Surgery Update

I’d hoped to get a longer update posted last night, but it just didn’t happen – comforting FangFang when she was feeling yucky and then sleeping when she was comfortably sleeping took priority! I do so appreciate the prayers and support from all of you, though, so I want to let you know where we’re at today!

To back up a bit, we’d been planning for months to do bilateral tibia rodding surgery yesterday, but when FangFang broke her right humerus about 10 days ago, I’d sent a copy of the x-rays to her orthopedic surgeons in Omaha, just in case seeing those images changed their minds about surgery plans. Their assistant e-mailed me on Monday and said Dr. Esposito would talk with me on Tuesday about our options, but I didn’t think much of it. The fracture wasn’t incredibly severe, and operating on two limbs at a time is a fair amount already. However, when we saw him in pre-op yesterday, he suggested that we prioritize what was giving her the most trouble but try to rod all 3 bones if possible. He said he expected the humerus to continue to give her trouble (it had fractured previously in China and hadn’t healed to be as straight as would have been ideal, so we’d already been suspecting it could be problematic for her over time), and as long as it’s incapacitated anyway, we might as well fix it now and just have one surgery and one recovery period for all of it. These are the moments when I am most thankful we come to Omaha for care. Having an orthopedic surgeon who has worked with hundreds and hundreds of kids with osteogenesis imperfecta and can make these recommendations based on years of experience that give him more expertise than anyone else in his field is so helpful to me as a mom when I need to make the ultimate decision about what we should do. Though I was somewhat intimidated at the prospect of FangFang having 3 limbs fully incapacitated for a complete 4 week recovery period, I agreed that his proposal made the most sense, so that became the new plan for surgery, and they were, in fact, able to get to all 3 bones! They were even able to use the FD rods, which can expand with her bones as she grows, which is awesome!

It turns out that adding on the humerus does change the pain management aspect of post-op recovery pretty significantly, though. For rodding in the lower body, the preferred strategy for pain management is to place an epidural, but that epidural does nothing for pain in her arm. When she woke up, she was pretty upset. She got some heavy duty pain meds, all in quick succession, and some oxygen to help her after an intense crying spell, and that all helped.

She remained pretty out of it for most of the afternoon and evening, though. She felt nauseous and wanted to keep her bowl nearby…which was a bit awkward, since she cycled pretty rapidly through cycles of wakefulness and sleep, so she often fell asleep with her head in her bowl. We’d try to lean her back and remove the bowl, at which point she would awaken, outraged, and yell, “I need my bowl!” Whatever you say, my child…

As the afternoon wore on, she started to have some longer stretches of more peaceful bowl-less sleep, though.

And then she had more periods of wakefulness, during which she had very specific instructions for me about how I was to sit next to her on her bed with my arm underneath her head. That I can manage 🙂

We were able to FaceTime with Matt and the kids, too. She remained pretty out of it until later in the evening, though. She had a pretty awake, alert period from about 7:30 – 10:00 last night, in which she seemed increasingly herself, beginning to show off what she was watching on her ipad to her nurse and chatting a bit more.

We actually got a pretty good, long stretch of sleep last night – by hospital standards, at least 🙂 We all slept pretty well until around 4:00, when FangFang was asking if it was time to wake up and eat breakfast, but I assured her it was still night time, and we went back to sleep again. In my least favorite of standard-hospital-policy experiences, though, the lab person came at 5:30 a.m. and turned on the light and announced that we needed to get the nurse to come in un-tape the board under FangFang’s IV hand so she could do a blood draw. I’ve already asked what I need to do to request that the orders for tomorrow morning’s lab work be changed to be for once she wakes up instead of at 5:30. How institutions that are supposed to be committed to doing no harm came up with the brilliant idea of waking children who would greatly benefit from rest at 5:30 in the morning to stick them with a needle and draw blood is beyond me.

But now that we are up, FangFang is enjoying one of her favorite benefits of hospital time – virtually unlimited screen time 🙂

She is definitely more herself this morning. She still tells me every 5 minutes or so, “Mommy, I feel sick,” but she is more interested in engaging, more friendly, and chattier with people she deems friendly (yes to her nurse, no to the lab tech who drew her blood).

The pain management team, which I love here, has already come by this morning, and they just turned off FangFang’s epidural. Assuming she does well without it, they’ll pull it, which is the first step in moving us toward going home, a prospect to which we are all looking forward. FangFang has asked about 12 times in the 2 hours she has been awake when she can go home to her brother and sisters. I’m anxious to get home, too. Today is Atticus’s actual birthday, and I’m so sad to be missing it 🙁 Of course it phases him not at all – we celebrated his birthday last week, and when I told him last night that it was his last day of being 2 and then he’d be 3, he told me, “But I am 3 years old, Mom!” Okay, my boy 🙂

Essentially, before we can go, we need to get FangFang transitioned to all oral pain meds, get her next Pamidronate infusion (which can happen after the epidural is pulled), and get her orthopedic surgeons to sign off on discharge. I’m hoping and praying for tomorrow (Thursday) morning. If you’d pray with us to that end, too, I’d appreciate it!

