This morning seemed to come awfully early due to a very late night. I've never been too good with quiet. The hubs thrives in the silence. If I'm surrounded by silence, I tend to say aloud, "Man...it's so quiet in here!" Can't take it. That's why Scriptures like, "Be still and know that I am God" are a horse pill for me to swallow sometimes. So last night, after all of the hubbub died down, I was struggling then more than in the "heat of the moment." The Lord directed my heart to this blog, of all things...I know...how narcissistic can one be? But I've found that He often encourages my heart by reminding me about where we've already been...ground we've already covered. That's what happened last night. I began to read through...and then quietly sing through...the lyrics for "His Eye is on the Sparrow" that I'd just shared with you the day before. Go back. Read them again with yesterday in mind. I dare you to not shed a tear. I was emotionally spent, but He used those lyrics to both convict and encourage me in the midst of this "shadow."
Regardless, early morning, it was...ok, Yoda...man...my nephew better be reading...and appreciating...that! Overslept, I did. I'll stop now...I promise. The rushing around actually served to occupy the mind, though...so see, Chris...being late is beneficial. :)
Funny note...unrelated and totally pointless...the anesthesia dude came in to talk about all the risks and issues they'd have. Renee and I realized at the same time that he totally thought...or was at least addressing us...as though we were a couple! HAHAHA! Ok...lighten up a bit...I know it's totally not funny but given the sobering circumstances, we had to chuckle. She mouths it to me...I laugh...and then proceed to try to tell him by talking to Zoe. I'm holding the camera saying, "Tell Daddy hi Zoe!...Daddy's not here so say I love you Daddy!"...and so on...it was comical.
Between that and forgetting certain pieces of clothing that you wouldn't want to forget...I could study hyroglyphics with all this cryptic language...let's just say, turning something inside out is basically like putting on clean clothes...it was a comedy of errors, to say the least.
We were given a pager to communicate updates and told that a page did not necessarily mean bad news. We'd already told the dr that it wasn't necessary to ask before doing necessary steps that were beyond the routine measuring..."Do what you feel is needed for her best care...we trust God is guiding your hands as He's guiding our hearts."
I also forgot to mention that the dr had told us, contrary to what we'd been told previously, she would absolutely not be going home after the procedure. They would need to monitor her condition round the clock in the PICU. So...we made phone calls and arrangements to deal with that accordingly.
Roughly 1.5 hrs later, we got one of the pages saying the dr would like us to come back to chat. Having been told the procedure would take roughly 2 hrs, I expected it to be a wrap-up conversation. Unfortunately, that was not the case. Dr. Divekar had some bad news. The pressures that we needed to be low were very, very high. The valve with excessive leaking was extreme. The pulmonary artery that we knew had only a small "opening" was even smaller that anticipated...only 1.2 mm...Renee said that's roughly the size of a spaghetti noodle or two. In addition to that, the arteries opposite of the PA had basically "scarred" over time due to the pressures and poor blood flow. Basically this was creating a blood "traffic jam" where the blood would collect there, and with no adequate pumping mechanism, would not move the blood where it needed to go. Therefore, these arteries were also a major problem. He said her body has basically learned to survive without oxygen. Her stats going into surgery were low 50's. Her pressures were too high in the lungs to allow any invasive heart surgeries. Basically the pressures would cause heart failure, heart attack, and death. He was also convinced that she would not do well when they tried to remove the breathing tube. After working so hard for so long to breathe and pump blood with inefficient organs, it might not want to take up that gauntlet again.
"We can do nothing further for her with this current plan. Any surgery is off the table for now." And then he said the comment I shared with you previously..."We may need to talk about what we can do to make her more comfortable as she lives out the rest of her days...however long that may be."
"BUT...I can try one more thing...insert a balloon into the pulmonary artery to try and open it up enough to increase the blood flow to the lungs. It should increase her oxygen right away...then we can just wait and see if the pressures come down. Normal pressure would be between 1-2...hers is 5...very bad. (Dr. Edens later told us that he'd seen kids as high as 14..."very bad" is a relative term, depending on your personality, but it still very serious.) They would not be able to put a stint in because the narrowing of the valve was too close to the coronary arteries. If they hit those, she would die. The dr also said the balloon was unlikely to work because they didn't know what was under the PA...the muscle would have to be exactly perfect...not too weak, not too strong...to allow the balloon to function as we needed it to. They would also need to go in with an ultrasound through the esophagus in order to get a better look at the PA. I said to move ahead with the balloon procedure...I signed more consent forms, including one that would allow them to take pictures of the spine from the forward angle as they were already in there, in order to help future kids with spinal injuries...and then we began to talk through the whole situation all over again with Dr. Edens.
Believe it or not, I held it together until Dr. Edens was drawing out her condition on a picture of the heart. Things were big that shouldn't be, things were small that shouldn't be, and blood just sat where it should be moving...not much of a current to carry it where it needed to go. We talked of surgical options that our surgeon was willing to explore if needed and helpful but all of them were precluded by these pressures coming down. Transplant was even discussed but even that doesn't solve these artery problems. The surgeon would draw the line at performing any surgery, just for the cause of doing something, that would have no benefit. In his words, "I'm not going to choose the day my patient will die."
I tried to explain how trusting God doesn't make this any easier, but I fear the words came out as mush...lame, weak mush.
Thankfully they allowed us to remain in the back room instead of herding us back out to the waiting room. I was a mess. After the dr left, I said to Renee, "I just didn't think this was where God was leading us. I never saw this coming...not for real."
That was the hardest thing for me. It's one thing to be straying from the will of God...to be headed in a direction, or living a lifestyle, that contradicts Scripture, and for God to use circumstances like this to draw you back to Himself. But we're trying to follow His plan...we're stretched far beyond our comfort zone...for the sake of His commands and promises. I want to want what He wants...but how could I willingly WANT to suffer the loss of my child for the greater purpose?
I prayed continually today that I would reflect Christ throughout this ordeal. I didn't want the doctors and nurses to see the overwhelmed and emotionally drained adoptive mom...I wanted them to see Christ. I feel as though I personally failed at every turn. But I've seen the Holy Spirit redeem rubble time after time. I'm grateful that in those moments, I was at least able to share with Dr. Edens that we may not understand this side of Heaven why God has taken us through this trial, but I'm confident in His loving care and never-ending grace. I sent out word on Facebook for people to pray diligently for God to work another miracle in the life of little Zoe.
After another hour or so, Dr. Divekar returned with some exciting news. The balloon procedure worked. Her o2 level immediately climbed to 82. Her extremities were turning pink. The "mystery" muscles underneath the PA narrowing were "almost perfect." He'd recalculated the pressures is his head but would have to examine the numbers closer once she was stable. The negative effect of the balloon was her heart developed an irregularity that they struggled to regulate. They were even more concerned with her being able to breathe on her own. She would definitely be staying in the PICU to be monitored. We'll take it. He left with a slight skip in his step.
It wasn't long before he returned...smiling...well, kind of half smirking...she was breathing fine and the arrhythmia was gone...to the point where the dr cancelled the medicine he'd just ordered and said he even thought she didn't need to be in PICU...he was overruled by the other physicians...but still! This wasn't a solution at all, but it bought us some healing time. She should significantly improve with the higher oxygenation, and there's a slight chance that the higher levels would then reduce the pressures...which would then allow for life-saving surgery.
The plan is to come back in 6-8 weeks to re-do the cath and see what the levels and pressures are after giving the body time to adjust. The 1-2 month life expectancy was null and void given the new o2 levels. Incredible news. Prayers, prayers, and more prayers. One miracle at a time.
Zoe had a rough time in recovery because of the demand that she lay flat for 6 hours post op. They allowed me to lay down with her, even laying her on top of me but because her incisions were still bleeding, we had to strap her legs to mine to keep her immobile. It wasn't long before we needed to give her something to calm her down. At one point, I just kept saying, "Jesus loves you," over and over...after 2 times, she stopped wailing...by the 6th or so time, she stopped all together. I praise Him for grace even in the smallest detail.
Once that happened, we began the long road to recovery. We laid there that entire time, counting down the hours until we could safely move around. I was so grateful that I'd thought to bring these cd's I'd bought in China with Chinese children's songs. She really seemed to enjoy listening to them. She perked up after a good while and even enjoyed a dinner of gerber snacks and french fries!:) Thanks to Auntie Ne Ne, Mommy even got a shower...and some peanut butter, DP, and peanut m&m's...happy times.
We will go home tomorrow, careful to avoid germs as much as possible, but thrilled for our little girlie who's been hanging out with the God of angel armies all day today...how cool is that?
One last note, the dr came in to update us just before Renee left for the evening. He ran those numbers again that he'd collected before they finished the procedure...the ones that would only change over time...the one that was at a very high 5...it was immediately down to 2.5. The dr was shocked and said, "It's amazing!!!"
Yep doc...He sure is. It's all about Him.
