...Tom and I were in China, getting ready to meet Isabel for the first time.
I'm doing much thinking these days about the difference adoption makes.
Feeling a blog post coming in.
Be forewarned.
Happy Chinese New Year!
新年快乐！
Showing posts with label motherhood. Show all posts
Showing posts with label motherhood. Show all posts
Sunday, February 10, 2013
Thursday, November 15, 2012
Lord, Deliver me from my Irritability
This morning, the sound of my 6-year-old virtual twin girls giggling in the back of the car on our way to our weekly occupational therapy (OT) appointment was a welcome reminder of the joy of family, the blessing of two little girls from the same heritage getting to grow up as best friends and sisters forever.
Our morning had gotten off to a rough start and my mood had been sour--initially irritated by childish behavior--and then deflated as I steeped in the guilt of allowing my irritation to turn to harsh words.
You see, we have been spending two hours each week doing OT--Lilly for some issues with lack of flexibility and weakness in her right hand, Isabel for her deficits in gross motor and visual motor coordination. This chunk of time in our week has been a sort of mixed blessing to me.
So, this morning as I drove, I was wallowing in mommy guilt for having raised my voice at Isabel as we got ready to get out the door. She had come to me, as she often does, to ask whether she had gotten her shoes onto the right feet. This is something she almost never got right when she first came home from China. These days, nearly 9 months later, she gets it right about 75-80 percent of the time.
When she doesn't get it right, however, she dissolves into a pitiful floppy puddle of whines and moans on the floor. The fact that the shoes are on the wrong feet might baffle me, but it doesn't upset me. It's the whining and stomping and sudden physical limpness that does.
And this morning, I got annoyed. My voice was not pleasant. OK, I admit it. I sounded REALLY mean. Poor Isabel just froze, then cried harder. Lilly, on her way down the stairs to the front door, stopped, stunned, to quietly peer through the banister at me.
Just moments before this incident, the girls and I had been sitting together over breakfast reading about Moses receiving the ten commandments. We had looked at the passage in Galatians 3 that discusses our captivity under the law and the hopelessness without Christ. Our little devotional had encouraged us to confess our sins--and I had led out in prayer as an example to the girls by asking God's forgiveness for those times that I get impatient or irritated with my children and speak words that are not kind.
And then this. I immediately sought Isabel's forgiveness for speaking harshly. She granted it freely through her snotty tears.
I am in need of better strategies to guide Isabel to successful independent dressing.
I am in even greater need of better strategies to help me with mommy irritability.
Above all, I am in desperate need of grace. Both showing it, and receiving it. And the transforming power of the Holy Spirit in my heart.
Moments after Isabel had granted forgiveness and we had finished getting the shoes on the right feet, Lilly felt compelled to chime in "but Mom, you just prayed about that. And you still yelled."
Yes, my sweet child, I did.
Praise the Lord that He gives grace feely and shows what it looks like so clearly through His laying down of His life. He doesn't yell harshly at me when I mess up.
May I give it as freely, laying down my frequently unrealistic and selfish expectations more often. And may I receive it more freely when I stumble.
Above all, may my children learn more from how I recover from my mistakes than they would from any attempt at perfection.
Our morning had gotten off to a rough start and my mood had been sour--initially irritated by childish behavior--and then deflated as I steeped in the guilt of allowing my irritation to turn to harsh words.
You see, we have been spending two hours each week doing OT--Lilly for some issues with lack of flexibility and weakness in her right hand, Isabel for her deficits in gross motor and visual motor coordination. This chunk of time in our week has been a sort of mixed blessing to me.
- The services the girls have received is top notch and the results--especially for Isabel--have been astounding. She is making wonderful progress in so many areas. Their occupational therapist is wonderful, thorough, caring, and knowledgable.
- But (as you might have gleaned from my previous post), time has been my most treasured commodity in recent months and these many Thursday mornings spent sitting on a hard chair in the OT waiting room has felt like an unjust imposition on my selfish heart. Each Thursday I find myself feeling annoyed that I don't have a morning to just stay home, catch up on housework, and drink an extra cup of coffee.
So, this morning as I drove, I was wallowing in mommy guilt for having raised my voice at Isabel as we got ready to get out the door. She had come to me, as she often does, to ask whether she had gotten her shoes onto the right feet. This is something she almost never got right when she first came home from China. These days, nearly 9 months later, she gets it right about 75-80 percent of the time.
