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.

She Has My Heart

At bedtime last night, I laid down next to Bean. I put my hand on her side, over her aqua-striped zebra pajamas, and let it rise and fall with her little breaths. Holding a sleeping child is one of my favorite mommy moments, but all I could think about last night was what is going to happen today. As I snuggled with my baby, and her heart beat under my hand, my thoughts kept coming back to the fact that there will be a time this morning when the surgeon has to stop that precious beating. I lay there wondering how other moms have managed to get through days like today.

When we read Bean's file and decided to say yes to adopting her, it was easy. Truly. We knew she had a pretty complicated unrepaired heart defect. We knew there were unknowns. Of course open heart surgery sounded scary, but it just made sense to make Bean part of our family. We earnestly desired another little one. (Li'l Miss and Daddy were both crossing their fingers for another girl.) Bean was waiting. She needed medical care we were fully capable of providing, and she wasn't getting the care she needed in her orphanage. See? Completely logical.

But all that was before. 

Before this girl let me see her smile.

Before I ever brushed her hair into tiny pigtails.

Before I heard her sparkly, oh-so-contagious giggle.

Before she broke Daddy's hard-and-fast No-Kids-In-Our-Bed rule. 

("Broke" is a definite understatement here. "Shattered", "destroyed", or "obliterated" would be a much more accurate verb choice. Like he often suggests we "just let her sleep with us tonight". People, who is this guy?)

Before I knew that this sweet face was hiding a whole lot of spunk with a big dash of ornery.

Before she was ours.

Before I never stopped to think, what if this is the last trip to the zoo or the last picture of all four of my kids or the last chance to hold my baby? What if this is the last kiss? I never squeezed family pictures into our crazy schedule because the idea of not taking one was just unthinkable. I never held onto every. single. day. with quite the same desperation because what if 51 days had to be enough?

It was easy before, but I'd be lying if I said it was easy now. Open heart surgery sounds like a thing. A surgeon cutting open my baby's chest and trying to fix her broken little heart sounds like something completely different. Cardiac care sounds necessary. Letting a nurse carry my tiny girl away from me, knowing she's about to be so scared and so in pain and so close to the line between life and death sounds impossible.

What Have I Done?

I have let myself fall recklessly, dangerously, and completely in love with Bean. I have let her blue little lips kiss mine and her blue little fingers wrap around my heart until there's no letting go. There's no more before. And even if there were, there's no undoing my crazy mama love for this tiny girl.

A long time ago, in what seems a bit like a dream, I used to believe that the good life was easy. I used to wish for the smooth road and the calm sea. But then God brought me peace beyond measure in the valleys. Then He gave blessings I could never have imagined while my heart was shattered. Then He taught me that the greatest beauty and the deepest love do not come without risk. And they are not easy.

And so I sit here in the Family Surgical Waiting Room while a doctor opens up my baby's chest and puts stitches into her itty-bitty heart. And I am thankful. Thankful that I've had the chance to fall over-the-moon, wreck-my-heart, crazy in love with Bean. Thankful for little arms that have squeezed my neck and a little voice that has wished me "nigh-nigh" and little fingers that have wrapped around mine.  Falling in love with this girl hasn't been easy or smooth or painless, but it has been beautiful. And it has blessed my heart beyond measure.

And here, right in the middle of crush-my-heart hard, I know beyond a shadow of a doubt that I would do it all over again. Without a moment's hesitation, I'd say yes again. I'd choose to love this girl again. And whether I have one more day, or one more month, or one hundred more years to hold my Bean, she has my heart - totally, unabashedly, without a second's thought of before.

Heart Cath Day

Bean had her heart cath on Friday. She and I loaded up shortly before 9:00am and hit the road. I was a little nervous about the 2-1/2 hour drive because Bean wasn't allowed to eat. (Driving a stick while trying to stealthily drink a Frappucino with your left hand is not easy. Just FYI.) Thankfully, she fell asleep about halfway there and slept all the way to the hospital.

We registered at 11:30 and headed up to pre-op. We got through all the initial stuff (height, weight, getting into a gown, etc.) quickly. Unfortunately, they were running behind in the OR so we ended up with almost three hours to kill. In an effort to keep Bean's mind off of the food she wasn't allowed to eat, we got creative.

We took selfies...

...circled the unit about 214 times in this cute little car...

...and got hand sanitizer out of every. single. dispenser. on the floor.

Miraculously, we survived the wait without either of us having a meltdown. Just before 2:00pm, I got to meet briefly with the surgeon and the anesthesiologist. They were both super nice and very willing to answer questions. When it was time for Bean to go, the nurse wheeled her and lovie away in the little car. It went much more smoothly than I had imagined.

I had been told to expect the procedure to last 2-4 hours, but the doctor came out to meet with me after just over an hour. The results were very positive: Bean's left pulmonary artery is connected and most of it is a good size. There is a small area that is stenosed (constricted) and will have to be repaired during her surgery.

(On a nerdy side note, the doctor was able to show me video of the cath. He pulled up two views of Bean's pulmonary artery, and I got the watch the dye flowing up the cath and through her arteries. It was pretty incredible to see her little anatomy in action.)

Bean does have one defect that was not in her original medical records. It's a small duct attached to her aorta, called a PDA. From what I understand, this is a minor issue and will be easy to remove during her surgery on Tuesday. I will have more details about the surgery after pre-op tomorrow, but the doctors have talked to me about doing three things: removing her PDA, patching her VSD (a large hole between her left and right ventricles), and widening the opening to her left pulmonary artery.

I got to hold Bean for a few minutes in Recovery. She was already awake when I got there and pretty relaxed (probably thanks to the meds). She drank a little apple juice, and then we headed to the cardiac floor. Her she is, wrapped up in the adorable elephant blanket the nurse gave her.

