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.

When There Are No Words

I really can't write this post right now. I'm utterly exhausted, and this has truly been the most horrifying night of my life. My sweet girl had to be reintubated this evening, and it. was. awful. There are no words.

Today Bean had an EEG, a head CT, breathing treatments, and an Echo. As the day wore on, she kept sliding further and further into lethargy and oxygen desaturation. Finally, she had to be sedated and paralyzed and put back on the vent. Poor girl is just done. Minutes before she was intubated, she was reaching for me and saying, "Up!" Oh, how I wish I could have just wrapped her up in my arms and taken her away from all this hurt and back to normal.

Bean's body is struggling to void fluids. That fluid is building up in and around her lungs. After she was intubated, the doctor had to put in a second chest tube to help drain her right side. Bean's stomach and intestines are still having issues, as well. Her NG tube is set to suction because she was vomiting after being intubated.

I don't have the words to explain tonight, but I had to write something because I know so many of you are praying for Bean. Please keep praying. Our little warrior is fighting a difficult battle.

The Roller Coaster Continues

I don't even know where to start describing yesterday. This post-surgery ride has been more of an adventure than I'd hoped.

I'm staring at those two coherent sentences that I managed to squeeze out of my sleep-deprived, hospital-mom brain and wondering what to write next. My mind is much more willing to get lost in the beep, beep, beep coming from Bean's monitors than it is to form an intelligible sentence. But I'm going to try anyway. (English-major friends, don't judge me for this post.)

So...the big news from yesterday is that Bean is off the vent! She has had a few small issues with oxygen desaturation since coming off, but she's doing very well overall. And you can see her little pink lips ever-so-much better now.

The doctors took Bean off all sedation meds before extubating her so that she would be awake enough to breathe on her own. This meant she was not taking anything for pain control, so yesterday afternoon they gave her a dose of morphine for the first time. Around the time that Bean was given the morphine, she had a desaturation episode that was a little more severe than usual. Her sats dropped into the mid-60's and took a minute to rebound. 

After this episode, Bean seemed unusually lethargic. She was staring blankly for a while and then got very sleepy. Her nurse suggested that I hold her, and I was more than happy to do that. (Because, you know, it's exactly what I've been dying to do since 7:15 Tuesday morning.)

While Bean was in my arms, she was very relaxed and sleepy. Everyone assumed she was just happy to be held and was resting well. We Facetimed with Jeremy and the kids, and Bean did not seem to notice them at all. When we moved her back to her bed, she was almost completely unresponsive.

At this point, I was getting pretty concerned. Even when Bean was sedated, she had moments of lucidity where she was very much aware of her surroundings. As hard as it was to watch, it was encouraging to see her wake up and look around and fight to get out of all the wires and tubes attached to her body. Yesterday evening, she did not seem to care about any of those things.

We gave her a small glass of apple juice, which she did wake up to drink. A few minutes later, she vomited. While the nurses cleaned Bean and her linens, she was limp and quiet. She didn't respond at all to the wipes on her body or the movement.

The nurse asked the doctor to come in and see Bean. She did nothing for him: no movement, no sounds, nothing. She wouldn't respond to her name or even to the flashlight the doctor used to check her pupils. Thankfully, the doctor was also concerned. (I think I would have cried over a Let's-Just-Wait-It-Out at that point.) He wasn't sure whether the morphine or the desat episode or something else precipitated Bean's unresponsive demeanor. 

His first guess what that her body was having a hard time metabolizing the narcotics she's been given over the last few days (including the morphine). However, he said he did not want to wait and hope that was the case. He ordered a head CT to check for anything unusual going on in Bean's brain.

Seeing Bean unresponsive was so scary. My little girl is full of spunk and humor and life. Last night, she wasn't showing even the smallest spark of any of those things. The thought that her body might be recovering but her mind might not was terrifying.

Bean woke up a little when the nurses moved her onto the CT machine, and the initial results of the scan were negative. Bean was a bit more alert when we got back to the room. The doctor was encouraged by the fact that she was somewhat more alert, and he said we might just have to give her time to get the narcotics out of her system.

