First FHE

Christmas Lights

Meet the Doggies

She was a little sleepy.

They were both very interested in her.

But Bear seemed especially enamored. Of course, he tends to just push Maddie out of the way and block her so she might have been up there more otherwise. lol!

Home

My View This Morning

I can't believe how well she slept through the night, considering she's in a strange place. But she took it all in, played and smiled for a bit, then fell asleep. I'm hoping this is a good omen for quick adjustment when we get home. 

One Day More

Just one more prescription to be filled tomorrow and then it's discharge time. 

Comparison

For fun...

Newborn

1 month

2 months

3 months

                                 

4 months

                                 

4 Months Old

May we spend her 5 monthiversary at home, right before Christmas. 

Freedoooooom!

Today I gained a little weight...

Lost a little something extra…

Which also occurred right after I got my bag and diaper changed, so I tossed my cookies because I was upset. Fresh pajamas, hooray!

Nap time!

Tomorrow morning the clock will start for mommy and daddy to do an "In Rooming" session over 48 hours where they do everything without the nurse coming in to take vitals. I guess they want to make sure someone is available when questions come up instead of us going home and have questions there without someone to answer them. We're almost home, I can feel it. 

Thanks, Ronald

Yesterday the surgeon said we could start trying bottle feeds again, but somehow the note did not make it to her chart so the nurse wouldn't let me do it. Today, the doctor remedied that and she finally got to try it just now. She struggled a little but did better than I expected for her first try. They are bumping her up 5mL every 9 hours now instead of 12. And aside from her vitamins this morning coming up, she hasn't thrown up. Just normal spit ups like any baby does. 

As in serious going home game plan. It could be as early as this weekend, or early next week, depending on how things go. The manager at the clown house said we could stay a few extra days once she is discharged so we can be close in case anything happens right off. We might do that. And that only solidified my need to thank them in some way. I'm sure glad this turned out. 

That's Right

We finally broke 8lbs. Probably thanks to her being back on lipids, but still!

Education

Today we are going to make sure we are familiar enough with the pump and such. The nurse also suggested looking into g-tube pads so Elizabeth can have something cuter than gauze sitting under her tube port that is washable. I'm currently looking into finding cute ones for a reasonable price. Between the tube and her ostomy bag though, I have a feeling our life might go a little like this for awhile:

No Words Needed

Star-Studded Event

Elizabeth made it through her surgery very well. The rest of the day and night was spent listening to her cry out in pain though. They have been giving her morphine every two hours, but she went for four hours on her own last night at one point. I would wake up on occasion to check on her when she would cry, or when the nurse came in. In between I would have lots of weird dreams with celebrities starring in them. 

I got to see Princess Leia, 

Maggie Smith,

Robert De Niro, 

Dale Earnhardt Junior, 

who then turned into George Strait.

Lucky me, right? I would certainly have traded all of that to have her feeling better. She does seem to be doing better this morning though. We might get to start feeds through her tube today, we will see what the surgeon says.

 

A Little Nonsense Now and Then

Justin and I finally tried out Roadhouse Cinemas which is a movie theater with recliners and dinner. We saw the new Peanuts movie which was good and enjoyed the atmosphere. Then later on as we were turning down the road to the Clown House I remembered that the room key was in my backpack at the hospital. 

Bwoops!

But we made it in time for her last feed before she had to go NPO for surgery. She horked down 20mL in one shot. For a moment I thought she might take the whole bottle, but no such luck. It's good to see her continually improving though. And I'm glad we got to be a part of it. 

I also captured this treasure. 

Can you see what's going on here? Here's a better angle. 

She is holding her binkie which is just barely in her mouth. And she was occasionally suck on it in her sleep. Adorbs! I'm glad we got this moment, and I'm glad we had a little nonsense fun. Now to face tomorrow. Good night. 

Visitors

Great Grandma Rhodes finally got to hold Elizabeth today. 

And Grandpa Rhodes held her for quite some time. I think he's in love with her. ;) We should start a fan club.

Surgery tomorrow...
 

The Time has Come

The Walrus said...

To talk of many things. 

Well, of one thing to be specific. We gave the go ahead to schedule the surgery, hopefully on Friday. She gets really into her feed at first and then she just tires out. Her percentage has plateaued I think and we just don't see it getting better too quickly. I think the g-tube will be handy and it is reversible. Who knows, by the time she gets her pull-through done, we can have it reversed then. 

At least we know we tried our hardest and exhausted every option. She will be enrolled in a program at this hospital where they work with her feeding/physical/occupational therapies all the way to 2 years old. This should hopefully help her transition to a point of not needing the tube in the long run. 

Eat Your Heart Out Batman

Stark has lights so I think Batman has some new competition. 

Oh hi Tony!

Today

She met some fighter pilots. 

Got a patch.

 

Got new curtains. 

Made sleeping look easy. 

Her feeds are gaining quality, but not quantity at this time. We decided to ask them to schedule the surgery for next Friday and we can always cancel if a miracle happens. Speech did recommend a slower flowing nipple we can find at Target or Walmart we will certainly try to see if that helps.