When she doesn't get it right, however, she dissolves into a pitiful floppy puddle of whines and moans on the floor. The fact that the shoes are on the wrong feet might baffle me, but it doesn't upset me. It's the whining and stomping and sudden physical limpness that does.
And this morning, I got annoyed. My voice was not pleasant. OK, I admit it. I sounded REALLY mean. Poor Isabel just froze, then cried harder. Lilly, on her way down the stairs to the front door, stopped, stunned, to quietly peer through the banister at me.
Just moments before this incident, the girls and I had been sitting together over breakfast reading about Moses receiving the ten commandments. We had looked at the passage in Galatians 3 that discusses our captivity under the law and the hopelessness without Christ. Our little devotional had encouraged us to confess our sins--and I had led out in prayer as an example to the girls by asking God's forgiveness for those times that I get impatient or irritated with my children and speak words that are not kind.
And then this. I immediately sought Isabel's forgiveness for speaking harshly. She granted it freely through her snotty tears.
I am in need of better strategies to guide Isabel to successful independent dressing.
I am in even greater need of better strategies to help me with mommy irritability.
Above all, I am in desperate need of grace. Both showing it, and receiving it. And the transforming power of the Holy Spirit in my heart.
Moments after Isabel had granted forgiveness and we had finished getting the shoes on the right feet, Lilly felt compelled to chime in "but Mom, you just prayed about that. And you still yelled."
Yes, my sweet child, I did.
Praise the Lord that He gives grace feely and shows what it looks like so clearly through His laying down of His life. He doesn't yell harshly at me when I mess up.
May I give it as freely, laying down my frequently unrealistic and selfish expectations more often. And may I receive it more freely when I stumble.
Above all, may my children learn more from how I recover from my mistakes than they would from any attempt at perfection.
Friday, April 13, 2012
On Solid Ground
What an amazing day today.
First of all, thanks to the many of you who sent me messages or left FB comments of encouragement--you're awesome. And thanks to those of you who were prayer warriors for all of us today. It is so evident to me that God is hearing and answering our prayers.
It feels good to be off of the rollercoaster, standing on the solid ground of truth. And it feels good to have much to celebrate today:
It is exciting to watch Lilly standing on solid ground, supporting her own weight, and even walking from the room to the play room several times today. She spent much of the day out of bed, and--despite fears overnight that her breathing was not deep enough and her lungs were suffering--she nearly weaned herself entirely from any suupplemental O2 this afternoon, and is on a minimal amount of nasal canula O2 flow tonight just because she tends to desat at night.
She had one of her iVs and her last remaining drain removed today. Each tube removed from her body warrants a little happy dance as that is one step closer to discharge.
She is no longer on regularly scheduled pain meds, but on an as-needed basis, and has been able to stretch out those doses as well.
And last, but not least (forgive me if it's TMI but if you'd had a child go through major surgery you'll understand what a big deal it is) she had her first post op BM today. Hooray. Things are moving.
For her part, Bella had a good day as well and was SO happy to have her sister out of bed an in the play room with her. And you know Lilly is feeling better when the sibling rivalry kicks right back in as well. We spent much time today in the play room making crafts, bowling, and making bead necklaces. They also had a tea party in the room and played with their Bitty Babies (thank you Aunt Wen for passing along Kaylla's old Bitty Baby for Bella!).
And we enjoyed a visit from Grammy and Pop Pop. It's always good to have folks come see us here!
We have light at the end of the tunnel. Dr. Campbell is really happpy with Lilly's progress, and has a few milestones for her to meet but the "D" word (discharge) did come up today...possibly early next week. We need some followup X-rays and a CT scan,and Lilly needs to meet some PT milestones (we'll work on stairs tomorrow).
All in all, everyone's spirits were much better today. Here's hoping for continued progress over the weekend and a speedy return HOME!
First of all, thanks to the many of you who sent me messages or left FB comments of encouragement--you're awesome. And thanks to those of you who were prayer warriors for all of us today. It is so evident to me that God is hearing and answering our prayers.