Another Trip to Omaha, Another Surgery

Later today, my mom and FangFang and I are heading to Omaha again in preparation for another surgery for FangFang. This time the plan is to do bilateral tibia rodding – inserting rods into both of her tibias (the main bone between the knee and the ankle). We’d talked with her surgeon last winter and spring, and he’d hoped that once her femurs were rodded, her tibias would do alright on their own, but since then she has fractured both tibias, with one of the fractures being quite significant. With that, the plan has changed. For her to continue to progress safely toward walking and other gross motor skill developments, which she very much wants to do, it will help her tremendously to have her tibias rodded. Those rods will straighten and strengthen her tibias, hopefully preventing them from fracturing so frequently, and when they do fracture, the rods will act as internal splints, lessening the severity and effect of the fractures.

I’m very much looking forward to having the surgery done. I’ll stop holding my breath and hoping not to hear that tell-tale crack every time she pulls herself up to stand on the couch and starts cruising along or scoots herself up into a low chair or tries to go up or down the stairs by herself.

I think it’s going to be safer for her, better for her ability to continue to develop her gross motor skills, and better for how her legs feel for her.

But I am sad that in order to gain all of those things, she has to endure yet another surgery. And we haven’t had great luck with fractures this last month or so. FangFang broke her right humerus just over a week ago.

And then the next day, she hurt her left arm. We weren’t sure whether it was a fracture or not, and she alternated between wanting to use it and wanting to have it splinted, and we have followed her lead on that. She seemed more confident that it was alright yesterday, so we’re hoping that’s a good sign and she’ll continue to be able to use it without issue.

Mostly I’m hoping that she won’t have all 4 limbs incapacitated at the same time. Two arms at once has been really hard, so I’m really hoping her left arm continues to feel alright!

Would you pray for our trip and for her surgery please? You could pray for these specific things –

  • Safe travels to Omaha and back.
  • My kiddos and Matt at home – Miranda, Madeleine CaiQun, and Atticus are staying home with Matt, who still has his regular teaching responsibilities this week, so the kids will be hanging out with various friends for many hours this week. Please pray for them (and for our friends), as this will be far from their normal routine, and pray for Matt, who will be working and parenting on his own for several days.
  • Successful bilateral tibia rodding – that the surgery would go well, that her surgeon would feel confident in the placement of the rods, and that she would have no complications. If you’re feeling particularly ambitious, you could pray that her surgeon is miraculously able to place FD rods, which are the type she has in her femurs, and which expand with the bone as it grows. He thinks her tibias are probably too small, and he’ll likely have to place a different type of rod, which he’d then have to replace sooner, but he still thinks that’s better than no rod. But we’ve heard from other parents that even when he expects not to be able to place FD rods, he’s sometimes able to do so, and that would be amazing.
  • Pain management – The Omaha Children’s Hospital pain management team is great, which is huge in terms of post-op care. Apart from making sure we avoid infection or actual surgical complications, pain management is really the biggest focus after surgery – and it’s a huge factor that plays into my next prayer request…
  • Discharge – We don’t know how long we’ll have to be inpatient after surgery. Assuming there are no complications, once we can get FangFang transitioned to oral pain meds, we should be able to leave and head home, and all of us do so much better here, so I’m hoping we won’t have to be in the hospital very long.
  • Emotional support in the hospital – FangFang is our ever-friendly, always joyful extrovert. But even she has a hard time after surgery. She’s hurting and sad and wants me to hold her and stay within her sight at all times. Please pray that my mom and I can care for her well not only physically but also emotionally.