Friday, March 29, 2013
Thursday, March 28, 2013
Baby Steps
I say "baby steps" because that's the way I'm feeling after these last couple days...like an infant...too unsure to step lest my legs give way. I forget way too quickly that my Daddy has me by the proverbial armpits...guiding and supporting every step...I won't fall if I let Him hold me, yet in my stubbornness, I'd rather not step at all than to step while holding on. I'm such a baby.
I never claimed to be a spiritual giant...far from it...but I thought my faith was stronger...deeper...more substantial...than it has shown itself to be. I'm a toddler taking her first steps...shaky and slow...at best...some days, I'm closer to a crawler.
God has allowed these last couple days in the hospital with Zoe to, once again, shake me to my core and show my feeble heart at his weakest and most vulnerable.
I thought God asked us to take a tremendous step of faith to rescue two of his children. I thought we were sacrificing to this degree to "get her the help she needs." I truly believed in my heart that God was bringing us together so that one day, after soaking in the truths of God's redemptive plan, that she might put her eternal life in His hands, just as her physical life has always been.
I never expected to hear, "We may just be able to make her as comfortable as possible while she lives out her last days." But that's what I heard today.
Let me back up a little.
We got word this week that Zoe's heart cath would be Thursday at 7:30 am, but that we'd have to be at the hospital for pre-op on Wednesday at 2. Because we live 1.5 hrs away, that also meant we were staying the night in Iowa City. This posed a dilemma with what to do with our other kids, including Zane. After much discussion, we decided Zoe and I would come up with our friend, Renee, again...Chris would man the fort...and corral the troupes (did I mention Zane was included)...and prepare for Easter Sunday...somehow. This also meant that Mommy would not be there for Peyton's 11th birthday. Sigh. Tears were shed...on both our parts as birthdays are a big deal at the Carr Castle...but we also understood we had no other option.
Incidentally, our dear friend Jacqueline took it upon herself to gather all sorts of things to make Peyton still feel the love...in a big way...on her special day. I will be forever grateful for this special display of love for our Peanut. Daddy and Zane taking Peyton lunch at school was icing on the cake. Daddy sent me pics of all her special things, but my favorite was her smile. It has always lit up the room...it certainly did that today...even from a distance. Thank you, Jacqueline, for making that possible.
I'd been prepared by Chris that I would have to sign a consent form/waiver that this cath procedure could prove fatal, but no amount of forewarning could actual prep you for what we encountered. We met with more amazing staff members of the U...I could never begin to say enough about the quality of care we have already received. It's just another piece of the puzzle with God leading us to Iowa almost 18 months ago.
Speaking of pieces of the puzzle, Zoe also came to us with a small abrasion of some sort on her right temple. I didn't think anything of it initially because it looked like nothing more than an old mosquito bite or something of that nature. Suffice it to say, it had grown much bigger and became infected somehow to the point that we had to drain and culture it yesterday during the pre-op workup. Bonus? Uh...not so much. They also put her on antibiotics...just in case.
We were prepped that her cath doc was very blunt...honest to the core. I just chuckled because every single doctor that's ever actually helped me throughout any of my own health situations has been just that. No hand holding, no hair stroking, no light music playing. I find it mildly amusing that I married the same personality...remember Mr. Bottom Line...but it definitely works for us...plus he's a big softie when he needs to be! :) That's enough of that mushy stuff...getting back to Dr. Direct. I have to admit I was taken aback as he painted a fairly bleak picture of what I thought was a routine "investigation" into the heart situation. I knew they were getting the lay of the land...just didn't know those measurements would determine whether they could do anything or not...just thought it would determine what...not if. He thought it very unlikely that any finding would be good, and we were left to ponder the heavy implications. Renee was quick to remind me that we knew nothing new or different than we knew the previous week with Dr. Edens...that was moderately helpful. On some level, I was shocked to hear the severity of her case...even though we knew it was life-threatening from day one.
It was interesting to see them interacting with Zoe. At one point, the dr said, "I'm a little confused because on paper, I would say she is critical...but to look at her sitting there eating cookies and smiling, I would say she's not critical!" They also made it clear that there are no protocols for her condition. There are no textbook answers. Somebody will study her case someday and write some sort of paper over her diagnosis and care. That did little to comfort me. I heard lots of scientific and medical explanations of the situation, but one in particular, I felt a need to oppose. He said, "Nature has been keeping her alive by these different problems working together." I let him finish his thought and said, "I have to tell you that we do not believe under any circumstance that this was 'nature'...God himself created her in such a way that He is sustaining her life through these 'problems'...this was no accident...and He also has us here in this place, at this time...He's in control." He humored me and shrugged his shoulders, but that's ok...I felt prompted by the Spirit and obeyed...maybe He will use my lame response one day in the hearts of those that heard. It felt very inadequate, but a theological debate wasn't on the table.
Given the heaviness of the visit...which lasted for over 3 hours...Renee offered to stay the night with Zoe and I in the Ronald McDonald House. This was also after much discussion about whether Chris should come up or stay home with the kids. Considering Peyton's birthday, Zane's schedule, and the other kids activities, we agreed it was best for Chris to remain home. However, I'm so grateful to have not been alone as they even set up the possibility that her little body would adversely react to the cath and that she may not make it out of the procedure. Heavy stuff.
So, of course, we went to Olive Garden. :) What else would we do?!? Everything going great...me and my alfredo sauce...until Zoe's apple juice created quite a stir. Sigh. Done with apple juice. For keeps. Those of you that know me well would've been proud. Throw the breadsticks out of the basket, catch the puke, wipe her down, order more bread. Put my big girl britches on for that one. Just like the other two incidents, Zoe was perfectly fine afterwards. It's clearly not a stomach virus of any kind...more likely, it's compression on the stomach muscle from these various enlarged organs so that when the offending variable...apple juice...is introduced, the small gag reflex produces just the right amount of pressure or stress to cause the vomiting. That's my highly trained medical opinion. You can quote me.
We then went to Target to get forgotten items...me, of course...and crashed at McD's house. Lots of prayers...more tears...went to bed hanging on to a thread of hope that God would do great and mighty things with this little girl...and her baby of a mother.
I never claimed to be a spiritual giant...far from it...but I thought my faith was stronger...deeper...more substantial...than it has shown itself to be. I'm a toddler taking her first steps...shaky and slow...at best...some days, I'm closer to a crawler.
God has allowed these last couple days in the hospital with Zoe to, once again, shake me to my core and show my feeble heart at his weakest and most vulnerable.
I thought God asked us to take a tremendous step of faith to rescue two of his children. I thought we were sacrificing to this degree to "get her the help she needs." I truly believed in my heart that God was bringing us together so that one day, after soaking in the truths of God's redemptive plan, that she might put her eternal life in His hands, just as her physical life has always been.
I never expected to hear, "We may just be able to make her as comfortable as possible while she lives out her last days." But that's what I heard today.
Let me back up a little.
We got word this week that Zoe's heart cath would be Thursday at 7:30 am, but that we'd have to be at the hospital for pre-op on Wednesday at 2. Because we live 1.5 hrs away, that also meant we were staying the night in Iowa City. This posed a dilemma with what to do with our other kids, including Zane. After much discussion, we decided Zoe and I would come up with our friend, Renee, again...Chris would man the fort...and corral the troupes (did I mention Zane was included)...and prepare for Easter Sunday...somehow. This also meant that Mommy would not be there for Peyton's 11th birthday. Sigh. Tears were shed...on both our parts as birthdays are a big deal at the Carr Castle...but we also understood we had no other option.
Incidentally, our dear friend Jacqueline took it upon herself to gather all sorts of things to make Peyton still feel the love...in a big way...on her special day. I will be forever grateful for this special display of love for our Peanut. Daddy and Zane taking Peyton lunch at school was icing on the cake. Daddy sent me pics of all her special things, but my favorite was her smile. It has always lit up the room...it certainly did that today...even from a distance. Thank you, Jacqueline, for making that possible.
I'd been prepared by Chris that I would have to sign a consent form/waiver that this cath procedure could prove fatal, but no amount of forewarning could actual prep you for what we encountered. We met with more amazing staff members of the U...I could never begin to say enough about the quality of care we have already received. It's just another piece of the puzzle with God leading us to Iowa almost 18 months ago.
Speaking of pieces of the puzzle, Zoe also came to us with a small abrasion of some sort on her right temple. I didn't think anything of it initially because it looked like nothing more than an old mosquito bite or something of that nature. Suffice it to say, it had grown much bigger and became infected somehow to the point that we had to drain and culture it yesterday during the pre-op workup. Bonus? Uh...not so much. They also put her on antibiotics...just in case.
