A Little Glimpse of Our Normal

We busted out of the hospital Monday evening. (Does Bean look happy to go, or what?)

Since then, we've been quickly settling back into a slightly pinker version of normal. 

On a random side note, I tried to get before-and-after pictures that would really show the difference in Bean's coloring, but nothing turned out quite right. Before surgery, she was so blue that people would ask me if she'd been eating berries. In fact, two of the nurses in pre-op wanted to know if she'd had a blue or purple sucker. Check out the color of her fingers next to mine in this picture.

So, what does normal look like around here?

Well, normal looks like stealing big sister's shoes.

Eating - not just one but two - welcome home cakes from Dairy Queen (because Bean's super loved like that).

Dressing up. (What girl doesn't need a sparkly cape?)

And taking walks with big sis and two pirate-ninja-superhero-astronaut guys.

All in all, things really are mostly back to normal around here. Bean is having a little trouble sleeping, but that is certainly understandable considering the way her nights have gone for the past two weeks. I can totally empathize. When I was up with her at 1:00am this morning, somehow the reality of standing next to her crib rocking her was all blurred together with a dream of being next her hospital bed and trying to hold her without tangling the wires going to her heart monitor.

We've had a lot of help getting settled. I'm very thankful that Jeremy and my parents worked so hard to keep the big kids in their routine. I'm also incredibly grateful for all the prayers, love, and words of support that we have continued to receive even now that we're home. The meals (and the ice cream cakes) have been a delicious blessing, as well.

After the craziness of the past couple of weeks, this mama couldn't be more excited about a little bit of normal.

Trying To Find The Words

Exactly two months ago, this sweet girl officially became part of our family.

Exactly one week ago, I sat curled on a couch in the CVICU and wrote this post. I was exhausted and scared and brokenhearted. My baby girl was so, so sick. Her body was overloaded with fluid, and her liver was struggling. The doctors had reintubated her and inserted a second chest tube. As I sat down to write, all I could think was, I don't have words for this.

And now, seven days later, I'm once again sitting on a hospital couch searching for the words to convey what my heart is feeling. This afternoon I held Bean in my arms while she slept. All the tubes and wires are gone now; her little body is working just fine on its own. As I rocked her, I looked up at the monitors. Her oxygen saturation was 97%: no vent, no cannula, just my baby's heart and lungs filling her body with a normal level of oxygen. 

What a beautiful sight.

Yesterday morning, we woke up in the ICU; now the doctors are talking about sending us home. I am so thankful for where we are today, but we couldn't have gotten here alone. Last Saturday, I was spent. When I woke up Sunday morning, I think I was crying before I opened my eyes. And I wasn't even the one fighting the hardest battle. Bean's little body had been through so much and was still fighting hard.

What I don't have the words to express is how, when our family was hurting and broken and scared, you carried us. Over the last two weeks, we have been utterly overwhelmed by the outpouring of love and support we have received from our family, our friends, our church, and even complete strangers. People have written notes, brought meals, watched our big kids, listened to us cry, called at the right moment, driven hours to be with us, and prayed like crazy for our Li'l Bean.

Two months and one day ago, our baby girl woke up in a orphanage. Today she is more loved than I could ever have imagined. And as much as I want my girl to grow up with a whole heart, even more I want her to grow up knowing the heart of Jesus. What we've experienced the last two weeks has been a breathtaking glimpse of the kind of thing that my Jesus does. He brings family to the lonely. He gives strength to the weak. He carries the brokenhearted. He sends his children to love the hurting.

And I don't have the words for this. I don't have the words to express the beautiful love that has been poured out on us over the last two weeks. I don't have the words to express my gratitude to all of you. I don't have the words to tell you what it's like to see my baby coming back to me. 

My heart is so full, and I just don't have the words for all that I'm feeling. But, even though any words I write just won't be enough, I want you to know that I'm incredibly grateful. You have shown our family and our Li'l Bean what it means to be loved and to be loved well. 

My ICU Top 10

Today is Day 11 in the ICU, and I'm starting to feel like I live here. (Yes, I know that I'm being a little hyperbolic. There are parents who spend months here. They are pretty much rockstars in my book, because I'm already daydreaming about grabbing Bean's IV pole and making a run for it. But then there's that oxygen tank...) So, in an attempt to keep looking on the bright side, here's my list of the 10 Best Things About Living In The ICU.