Overnight, Bean was still pretty lethargic. She woke up several times, but I was able to get her back to sleep very quickly. Around 7:00am, I was trying to get a little more rest on the couch in the back of Bean's room. The doctors were doing shift change and stopped outside Bean's room. The night-shift doctor started telling the day-shift doctor that Bean's CT was preliminarily negative, but the radiologist had called at 5:00am to say he saw a small area of possible bleeding.

What?!? Of course, I hopped off the couch (in my PJs) to hear more about what was going on. After a lot of discussion with the night-shift attending, the day-shift attending and Bean's surgeon, the consensus seems to be that a brain bleed is unlikely. All three doctors still feel Bean is struggling to metabolize the narcotics and anesthetics she's been given this week. Neuro is going to look at Bean's CT, just to double-check.

This morning Bean was still pretty out-of-it, but she had improved from last night. As the day goes on, she is slowly becoming more and more alert. A few minutes ago I dropped the side of the hospital bed onto my toe, and she said, "Ow!" It is more amazing than I can say to see glimpses of Bean's personality coming back.

The challenges today are managing Bean's pain without narcotics (because of her reaction last night) or ibuprofen (because her kidney function has been down just a bit). She's on a regular dose of Tylenol, but she seems a bit less comfortable this afternoon. Bean is also vomiting every time she tries to drink. She's interested in apple juice, but she's not tolerating it. Her nurse is going to keep trying in hopes she will start keeping fluids down.

Even though things are moving slowly and we've had some hurdles to overcome, I am very thankful that Bean is making progress. We almost got a few smiles today, and I'm hoping her bubbly laugh shows up very soon. Thank you again for continuing to pray and support our family.

Making Progress

I am completely blown away by the love and care that has been shown for Bean and our family over the last few days. I've gotten calls, texts, and about seven zillion Facebook messages from people who are thinking about us, praying for Bean in the middle of the night, sharing their own experiences, and just sending love our way. Family, friends, and people I don't even know at all are cheering our little heart warrior toward recovery. I wish I had stronger words for all of you than "thank you". Your love for Jeremy and me means so much, and your prayers for our baby mean even more.

Bean is hanging in there and making small improvements. Now that she is off the paralytic, she is starting to move around and wake up a little. She's still sedated so she's pretty out of it, but she's wiggling her arms and legs and opening her eyes. It's encouraging to see glimpses of Bean underneath all the wires and tubes and bandages, but it's hard to watch her get agitated and upset as she realizes what is happening. I've been ordered to leave her alone for the most part so that she can rest. As much as I want to cuddle her, it's painful to watch her wake up and struggle. 

(Jeremy had to go back to work yesterday morning, so my sweet friend Erin is here with me. She is doing an awesome job of feeding me and keeping me distracted while I can't hold my baby. If you have to be curled up on a hospital couch while your little one struggles, it's definitely better to do it with a friend who will watch Friends on Netflix and take 1,000 stupid Buzzfeed quizzes with you.)

My spunky girl is a fighter. She doesn't like being poked by the doctors and nurses or having her mouth cleaned, and she has a special distaste for the vent. When she's the most awake, you can tell that she just wants that tube out. She moves her lips and makes little choking sounds.

Bean's two biggest struggles in the last 24 hours have been with her blood pressure and temperature. The doctor would like Bean's blood pressure to stay above 70 (systolic). It's been hovering in the high 60's and low 70's. Being awake and moving helps keep it up, so they have lowered one of Bean's sedation medications. 

Yesterday afternoon, Bean had a fever over 102. They took blood and urine cultures to check for infection. The results from the blood cultures won't be back for 48 hours, so Bean is on two antibiotics in the meantime. Her fever went down later in the afternoon, but it was up over 102 again late last night. The nurse gave her some Tylenol, but her temperature continued to go up after midnight. Ibuprofen over the Tylenol finally brought it back down, and her temp is good this morning. Bean's white blood cell count is elevated, so there's definitely concern about infection. Her doctor is hopeful that the fever is still related to the stress her body has endured and all the meds, tubes, etc. it is having to deal with right now.