We were prepped that her cath doc was very blunt...honest to the core. I just chuckled because every single doctor that's ever actually helped me throughout any of my own health situations has been just that. No hand holding, no hair stroking, no light music playing. I find it mildly amusing that I married the same personality...remember Mr. Bottom Line...but it definitely works for us...plus he's a big softie when he needs to be! :) That's enough of that mushy stuff...getting back to Dr. Direct. I have to admit I was taken aback as he painted a fairly bleak picture of what I thought was a routine "investigation" into the heart situation. I knew they were getting the lay of the land...just didn't know those measurements would determine whether they could do anything or not...just thought it would determine what...not if. He thought it very unlikely that any finding would be good, and we were left to ponder the heavy implications. Renee was quick to remind me that we knew nothing new or different than we knew the previous week with Dr. Edens...that was moderately helpful. On some level, I was shocked to hear the severity of her case...even though we knew it was life-threatening from day one.
It was interesting to see them interacting with Zoe. At one point, the dr said, "I'm a little confused because on paper, I would say she is critical...but to look at her sitting there eating cookies and smiling, I would say she's not critical!" They also made it clear that there are no protocols for her condition. There are no textbook answers. Somebody will study her case someday and write some sort of paper over her diagnosis and care. That did little to comfort me. I heard lots of scientific and medical explanations of the situation, but one in particular, I felt a need to oppose. He said, "Nature has been keeping her alive by these different problems working together." I let him finish his thought and said, "I have to tell you that we do not believe under any circumstance that this was 'nature'...God himself created her in such a way that He is sustaining her life through these 'problems'...this was no accident...and He also has us here in this place, at this time...He's in control." He humored me and shrugged his shoulders, but that's ok...I felt prompted by the Spirit and obeyed...maybe He will use my lame response one day in the hearts of those that heard. It felt very inadequate, but a theological debate wasn't on the table.
Given the heaviness of the visit...which lasted for over 3 hours...Renee offered to stay the night with Zoe and I in the Ronald McDonald House. This was also after much discussion about whether Chris should come up or stay home with the kids. Considering Peyton's birthday, Zane's schedule, and the other kids activities, we agreed it was best for Chris to remain home. However, I'm so grateful to have not been alone as they even set up the possibility that her little body would adversely react to the cath and that she may not make it out of the procedure. Heavy stuff.
So, of course, we went to Olive Garden. :) What else would we do?!? Everything going great...me and my alfredo sauce...until Zoe's apple juice created quite a stir. Sigh. Done with apple juice. For keeps. Those of you that know me well would've been proud. Throw the breadsticks out of the basket, catch the puke, wipe her down, order more bread. Put my big girl britches on for that one. Just like the other two incidents, Zoe was perfectly fine afterwards. It's clearly not a stomach virus of any kind...more likely, it's compression on the stomach muscle from these various enlarged organs so that when the offending variable...apple juice...is introduced, the small gag reflex produces just the right amount of pressure or stress to cause the vomiting. That's my highly trained medical opinion. You can quote me.
We then went to Target to get forgotten items...me, of course...and crashed at McD's house. Lots of prayers...more tears...went to bed hanging on to a thread of hope that God would do great and mighty things with this little girl...and her baby of a mother.
Tuesday, March 26, 2013
Siblings Meet...and They're All Still Standing
I guess the title is overstating it to some degree, but I hope you get my point. 6 kids meet for the first time, and nobody got hurt...they even like each other!
You may need to sit down.
I know many of you have asked about when our 4 bios met our 2 Chinese kiddos, and you've largely been met with silence on our part. I just felt like we needed some time...some private family time...I trust you'll understand. I've even had quite a few people asking me to see a video of them meeting. Not gonna happen. The paparazzi had the day off...plain and simple. Mom and dad reunited with their beautiful children who'd they so desperately missed, siblings met for the first time, Chinese children tried to not freak out when brothers and sisters got all up in their grill, emotions were high, and Chinese kiddos tried to understand that they would have to share mommy and daddy...with 4 more! No videos. No pictures. No specifics. Just our memories. Thanks for understanding.
OH WAIT. I will take the liberty to throw my eldest son under the bus right now though...as he decided he didn't want to miss youth group at church for our homecoming. Are you kidding me?!?!? And don't get all spiritual on me and praise his dedication and devotion...I'm sure there was food involved...or friends...or xbox...something. No biggie, son...we were only in CHINA...for almost 2 WEEKS! OK...now I'm done with specifics.
Zane and Zoe warmed up pretty quickly to our kids with Ty being the running fave initially...maybe it's because he's closest to their size...or maybe because he was willing to chase Zane around the house...which Mr. Z never tired of...which baffled Ty...and so on...
The hardest thing for our kids was the Z's not jumping into their waiting arms. We've known about them for a year and have been processing it for that long. Zane and Zoe have known far less and, even then, only able to process it with their 3 yr. old minds/hearts. It's just hard on the older kids who've given so much of their heart and personal convenience to feel somewhat rejected at times. As I write this, we are almost 1 week post-arrival, and things have vastly improved in this area.
I mentioned in previous posts that a terrible stomach virus has been going through our family since we returned home. At first, everyone blamed me for bringing it home, but now it seems Peyton may have been the first in our family, catching it from school...one by one, family members went down. Bryce, myself (although I had it in China), and the "twins" are the only ones left unscathed...Chris' mom wasn't even able to leave town when she'd planned because of the virus...nasty stuff. Consequently, the first 4 days of the kids being here is basically a blur...between the jet lag for us and the twins, sleep deprivation, and this virus...it's a wash. That reminds me...I should do laundry...
Thursday night Zane was up at 1:15 am, and I wrestled him off and on all night to get back to sleep. The next night it was 3:30 am, and Chris had the graveyard shift...never did get him back to sleep. (Chris slept on the floor in their room both of those nights.) Saturday night, I slept on the floor in their room so Chris would be rested for church...I got up with them 6 times. Bru-tal.
Hence the title...survival wasn't the initial objective...it quickly became the primary focus. A friend told me to expect 1 day for every hour of time difference...that means we're about halfway through this nighttime switcheroo...I may need my old choir to come sing, "...I know that I can make it..." in full harmony to get me through this next week!!! Any volunteers??? :)
I finally got out of the house Sunday afternoon during nap time to get some much needed "containment" gadgets...gates, booster chairs, monitor, etc. We just had no idea we would need this kind of stuff. I remember when my kids were 3...we had long left this stage...I was surprised to realize this stuff would be not only helpful, but necessary. Things that allowed us to sleep in our own bed, not feel the need to be a human booster, go through rolls of paper towels as bibs, and not be running upstairs and down to constantly check on the babies...these gadgets have started to restore whatever meager level of sanity I had to begin with!
Interestingly enough, Zoe has turned a corner somewhat since Saturday evening. It is likely the new medicine that is reducing the fluid around her heart, that's relieving that massive pressure. Saturday afternoon, she actually let me put her down for several hours while she played with some stackable cups and bowls. It was amazing. Obviously, it's not that I don't want to hold her and play with her...it's just difficult to function normally and do routine things around the house while holding her in a specific way...which is what I've been doing since our Gotcha Day! Auntie NeNe was here during church (since all my helpers had the flu), and I was even able to use the restroom and the like without meltdowns! Definite progress! She still has an enormous battle to fight, but it's been such sweet fun to hear her laughing and see her playing on her own.
Zane has also been teaching us some things about himself. We thought we had him figured out...including ways he'd react when not getting his way. That's why, when we started getting a fight from him about going to bed, we stayed firm. He started to be so angry when he was put to bed...screaming and shaking, even...I'd stroke his head and sing, trying to calm him down...nothing. Then I noticed he was staring at a sound machine I'd purchased that played music and showed a moving projection on the ceiling...kind of like a mobile. I had picked it up to shine the projection above him so he could see it better...he just about went through the roof! I quickly turned off the projection, then realized he didn't want it at all. When I took it out of the room, he stopped screaming immediately. Wow...wouldn't have believed it if I hadn't seen it. The next day for nap time, I turned the ceiling fan on low again to circulate the air. This time I recognized the wailing and immediately set about finding out what was scaring him...culprit: the ceiling fan. Poor little guy...stuck with Mother of the Year.
We still have a long way to go with regard to communication, but we are taking baby steps. I can tell they understand what I'm saying because they generally do it. I, however, remain clueless as to what they are asking of me...usually over and over again. For instance, after snack time today, Zoe wanted me to carry her over to the freezer and open it. I did. She didn't want anything so I shut the freezer. Not a happy camper. So then we spend the next 20 minutes trying to calm back down. That pretty much sums up my days lately...trying to keep her calm, carrying her all over, and trying to entertain Zane as well...who is finding that he doesn't like that Zoe wants to be held all the time! "Enough already!", he seems to be saying. If you were to come in my house, you would be horrified! We haven't even been able to unpack from China or get the house in order...or even clean anything as it's all I can do to clean up after meals before she's ready for momma again.
They seem to understand that we're a family now...at least to some degree...that makes my heart sing.