10. I can drink as much coffee as I want without feeling guilty. Because when you sleep in a room filled with beeping and IV alarms and people wanting to bathe your child at 4:00am, you totally deserve that Frappuccino. Right?

9. There's an unlimited supply of free jello. Okay, so I don't actually like jello all that much. (If a food bounces, it's really not meant to be eaten.) But this could be a big plus for someone.

8. Hhhhhmmmmm...not really sure what to say here, but I need a #8. The 9 Best Things About Living In The ICU doesn't sound quite right. Let's just pretend my sleep-deprived brain couldn't count all the day to 10. (See, my sleep-deprived brain can't even spell the word way, so how can I expect it to count?)

7. It feels a little spy-ninja-esque to need a secret code to get in and out of the unit. (Although it might be a little less ninja-like to show up at Starbucks wearing the giant orange tag that lists Bean's code. Not saying that I did that or anything.)

6. The food

5. What extrovert doesn't want to meet a new friend every 12 hours? I have to confess, sometimes I wish some of my new friends would stick around longer or at least come back every day. (We've had 18 different nurses since we've been here.) On the upside, after eleven days we are getting to the point where some of our old friends come back to say hi, and that's pretty fun. The nurse who was here on that awful 4th of July night came to visit Bean yesterday. (I'm really amazed that he voluntarily came into the same room with me again. He has to be convinced that I'm a little cray-cray.) He was lucky enough get a high five and a wave from Bean instead of the evil eye that she's been giving most people in scrubs. 

4. There's an amazing team of medical professionals taking care of my Bean. Every morning, her room fills up with people who stand around discussing her care. Even though I might not love the demeanor of every single doctor, I have felt 100% comfortable with all of them from a medical standpoint. The attending doctor this week is board certified in pediatrics and cardiology. I'm not sure exactly what that involves, but I'm pretty confident it means she's incredibly smart.

3. Someone else does the laundry. I <3 this one. I wake up in the morning, take a shower, and then pop my sheets and towels into a big blue bag. When I'm ready for clean linens, I just ask for more. If only it worked this way at home...

2. I think both nurses and teachers tend to be an itty-bit obsessive, because these nurses have done so many things to make my former-elementary-teacher heart so very happy. I had one nurse who started her shift by wiping down the entire room with disinfectant wipes and then cutting the IV labels into perfect squares. I promise I only told her once or twice or 17 times how much I loved her.

1. Every day we spend here, Bean's heart is getting stronger and stronger. When we go home next year in a few days, my sweet girl will be healthier, more energetic, and oh-so-much pinker. And that makes every single long day or rough night totally worth it.

Still Here In The ICU...

We're still here in the ICU. Bean probably could have been transferred to the Step-Down Unit today, but her team decided to wait until tomorrow. Thankfully, instead of taking meds and doing breathing treatments and scaring me to death, Bean is mostly just chillin'.

I can't wait to get home and have our family together again (I so need to squeeze my boys), but right now I'm pretty content with watching my baby smile and suck her thumb and get a little stronger every day. I know I've said this a lot, but your prayers and love and support have meant so much. My baby is blessed to be so loved.

Birthday Wishes

My beautiful seven-year-old birthday girl got her wish today: an afternoon at the hospital with Bean.

This mama got her wish, too; my sweet girl is off the vent and smiling. 

What more could we wish for?

One More Day

Today has been quiet. Bean is still sedated and on the vent. Her chest x-ray this morning showed some fluid build-up in her right lung, so the doctors felt she wasn't ready to be extubated. Because of the way Bean's heart and lungs are functioning right now, her right lung is doing 90% of the work. This means that when there is fluid on that side, her oxygen saturation really takes a hit.

I had a quiet day, as well. My amazing college roommate has given up four nights at home with her sweet boys to support me through this crazy time. (I should probably throw in a little shout out for her amazing husband who is at home with those three sweet boys. You rock, Mark!) We've been eating chocolate and trying to laugh instead of crying and watching girl movies with Bean. (It's totally acceptable to let your two-year-old watch romantic comedies while they're sedated, right?)

One of my heart mama friends told me to be thankful for each day that passes because it gets us one day further from surgery. Whether it's a challenging day or one where Bean makes lots of obvious progress, it's twenty-four more hours that her body is healing and adjusting and getting stronger. I'm working hard to remember that on days like today when it feels like we are just stuck in a holding pattern.