It feels good to be off of the rollercoaster, standing on the solid ground of truth. And it feels good to have much to celebrate today:
It is exciting to watch Lilly standing on solid ground, supporting her own weight, and even walking from the room to the play room several times today. She spent much of the day out of bed, and--despite fears overnight that her breathing was not deep enough and her lungs were suffering--she nearly weaned herself entirely from any suupplemental O2 this afternoon, and is on a minimal amount of nasal canula O2 flow tonight just because she tends to desat at night.
She had one of her iVs and her last remaining drain removed today. Each tube removed from her body warrants a little happy dance as that is one step closer to discharge.
She is no longer on regularly scheduled pain meds, but on an as-needed basis, and has been able to stretch out those doses as well.
And last, but not least (forgive me if it's TMI but if you'd had a child go through major surgery you'll understand what a big deal it is) she had her first post op BM today. Hooray. Things are moving.
For her part, Bella had a good day as well and was SO happy to have her sister out of bed an in the play room with her. And you know Lilly is feeling better when the sibling rivalry kicks right back in as well. We spent much time today in the play room making crafts, bowling, and making bead necklaces. They also had a tea party in the room and played with their Bitty Babies (thank you Aunt Wen for passing along Kaylla's old Bitty Baby for Bella!).
And we enjoyed a visit from Grammy and Pop Pop. It's always good to have folks come see us here!
We have light at the end of the tunnel. Dr. Campbell is really happpy with Lilly's progress, and has a few milestones for her to meet but the "D" word (discharge) did come up today...possibly early next week. We need some followup X-rays and a CT scan,and Lilly needs to meet some PT milestones (we'll work on stairs tomorrow).
All in all, everyone's spirits were much better today. Here's hoping for continued progress over the weekend and a speedy return HOME!
Thursday, April 12, 2012
Would Someone Please Turn Off the Ride?
...I think I'd like to get off.
Today has been a hard day.
Let me start by saying--and reassuring you--that Lilly is doing great. She is amazing and is making fabulous progress in her recovery. Bella, too, is amazing and is doing a great job of rolling with things here, despite having minimal understanding of what we are doing and why, showing amazing amounts of trust and--even though we sometimes expect even more--great amounts of patience with this whole experience. These girls are amazing. My older two back home--according to Nana and Pap Pap (who are also wonderful)--are amazing too. And I have an amazing husband who is doing his best to make sure Lilly's medical needs are being met well, care for Bella at night, stay plugged into work as much as possible while we're away, and make sure I am doing ok through this experience.
It's this mama that is having a hard time.
A few weeks ago, I alluded to a yet-to-be-written blog post about feelings of guilt and feelings of failure.
Those are two huge emotions. They plague me frequently. Especially lately.
Today was one of those days. Because Bella is pretty quickly bouncing off of the walls in this hospital room, I have felt compelled to get her out of the room to the play room or to roam the hallways or the sidewalks outside when she and Tom are at the hospital during the day. As a result, I have been missing much of Lilly's care and the medical discussions surrounding it. Tom, being a medic, is the better one to take part in these discussions (even though I like to pretend I understand what they are talking about). So I feel like I am not an integral part of Lilly's care and surely Lilly must feel like her mama no longer cares about her the way I used to. Those feelings were affirmed today when, upon my return with Bella after wandering around the hospital for a bit, Lilly declared that "I like Daddy better than you. And I want him to sleep here with me tonight. I don't want you."
Ouch.
Yes, I'm the grown up, and I totally knew what was behind those words. I didn't outwardly react to her words, but simply said "well, I still love you and am glad I can be here with you even though it's harder for me when I want to help you AND Bella." But her words cut into my heart. (side note: I am sleeping at the hospital tonight...as Bella and I were packing up to head out for the evening--and I had reached a place of peace about that prospect--Lilly realized she didn't really mean what she had said and was afraid NOT to have mama here.)
At the same time, when I am in the room and Lilly is needing my attention (and that of her daddy and all the nurses and a crowd of others--as was the case today when her O2 sats rapidly fell through the floor and she was in sudden, excruciating pain) I feel like poor Bella is left to sort of sit quietly in the corner, eating whenever we remember to feed her and whatever we manage to scrape together for her between cafeteria runs and snack bags and the many leftovers from Lilly's tray that she barely touches. It makes me feel like Bella surely feels like a second class citizen in this family at the moment. Even though Bella cannot articulate her feelings in the same way that Lilly can, her nonverbal communication of her feelings is increasingly clear to us.
