But Sandwich

We’re home now, which is better than being stuck in a hospital. We get to shower and put on clean clothes, cook a meal and sleep in our own beds. We’re able to enjoy the lights on our Christmas tree and the garland stretched across the mantle over the crackling fireplace. We’ve watched holiday movies with our kids and kissed the grimy-faced little boys we’ve been apart from for more than a week.

But we’re not healthy still. Grady’s got a version of what Rosie has. Fortunately, it only affects toddlers mildly. Eli’s appetite is low and he has been a little sniffly. Not a big deal under normal circumstances but considering what we’ve been though lately, we don’t take anything lightly.

Kelley and I have both come down with probably the same thing. For us, it’s a head cold but with Rosie’s RSV in its history. We’re both getting better but it makes it a challenge to care for a baby with nasty chest congestion and breathing impairment, a toddler and a six year old with a cold and try to make Christmas memorable for them.

What you will not hear from us is complaining. No matter how challenging these days, we are glad to be at home walking though this together.

As most of you know, our family is the center of our lives. And for us, when we are apart we feel it. So to be together, regardless of what’s going on within and around us, is more fulfilling than any other option. Especially during the holiday season.

I know we still have a week or so to go before Rosie is actually cleared. She has to sleep elevated for awhile until we are certain her O2 levels stay in the safe zone while she sleeps. To do this she is strapped into a specially designed wedge that helps her breathe and keeps her oxygen where it needs to be. The problem is – she hates it. It scares her. And her voice is gone from all that she’s been through, so when she cries we don’t hear her. It’s heartbreaking, really. She wakes up alone in a contraption she can’t escape from and can’t tell us she needs us.

Best I can relate, it’s like the dreams I have where I’m being chased and can’t produce the sound from my voice to scream for help.

Last night, we put the wedge between us in our queen-size bed so that if she woke up, we’d be there with her and maybe she wouldn’t be so scared. But due to its size, Kelley and I each have less than two feet of space in the bed for our adult bodies. Which only allows for one sleeping position; I call it the coffin pose. Toes up. Hands crossed across the chest. No movement allowed. Some people may like this. It’s a bit restrictive for us.

We’ll work it out somehow.

We have become more aware recently how connected we all are to each other.

You and I.
We and them.
All of us.

Your prayers over the past ten days have been enriching, empowering and enlightening. We have begun to discover more of the richness of how our prayers connect us not only to our Creator but to the spirits of each one of you. Please know that we are deeply grateful for all the ways you have given to us. Not just the last week and a half but in ways that we are very likely unaware.

We are thankful. There is more good news these days than bad.

Thank you…

Let me begin with a heartfelt thank you to all who have taken the time to email, call and visit….when we know you’re lives are already busy with your own families. Thank you for bringing us food and for your generous gifts.

Thank you, thank you, thank you. Those words are not enough, but they’ll have to do for now.

Rosie continues to improve and we’re seeing glimpses of our sweet girl. She sits up, waves, smiles and even laughs. Those moments exhaust what little energy she has and then she’s asleep…it’s a restless sleep and she wakes often from a painful cough or an alarm beeping. But, she’s healing. And if she continues to improve, we may be able to go home tomorrow!

We ask for your continued prayers…

Rosie has not been able to keep anything down this morning. She lost 10 ounces yesterday, so we pray she nurses normally and her weight remains stable.

Please pray for my mom and sister, who’ve been full-time parents to two active boys. And please pray for our sweet boys…we miss them beyond words. We see them an hour or so each day and take them to the Children’s Harbor to play some air hockey or ping pong. They grasp our hands tightly and want to be close. Yesterday, Eli asked if mimi could stay at the hospital so I could spend the night at home with him. He teared up when I said I couldn’t, but he smiled and gave me a big bear hug and promised to see me soon.

And then I cried in the elevator on the way back to our room. No one seemed too disturbed by a weeping mom…I guess that’s a pretty common thing around these parts. Please pray for our emotional well-being. Randall and I are physically and emotionally exhausted.

Thank you. We love you all.

Lucky Clichés

Only eight more hours to go.

She’s been asleep now for two hours.

No oxygen supplements thus far.

Heart rate is within the ‘Normal’ range for babies her age.

Oxygen saturation is staying in the mid-90s even in deep sleep.

They told us that we could go home if she’s off the IV (check) and off the oxygen overnight and for 24 consecutive hrs.

Only eight more hours to go.