I've had so many people ask about helping in various ways, for which we are grateful. Unfortunately, there's very little I can accept. We've been advised not to go out into public very much and not to have a bunch of people in our home as well. This is to help in the attachment/bonding facet of our adoption. The kids have had so many different caregivers during their short 3 years. It's very confusing for them to figure out who's providing for them now. I even had to hand them their food when Mrs. Carr was still here so they could begin to build that trust between parent and child with which our bios are born. Trust me, I'd much rather have company of friends during the day or go out running errands...or go to church...after all, that's what I did with my other 4! But even though I can't understand all the scientific lingo and philosophies, I will trust that God will continue to give us wisdom about what's ok at what stage for our little family.
Thank you so much for your continued love and prayers.
You may need to sit down.
I know many of you have asked about when our 4 bios met our 2 Chinese kiddos, and you've largely been met with silence on our part. I just felt like we needed some time...some private family time...I trust you'll understand. I've even had quite a few people asking me to see a video of them meeting. Not gonna happen. The paparazzi had the day off...plain and simple. Mom and dad reunited with their beautiful children who'd they so desperately missed, siblings met for the first time, Chinese children tried to not freak out when brothers and sisters got all up in their grill, emotions were high, and Chinese kiddos tried to understand that they would have to share mommy and daddy...with 4 more! No videos. No pictures. No specifics. Just our memories. Thanks for understanding.
OH WAIT. I will take the liberty to throw my eldest son under the bus right now though...as he decided he didn't want to miss youth group at church for our homecoming. Are you kidding me?!?!? And don't get all spiritual on me and praise his dedication and devotion...I'm sure there was food involved...or friends...or xbox...something. No biggie, son...we were only in CHINA...for almost 2 WEEKS! OK...now I'm done with specifics.
Zane and Zoe warmed up pretty quickly to our kids with Ty being the running fave initially...maybe it's because he's closest to their size...or maybe because he was willing to chase Zane around the house...which Mr. Z never tired of...which baffled Ty...and so on...
The hardest thing for our kids was the Z's not jumping into their waiting arms. We've known about them for a year and have been processing it for that long. Zane and Zoe have known far less and, even then, only able to process it with their 3 yr. old minds/hearts. It's just hard on the older kids who've given so much of their heart and personal convenience to feel somewhat rejected at times. As I write this, we are almost 1 week post-arrival, and things have vastly improved in this area.
I mentioned in previous posts that a terrible stomach virus has been going through our family since we returned home. At first, everyone blamed me for bringing it home, but now it seems Peyton may have been the first in our family, catching it from school...one by one, family members went down. Bryce, myself (although I had it in China), and the "twins" are the only ones left unscathed...Chris' mom wasn't even able to leave town when she'd planned because of the virus...nasty stuff. Consequently, the first 4 days of the kids being here is basically a blur...between the jet lag for us and the twins, sleep deprivation, and this virus...it's a wash. That reminds me...I should do laundry...
Thursday night Zane was up at 1:15 am, and I wrestled him off and on all night to get back to sleep. The next night it was 3:30 am, and Chris had the graveyard shift...never did get him back to sleep. (Chris slept on the floor in their room both of those nights.) Saturday night, I slept on the floor in their room so Chris would be rested for church...I got up with them 6 times. Bru-tal.
Hence the title...survival wasn't the initial objective...it quickly became the primary focus. A friend told me to expect 1 day for every hour of time difference...that means we're about halfway through this nighttime switcheroo...I may need my old choir to come sing, "...I know that I can make it..." in full harmony to get me through this next week!!! Any volunteers??? :)
I finally got out of the house Sunday afternoon during nap time to get some much needed "containment" gadgets...gates, booster chairs, monitor, etc. We just had no idea we would need this kind of stuff. I remember when my kids were 3...we had long left this stage...I was surprised to realize this stuff would be not only helpful, but necessary. Things that allowed us to sleep in our own bed, not feel the need to be a human booster, go through rolls of paper towels as bibs, and not be running upstairs and down to constantly check on the babies...these gadgets have started to restore whatever meager level of sanity I had to begin with!
Interestingly enough, Zoe has turned a corner somewhat since Saturday evening. It is likely the new medicine that is reducing the fluid around her heart, that's relieving that massive pressure. Saturday afternoon, she actually let me put her down for several hours while she played with some stackable cups and bowls. It was amazing. Obviously, it's not that I don't want to hold her and play with her...it's just difficult to function normally and do routine things around the house while holding her in a specific way...which is what I've been doing since our Gotcha Day! Auntie NeNe was here during church (since all my helpers had the flu), and I was even able to use the restroom and the like without meltdowns! Definite progress! She still has an enormous battle to fight, but it's been such sweet fun to hear her laughing and see her playing on her own.
Zane has also been teaching us some things about himself. We thought we had him figured out...including ways he'd react when not getting his way. That's why, when we started getting a fight from him about going to bed, we stayed firm. He started to be so angry when he was put to bed...screaming and shaking, even...I'd stroke his head and sing, trying to calm him down...nothing. Then I noticed he was staring at a sound machine I'd purchased that played music and showed a moving projection on the ceiling...kind of like a mobile. I had picked it up to shine the projection above him so he could see it better...he just about went through the roof! I quickly turned off the projection, then realized he didn't want it at all. When I took it out of the room, he stopped screaming immediately. Wow...wouldn't have believed it if I hadn't seen it. The next day for nap time, I turned the ceiling fan on low again to circulate the air. This time I recognized the wailing and immediately set about finding out what was scaring him...culprit: the ceiling fan. Poor little guy...stuck with Mother of the Year.
We still have a long way to go with regard to communication, but we are taking baby steps. I can tell they understand what I'm saying because they generally do it. I, however, remain clueless as to what they are asking of me...usually over and over again. For instance, after snack time today, Zoe wanted me to carry her over to the freezer and open it. I did. She didn't want anything so I shut the freezer. Not a happy camper. So then we spend the next 20 minutes trying to calm back down. That pretty much sums up my days lately...trying to keep her calm, carrying her all over, and trying to entertain Zane as well...who is finding that he doesn't like that Zoe wants to be held all the time! "Enough already!", he seems to be saying. If you were to come in my house, you would be horrified! We haven't even been able to unpack from China or get the house in order...or even clean anything as it's all I can do to clean up after meals before she's ready for momma again.
They seem to understand that we're a family now...at least to some degree...that makes my heart sing.
I've had so many people ask about helping in various ways, for which we are grateful. Unfortunately, there's very little I can accept. We've been advised not to go out into public very much and not to have a bunch of people in our home as well. This is to help in the attachment/bonding facet of our adoption. The kids have had so many different caregivers during their short 3 years. It's very confusing for them to figure out who's providing for them now. I even had to hand them their food when Mrs. Carr was still here so they could begin to build that trust between parent and child with which our bios are born. Trust me, I'd much rather have company of friends during the day or go out running errands...or go to church...after all, that's what I did with my other 4! But even though I can't understand all the scientific lingo and philosophies, I will trust that God will continue to give us wisdom about what's ok at what stage for our little family.
Thank you so much for your continued love and prayers.
Monday, March 25, 2013
Laura Story's story
Hey friends! I wanted to share this testimony of faithfulness in the midst of heartache with you. I've been listening to Laura's music for a few years now, and it truly speaks deeply to my soul. So thankful the Lord has given her this heart for Him and the things of eternal significance. It has taught me a great deal about the joy in suffering.
“My husband was diagnosed with a brain tumor four to five years ago,” she says. “He’s gone through an enormous amount of healing, but at the same time there are some things that haven’t fully healed like vision and memory. We’re learning what life looks like with disabilities.
“At first you just look and say, ‘Why? Why didn’t you just fix it, God? You’re all powerful and all loving… just fix it.’
“I’ve spent so much time shaking my fist at God, but I feel like He keeps grabbing that hand that I’m shaking at Him and peeling back my fingers and saying, ‘Laura, you need to release it into my hands. I’ve been faithful to you. And now just because you don’t understand what I’m doing, you’re starting to doubt me?’
“We still have so many more questions than answers,” she says. “’God, how is this all going to end?’ We don’t know, but we trust that the things He allows into our lives are filtered through his loving hands. We hold onto the promise of scripture, ‘When you walk through the valley, I will be with you.’ We’ve gotten to experience Him in a deep and more intimate way.”
Martin and Laura were both 28 when the tumor was diagnosed. It wasn’t cancerous, but was growing aggressively and invasively inside his brain. At the time, they’d been married less than two years.
“We did the premarital counseling and they told us how to balance our checkbook and to say you’re sorry even when you don’t mean it,” she says with a small laugh. “But no one tells you how to respond when one of you is diagnosed with a life-threatening illness.
“I thought it would all get back to normal,” she continues. “Here’s the road… we’re gonna take a detour. About a year into it, my sister said to me, ‘You know, I think the detour is actually the road.’”
