It’s Difficult to Breathe

It’s been a very tough weekend for us. We appreciate the extensions of love and care. But it is painful to tell the story over and over again so we thought we’d share it here and invite you to read it.

While Randall was in Guatemala, Kelley made an exciting discovery. Something to the tune of six pregnancy tests confirmed that we were having a baby. I came home from Guatemala and found a wrapped gift waiting for me that contained a tiny baby onesie that read, “3 is for quitters!”. We were thrilled. Shocked, but thrilled. And, after a few days of secret keeping, we decided we were just too excited to keep quiet and shared the news with the kids (who were ecstatic) and our families.

The week went on. We immersed ourselves in baby prep – apps, websites, magazines, etc. – started talking about names, discussing where we’d deliver. Weird cravings, nausea, newly-pregnant-mommy stuff… The kids would kiss the baby goodnight and tell everybody how they weren’t supposed to tell anybody about the baby yet. Rosie’s famous line was, “I can’t tell you that my mommy’s gonna have a baby.” She’s not great at keeping secrets, but then again… no female in this family is.

The last couple of pregnancies have started with scares. Spotting. Emergency room visits fearful of tragedy. Both Grady and Rosie are here despite those moments. They were able to fight through to become healthy babies. Eli too. His life was in peril before he came into this world, as most of you know. We are so grateful for the health of all of them.

Midway through the week this week, the spotting started. We kind of expected this. But it continued to get heavier. And on Thursday it became concerning. We had friends coming in town. As soon as they arrived, we left our kids with them and met the doctor at the hospital to see if we could get some insight into what was happening. The ultrasound showed a little blood in places there shouldn’t be blood. But really, it didn’t show what we were looking for. Which was a tiny little baby. Kelley had some bloodwork to check her levels of pregnancy hormones. The doctor called us later and said her level was 33, which was low. Very low. We knew we were losing the baby.

Our amazing friends stayed the weekend. They cooked dinner. They played with our kids. We sat around a fire, listened to music, drank beer and soaked up the time spent with our dear friends. Kelley was sick all weekend. Friday night was the worst of it. She had intense labor like pains (I guess it was labor). But we held out hope that the follow up bloodwork would show a miracle.

We went to church this morning, which was difficult to say the least. Not many people knew what was going on but it was obvious that we were sad about something. We weren’t ready to say anything until we had gotten the results from the follow up labs. But Kelley knew this morning when she woke up that things had changed. She recalled not feeling pregnant anymore. And this afternoon, the test results confirmed it… we’d lost the baby.

We told the kids that sometimes babies are sick. So very sick that it’s better for them to go on to Heaven. And even though it’s sad for us now, because we wanted to meet this baby and to hold this baby, we get eternity together in Heaven, reunited with our Father.

Eli took it the hardest. We wondered if we should’ve told them about the baby. But, here’s the thing. This baby is a part of our family story. We can’t ignore it. Life is joy and sorrow. Today our family was reminded that our Father is the great comforter. That he is able to reach into our darkness and pull us from the depths.

I’m not real sure where we go from here. We don’t know how to feel. Overwhelmed, for sure. Feels a bit like drowning. Like in ‘How He Loves’… if grace is an ocean, we’re all sinking. It’s difficult to keep breathing some moments. Partly due to the pain and mostly under the influence of the love of our Father.

Over the next few days we’ll be taking some time as a family to begin healing. If you find yourself in a moment where God brings us to your mind, take a second to pray for peace and that Kelley’s body heals without the need for surgery.

We love you very much. We are thankful for your concern and care for us and for your sacrificial love for us, especially to Jeff, Jodi, Beth, the Grove Elders, Dr. and Mindy Castor, Kari and Mitch, the band and our families. You are special to us and we are grateful.

Don’t Freak Out

We had our follow-up with the doctor today.

Everything is looking pretty good. She’s lost a little weight but she doesn’t seem dehydrated. We’ll need to follow with him again in a week to be sure she isn’t still losing weight. She still has a little junk in the upper portions of her lungs but she’s responsive, active and eating well.

The company I work for is amazing. One of the provisions of my benefits package is that I’m allowed time away to be with family in times of illness or other extended family emergencies (like this one). I have some paperwork to fill out. To this point the papers have moved between my agency and the doctor’s office. I got the papers from the doctor today but before he handed them to me he said,

“Don’t freak out when you look at these.”

Mmhmm…

There’s a portion in the documentation that asks the official opinion of the medical provider whether he thinks this condition could worsen. He says she could still have episodes of wheezing that, at its worse, could require CPR.

Well crap. Thanks for that confidence boost, there doc.

What else am I supposed to do with that other than freak out?

C’mon, man. Really. Haven’t we had enough drama? Let’s take a little break.

It is very rare that this could happen. But he wanted us to be aware. The best way to prevent this is to keep her away from any allergens; no pets, no mold, no dust, no smoke – no matter what. Or she could relapse.

Duly noted.

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The boys and I went and finished up our Christmas shopping for Kelley this afternoon. They both grabbed the same thing at the same time. It’s pretty cool. I took it as a sign that if they both picked the same thing it must be right. So we got it. I think she’ll like it. They have pretty good taste.

Presents to wrap and cookies to bake and decorate. Merry Christmas.

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.

Finally…

We’re going home!

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.

Prayers

First// let me say a very broad and widespread ‘thank you’ to each of you around the world who have spoken Rosie’s name in a prayer.

For you, let me be the first to tell you that she is showing some improvement. This morning, the doctor had a brilliant hypothesis based on the two things we know for certain; she has RSV and she had a metal scope in her lungs. The RSV, being a virus, has no cure other than waiting and no treatment besides oxygen. The aggrivation from the scope though could be contributing to the labored breathing Rosie has been experiencing. He ordered a steroid shot for her and about an hour later she was exhibiting noticable improvements.

Now, she is by no means all better but there is no doubt she is improving.

I know there have been countless Pray-ers authoring petitions to heaven from all points earthbound. I know of a parish in Des Moines. A hamlet in San Francisco. Urban neighbors in Raleigh. Townships in Virginia, Pennsylvania and Delaware. And those are just the ones from the past 24 hours. The outpouring has been encouraging.

Our next request is that we get moved back out of Special Care Unit (SCU) and into a room tomorrow. The doctor is hopeful after checking in on her this afternoon that we’ll be out of SCU and into a private room again by morning. She is not fully recovered but getting through tonight without incident and with continued improvement will move us back into a room and back on track to her recovery.

So, again… thank you, each of you for all your prayers.

Next// I’d like to invite a bit of interactivity. I’ve talked with some of you at different times regarding prayer. And just about everyone had a different perspective on the reasons and the methods and the benefits of prayer. Some say, ’It’s easy. Just as natural as conversation.’ Others say, ‘Prayer is a way to bombard the gates of heaven and fight against the evil forces of hell.’ And still some say, ‘It is the opportunity to participate in something larger and beyond ourselves.’

Prayer, at times seems so logical. And at the same time so mysterious it refuses logic.

So, I’d like to put it to you//

What is prayer to you?

Why is it important to pray?

What are the benefits of prayer?

Love you all.