And in the background of all of those emotions are the ones I feel when I think of my other two kiddos at home whom we left behind for 2 weeks just the month before last, and who are, once again, left at home without mom and dad. Not to mention the feelings of guilt associated with expecting SO MUCH of our extended family during these frequent occasions.
Hospital living is hard. Parenting virtual twins--one of whom is still learning our language and developing age-appropriate skills and behaviors--is hard. Being away from older children is hard. Commmunicating well in a marriage relationship through all of these circumstances is hard.
And so it is time to switch gears...riding the rollercoaster of guilt and failure is no fun and is just not right. Instead, I am will choose to do as Paul instructed: "Rejoice in the Lord always...do not be anxious about anything, but in everytthing, by prayer and supplication, with thanksgiving, present your requests to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus." Philippians 4:6-7
So let me express my thanksgiving:
Lilly is recovering so very well. Her pain has been managed really well (love the pain ball!), she is able to sit up with a little dizziness, and today she even stood up and took a few very small steps toward me. She had her chest tube removed today and is slowly being weaned off of her O2--all wonderful steps toward going home.
Bella is doing better than I could even have imagined with all of this. And she is totally charming all the nurses. And our ICU room us directly across the hall from the play room. How awesome is that?
The older kids are faring very well! And I love that our family members are getting to know our kids so much better by living with them for extended periods, especially because the US Air Force is quite likely going to move us far away from family once again in the next year or two.
Tom and Bella have a wonderful hotel room suite tonight a a very reasonable cost thanks to the Ronald McDonald House discount...still hoping for a room at the Ronald McDonald House at some point but the waiting list is long and not many folks are being discharged to open up space.
Yes indeed, my heart and my mind are both in need of guarding in Christ Jesus. Very much so. My very wise Mom once told me "The years are short. It's the days that are long." May I look to Him first thing each day and throughout each moment of these long days.
"But I will sing of your strength; I will sing aloud of your steadfast love in the morning. For you have been to me a fortress and a refuge in the day of my distress. O my Strength, I will sing praises to you, for you, O God, are my fortress, the God who shows me steadfast love." Psalm 59:16-17
Today has been a hard day.
Let me start by saying--and reassuring you--that Lilly is doing great. She is amazing and is making fabulous progress in her recovery. Bella, too, is amazing and is doing a great job of rolling with things here, despite having minimal understanding of what we are doing and why, showing amazing amounts of trust and--even though we sometimes expect even more--great amounts of patience with this whole experience. These girls are amazing. My older two back home--according to Nana and Pap Pap (who are also wonderful)--are amazing too. And I have an amazing husband who is doing his best to make sure Lilly's medical needs are being met well, care for Bella at night, stay plugged into work as much as possible while we're away, and make sure I am doing ok through this experience.
It's this mama that is having a hard time.
A few weeks ago, I alluded to a yet-to-be-written blog post about feelings of guilt and feelings of failure.
Those are two huge emotions. They plague me frequently. Especially lately.
Today was one of those days. Because Bella is pretty quickly bouncing off of the walls in this hospital room, I have felt compelled to get her out of the room to the play room or to roam the hallways or the sidewalks outside when she and Tom are at the hospital during the day. As a result, I have been missing much of Lilly's care and the medical discussions surrounding it. Tom, being a medic, is the better one to take part in these discussions (even though I like to pretend I understand what they are talking about). So I feel like I am not an integral part of Lilly's care and surely Lilly must feel like her mama no longer cares about her the way I used to. Those feelings were affirmed today when, upon my return with Bella after wandering around the hospital for a bit, Lilly declared that "I like Daddy better than you. And I want him to sleep here with me tonight. I don't want you."
Ouch.
Yes, I'm the grown up, and I totally knew what was behind those words. I didn't outwardly react to her words, but simply said "well, I still love you and am glad I can be here with you even though it's harder for me when I want to help you AND Bella." But her words cut into my heart. (side note: I am sleeping at the hospital tonight...as Bella and I were packing up to head out for the evening--and I had reached a place of peace about that prospect--Lilly realized she didn't really mean what she had said and was afraid NOT to have mama here.)