And, while it feels a bit silly that I’m asking for prayers for myself as my daughter heads into surgery, would you please pray for me, too? I think it’s important to be real and honest about what my life looks like, and for those of you considering adopting a child with special needs, what life parenting a child with special needs looks like. Friends…I’m tired. We’re coming off of a week of hosting my family for Thanksgiving and caring for our 4 children, which is a lot normally, but add to that the fact that one child, for large portions of time, had zero arms available so needed an adult (mostly me) to do nearly everything for her, and I have a cold, and I have not been sleeping enough or sleeping well – it’s a lot. Physically, I’m tired. And beyond that I am emotionally weary. This will be our 4th trip to Omaha and our 3rd surgery in less than a year. I’ll be, again, leaving my other kiddos home while I travel, over Atticus’s birthday, no less, which is so hard on my mama heart. I’m tired from arguing with insurance companies; I’m tired from coordinating to get all the documentation we need for everything we pursue; I’m tired from reassuring jealous siblings who view a trip to the ER as a special “Mom date;” I’m tired from not having gotten to worship with my husband for nearly a year, as one of us is always in FangFang’s and Atticus’s classroom at church; I’m tired from coordinating logistics for all things; I’m tired from the ordinary demands of motherhood and friendship and life in general. I’m just tired. All around, I’m tired. I’m tired as I head into a week in which much will be demanded of me as a mom. Please hear me when I say, this is the life I want. Parents who knowingly adopt kids with special needs sometimes, when they express that things are hard, hear, “Well, isn’t this what you asked for?” Yes, yes it is. This is the life we’ve chosen; this is the life we want; and we wouldn’t trade it for anything. That doesn’t mean it’s always easy. I’m pressing on and persevering in the midst of all we have going on in our lives. I will continue to be the Chaos Coordinator and the Mama Bear that my kids need. But I would so appreciate your prayers for my energy, my stamina, and my heart as I do that.

I’ll keep you updated on how surgery goes and how we’re all doing as I’m able.

Here We Go! Some Specifics and Some Prayer Requests

The wheels are in motion for our trip, both literally and figuratively – my mom is on her way here so that she can spend the next 2.5 weeks with Matt and Miranda and Atticus. Tomorrow afternoon Madeleine CaiQun and I will head to St. Louis to begin our journey to China.

As we look toward our trip, I’m feeling acutely the need for prayer, moreso even than with our last adoption trip. Perhaps it’s that I know more this time – the more I know, the more I realize that I cannot make things happen all in my own power. It’s also that I’m traveling without Matt this time – I am so thankful that my brother and sister-in-law will be there with me, but it will not be the same as having Matt (and my other kiddos) there, too. FangFang’s medical needs are also more significant than Madeleine CaiQun’s were. Adoption trips are always intense, but I am especially feeling the weight of that this time. Would you pray with and for us? Here are some specific requests:

  • Please pray for our safety in traveling (and in remaining home). I know this is morbid, and I know that probabilities are small, but my biggest fear is that the plane will crash or that Atticus will dive head-first off the table, and we won’t all see each other again this side of heaven. Please pray that we all survive the next 2.5 weeks.
  • Please pray for Matt and Miranda and Atticus and my mom. I’ve done a lot to make their time as easy as possible – freezing meals and leaving gifts – but these next couple weeks are going to be a significant departure from normalcy for everyone. Please pray that they have fun together and do alright.
  • Please pray for all the travel logistics. These are not insignificant. CaiQun and I have 2 separate flight itineraries (one domestic; one international), meaning that the airlines don’t really have to work well with us for the international itinerary if our domestic flight gets delayed tomorrow and we miss the international flight. Then on Sunday, we’ll be taking a taxi from our Hong Kong hotel to the train station, where we’ll catch a train to Guangzhou. We then need to meet up with a van our agency is sending to take us from the first Guangzhou train station to the second, and we’ll take a train from that second station to Nanning. Please pray that all goes smoothly in all of this craziness.
  • Please pray for little FangFang’s heart. Her world is about to change dramatically, and we pray that her heart be prepared for and open to us as her family. We pray that we will be able to show her some love and fun early on. Please pray especially for her bond to me – children joining their families often can only handle bonding to one adult at a time, and my brother and sister-in-law are awesome, but it would be ideal for her to form her primary bond with me first. I am anticipating some heavy grieving from her as she leaves the nannies from her foster home and comes to us.
  • Please pray for Madeleine CaiQun. She has some anxiety about returning to China. My prayer is that this trip is a beautiful experience for her, but I’m not certain how it will go. Please pray for her processing her return to her birth culture, as well as her adjustment to becoming a big sister again. Please pray that she’ll allow my brother and sister-in-law to care for her at times, especially when FangFang is needing me.
  • Please pray for my endurance, patience, graciousness, and love. I expect these to be some of the most intense parenting weeks of my life as I mother 2 girls through huge experiences in their own lives.
  • Please pray for everyone’s health. I’ve had a persistent sore throat and just feel generally yucky, which I suspect is nothing significant, but I’m heading in to get it checked out this afternoon, just to be sure before I leave the country and my access to Western medical care. More significantly, please pray that we make it home without any of FangFang’s bones fracturing. I’m traveling with splinting supplies, but we won’t have such great access to medical resources in China to review my splinting or get x-rays easily or provide care in the event that a fracture would be truly serious.
  • Please pray for my brother and sister-in-law. I am so thankful that they are joining us on this journey. Please pray for the 3 of us adults to work well together through what will be, at times, a stressful trip. Please pray for our communication and for us to have great grace with each other.
  • Please pray for wisdom in decision-making. We are going to need to make the call of whether to request permission to visit FangFang’s orphanage. We will have to decide how much sightseeing seems wise and how much we’re going to need to just hunker down in our hotel room. There’s still some question of where we’ll stay in Guangzhou – there’s a serviced apartment building just across the street from the hotel at which our agency has people stay, and staying there would save us a ton of money and give us more space, and that’s where I’ve been planning for weeks to have us stay…but someone staying there last week gave it a pretty unfavorable review, and I’m still not 100% certain how we’re going to handle that situation.
  • Speaking of money, please pray for financial provision. We’ve applied with one more grant organization, and it would be a huge blessing to get some funding from them. We’ve borrowed money to pay the rest of the costs associated with this adoption, and please hear me when I say that this debt is worth it. We go into debt for houses and cars; bringing a child into a family is of so much more importance than those physical things. But needing to pay back thousands of dollars of debt at the same time that we are incurring thousands of dollars of medical expenses for FangFang’s initial medical care is going to be tough.
  • Please pray for these next 24 hours or so at home – I still have some packing to do and miscellaneous tasks to finish (paying bills, etc), but I’d also like to spend some good quality time with the rest of my family, whom I won’t see for so many days.
  • Please pray for all of our hearts as we are separated as a family for the next couple weeks. This is so hard for me.
  • Please pray that we can honor our God as we interact with various people in China. Please pray that we are respectful and loving in all we do.
  • Please pray that we keep our priorities straight and focus on what’s truly important about and throughout this trip.

