What A Week

Sunrise-and-Clouds

Last Friday night we took a ginormous leap for our family and submitted our preliminary application for a baby girl that Kelley found out about through an organization that helps match parents with waiting children who have Down syndrome. You can read a little more about that here. Saturday morning we woke up with plans to go to Busch Gardens with some friends, excited to share the news of this baby girl. I looked out the second-floor window as I was getting some clothes for the kids and realized that our car was missing. I ran downstairs thinking maybe I’d parked it down the street and just forgot. I got outside to realize that indeed our family car had been stolen. We had both sets of keys in the house and our car was gone. Kelley and I both looked at each other because we had no words. I called the police. I called the insurance company. I called the bank. We texted some friends. And then I sent a message to a couple of friends of our who are police officers in our city.

I’ve really had to fight back being angry at this thief. I haven’t done a great job at it. What really got to me was what he took from our kids; their security and safety in our home. They felt fearful.  “Why would somebody do this,” they’d ask. We don’t know. But, what we can say is that when we let these things distract us — fear, worry, anger — specifically anger over replaceable, temporary things, those things begin to control the conversation. We knew we couldn’t let the gloomy story of our car getting stolen overshadow the beautiful, bright story unfolding with baby Adina.

All weekend we wanted to point the conversation to this little girl. Stay focused on praying for her. The police and others involved will take care of the car. We need to focus on Adina. We prayed for her all weekend that God’s presence would be tangible wherever Adina was. That she would feel God’s loving presence. That He would guide her caregivers, the nurses and doctors, and that this little girl would know she is loved and wanted, and we prayed that we’d hear from the agency on Monday.

Monday came and went with several automated responses from the agency. We were granted log in authorization and were able to view more pictures of this beautiful baby girl as well as her limited medical records. But, we never spoke with a live person and waited eagerly to hear specific news of Adina. We received several phone calls Tuesday. The first from our local agency office, calling to invite us to meet with them next week and they gave us an overview of the process. We were also given more forms to fill out. Later in the day Kelley received a call from someone on the ‘China 180’ team. She (enthusiastically) reviewed the information we already had and promised to be in touch with additional documents we needed to sign and return to her ASAP. Kelley and the kids were in the middle of a tea party when she was copied on an email sent to the ‘China 180′ team. In the email our intake coordinator shared that she’ d spoken with Kelley and that Adina was still available!

So what now? We passed the preliminary application and were invited to fill out the formal application (which will be completed in the next hour and submitted to the agency). There’s still lots to do and we’ll do our best to keep you updated here and on Twitter and Facebook. But what we want you to know is that the most important thing we ask of you is to pray, because prayer connects us to each other in ways that we can’t always know or perceive. Specifically, we are praying that her medical issues are stable until she can receive specialized care and that we can move through this process quickly, because if Adina is in fact the baby God has for us, we want to bring her home NOW. It’s painfully difficult to think that our baby is in another country and we can’t see her, talk to her, hold her, care for her…  So please pray!

We believe that the family is a picture of what it’s like to live with God – to be nurtured and cared for, provided for and protected by God. Our prayer is that every child has this. We are grateful for good families that loved us, loved each other and loved God. We don’t take that for granted. God has called us to define family as more than just biology and to open our arms and hearts, just as He did for us.

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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.


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.

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.

We’ve Moved

She didn’t really improve last night. She was on oxygen all night and stayed stable. But there was no improvement. And really her breathing became more and more labored throughout the night. And she’s still throwing up constantly.

So, we’ve been moved to the Special Care Unit. Which is good for her and for her recovery but it is hell for Kelley and I because we aren’t able to be with her except for spotty times throughout the day.

She’s so pitiful right now. And there’s nothing that we or the doctors and nurses on our floor have been able to do to make her better. All we can do is make our best efforts to comfort her.

It’s emotionally wrenching.

We just handed off our little baby girl to a group of strangers as they walked behind closing doors while we are forced to sit in a waiting room with strangers huddled up in make-shift beds of paired-up chairs, hiding under blankets and coats waiting to hear something good.

A doctor just came out to have a conversation with another parent about her RSV stricken child. His words to her: “He should get better.” Really? Should? That’s not what I want to hear.

Oh, wait… they’re calling us back.

Okay, so here we are.

Now that the dust has settled, maybe I can boil it down to something a little easier to digest.

Friday’s incident with choking on the french fry seems to have been just that – incidental. I remember hearing her rattly breathing when I was rocking her to sleep Thursday night. I didn’t think anything of it at the time. Maybe she was getting a cold but certainly my mind didn’t go to this extreme. What seems very feasible is that she was starting to be affected by the onset of what we now know is RSV.

A little cough here + hard piece of french fry = stuck in her throat, unable to breathe. Heimlich. 911. Firetrucks. EMTs. Panic. Calm. Go home. Frantic. ER. Panic. Scared. Admitted.

Waiting…

Major Freak Out on Shuffle and Repeat…

Finally though, we think this is making some sense.

If she was beginning to feel the effects of RSV, it’s likely the coughing caused her to get the fry lodged in her throat. It is possible she aspirated some. But it is more likely the fluid in her lungs was from the RSV and not the remains of an aspirated potato. (Still unclear where she picked it up, but that’s not really important at this point.) The RSV takes about 10–14 days to run its course and if in fact she started being affected by it on Thursday night, we’re right now sitting at the dawn of day five. Doc says it may still get worse before it gets any better.

Tonight, we had a dear friend visit. It’s always an honor to get to talk with him. While we were talking, Kelley looked down at Rosie and found that her IV had blown and her left hand and forearm were swollen to almost twice their usual size. The nurse was called, who then called the IV Specialist. Poor guy had done 14 of these already today and the last two apparently gave him quite a fight. You’d have never known it until afterward. We only knew it because he told us after the fact. He was amazing. Nerves of steel. You could tell he was relieved to have completed this one.

I was holding her after the new line was in and she felt so warm. Too warm. And of course, her temp is back up to 101. Good news is her heart rate is normal tonight. And the doctor just came by to visit. We were afraid he was about to tell us we were going to have to let him take her to the step-up care unit. He did not. He said, “I think she’s doing best when you guys are here to comfort her.” Smart doctor. Of course, if she were to need better care, we and the staff here wouldn’t hesitate to provide that for her.

But for now, here we are.