At the same time, when I am in the room and Lilly is needing my attention (and that of her daddy and all the nurses and a crowd of others--as was the case today when her O2 sats rapidly fell through the floor and she was in sudden, excruciating pain) I feel like poor Bella is left to sort of sit quietly in the corner, eating whenever we remember to feed her and whatever we manage to scrape together for her between cafeteria runs and snack bags and the many leftovers from Lilly's tray that she barely touches. It makes me feel like Bella surely feels like a second class citizen in this family at the moment. Even though Bella cannot articulate her feelings in the same way that Lilly can, her nonverbal communication of her feelings is increasingly clear to us.
And in the background of all of those emotions are the ones I feel when I think of my other two kiddos at home whom we left behind for 2 weeks just the month before last, and who are, once again, left at home without mom and dad. Not to mention the feelings of guilt associated with expecting SO MUCH of our extended family during these frequent occasions.
Hospital living is hard. Parenting virtual twins--one of whom is still learning our language and developing age-appropriate skills and behaviors--is hard. Being away from older children is hard. Commmunicating well in a marriage relationship through all of these circumstances is hard.
And so it is time to switch gears...riding the rollercoaster of guilt and failure is no fun and is just not right. Instead, I am will choose to do as Paul instructed: "Rejoice in the Lord always...do not be anxious about anything, but in everytthing, by prayer and supplication, with thanksgiving, present your requests to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus." Philippians 4:6-7
So let me express my thanksgiving:
Lilly is recovering so very well. Her pain has been managed really well (love the pain ball!), she is able to sit up with a little dizziness, and today she even stood up and took a few very small steps toward me. She had her chest tube removed today and is slowly being weaned off of her O2--all wonderful steps toward going home.
Bella is doing better than I could even have imagined with all of this. And she is totally charming all the nurses. And our ICU room us directly across the hall from the play room. How awesome is that?
The older kids are faring very well! And I love that our family members are getting to know our kids so much better by living with them for extended periods, especially because the US Air Force is quite likely going to move us far away from family once again in the next year or two.
Tom and Bella have a wonderful hotel room suite tonight a a very reasonable cost thanks to the Ronald McDonald House discount...still hoping for a room at the Ronald McDonald House at some point but the waiting list is long and not many folks are being discharged to open up space.
Yes indeed, my heart and my mind are both in need of guarding in Christ Jesus. Very much so. My very wise Mom once told me "The years are short. It's the days that are long." May I look to Him first thing each day and throughout each moment of these long days.
"But I will sing of your strength; I will sing aloud of your steadfast love in the morning. For you have been to me a fortress and a refuge in the day of my distress. O my Strength, I will sing praises to you, for you, O God, are my fortress, the God who shows me steadfast love." Psalm 59:16-17
Tuesday, April 10, 2012
A Whole New Dynamic at CHOP
Where to begin?
We had a wonderful weekend with Tom's family in New Jersey celebrating Easter. Bella got to meet many of her cousins and experience her first taste of a Cantilina Sunday dinner, and seemed to truly enjoy herself. It was fun to watch her slowly take it all in as more and more people arrived to hunt for Easter eggs and enjoy brunch at Grammy's on Saturday as well. And it was, as always, just good to see everyone again!
Lilly had begun to show signs of anxiety over the weekend, knowing that the big day to re-insert her VEPTR rods was quickly approaching. For Lilly, the sweetness of knowing she was going to miss a lot of school nearly outweighed the dread of surgery and hospitalization, but by Saturday night, as we read "Curious George goes to the Hospital" before bed together with Bella (who has had incessant questions about the days to come at the hospital), Lilly began to whimper and express her fears.
Totally founded fears.
The surgery today, Dr. Campbell had warned us, would be just as difficult as her initial VEPTR implant since they had had to remove 2 of her 3 rods due to infection. They planned to reinsert the two and expand the remaining third. So I was feeling nearly equally as anxious as Lilly (maybe even more so...but how can one really compare levels of anxiety?)
It has been just a little over a year since her original VEPTRs had been implanted. That surgery was a doozy and recovery was painful and tough. Since that big surgery, she has had 3 other surgeries and 5 other hospitalizations, none of which have been any fun at all. So who can blame her for feeling a little anxious?
So after our lovely Easter weekend, on Monday morning it was time to get down to business. We packed the car and headed to Philly, where Nana and Pap Pap were waiting (after their Easter festivities with my brothers in Baltimore) to scoop up Jared and Anna and take them back to VA for school to start on Tuesday. Meanwhile, Lilly, Bella, Tom, and I hung around CHOP most of Monday for consults with Dr. Campbell, X-rays, lab work, and a consult with anesthesia prior to Lilly's surgery this morning.