Bean was more alert for a while this evening. Her respiratory therapist, a super sweet girl named Ellen, was here on Saturday when Bean had to be intubated. Ellen walked in tonight to check on things. Bean took one look at her and burst into tears. I don't know whether Bean has memories from Saturday or she just didn't want one more person messing with her, but her response was heartbreaking.

Seeing your child cry on a ventilator is pure torture. They can't actually make any sounds, so their face just scrunches up and the tears start streaming. Moments like this are by far the hardest part of being in the hospital with Bean. I know she is just done with bandage changes and vitals checks and breathing treatments and the awful vent. I am done for her. 

But, since I can't scoop her up and run for the elevators, I'll keep giving her kisses and whispering that I'm here and praying she gets stronger soon. I'll hold her little hand and put bows in her hair and remind her that she is loved. And, when it's time for me to curl up on my hospital couch/bed, I'll be thankful that we've made it through one more day.

Two Little Warriors

We had a much quieter day today. Bean was sedated and slept most of the day. Her fluid levels came way down, and she looks much less puffy tonight. They were able to start feeding Bean through her NG tube, and she did not vomit at all. It looks like they may be able to take her off the vent tomorrow. I am so thankful that it was a restful day for both of us and that the doctors feel she is moving in the right direction.

Bean's amazing surgeon, Dr. T, came to check on her this afternoon. (I'm pretty sure he sleeps somewhere between the OR and the CVICU...if he ever actually sleeps.) He said Bean is taking longer than he expected to adjust to her new bloodflow but that the setbacks she's been facing are not surprising him. Part of Bean's challenges stem from the fact that her surgery is a year-and-a-half overdue. Her body has had two years to learn to function with a broken heart; now it's having to learn all over again.

Dr. T has operated on children all over the world. (Apparently his idea of a vacation is doing heart surgeries in Africa and the Middle East and Ch*na; I kinda' love him.) He said that on these medical trips he has successfully repaired Tetralogy of Fallot (Bean's condition) in children as old as six. He went on to explain that he feels the children who survive surgery at that age do well because children whose TOF was severe enough to cause major complications have already passed away.

He went on to say that Bean had probably the worst blood counts of any child her age with TOF that he has seen. Her red blood cell count was through the roof because she kept making more red blood cells in an attempt to get enough oxygen to her body. If I understand him correctly, her body was basically trying to make super oxygen-concentrated blood since so little blood was getting through her tiny pulmonary valve to her lungs. Bean is one of those little ones who probably wouldn't have survived to the age of six.

Hearing this hit home so hard. Bean was getting no cardiac care in Ch*na. No surgeries. No tests. Not even any medicine. My baby might not have lived to go to kindergarten. While I truly believe her caregivers loved her, she needed life-saving medical intervention that they were unwilling or unable to give. I knew all this before, but hearing Dr. T explain the true gravity of her condition was very sobering. 

I am so thankful that my little one made it home in time. I'm thankful that we got her file right away. And I am crazy thankful for the amazing group of people who helped us expedite our adoption process.

But I can only be thankful for a moment before I am heartbroken. My precious, spunky, beautiful baby girl was dying in Ch*na. How can I not instantly stop to think, How many other precious, spunky, beautiful children are dying without families? 

One of these children has absolutely stolen my heart, and I'd like you to meet her. I would be thrilled if you would help me find her mama, her daddy, her chance to be healthy and loved and treasured. This is "Juni".

Isn't she lovely?

This sweet girl stole my heart the very first time I saw her face and read her story. Juni has a broken heart like my Bean, but her condition is even more serious. She has been on our agency's waiting list for two months, and she still doesn't have a family.

I'll be honest, Juni probably has a rough road ahead of her. Her heart condition will require multiple surgeries that will probably only be considered palliative. But I serve a God of miracles, and I'm praying for a miracle for Juni - whether that miracle is a healed heart or the love of a family or both.

I don't even have words to say how grateful I am for the amazing army of people who are loving and cheering for Bean from afar. My phone dings all day long with Facebook messages and texts from people saying they are praying for our sweet baby. This girl is loved. My little warrior has an army behind her in her fight. Juni needs an army, too.

I would love it if you would extend your prayers to include this sweet little pixie. Please pray that her family would find her and that she would be able to quickly get home to medical care. (I asked Bean before I wrote this post, and she says she's happy to share her army of prayer warriors.) I have lots of information about Juni, including a super cute video. Please comment here or on Facebook if you'd like to learn more about this cutie.

Thanks, friends. You're the best.