...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 Grafting in. Show all posts
Showing posts with label Grafting in. Show all posts
Sunday, February 10, 2013
Saturday, August 25, 2012
6 months as a family of 6
Six months ago, in a government office in Zhengzhou, China, it started like this:
From cautious and hesitant, to terrified, to seemingly relaxed and happy--all in about 45-minutes' time.
Then, a matter of days later, our brood of kids looked like this:
And we were all happy--thrilled that our journey to Isabel had finally come to its fruition, thrilled to be home after the long adoption trip, thrilled to begin a new journey of grafting in a new family member and establishing 3 new sibling-relationship-dynamics.
As grueling and long as the adoption process can be, and as emotionally and physically taxing as the adoption trip itself can seem (especially when you leave the other kids home), I knew at this moment in time that our harder work was still to come.
The true journey for Isabel to grow genuinely comfortable, relaxed, and at home in our family, naturally, is an ongoing process. One that refines each of us uniquely. One that requires grace and patience and flexibility and stamina. The end result is beauty; like many things in life worth doing, however, the process is not always easy or fun.
I recently read a blog post by a blogger that has a way of capturing the truth of life and emotions with humor and great writing. You can read her post here. I cannot come close to capturing the truth of adoption with the degree of humor and insight that Jen has done. But I can completely relate to the different "stages" that an adoptive family goes through in that first year. And I am happy to tell you about our family and how things are going six months later...
It is amazing to me that we have been a family of 6 for 6 months already.
The first half of Isabel's six months with us was primarily spent at my side, helping me around the house, playing with me while the others were at school and work, running errands with me, and simply soaking up one-on-one mama time. The afternoons were my easiest time of day because, once the girls got home from school, Isabel was completely engulfed in their world of play and fun and I was freed to do housework and cook dinner.
Then came summer. Which, if you are a regular reader of this blog, you know has been quite full with vacations, camps, trips, medical visits, and summer fun. This has been 3 months for Isabel to spend with her siblings and friends in the neighborhood, get comfortable in a pool, play outside a lot, and spend time with extended family. She did well with a week of Vacation Bible School at church (in the same group as Lilly) and did some semi-private swimming lessons (again, with Lilly) at our neighborhood pool. Summer is more chaotic with less routine, and Isabel has had to learn to cope with lack of structure...not easy for her as she prefers the predictable. Our many road trips have taught her about the permanence of our home--we always come back to it when we've been away--and the older kids' overnight camps have taught her about the permanence of our family.
Through all of these months, we have been catching Isabel up on her immunizations and seeing a developmental pediatrician to assess her global developmental delays and determine what might be the cause of them. Her doctor is quite thorough and ran a battery of genetic tests (all normal) and ordered an MRI of her brain (which she underwent yesterday with no sedation--what a trooper) to see if there are any clues. If the MRI is normal, then we have to assume her delays stem from environmental/nurture factors and proceed from there. Otherwise, aside from being emotionally immature and physically uncoordinated, she is physically healthy and behaviorally pretty normal, for which we are thankful.
I also spent time in the spring working with the school system to get an IEP in place so that when she starts kindergarten in less than two weeks there is already a plan in place and her teachers will already know of her needs and delays. Isabel has been talking about school excitedly since the spring--watching Lilly get onto and off of the bus each day and do her homework made her excited to do the same--and she is still looking forward to kindergarten this fall. I am eager to see how she does with the separation initially, and with the adjustment to classroom routines and a completely English-speaking environment. We have school supplies, a back pack, and new shoes...so in that regard, we're ready.
Isabel's English is coming along...especially her receptive English (understanding what is said to her). In fact, tonight as we headed out for our family date night in the car, it dawned on Tom and me that she actually gets Tom's jokes sometimes now (and, like her siblings, rolls her eyes at them!) Her expressive English (what she can say) is a not quite as developed, but she can carry on a pretty good conversation and tell some stories in Chinglish. Today, she carried on an imaginary conversation with her friend, Yuan Yuan (the 12 year old whose family adopted her and was part of our travel group when we adopted Bella), on her toy cell phone, most of which was in English ("hello? what? What you say? Why? Where' your mama?") I'm sure that being in a school setting with only English being spoken will help with the expressive language...can't wait to see.
Isabel's early years are, and always will be, a mystery to us: Abandonment in a rural village of Henan Province at around the age of 3, for unknown reasons. Developmental delays identified upon abandonment. Living for the next 2+ years in an orphanage, with an intervening short stint of evenings and weekends with a "foster family." On her first "birthday" in our family (the date they assigned as her estimated birthday when she was brought to the orphanage), I found myself musing on her early years, wondering who had carried her, given birth to her, and held her those early days and months. Wondering what could possibly motivate a mother (or, perhaps, a father, or aunt or uncle or grandparent) to abandon their little girl at the age of 2 or 3? Any number of scenarios cross my mind, and I'm sure there are many more scenarios that would never even occur to me, coming from a foreign culture and background; but we'll never know for sure. So I am learning to become comfortable with the mystery and preparing myself to have to try to explain this mystery to her someday when she is curious.
Because of the mystery of her past, however, we face more unknowns in her future. I am certain that the road to her maturation and development will not be quick nor easy.
But--here's the joy--the privilege of loving her, watching her gain skills, teaching her many new things, giving her opportunities to develop and mature...that privilege is ours. Her family.
So here's to the next 6 months, and the next, and the next...may they continue to bring joy even amidst the growing pains, and may we each have eyes to see the long view.
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!
Subscribe to:
Posts (Atom)