Lilly was the first case of the day today with a 6:15 am show time; she was back in the OR by 7:30am. Around 8:50 we got word that they had just begun to open her up, and by about 11:50 or so we got word they were closing. Dr. Campbell was really happy with the results--good tissue coverage in back, successfully separated scar tissue that had attached her lungs to her rib cage (her lungs had actually been herniataing through her ribs slightly), successful reinsertion of the two VEPTRs and successful lengthening of the 3rd remaining one.
Dr. Campbell has started ujsing a new pain management technique called a "pain ball" which injects a local anesthetic to her VEPTR sites, and that seems to really be taking the edge off of her pain. She has had only one morphine rescue all day long, and a little zofran for nausea. She has really been comfortable all day long, praise the Lord--just thirsty. I know the coming days will likely be hard, but I also know my Lilly is a little trooper, ready for the challenge.
The biggest difference between our experience today and previous surgeries (besides being more knowledgable about what to expect rather than blissfully unaware of just how hard this journey can be) is that we now have sweet little Bella in tow.
Normally, Tom and I are able (thanks to fabulous family members who help with Jared and Anna) to both focus on Lilly and take turns taking a break from the hospital room. This arrangement--with me spending nights with Lilly and Tom being my morning "coffee boy" and bringing Starbucks when he arrives from the Ronald McDonald House in the morning--has become comfortable, even though we'd both rather be at home in our own beds drinking our own coffee.
But now, we are taking turns caring for LIlly and entertaining Bella. We have spent a lot of time in the play room and roaming the hallways and going for walks outside today. I am spending a lot of time answering endless questions about what is happening here with Llly ("who is that? Are they here to help Lilly? Is she still sleeping? Does her back hurt? What are they doing to her now? What is that machine? Will we go home tomorrow? Where is your bed, mama? Who is that person? And that person? And why are they wearing gloves? And what's that noise? What did he say? What did she say? What are you doing? What's daddy doing? Where are you going?" And on...and on...and on...)
I'm sure, for Bella, this is all extremely confusing. We were so thankful to have Tom's sister in law, Wen, here for the day to help take care of Bella while we were focused on Lilly. She was able to help reinforce what we've been telling Bella about the likely length of our stay here (Yesterday, after simply getting x-rays, our first stop for our pre op day, Bella said "OK, are we done now? Can we go home?"). She really has no concept--how could she? We briefly discussed letting her ride back to Grammy's house with Aunt Wen where daddy could come back to get her the following evening,but quickly decided against that plan when she showed a disinclination to even go grab lunch downstairs with Aunt Wen while we waited for word from Dr. Cambpell from the OR. The coming days will be filled with lots of playroom trips, and--hopefully--as Lilly feels better, some playtime together in the hospital room. For Tom, his evenings will no longer be his chance to relax and unwind after stressful days at the hospital, but will be spent trying to communicate with his own child who does not yet speak his language and who can be easily frustrated when Mama is not there to help interpret.
So as I type this update, I am enjoying the stillness of not having to answer constant questions and the white noise of the bubbling water from LIlly's chest tube. Tom and Bella have headed to the Ronald McDonald House in Camden NJ for the night (only one night was available, but they'll take it) and I am praying that Lilly, after resting comfortably pretty much all day long, will sleep well tonight. We shall see.
Stay tuned. And thanks, as always, for reading!
We had a wonderful weekend with Tom's family in New Jersey celebrating Easter. Bella got to meet many of her cousins and experience her first taste of a Cantilina Sunday dinner, and seemed to truly enjoy herself. It was fun to watch her slowly take it all in as more and more people arrived to hunt for Easter eggs and enjoy brunch at Grammy's on Saturday as well. And it was, as always, just good to see everyone again!
Lilly had begun to show signs of anxiety over the weekend, knowing that the big day to re-insert her VEPTR rods was quickly approaching. For Lilly, the sweetness of knowing she was going to miss a lot of school nearly outweighed the dread of surgery and hospitalization, but by Saturday night, as we read "Curious George goes to the Hospital" before bed together with Bella (who has had incessant questions about the days to come at the hospital), Lilly began to whimper and express her fears.
Totally founded fears.