By the time we got the floor, it was shortly after 5:00pm. The surgeon was hoping we'd be able to leave around 8:00pm. It was nice and quiet, and I got to hold Bean (and all her many wires). She drank tons of apple juice, nibbled on a grape popsicle, and then fell asleep in my arms for a long time.

Around 7:00pm, Bean's dinner arrived. She was not interested. She kept shaking her head and pushing the food away. The nurses said she needed to eat before we could go, so I continued to offer her food. She wanted nothing to do with it.

About five minutes later, Bean puked. This is probably TMI, but I think she puked about 7 gallons of apple juice dyed grape-popsicle purple. She was soaked. Her cute blanket was soaked. I was soaked. (Right about now I realized I shouldn't have left the overnight bag in the car.)

So much for going home at 8:00.

After Bean puked, her oxygen saturation levels started to get wonky. Her sats were at 74 when we checked in. They started dipping into the mid-60's. (For reference, normal saturation levels are 95-100. Bean's are usually in the 70's.) The nurse got worried and put her on oxygen for a bit.

From 8:00 - 10:00pm, we watched Bean's sats and tried to get her to eat a little so we could go home. She finally ate a little carton of ice cream and kept it down, but her sats kept dropping into the 60's. The doctor doing rounds said he wanted her sats between 75-85. Since she'd only been at 74 when we checked in, I felt he was being a little unrealistic.

Shortly after 10:00pm, the doctor finally came to see Bean. At this point her sats were in the low to mid-70's, so he decided she looked okay to go home. We went through the discharge process and headed to the car. We walked out of the hospital into a monsoon. Seriously. It was raining SO, SO hard.

The drive home could fill a whole other blog post. The short story is that we got home safely around 1:15am. Bean slept the whole way, while I tried to navigate the weather and ignore the fact that my underwear were still soaked in puke.

We are so thankful for the good news about Bean's heart. We head back to the hospital tomorrow afternoon for pre-op. Jeremy, Bean, and I will spend the night near the hospital, so we can head back Tuesday for surgery. I will post the details about the surgery as soon as I have them (probably tomorrow evening).

Thank you so much for your prayers, love, and support for Bean and our family. We appreciate it more than you know!

Just 7 More Days

Wow, our life has been a whirlwind since we got home last month. I have completely failed on my promise to post an update on Bean's heart. We are now just seven days from open heart surgery. Craziness! But I'll get to that in a minute. First, here's a little sneak peek into Month #1 as a family of six.

Last fall we booked a Florida vacation with an amazing organization called Pastors' R&R. Their mission is to provide time in a vacation home - free of charge - to families who serve in full-time Christian ministry. (If you're in a nostalgic mood, check out this post from our last vacay with Pastors' R&R. Li'l Miss looks ssssooooo tiny!) When we booked our vacation for this June, we thought we'd be starting our adoption at the beginning of this year (which we did) and traveling this fall (not so much). 

I have to confess that there were a few thousand times during our adoption process that I was 100% convinced we should just cancel our vacation. I was sure that it would end up falling right when we got approval to travel or right after travel or during Bean's surgery or...

On the other hand, Jeremy was 100% convinced that we should not cancel - that the time away would be really special for our family (and for Bean if she made it home before our trip). He was right; we had a blast. My younger sister, Jessica, even got to join us for part of the time. (She wins the Aunt-of-the-Year Award for braving the 17-hour trip in the back of the minivan. In the middle seat. Between two boosters. She's a rockstar.)

If I had to pick one picture to sum up our vacation, I think it would be this one.

Our kids made it into the water pretty much every. single. day.

They floated down creeks...

...splashed in the ocean...

...lounged by the pool...

...and hung out by some incredibly gorgeous springs.

We also made time for a little of this...

...and a whole lot of this.

(Why, yes, Bean has gained two pounds in the month she's been home.)

We were a little nervous about taking Bean somewhere new so soon after arriving home, but the intense together time turned out to be really special. Jeremy was thankful for the chance to be away from work to bond with our li'l sweetie. Bean showed her adventurous side and braved lots of new experiences.

All in all, it was a really fun time with just a dash of chaos and puking. I am super grateful we had the chance to make some special memories as a family before Bean has her surgery. On that note, here's a quick update on what's coming next for Bean.

This Friday afternoon, Bean will have a heart cath. During the cath, Bean's doctors will insert a catheter into a blood vessel in her thigh. They will thread the catheter up to her heart. This allows the doctors to do many different diagnostic tests on Bean's heart. They can test pressures and see detailed images of her anatomy. 

One of the main things they are looking for is a view of Bean's left pulmonary artery. They were unable to see this artery during her echo last month, so there is a chance it is not properly connected. (The doctor mentioned that it may be arising out of a duct.) Hopefully they can get a clear picture of this artery on Friday. If it is not there or is not connected properly, it will make her surgery more complicated.

Bean and I hope to come home Friday evening, but there is a chance we'll have to spend one night in the hospital. Jeremy, Bean, and I head right back to the hospital on Monday for pre-op. We'll meet with Bean's surgeon, learn the time of her surgery, and possibly have some final tests done. We'll spend the night near the hospital, and then Tuesday is surgery day.

Bean will be hospitalized for 5-14 days after her surgery. I should be able to post lots of updates while I hang out with her in the hospital. Jeremy is able to be at the hospital for pre-op and surgery, but then it'll be the girls (with lots of visits from friends, we hope) for a few days.

Please keep our sweet girl in your prayers as she faces a lot of big stuff over the next few weeks. It's definitely scary to think about what she'll be facing, but we know there are lots of people supporting her and lifting her up to the Lord. I'll leave you with one more Bean smile.