On a positive note, they were able to stop one of Bean's blood pressure medications this morning. Her pressures are still hanging in there without the medication. One of the effects of the medication was that most of her blood flow was focused on her core, so her hands and feet have been very cold. They are warming up a lot since the medication was stopped early this morning.

The biggest positive news is that they might remove the vent later today. The doctor has been turning down the settings so that Bean is doing more breathing on her own. Her oxygen saturations are staying up so that's a great sign. I am 100% ready to say goodbye to that tube (and I know Bean will not be sad to see it go)!

This is incredibly hard as a mama, but it has to be even harder and scarier for my baby. I am amazed at the fight in my tiny girl. Even with her little broken heart and blue lips, she was full of spunk and joy. I can't wait to see the things my little adventurer will do now that heart is whole.

The Battle Begins

Yesterday was long. It felt like we said goodbye to Bean and then waited an eternity to see her again. They took her back to the OR around 7:15am, and we didn't get to see her again until close to 5:00pm. She was in surgery for about seven hours. (Seven hours with your child in surgery really and truly seems like a million years.)

The surgeon was able to repair everything he had hoped. He patched her VSD (big hole in the bottom of her heart) and removed her PDA (extra duct coming off of her aorta). The opening to her left pulmonary artery was very small, so he used a patch to widen that. (The patch is actually a piece of the sac that surrounds her heart. How amazing is that?) He also opened up her pulmonary valve and placed an artificial flap. Her valve was very, very tiny - like the diameter of half of the top of your pinky.

So, while it's great news that the technical part of Bean's repair went so well, the anatomy of her heart  before her repair means that the blood flow to her lungs has been minimal for the first two years of her life. Picture her little heart working to pump blood through an opening the size of half the top of your pinky while the part of her heart doing the pumping has a hole in it about the size of a nickel: not good. Now that her heart is repaired and working the way that it should, her lungs are overwhelmed by the new blood flow.

After surgery, Bean's body was really struggling. When we finally got to see her in the CVICU (Cardiovascular Intensive Care Unit), the first thing the doctor said to us was, "She is very sick". Her lungs were filled with a lot of blood and fluid, and her oxygen saturation levels were low. The doctors had sedated and paralyzed her with medication, and a ventilator was breathing for her.

I don't even have words to explain how hard it is to kiss your child goodbye in the morning when she looks like this...

...and see her next looking like this.

I felt numb and scared and sad and not sure what to do with myself. Because, of course, I just wanted to help my baby. But I couldn't. (I mean, yes, it matters that I touch her and hold her hand and tell her I love her, but I wanted to fix her.) More than anything I wanted her to suddenly open her eyes and be herself again - to giggle and hug me and wrinkle her little nose like she had just hours before.

Thankfully, as the evening went on, Bean stabilized. Her oxygen levels went up, and her pressures improved. The two nurses she had last night were incredibly sweet and took very good care of her. Jeremy and I received lots and lots of messages of encouragement from people praying for our girl and thinking about our family. (Thanks to a special heart mama friend, Bean even got a super cute panda delivered from the gift shop.)

Bean had a good night and she is stable this morning, but she still has a rough road ahead of her. Several people have told us that the next few days could be a bit of a roller coaster. This morning, they are weaning her off of one med that has been helping her oxygen saturation and another that is keeping her paralyzed. As they take her off more and more of the meds, things could get rocky.

Please keep praying for Bean. Pray especially that her oxygen saturation would stay up and her blood pressure would continue to stabilize. Pray also for her little heart and mind as she starts to wake up and realizes what is happening. 

We believe that a big and strong and faithful God is with us and with our Bean, no matter what comes next.  It means so much to know that we are surrounded by people who are supporting our family with prayers and words of encouragement.  Thank you for your love for us and our baby.