Big sister

She sure does love him.

She is fiercely protective and always watching out for him.

And she always wants to do things for him.

She is such a good big sister.

Surviving

 My mom left yesterday afternoon. 

She was here for two weeks helping and taking care of our kids.

It was a huge blessing to have her here and we miss her.

 Today, I asked Kathryn to babysit Samuel while I took a shower.

She got some toys out and played. She even got one for Sam to play with.

Sweet girl. She has really been such a good little helper.

I locked Maxwell in the bathroom with me while I showered.

He mainly played with this styrafome cooler. What a great toy!

It's noon, and so far we've survived. I think we'll be okay.
But, I suppose that could change at any point:)

Reading

Everyone enjoying some down time. 

I love these pictures. 

Especially the last one with Grandma and Grandpa.

Home

It's good to be home.

Sam will be on oxygen for at least another month or two.

Life will be hectic for a while, but we'll get through it. 

Thank you for all the calls, messages, help, food, gifts and prayers.

We couldn't have done it without our family and friends. 

A love note

I've found myself calling Michael at least 20 times a day,

Just to check up on things. The first time he went home with the kids,

I called several times to check on his plans for dinner.

He texted me a picture later that night of the food they ate.

I guess he wanted to put my mind at ease. 

My mom took care of Max and Kat for a few days while Michael worked.

I called her to see how things were going. She turned her back on Max for too long.

He dumped an entire bottle of root beer on the table and floor. 

The next day, Michael came home and found Max with a cup of yogurt. 

Most of it was on his head and the rest of it was all over his body. 

Nothing was in his mouth. Every time I imagine these scenes, I can't help but laugh.

I got the sweetest message last night from Michael:

I love you more than you could ever know. I admire and cherish you.

I have learned more than ever in the last couple of weeks how much you do for me 

and our family.  I miss you so much. I love you. I love you. I love you.

I love you too honey. Forever and for always.

False Alarm

We had a discharge plan all in place for Monday.

At the last minute, the NICU doctor changed her mind.

He still required oxygen, but they were willing to send him home on it.

We would work with the pulmonologist and pediatrician on weening him off.

His respiration rate was still too high, so they decided to keep him longer.

He had a cardioechogram on his heart yesterday to rule out any problems.

Thankfully his heart looked fine.

It's just isn't normal that he still requires oxygen and is breathing so fast. 

His little body is working way too hard to breathe.

I guess he's not quite as textbook as we thought. 

He's proving to be more of a mystery like his older brother was. 

And we definitely don't want to be discharged one day

And life-flighted back the next day (which is what happened to Max).

Hopefully, they can figure it all out soon!

A little longer

Things always seem to get a little worse before they get better.

Yesterday, Sam was escorted to the bottom level of the hospital for a swallow study.

I had an overwhelmingly eerie feeling as I walked down the hallway.

First we passed the OR where Max had two surgeries almost two years ago.

And then we walked back to radiology, 

where Max had multiple swallow studies and feeding tube placements.

I felt like I was re-living a terrible nightmare.

A few days ago, we noticed a strange noise (stridor) when Samuel ate.

And his oxygen was still all over the place.

There seemed to be a correlation between his feedings and oxygen desats.

So the doctor ordered a swallow study.

Thankfully, the results were much more hopeful than we anticipated.

Now he is on thickened feeds for a while.

This will hopefully help with his stridor and his oxygen requirement.

The doctors and nurses keep reminding us that he was a very sick little boy

And it is going to take him time to recover and prove he is ready to leave. 

We will be here a while longer. It's hard to be patient sometimes.