working to get the longer study done.

In fact it's around 1:30 on Friday and Smith, the resident, just came in to tell me that they are optimistic that they may have a slot for us tonight.

We are about to hit our 28 day check out from RMH on Monday again so I deiced to check out today in hopes we will be back in and settled again on Sunday. I was going to drive home tonight to sleep at home and then pick up Pierce tomorrow so I can take him to Sarah's birthday party. Now, if the study is tonight, I will stay here and leave in the morning I guess. Good thing I can sleep while they are doing your study.


On Wednesday Aunt JJ surprised me with a visit from Pierce, Cousins Lauren, and Jonathan. It was wonderful to get to see Pierce again and he and I had so much fun singing his favorite songs and just spending some Mommy and P time.

Best big brother in the world!

The best part of the visit is Lauren and Jonathan got to hold you for the first time and of course you absolutely loved it.

Aunt T came to visit us on Thursday. You loved it.

So depending on how soon we get the sleep study done and what the results are the Dr's are talking us getting out of here soon. Like next week soon.

Me. I'm just going with the flow. Happy with how good you are doing and the way things are. Tomorrow will take care of it's self. I honestly just don't have the reserves left to let myself get excited only to deal with the crash if it doesn't happen.

No reason to be using the H word.

Not yet

but......you really are doing so good. (and I'm getting my hopes up)

For today, tomorrow, and maybe the day after...

We gotta plan.....sort of

So as your Dad posted moving to Loma Linda is a no go for now.

Insurance companies by definition suck.

So I was talking with the resident taking care of you today and she went over what steps we need to do to get you home.

She agrees that the two major issues are your breathing and eating.

First we have to get the nap study done, and then maybe the sleep study depending on the results of the nap study.

Second we need to get the surgery done for your gastronomy tube (feeding tube). We could get lucky and get in for surgery today, or it could be in a week, it all just depends on our luck. After you get your tube in then it will be about a week and a half recovery before we get home.

So best case scenario we are looking at two weeks more or less.

We have to get out of the Ronald McDonald house on Saturday and stay out for two days before we can get back in so we are looking for a cheap hotel near CHLA to stay for Saturday and Sunday night. Then we will get back in RM house on Monday where I will stay till we go home (or hit the 28 day limit again).

Dad has to go back to work on Tuesday so it will just be you and I till Dad's next day off. That part kinda sucks a lot. I'm not gonna lie I'm dreading the thought of him leaving.

I'm thinking I will just stay with you for our usual 8 am till around 11:30 pm (with a lunch and dinner break).

The thought of you being alone from 11:30 at night till morning is killing me but I just don't see any other way of doing it.

So yesterday CHLA opened a big old can of getting it done!!

When I came in at 8 am you were already in the hall going down to the GI lab for your bowel study. You did great but they did find a tiny bit of Acid Reflux.

You hated every second of the test of course

I really wanted to get a pic of your stomach on the screen but I had to hold your arms down because you were PISSED!

Because of the Acid Reflux they have decided to do the Nissen surgery when they do the feeding tube surgery

Then in the afternoon you went for your sleep study. You need to sleep for the most part of an hour so you kept me pretty busy patting you to sleep and keeping you happy.

All of these wires were put on you! It took almost as long as the test.

It's the 6 million dollar baby! We can re-build him!

We wont get the official results of the nap study till later today but a little bird told me you did well with no major desats (drops in oxygen level) till they put you on 1/4 liter of oxygen. Then your level fell to 92% which is too low so I figure we will be going home on some oxygen but we will see.

Cross fingers and send good thoughts we get into surgery soon so we can start the countdown to getting home.

So now we've got a plan for the next few days let's see what the next few days has in plan for us.