In her disarmingly honest way, she adds, “It’s been a hard road. We’re learning that when someone is living with chronic illness or disabilities, it’s getting adjusted to a completely new normal,” she says. “And then, “But I can’t say it hasn’t been without joys. We spend an enormous amount of time together. He probably gets so annoyed with me! But how many couple do you hear saying at the end, ‘Man, I wish I’d spent less time with my spouse.’ It’s never that,” she says. “Spending time with Martin obviously makes me happy, but it makes be a better person. That’s the blessing of it.”
And that’s what courses through the tracks on Blessings. Like finding joy in the time together or growing stronger in the gift of empathy, Laura has managed to find that one spot of light or that one glimmer of hope or peace and translate it to song.
“At first you just look and say, ‘Why? Why didn’t you just fix it, God? You’re all powerful and all loving… just fix it.’
“I’ve spent so much time shaking my fist at God, but I feel like He keeps grabbing that hand that I’m shaking at Him and peeling back my fingers and saying, ‘Laura, you need to release it into my hands. I’ve been faithful to you. And now just because you don’t understand what I’m doing, you’re starting to doubt me?’
“We still have so many more questions than answers,” she says. “’God, how is this all going to end?’ We don’t know, but we trust that the things He allows into our lives are filtered through his loving hands. We hold onto the promise of scripture, ‘When you walk through the valley, I will be with you.’ We’ve gotten to experience Him in a deep and more intimate way.”
Martin and Laura were both 28 when the tumor was diagnosed. It wasn’t cancerous, but was growing aggressively and invasively inside his brain. At the time, they’d been married less than two years.
“We did the premarital counseling and they told us how to balance our checkbook and to say you’re sorry even when you don’t mean it,” she says with a small laugh. “But no one tells you how to respond when one of you is diagnosed with a life-threatening illness.
“I thought it would all get back to normal,” she continues. “Here’s the road… we’re gonna take a detour. About a year into it, my sister said to me, ‘You know, I think the detour is actually the road.’”
In her disarmingly honest way, she adds, “It’s been a hard road. We’re learning that when someone is living with chronic illness or disabilities, it’s getting adjusted to a completely new normal,” she says. “And then, “But I can’t say it hasn’t been without joys. We spend an enormous amount of time together. He probably gets so annoyed with me! But how many couple do you hear saying at the end, ‘Man, I wish I’d spent less time with my spouse.’ It’s never that,” she says. “Spending time with Martin obviously makes me happy, but it makes be a better person. That’s the blessing of it.”
And that’s what courses through the tracks on Blessings. Like finding joy in the time together or growing stronger in the gift of empathy, Laura has managed to find that one spot of light or that one glimmer of hope or peace and translate it to song.
“A lot of my songwriting isn’t an idea or concept that I’ve mastered,” she says. “It’s something that I need to hear for myself every night. I need to constantly be reminding myself that there is a peace in the storm if we keep our eyes on Jesus.
Sunday, March 24, 2013
The Real Journey Begins...
Hey there...bet you've forgotten about us over here in boring ol' Iowa now that we're not world travelers anymore!!! (No, Iowa peeps...it's not really boring...just had to say that to keep all the trouble makers away from here! Just sit back and relax............what else is there to do...HAHAHA...I crack myself up! Who needs an audience? For that matter, I might be the only one reading this anyway so I'm glad that I humor myself!) {Wasn't that the longest parenthetical statement you've ever read?!?} K...moving on...
I've had several of my bossier readers...you know who you are...asking for updates since we've been home...now that I'm just sitting around with my 6 kids, pastor husband, mother-in-law, and dog...let alone a 13 hr. jet lag issue...and almost the entire crew down with the stomach flu...sheesh...not much has been going on here...what about you?!?!? (In full disclosure, I feel as though I should tell you we haven't even picked up our dog yet but just thinking about adding that iron to the fire has given me hives...so it stays on the list!)
Get. Off. My. Back.
Whoa. I feel much better now.
I know you've all been wondering about the kiddos since we've been back home. I can assure you, there have been substantial up's and down's...we could even insert the word, "extreme"...that would pretty much sum it up.
But I wanted to focus on our first doctor visit for Zoe as I'm confident that is the predominant concern on your minds.
As you know, we arrived home Wednesday evening and headed up to Iowa City the following morning. We're pretty sure Zane and Zoe think they've been adopted by traveling salesmen...or celebrities...or circus clowns...yea...that's probably it...the circus. Anyway, they probably think that because we have traveled extensively every single day since we've had them! This time, Aunt Ne Ne (Renee) went with us to Iowa City as she's the doctor with all the connections, and we're...not. It really was wonderful to have her along and not just because she brought a million snacks...or even 12 Dr. Peppers...no joke...for real...I had 3 by lunch. The biggest blessing was how she loved on our kiddos from the first moment she saw them. She wasn't looking at them through weary or frustrated eyes. She wasn't showing pity or sadness when she spoke to them. She wasn't confused at why we would choose to bring these little ones into our family. She just loved them...I will never forget that.
I could go into ridiculous detail about the "day of docs" as I call it...well, I didn't until now...but now...it has been named...mark it down. Zane kept Renee busy running up and down the halls at the U. He seemed to be living it up...not a care in the world. Poor little Zoe didn't have the same kind of day.
She actually did fine with the x-ray, but when it came time for the ultrasound/echo, it got pretty ugly. She started out ok but quickly melted into hysterics. It was awful, and the worse part was having no choice. It's not like we could just skip it. The room was way too small and stuffy to have all the people in there that it did...including a child specialist who's job it is to distract the patient with super fun things so they don't feel the goo and ultrasound thing pushing around their chest and vital organs...uh...fail. It all crumbled when we sent out Zane with Ne Ne. Once she saw someone leave, she wanted to get the heck outta Dodge. Then more docs kept coming in and out...then we asked the "fun gal" to leave. She was beside herself, and we couldn't stop the test or get her to calm down. It was no surprise that she started choking and gagging...which led to her throwing up all over again. Once we got her cleaned up, it felt like torture to have to continue. Even though they let me lay on the bed with her, it only got worse. We found out later that her organs and valves have been so "displaced," they couldn't locate certain ones they needed to note. They made the absolute necessary measurements and called it quits.
We still had to do the EKG, but they allowed me to hold her on my lap and lay down. This seemed to placate her long enough to get their readings. They also had to check her o2 levels multiple times because of how low they were. Unfortunately, she has either has a drastic drop since the clinic visit last week in China, or those levels (which were 88 and 82...remember how excited we were to hear that?) weren't accurate. The readings this time were between 50-60.
We finally met our incredible doctor that has been involved in this process since the beginning of hearing about Zoe's heart condition. Dr. Edens has been friends with our friends, Renee and Steve Davis, since residency, and he truly has already been a tremendous blessing. Thursday was the first time we've met, but he's been emailing us back and forth with Renee since last spring sometime. Even while all this was going on with her health back in China, we were in direct contact with him via email. It could be our immense trust in Renee and Steve...it could be trust in the University of Iowa Hospitals...but more to the point, we really feel as though God has brought this man into our lives for a purpose that we can't even imagine. None of this...any of it...was by accident, but by design. I'm so thankful for that. I will continue to put my trust in that.
It's probably best if I just summarize as I remember...in no particular order of importance. There was good news and bad news. The good news was that Dr. Edens thinks they should be able to help. He told us something we'd not heard before...that he feared we would get there, and they wouldn't be able to do anything for her. It's probably best that we'd not heard that specifically, although that was clearly something we'd already guessed. He also said it wasn't as bad as he thought...to some degree.
Now on to the bad news. The medical records must've been pretty out of date...not intentionally, mind you...just the most recent thing they had...was old. There were several startling discoveries because they had been expecting to find something close to those records. Not so. Zoe's heart is so enlarged that it nearly fills her chest cavity. (Renee told me today that the heart will continue to get bigger and bigger over time as it works harder and harder to keep the body functioning.) The liver and other vital organs have been significantly displaced and/or enlarged due to the size of the heart. There is also a major valve leak. The left ventricle, believed to be missing, was actually there, but very small...and not functioning at all. There is an extra valve coming off the right ventricle. There were multiple other issues noted, including the lack of chamber division and the narrow pulmonary artery. There is also a great amount of fluid surrounding the heart, adding to the pressure she's feeling.
As you can imagine, it was a lot to take in...a lot to even breathe through...period.
But then he dropped the bomb. "In her current state, I wouldn't think she could survive more than another month or two."