The surgery today, Dr. Campbell had warned us, would be just as difficult as her initial VEPTR implant since they had had to remove 2 of her 3 rods due to infection. They planned to reinsert the two and expand the remaining third. So I was feeling nearly equally as anxious as Lilly (maybe even more so...but how can one really compare levels of anxiety?)
It has been just a little over a year since her original VEPTRs had been implanted. That surgery was a doozy and recovery was painful and tough. Since that big surgery, she has had 3 other surgeries and 5 other hospitalizations, none of which have been any fun at all. So who can blame her for feeling a little anxious?
So after our lovely Easter weekend, on Monday morning it was time to get down to business. We packed the car and headed to Philly, where Nana and Pap Pap were waiting (after their Easter festivities with my brothers in Baltimore) to scoop up Jared and Anna and take them back to VA for school to start on Tuesday. Meanwhile, Lilly, Bella, Tom, and I hung around CHOP most of Monday for consults with Dr. Campbell, X-rays, lab work, and a consult with anesthesia prior to Lilly's surgery this morning.
Lilly was the first case of the day today with a 6:15 am show time; she was back in the OR by 7:30am. Around 8:50 we got word that they had just begun to open her up, and by about 11:50 or so we got word they were closing. Dr. Campbell was really happy with the results--good tissue coverage in back, successfully separated scar tissue that had attached her lungs to her rib cage (her lungs had actually been herniataing through her ribs slightly), successful reinsertion of the two VEPTRs and successful lengthening of the 3rd remaining one.
Dr. Campbell has started ujsing a new pain management technique called a "pain ball" which injects a local anesthetic to her VEPTR sites, and that seems to really be taking the edge off of her pain. She has had only one morphine rescue all day long, and a little zofran for nausea. She has really been comfortable all day long, praise the Lord--just thirsty. I know the coming days will likely be hard, but I also know my Lilly is a little trooper, ready for the challenge.
The biggest difference between our experience today and previous surgeries (besides being more knowledgable about what to expect rather than blissfully unaware of just how hard this journey can be) is that we now have sweet little Bella in tow.
Normally, Tom and I are able (thanks to fabulous family members who help with Jared and Anna) to both focus on Lilly and take turns taking a break from the hospital room. This arrangement--with me spending nights with Lilly and Tom being my morning "coffee boy" and bringing Starbucks when he arrives from the Ronald McDonald House in the morning--has become comfortable, even though we'd both rather be at home in our own beds drinking our own coffee.
But now, we are taking turns caring for LIlly and entertaining Bella. We have spent a lot of time in the play room and roaming the hallways and going for walks outside today. I am spending a lot of time answering endless questions about what is happening here with Llly ("who is that? Are they here to help Lilly? Is she still sleeping? Does her back hurt? What are they doing to her now? What is that machine? Will we go home tomorrow? Where is your bed, mama? Who is that person? And that person? And why are they wearing gloves? And what's that noise? What did he say? What did she say? What are you doing? What's daddy doing? Where are you going?" And on...and on...and on...)
I'm sure, for Bella, this is all extremely confusing. We were so thankful to have Tom's sister in law, Wen, here for the day to help take care of Bella while we were focused on Lilly. She was able to help reinforce what we've been telling Bella about the likely length of our stay here (Yesterday, after simply getting x-rays, our first stop for our pre op day, Bella said "OK, are we done now? Can we go home?"). She really has no concept--how could she? We briefly discussed letting her ride back to Grammy's house with Aunt Wen where daddy could come back to get her the following evening,but quickly decided against that plan when she showed a disinclination to even go grab lunch downstairs with Aunt Wen while we waited for word from Dr. Cambpell from the OR. The coming days will be filled with lots of playroom trips, and--hopefully--as Lilly feels better, some playtime together in the hospital room. For Tom, his evenings will no longer be his chance to relax and unwind after stressful days at the hospital, but will be spent trying to communicate with his own child who does not yet speak his language and who can be easily frustrated when Mama is not there to help interpret.
So as I type this update, I am enjoying the stillness of not having to answer constant questions and the white noise of the bubbling water from LIlly's chest tube. Tom and Bella have headed to the Ronald McDonald House in Camden NJ for the night (only one night was available, but they'll take it) and I am praying that Lilly, after resting comfortably pretty much all day long, will sleep well tonight. We shall see.
Stay tuned. And thanks, as always, for reading!
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