I’m going to share the basics of our itinerary below so you’ll know a bit more of how to pray each day. Keep in mind that we’ll be 14 hours ahead of Central Time – so, for instance, our meeting FangFang on the morning of Monday, December 12 is still going to be your evening of Sunday, December 11. If you stay up late enough and I have good enough Internet and a calm enough baby, you may get to see some pictures – Sunday nights are a time of rejoicing in the China adoption community 🙂

Here’s our basic schedule –

  • Wednesday, December 7 – Madeleine CaiQun and I fly from St. Louis to Newark, where we’ll meet up with my brother Daniel and sister-in-law Sharon.
  • Thursday, December 8 – We have a 1:00 AM flight from Newark to Hong Kong.
  • Friday, December 9 – Because of the long flight and the time change, we leave at 1:00 AM on Thursday but don’t arrive in Hong Kong until 6:00 AM on Friday. We’ll head to our hotel to drop off our bags and then try to stave off jetlag by going out and sightseeing for the day.
  • Saturday, December 10 – We’ll have another day of sightseeing in Hong Kong and continuing to adjust to the time difference.
  • Sunday, December 11 – We’ll travel from Hong Kong to Nanning via the rather complicated route I detailed above.
  • Monday, December 12 – We’ll meet and take custody of FangFang.
  • Tuesday, December 13 – We’ll finalize FangFang’s adoption.
  • Wednesday, December 14 – Thursday, December 15 – We’ll hang out in Nanning while we wait for FangFang’s passport to be ready. We may take a trip to her city to visit the orphanage from which she’s from. We may do some sightseeing in Nanning. Or we may need to spend a lot of time building bonds and connections in the hotel room.
  • Friday, December 16 – We’ll travel from Nanning to Guangzhou.
  • Saturday, December 17 – We’ll have FangFang’s medical exam.
  • Sunday, December 18 – Monday, December 19 – We’ll hang out in Guangzhou, maybe doing some sightseeing, while we wait for the results of FangFang’s medical exam.
  • Tuesday, December 20 – We’ll have our consulate appointment to finish the process of applying for FangFang’s visa to enter the United States.
  • Wednesday, December 21 – FangFang’s visa should be ready.
  • Thursday, December 22 – We’ll take the train from Guangzhou to Hong Kong and then board a flight from Hong Kong back to Newark. The time change works in reverse this time – we’ll leave Hong Kong around 6:00 PM but arrive in Newark around 9:00 PM. My dad will fly out to Newark to meet us, and he and I and the girls will spend the night in a hotel.
  • Friday, December 23 – My dad and the girls and I will fly back to St. Louis, and we should arrive back in Columbia mid-afternoon.

Solid internet access is never a guarantee in China, and of course, actually caring for FangFang (and Madeleine CaiQun) is going to be my priority, but I do hope to be able to post regularly and keep you all updated, and should you want to send encouragement or prayers, I should be able to get them while there. Thank you for praying, friends!