Even as I type those words, it's hard to take in. I knew she was critical. I knew this was, and would be, harder than anything I'd ever experienced as a parent. But...a month?!? I just kept staring at her as she ate her little snack and threw the ball across the room. A month. All of this, God...for a month?!? Talk about "not fair"! This was the epitome of that phrase. My mind raced back to Peyton asking me so many months ago, "Mom, what if we get her here, and she still dies?" I remember very gallantly saying, "Well babe, that could happen...we just never know...but God's got everything...even the days of her life...under His control. And I know, that if ChaCha were to die, God will still use it for our good...even as hard as that would be!" Now I wanted to vomit in my mouth just thinking about those words I'd spoken. It's not that I still didn't believe them...it just a far more profound meaning now. A month. What are we doing here? What level of heartache have we willing taken on? I never claimed to be strong...if fact, I'm most aware of how very weak I truly am. I wanted to scream, "You've got the wrong girl!!! This is WAY beyond my pay grade!" I made a secret vow to make the process pay for delaying her care. I thought of all the ways I personally failed as a mother and a wife...but most of all, as a child of my Father. So little trust...so many opportunities.
I'm sure I asked the same questions multiple times...as if they'd never been asked. To be honest, most of the visit from that point on is a blur. Chris must've realized my incoherence...or maybe he had used up his patience quota...because all of a sudden, he leaned forward and said, "Ok...I'm a bottom line kinda guy...so let's hear it!" Gotta love 'em...or smack him, I guess...but this time we'll go with love.
SO...here's the deal. We get her on some meds immediately to reduce the fluid around the heart. Amazingly, the meds we had her on in China were accurate, including the dosage!!! Are you kidding me?!! And get this...according to the blood work, the meds were in the "therapeutic" levels...which means I really would make a good drug dealer!!! Yay for me!! (If you have no clue why I would claim that title, you'll have to read earlier posts...but woo hoo!) However, it made me weep with joy to get American versions of these meds that were LIQUID...no more crushing up the crack in the back seat of the car...bonus.
Once the fluid is reduced, we do a heart cath someday this week, to measure the various pressures of valves, lungs, and other things I don't understand. Thankfully, she will be sedated during this procedure.
Following the catheterization, Dr. Edens, the cath dude, and the surgeons will all meet to come up with a game plan. We will likely have the first surgery the following week. No idea if multiple surgeries will be needed or if it's done in one setting, but we are grateful to know they think there's something they can do.
It was also a bit discouraging to hear that she will likely be in the hospital for 2 weeks following the surgery, given the state of her condition. We will have to call on those circus skills to pull this off but are confident that God has, this too, under His watchful eye. Our little sparrow is in His hands.
I've had several of my bossier readers...you know who you are...asking for updates since we've been home...now that I'm just sitting around with my 6 kids, pastor husband, mother-in-law, and dog...let alone a 13 hr. jet lag issue...and almost the entire crew down with the stomach flu...sheesh...not much has been going on here...what about you?!?!? (In full disclosure, I feel as though I should tell you we haven't even picked up our dog yet but just thinking about adding that iron to the fire has given me hives...so it stays on the list!)
Get. Off. My. Back.
Whoa. I feel much better now.
I know you've all been wondering about the kiddos since we've been back home. I can assure you, there have been substantial up's and down's...we could even insert the word, "extreme"...that would pretty much sum it up.
But I wanted to focus on our first doctor visit for Zoe as I'm confident that is the predominant concern on your minds.
As you know, we arrived home Wednesday evening and headed up to Iowa City the following morning. We're pretty sure Zane and Zoe think they've been adopted by traveling salesmen...or celebrities...or circus clowns...yea...that's probably it...the circus. Anyway, they probably think that because we have traveled extensively every single day since we've had them! This time, Aunt Ne Ne (Renee) went with us to Iowa City as she's the doctor with all the connections, and we're...not. It really was wonderful to have her along and not just because she brought a million snacks...or even 12 Dr. Peppers...no joke...for real...I had 3 by lunch. The biggest blessing was how she loved on our kiddos from the first moment she saw them. She wasn't looking at them through weary or frustrated eyes. She wasn't showing pity or sadness when she spoke to them. She wasn't confused at why we would choose to bring these little ones into our family. She just loved them...I will never forget that.
I could go into ridiculous detail about the "day of docs" as I call it...well, I didn't until now...but now...it has been named...mark it down. Zane kept Renee busy running up and down the halls at the U. He seemed to be living it up...not a care in the world. Poor little Zoe didn't have the same kind of day.
She actually did fine with the x-ray, but when it came time for the ultrasound/echo, it got pretty ugly. She started out ok but quickly melted into hysterics. It was awful, and the worse part was having no choice. It's not like we could just skip it. The room was way too small and stuffy to have all the people in there that it did...including a child specialist who's job it is to distract the patient with super fun things so they don't feel the goo and ultrasound thing pushing around their chest and vital organs...uh...fail. It all crumbled when we sent out Zane with Ne Ne. Once she saw someone leave, she wanted to get the heck outta Dodge. Then more docs kept coming in and out...then we asked the "fun gal" to leave. She was beside herself, and we couldn't stop the test or get her to calm down. It was no surprise that she started choking and gagging...which led to her throwing up all over again. Once we got her cleaned up, it felt like torture to have to continue. Even though they let me lay on the bed with her, it only got worse. We found out later that her organs and valves have been so "displaced," they couldn't locate certain ones they needed to note. They made the absolute necessary measurements and called it quits.
We still had to do the EKG, but they allowed me to hold her on my lap and lay down. This seemed to placate her long enough to get their readings. They also had to check her o2 levels multiple times because of how low they were. Unfortunately, she has either has a drastic drop since the clinic visit last week in China, or those levels (which were 88 and 82...remember how excited we were to hear that?) weren't accurate. The readings this time were between 50-60.
We finally met our incredible doctor that has been involved in this process since the beginning of hearing about Zoe's heart condition. Dr. Edens has been friends with our friends, Renee and Steve Davis, since residency, and he truly has already been a tremendous blessing. Thursday was the first time we've met, but he's been emailing us back and forth with Renee since last spring sometime. Even while all this was going on with her health back in China, we were in direct contact with him via email. It could be our immense trust in Renee and Steve...it could be trust in the University of Iowa Hospitals...but more to the point, we really feel as though God has brought this man into our lives for a purpose that we can't even imagine. None of this...any of it...was by accident, but by design. I'm so thankful for that. I will continue to put my trust in that.
It's probably best if I just summarize as I remember...in no particular order of importance. There was good news and bad news. The good news was that Dr. Edens thinks they should be able to help. He told us something we'd not heard before...that he feared we would get there, and they wouldn't be able to do anything for her. It's probably best that we'd not heard that specifically, although that was clearly something we'd already guessed. He also said it wasn't as bad as he thought...to some degree.
Now on to the bad news. The medical records must've been pretty out of date...not intentionally, mind you...just the most recent thing they had...was old. There were several startling discoveries because they had been expecting to find something close to those records. Not so. Zoe's heart is so enlarged that it nearly fills her chest cavity. (Renee told me today that the heart will continue to get bigger and bigger over time as it works harder and harder to keep the body functioning.) The liver and other vital organs have been significantly displaced and/or enlarged due to the size of the heart. There is also a major valve leak. The left ventricle, believed to be missing, was actually there, but very small...and not functioning at all. There is an extra valve coming off the right ventricle. There were multiple other issues noted, including the lack of chamber division and the narrow pulmonary artery. There is also a great amount of fluid surrounding the heart, adding to the pressure she's feeling.
As you can imagine, it was a lot to take in...a lot to even breathe through...period.
But then he dropped the bomb. "In her current state, I wouldn't think she could survive more than another month or two."
Even as I type those words, it's hard to take in. I knew she was critical. I knew this was, and would be, harder than anything I'd ever experienced as a parent. But...a month?!? I just kept staring at her as she ate her little snack and threw the ball across the room. A month. All of this, God...for a month?!? Talk about "not fair"! This was the epitome of that phrase. My mind raced back to Peyton asking me so many months ago, "Mom, what if we get her here, and she still dies?" I remember very gallantly saying, "Well babe, that could happen...we just never know...but God's got everything...even the days of her life...under His control. And I know, that if ChaCha were to die, God will still use it for our good...even as hard as that would be!" Now I wanted to vomit in my mouth just thinking about those words I'd spoken. It's not that I still didn't believe them...it just a far more profound meaning now. A month. What are we doing here? What level of heartache have we willing taken on? I never claimed to be strong...if fact, I'm most aware of how very weak I truly am. I wanted to scream, "You've got the wrong girl!!! This is WAY beyond my pay grade!" I made a secret vow to make the process pay for delaying her care. I thought of all the ways I personally failed as a mother and a wife...but most of all, as a child of my Father. So little trust...so many opportunities.
I'm sure I asked the same questions multiple times...as if they'd never been asked. To be honest, most of the visit from that point on is a blur. Chris must've realized my incoherence...or maybe he had used up his patience quota...because all of a sudden, he leaned forward and said, "Ok...I'm a bottom line kinda guy...so let's hear it!" Gotta love 'em...or smack him, I guess...but this time we'll go with love.