I’m trying hard not to get my hopes fixed on going home tomorrow. Doc told us this afternoon, it will probably be Saturday or Sunday at the soonest. Said he couldn’t imagine that she’d make it through tonight without needing oxygen. I know he’s trying to be cautious. I can appreciate that.

Just before this posting, she started having a coughing spell that lasted a couple of minutes. During all of that, her Sats never dipped below normal and her heart rate stayed strong.

We’ve learned that her Sats drop when the mucus builds up in her lungs so that the alveoli can’t exchange the oxygen, and for a moment, that little area collapses until she coughs it up or it breaks free from the wall of her lungs. We’ve observed her Sats move sporadically and this is why. We also know that because breathing slows down when we sleep that less oxygen in being taken in and lends to have lower Sats naturally anyway. Pair this with gunky lungs that don’t allow oxygen exchange and you’ve got a sick little baby.

The way they are judging whether she is well and thriving is if she can exchange enough oxygen without needing the supplement. She’s been kicking some RSV butt all day since taking her off the oxygen and the IV at 8 AM Thursday morning.

Only eight more hours to go.

So… here’s hoping

Or maybe… knock on wood

Or… keep your fingers crossed

Oh… Lord willin’ and the creek don’t rise (personal favorite)

Anyway. Doesn’t matter. We’ll know for sure in the morning.

Turning Corners

A few milestones from the past 18 hours:

4:00 PM — Got to go get our little baby girl ready to move from SCU.

5:00 PM — Moved to Private Room (in a new wing, three times the size of our original room, with windows that actually display the activity of the city rather than the flat static of a workroom closet)

6:00 PM — Rosie noticed the city lights and started ooing and pointing. The moment didn’t last long but I caught on video (thank you, iPhone) and will share the moment with you exclusively for our Facebook followers later today.

7:00 PM — Enjoyed Qdoba for dinner (it’s a small win, but it’s still a W).

8:00 PM — Tried giving Tylenol by mouth. She fought us most of the way and finally puked it all up. Back to the torpedo. (So, I count that as a partial victory.)

9:00 PM — Had to call the doctor because her heart rate was dropping to the point the alarms were going off. The win here is that he actually showed up, and rather promptly.

10:00 PM — Sleep.

1:00 AM — Awake.

[This pattern repeats for awhile. But at least we’re together in a quiet(er) place.]

8:00 AM — Doctor makes his rounds.

• takes her off oxygen (for now)

• takes her off IV

• takes her off monitor while she’s awake

• ordered EKG to check heart patterns following last night’s event.

9:00 AM — Real coffee (that one’s for me alone, I guess).

We’re moving in the right direction.

Call and Response

The thing about friends is they get things done when you need them the most.

This morning we initiated the call for prayer that we’d be able to get Rosie in a room today.

We told you we were blocked due to what they call a High Census Alert.

Strike One.

We have a friend who coordinates all the room assignments but she’s on vacation until after Christmas.

Strike Two.

All the staff here was telling us that it usually takes a couple of days to get a room once you’re placed on the waiting list; and remember — High Census.

Foul Ball down the Right Field Line.

I heard from many of you how sincerely you were petitioning, begging God to provide.

I’m happy to tell you that at 3 PM today as we were playing a stickless game of pool with the boys, a nurse from SCU called to tell us that at 5 PM today we will be transferred to a private room.

Kelley and I almost dropped to our knees in relief when we heard the news.

Ah. Energy. Renewed.

A Little Bit of Good News

She did better last night.

Still not checking out of Hotel Children’s any time soon but this sickness is getting further and further behind us.

Doctor came by this morning and felt like the reasons we moved her to SCU have all been relieved and believes she could safely be moved back to a private room. However, as of 9 AM today there are no vacancies anywhere in the hospital.

So, for all of you who are offering prayers, here is our immediate request.

We need to get Rosie out of SCU and into a private room where we can provide for her more readily.

She is not comfortable here and neither are we. The visiting schedule is so fragmented that sleep hasn’t come easily for any of us. Kelley and I did trade off a bit of sleep last night and this morning. But it would be so beneficial to get us all back on a more regular schedule.

So, if you’d like to pray for something specific, we want to move into a private room today. To do that, someone(s) will have to be discharged; add them to your prayers as well.

We love you all so much. Thank you again and again for the letters, emails, comments, re-tweets, texts, gifts, food, coffee, hotel room, clothes, prayers, visits and conversations.

There is no unit of measure to quantify the love and appreciation we feel toward each of you.

Your support is our strength.