There's Nothing We Will Be Able to Do...
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.
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.