SO...here's the deal. We get her on some meds immediately to reduce the fluid around the heart. Amazingly, the meds we had her on in China were accurate, including the dosage!!! Are you kidding me?!! And get this...according to the blood work, the meds were in the "therapeutic" levels...which means I really would make a good drug dealer!!! Yay for me!! (If you have no clue why I would claim that title, you'll have to read earlier posts...but woo hoo!) However, it made me weep with joy to get American versions of these meds that were LIQUID...no more crushing up the crack in the back seat of the car...bonus.
Once the fluid is reduced, we do a heart cath someday this week, to measure the various pressures of valves, lungs, and other things I don't understand. Thankfully, she will be sedated during this procedure.
Following the catheterization, Dr. Edens, the cath dude, and the surgeons will all meet to come up with a game plan. We will likely have the first surgery the following week. No idea if multiple surgeries will be needed or if it's done in one setting, but we are grateful to know they think there's something they can do.
It was also a bit discouraging to hear that she will likely be in the hospital for 2 weeks following the surgery, given the state of her condition. We will have to call on those circus skills to pull this off but are confident that God has, this too, under His watchful eye. Our little sparrow is in His hands.
- Why should I feel discouraged, why should the shadows come,
Why should my heart be lonely, and long for heav’n and home,
When Jesus is my portion? My constant Friend is He:
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.- Refrain:
I sing because I’m happy, I sing because I’m free,
For His eye is on the sparrow, and I know He watches me.
- Refrain:
- “Let not your heart be troubled,” His tender word I hear,
And resting on His goodness, I lose my doubts and fears;
Though by the path He leadeth, but one step I may see;
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me. - Whenever I am tempted, whenever clouds arise,
When songs give place to sighing, when hope within me dies,
I draw the closer to Him, from care He sets me free;
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.
Friday, March 22, 2013
Final Thoughts from China
I'm closing out our China thoughts with a final list of things I learned/was reminded of while overseas...it's a short list, but we all know I will not remember any of these things if they don't find their way to paper! Let's be honest...even then...it's a toss up. So boys and girls, our symbol for the day will be...drumroll, please....an actual bullet! (Yes, it's been there all long...yes, I just saw it for the first time. Pity points for jet lag in toddler land.)
- This has already proven true, but we realized our kids had never been in car seats...or seat belts...or maybe even a car, for the most part. This was not going to be pretty since it was nigh-on impossible to contain Zane even with Daddy holding him, and Zoe would meltdown if I wasn't holding her in a certain position in the vehicle. There were seriously times when Zane was hanging upside down by his foot...and loving every minute of it. (Once it's safe for Zoe to scream, we will readdress this issue!)
- Many people sent us messages of encouragement while we were in China...some of which were a little baffling, if I can be honest. It was likely a typo, but with all the stress going on over there, our brains just couldn't decipher some profound thoughts! HAHA! SO...if you ever ask me about your message that held great meaning, and the first thing out of my mouth is, "Confucius say..." you'll know it was you! :) Think of it this way, we needed some comic relief...you provided it whether you meant to or not! So from the bottom of my heart, I say, "Thank you!" :)
- When you normally take nerve meds to help you sleep at night...and forget to take them...you may need some therapy the next day with Dr. Toddler. Just sayin...a friend told me...
- McDonald's is to Chinese toddlers what Chinese food is to American mothers...think on that one. Same results.
- Secrets of eating a meal with the Z's...Zane: keep it coming...Zoe: have napkin to wipe hands at all times. Life will not proceed as normal until that crumb is gone.
- There are many myths about adoption that will be addressed in future posts. Suffice it to say, if you think you've got a finger on the pulse of this whole journey, your equipment is busted.
Thursday, March 21, 2013
Our Final Days in China/Arrival on US soil
I was tempted to leave this post blank since that's really what I remember of those days, but I've had spurts and visions about what happened so I'll do my best to give a summary before the memory completely fades.
I mentioned in the previous post that I was feeling very ill...yea...that basically covers it...well, maybe add a couple more "very's"...then you've got it covered.
When we left the hotel to head to the consulate/train station, we made a quick stop over to another pharmacy...I know, I know...to grab some aspirin for an emergency plan for the plane for Zoe. In case you're wondering, China doesn't have children's meds so we had to get regular aspirin...which I was to crush up again if needed. Again...backup plan of drug dealer was in full gear. Thankfully, the box was never opened.
There was a lot of hurry up and wait as with any traveling...but it really wasn't too bad. I would get Daddy set with kids and then rush off to a restroom. Not fun. For fun, though, Zoe and I wore matching masks...there's a picture somewhere which will turn up some day to haunt me, I'm sure.
I'm really fuzzy on what happened on the train as I felt semi-comatos the majority of the time. I continued to hold Zoe on my lap and hold the iPad to show her Barney and give her drinks of water whenever she yelled at me. Other than that, I would only gain consciousness when I would hear Chris yell for Zane to stop something...pretty sure he was naked at one point. On one of the occasions that Zane took off running down the aisle, and Chris chased and grabbed him, Zane bit down on his shoulder...hard. Oh my. Yea. This was the first day that he'd been angrily aggressive with us. He'd been extremely angry with us earlier when we woke him up to leave, and he'd been hitting us...or refusing to stop screaming and hitting. It wasn't looking good for the journey...and I was cyanotic.
Once we arrived in Hong Kong, we had to collect our luggage and then change our Chinese money to Hong Kong money...which...of course...was different. Biggest bummer to Hong Kong stay: no guide...no driver...on our own...with 2 toddlers...in 2 stroller...with 4 suitcases...and a handicapped mom who's only saving grace was the stroller that was used to hold her upright-ish. SO...we were told to grab a taxi...HA! Simple, right? Not so, my friend. The taxi line was very, very long...outside...where we had to wait with the kids and luggage...no choice...and it was raining. At one point, Daddy had to run back inside to a restroom, and I was left to push both strollers and the luggage cart...and not pass out. Some nice man pushed Zane's stroller up a little bit for me. He did not like that one little bit. It was really the first time he showed any concern at all about not being with either of us...but I was primarily trying not to die...or faint, if you're a realist...until Chris got back...then all bets were off.
Once we hailed a cab, we still had another 35 minutes to the hotel...pretty sure our driver was either trying to break the sound barrier or just his best time...because that car ride was unbelievable. I wouldn't believe it if I hadn't seen it. MANY close calls. Our guide from the previous city had given us Chinese directions to give the cab driver so although the trip was scary...at least it wasn't long! :)
Again, though, I was loopy...so once we arrived and got the room, I hit the bed and rarely opened my eyes...lots of hearing bits and bits, eating a few bbq chips and a half a sandwich. Chris took care of the rest...I'm sure he fed, diapered, and clothed them...but I couldn't have asked for anything more. He even had to get room service...which just burned his financial buttons...but there was no way he could take them to get something by himself. Room service, it is.
The next morning, I was able to walk much more and function on some level...I'll take it. I told someone, "...at least I was upright!" Perspective, people.
The trip we'd been dreading had finally arrived...it was still overwhelming with the "what if's" and various objections pe0ple were giving us for taking her now. You'll find out in later posts that it was a good thing we did. Another day. :)
Of course, getting a little fight back encouraged me to tease Chris about getting to the airport. I know things have changed with flights and security since 9/11, but let's just take a little peak into the window that we'll just call, "Airplane traveling with Chris Carr...film at 11." I think the check-in time for domestic is an hour to 1 1/2 hours...international was, I thought, 2 hours. Chris said 3 hours...3 hours, friends. C'mon now...Anyway, getting back to the spunk returning...when he told me the flight was at 11:10 am, I asked, "So does that mean we're getting there at 6:30 am?!?" He was less than amused. BUT...when we left the hotel around 8:30, I wanted to punch him in the proverbial nose...not the real nose, mind you...that wouldn't be right. Because did I mention our hotel was CONNECTED to the airport?!? Connected.
During check-in, Zane found out he preferred the coma mommy...this one was more stubborn than he was. Like I said, he'd had a rough couple days with being angry, and when I wouldn't let him take his socks and shoes off and throw them at the check-in counter, he continued. But Mommy was...Mommy. Sorry bud...I may still be seeing 5 of you, but all 10 feet are keeping those shoes on...so while Daddy tried to convince the airline clerk...and then her supervisor...and then her supervisor's supervisor...that Zoe was fit to fly, Mommy wrestled (not one bit of exaggeration) Little Man...and took a medal. No victory lap...just a marginal victory for motherhood everywhere.
We were asked for documentation affirming her clearance to fly. We had nothing. We were asked about testing or visits to clear her. We had nothing. At the end of the day, we just said, she's fine...look at her...we're good. She's having a needed surgery in the states. We must go. And they passed us through...praise the Lord. It seemed questionable with each new phone call, but in the end, we had no issues whatsoever.
We spent the next however many HOURS :) eating some breakfast, drinking some smoothies, face timing some friends and family, grabbing some little toys for the flight, and letting Zane run off some energy. By that time, we were pretty sure Zoe would be fine, and Zane would be hanging from the overhead compartments.
We were the most surprised...and the most blessed parents...there ever was and probably ever will be!!! Those kiddos were the most incredible troupers. 14 hours...fourteen hours...barely a peep. We had 4 middle seats together this time so Chris and I flanked them, guarding the innocent bystanders at all cost. Zoe refused to sit in her seat at all...well, she sat there to eat about an hour into the flight but as soon as the slightest turbulence was felt, she flew right back into my lap in a panic. Zane had a couple little moments, but for the most part, just played, slept...pillow/blanket/spread out on the middle seats, and ate...oh...and pooped. That was awesome. He made Chris give their new panda bears piggy back rides...many times...and then loaded Daddy's lap up with everything we owned...garbage and all...from the seats and floor. Daddy loved this part of the trip as you can imagine. I was only able to get up once in the 14 hours because of Zoe, but my legs still worked at the end so we're good. Mostly, we were just so very grateful that we had 2 happy, healthy babies when we strolled off that plane.
We were ushered straight to the front of an visa line...fantastic...had to wait for quite a while for luggage...but then had a brief time at the adoption/visa area for the kids to become US CITZENS (!!!!!)...then another pass through security to get rid of my dangerous fruit...and we walked out of there...with another 4 hour journey by car laying ahead of us. We were so thankful that Kenney Kolanowski offered to come to Chicago and drive us home to Iowa. We definitely needed it. In addition to the exhaustion, the kids had never been in car seats...or even seat belts. Yea...that did not happen. Tried...failed...tried again...done. Much screaming and terror. Safety will have to be addressed another day...but not today.
Today we brought home 2 of the Father's children to be raised in a family that loves and seeks Him with all their might (albeit imperfectly) so that they too will one day hear of their loving Savior who paid the price to adopt them long before we ever could...because He loved them even so much more than we ever did. That'll be the true happy ending to this story.
I mentioned in the previous post that I was feeling very ill...yea...that basically covers it...well, maybe add a couple more "very's"...then you've got it covered.
When we left the hotel to head to the consulate/train station, we made a quick stop over to another pharmacy...I know, I know...to grab some aspirin for an emergency plan for the plane for Zoe. In case you're wondering, China doesn't have children's meds so we had to get regular aspirin...which I was to crush up again if needed. Again...backup plan of drug dealer was in full gear. Thankfully, the box was never opened.
There was a lot of hurry up and wait as with any traveling...but it really wasn't too bad. I would get Daddy set with kids and then rush off to a restroom. Not fun. For fun, though, Zoe and I wore matching masks...there's a picture somewhere which will turn up some day to haunt me, I'm sure.
I'm really fuzzy on what happened on the train as I felt semi-comatos the majority of the time. I continued to hold Zoe on my lap and hold the iPad to show her Barney and give her drinks of water whenever she yelled at me. Other than that, I would only gain consciousness when I would hear Chris yell for Zane to stop something...pretty sure he was naked at one point. On one of the occasions that Zane took off running down the aisle, and Chris chased and grabbed him, Zane bit down on his shoulder...hard. Oh my. Yea. This was the first day that he'd been angrily aggressive with us. He'd been extremely angry with us earlier when we woke him up to leave, and he'd been hitting us...or refusing to stop screaming and hitting. It wasn't looking good for the journey...and I was cyanotic.
Once we arrived in Hong Kong, we had to collect our luggage and then change our Chinese money to Hong Kong money...which...of course...was different. Biggest bummer to Hong Kong stay: no guide...no driver...on our own...with 2 toddlers...in 2 stroller...with 4 suitcases...and a handicapped mom who's only saving grace was the stroller that was used to hold her upright-ish. SO...we were told to grab a taxi...HA! Simple, right? Not so, my friend. The taxi line was very, very long...outside...where we had to wait with the kids and luggage...no choice...and it was raining. At one point, Daddy had to run back inside to a restroom, and I was left to push both strollers and the luggage cart...and not pass out. Some nice man pushed Zane's stroller up a little bit for me. He did not like that one little bit. It was really the first time he showed any concern at all about not being with either of us...but I was primarily trying not to die...or faint, if you're a realist...until Chris got back...then all bets were off.
Once we hailed a cab, we still had another 35 minutes to the hotel...pretty sure our driver was either trying to break the sound barrier or just his best time...because that car ride was unbelievable. I wouldn't believe it if I hadn't seen it. MANY close calls. Our guide from the previous city had given us Chinese directions to give the cab driver so although the trip was scary...at least it wasn't long! :)
Again, though, I was loopy...so once we arrived and got the room, I hit the bed and rarely opened my eyes...lots of hearing bits and bits, eating a few bbq chips and a half a sandwich. Chris took care of the rest...I'm sure he fed, diapered, and clothed them...but I couldn't have asked for anything more. He even had to get room service...which just burned his financial buttons...but there was no way he could take them to get something by himself. Room service, it is.
The next morning, I was able to walk much more and function on some level...I'll take it. I told someone, "...at least I was upright!" Perspective, people.
The trip we'd been dreading had finally arrived...it was still overwhelming with the "what if's" and various objections pe0ple were giving us for taking her now. You'll find out in later posts that it was a good thing we did. Another day. :)
Of course, getting a little fight back encouraged me to tease Chris about getting to the airport. I know things have changed with flights and security since 9/11, but let's just take a little peak into the window that we'll just call, "Airplane traveling with Chris Carr...film at 11." I think the check-in time for domestic is an hour to 1 1/2 hours...international was, I thought, 2 hours. Chris said 3 hours...3 hours, friends. C'mon now...Anyway, getting back to the spunk returning...when he told me the flight was at 11:10 am, I asked, "So does that mean we're getting there at 6:30 am?!?" He was less than amused. BUT...when we left the hotel around 8:30, I wanted to punch him in the proverbial nose...not the real nose, mind you...that wouldn't be right. Because did I mention our hotel was CONNECTED to the airport?!? Connected.
During check-in, Zane found out he preferred the coma mommy...this one was more stubborn than he was. Like I said, he'd had a rough couple days with being angry, and when I wouldn't let him take his socks and shoes off and throw them at the check-in counter, he continued. But Mommy was...Mommy. Sorry bud...I may still be seeing 5 of you, but all 10 feet are keeping those shoes on...so while Daddy tried to convince the airline clerk...and then her supervisor...and then her supervisor's supervisor...that Zoe was fit to fly, Mommy wrestled (not one bit of exaggeration) Little Man...and took a medal. No victory lap...just a marginal victory for motherhood everywhere.
We were asked for documentation affirming her clearance to fly. We had nothing. We were asked about testing or visits to clear her. We had nothing. At the end of the day, we just said, she's fine...look at her...we're good. She's having a needed surgery in the states. We must go. And they passed us through...praise the Lord. It seemed questionable with each new phone call, but in the end, we had no issues whatsoever.
We spent the next however many HOURS :) eating some breakfast, drinking some smoothies, face timing some friends and family, grabbing some little toys for the flight, and letting Zane run off some energy. By that time, we were pretty sure Zoe would be fine, and Zane would be hanging from the overhead compartments.
We were the most surprised...and the most blessed parents...there ever was and probably ever will be!!! Those kiddos were the most incredible troupers. 14 hours...fourteen hours...barely a peep. We had 4 middle seats together this time so Chris and I flanked them, guarding the innocent bystanders at all cost. Zoe refused to sit in her seat at all...well, she sat there to eat about an hour into the flight but as soon as the slightest turbulence was felt, she flew right back into my lap in a panic. Zane had a couple little moments, but for the most part, just played, slept...pillow/blanket/spread out on the middle seats, and ate...oh...and pooped. That was awesome. He made Chris give their new panda bears piggy back rides...many times...and then loaded Daddy's lap up with everything we owned...garbage and all...from the seats and floor. Daddy loved this part of the trip as you can imagine. I was only able to get up once in the 14 hours because of Zoe, but my legs still worked at the end so we're good. Mostly, we were just so very grateful that we had 2 happy, healthy babies when we strolled off that plane.
We were ushered straight to the front of an visa line...fantastic...had to wait for quite a while for luggage...but then had a brief time at the adoption/visa area for the kids to become US CITZENS (!!!!!)...then another pass through security to get rid of my dangerous fruit...and we walked out of there...with another 4 hour journey by car laying ahead of us. We were so thankful that Kenney Kolanowski offered to come to Chicago and drive us home to Iowa. We definitely needed it. In addition to the exhaustion, the kids had never been in car seats...or even seat belts. Yea...that did not happen. Tried...failed...tried again...done. Much screaming and terror. Safety will have to be addressed another day...but not today.
Today we brought home 2 of the Father's children to be raised in a family that loves and seeks Him with all their might (albeit imperfectly) so that they too will one day hear of their loving Savior who paid the price to adopt them long before we ever could...because He loved them even so much more than we ever did. That'll be the true happy ending to this story.
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