Mid-Surgery Update

Lilyan was taken into the OR at about 9:15 am this morning. We were told not to expect them to be done until at least 9:00 pm, and very possibly later. She was calm, but alert and watchful and fighting tears a bit, but she did so well with all of the pre-op pieces.

Lilyan's Spine Surgery - Pre-op

It took them about two hours just to get her positioned and everything set up, and the surgery actually didn’t start until about 11:00 am.

In addition to the scary risks we were already prepared for, we learned this morning that there is also risk of skin breakdown over her ribs and even scarring from skin breakdown on her face, all because of the need to keep her in the same face-down position for the full plus or minus 12 hours of surgery. Please keep praying for our baby.

We have been given a private waiting room because her surgery is so long, so we are resting comfortably during the wait, and we just got our first full report.

Neurosurgery has completed their part and Lilyan’s neurosurgeon just spent some time talking to us. Her spinal cord was stretched tighter than expected due to the kyphosis (“humpback”) in her lower back, so his part took at least twice as long as expected. But all went well and he felt really good about things in the end.

He has now handed Lilyan over to her orthopedic surgeon so he can start his part, which, from what we understand, is the longest piece. He will be removing all of the bones in the large kyphosis and also inserting rods the full length of her back. They will have to fill in the empty space left after the bones are removed from the kyphotic part of her spine by anchoring the new end of the spine to the sacrum. We are hoping that there are enough sacral bones in Lilyan’s body to do this, however, because one of her primary diagnoses is Sacral Agenesis (missing sacrum), she only has a small portion of the sacrum, so we don’t, yet, know if there is enough bone there to do the trick. That’s next on the agenda.

We asked a few questions about how her blood pressure is looking (good so far) and how extensive her wound will be. Her neurosurgeon told us that she is definitely opened all the way up, and that’s why the third surgeon, her plastic surgeon, is waiting for her turn, which will be a complicated closing as the third and final piece sometime tonight.

Whenever Lilyan gets through this and wakes up, this new sweet little baby hippo is waiting for her.

New Hippo

Thanks so much for all of the notes and prayers all through the day. We’ll post again later in the evening as we know more.

48-Hour Surgery Countdown

Lilyan’s surgery is upon us now. Again. Hopefully, for real this time. (Details about the surgery can be found in this long post from almost a year ago; scroll about half-way down to get to the part about Lilyan.)

The tension in the air is palpable, and the butterflies in everyone’s stomachs are active.

We are scheduled to arrive at the hospital Wednesday morning (3/20) by 7am, and surgery is supposed to begin at 9am.

Thanks to my friend Carmen I think meals for the kids here at home during our week in the hospital are all provided for now.

Robyn and I have pulled together daily activities and crafts to keep everyone’s minds busy during our days apart, and this Friday, March 22, they will all be attending a benefit concert for The Shepherd’s Crook. Scott, Lilyan, and I are all very sad to have to miss this concert, but the excitement of attending is helping all of our other kids through this scary time. And we are inexpressibly grateful to Jason for coming to Cincinnati to do this concert for TSC, and for all of those who were part of helping to plan it. Please check it out and get your tickets while they are still available. You won’t be sorry. His songs and his stories have touched us so much over the past few months. Jason is a man who is honest about the pain of this life, who has asked hard questions, and who has written about those struggles. His music speaks beautifully to the hurting and questioning places in all of us.

Even though we head to the hospital on Wednesday, I had planned to try and stick to our our normal school schedule today and tomorrow to keep everybody busy and distracted, as well as keeping everyone on track with their school work as we approach the end of another school year. Unfortunately, that didn’t go quite as I had hoped today.

Just as Lilyan was finishing up her math worksheet this morning, she put down her pencil and said she wanted to tell me something. I could tell that she was pretty serious, so I stopped school and said, “Sure, Babe. What’s up?”

She said, “I wanted to tell you about a dream . . .” and then she started sobbing so hard, and tears started falling so fast, that I couldn’t understand her. She couldn’t talk at all. After several tries, she was finally able to tell me that as she woke up this morning she was dreaming that Greg (her brother-in-law who will be helping get all of our kids to the concert Friday night) came into her room and she was telling him that she didn’t want to miss the concert. At this point, the tears began flowing freely again and the sobs choked her speech. That was the whole dream, but there was so much emotion behind this.

I recognized right away that this dream represented so many feelings about this surgery. So we just stopped school for the day and talked.

Lilyan has always had so much trouble identifying her own feelings, and even more trouble expressing those feelings to anyone. Her days have, hisorically, been filled with so much fear and anxiety. We have seen lots and lots of progress since she came home to us, especially over the past year, but this is still a challenge for her. She surprised me so much by doing such a great job with this today. She asked questions and told me scary memories of her time in the hospital in China that she’d never shared before. We talked about the parts of this upcoming surgery that make her feel most afraid. It was a good talk, and she is so much more ready for this than she was a year ago — even more than she was in October. God’s timing is always perfect.

Roslyn, who had been finishing her own math sheet while listening, was clearly very upset for Lilyan. So when she finished her math, she spent time talking to Lilyan about her own surgeries and hospital experiences to help her kind of know what to expect with the special vascular access team when they do her IV, and how dizzy her head will feel when they take her into the OR after they give her her Versed, and again when she is waking up in recovery, etc. It was one of their sweetest sister moments, ever. She also told Lilyan that she could borrow her weighted blanked if she wanted and even some of her animals because her (Roslyn’s) animals might help Lilyan feel better because she can’t be with the other kids for those days.

Two Days Before Surgery #2

Roslyn trying to calm Lilyan’s fears by sharing her own personal experiences. Sometimes not knowing what to expect is the scariest part.

 

Two Days Before Surgery #1

Some lingering tears as she listens to Roslyn talk. Sweet, sweet girl.

We also talked about breathing tubes and pain medications and things that she might like to have in place in case she is scared and drugged during her immediate post-op period and her time in the ICU. She said she would like Daddy to have music ready on his computer and a speaker to play that music for her. I asked what music she wanted us to have ready, and she immediately said, “Michael Bublé, Jason Gray, and Laura Story.” In that order. Again, knowing what she wants, and making those wants and needs known, are all new things for her, and it’s so great that she is so much stronger in these areas before we have to do this. But now it really is time to get this behind us. We’ve all been waiting with it hanging over us for so long.

It was so encouraging for me to see how well Lilyan handled this conversation, but it was also very sad to see how much she is carrying inside of her little heart. It makes me dread the days ahead. Thanks so much for all of the prayers. We really don’t know what to expect over the next week, but we know that our good and loving Author will hold us close as He writes this next chapter of our story. We want to lean into Him as we move through whatever is ahead now.

We will do our best to post updates here and let everyone know how things go.

 

 

Finally a New Surgery Date

I can’t believe how much time has passed since our last update and since we got word that Lilyan’s surgery had been emergently postponed. It has been a long and frustrating few weeks as we’ve tried to get a new OR time scheduled for the three surgeons involved. I’ll spare you all those details.

In the midst of the frustration and normal life, though, some beautiful things happened.

One of the biggest highlights of the year was Raiza’s adoption. We still marvel at the miracles that brought this about and made this dream a reality. It still seems almost too amazing to actually be true.

Raiza's Adoption #1

With our daughter (officially!!)

Raiza's Adoption #3

Our dear Judge Randy Rogers who has been such a key part of all of our adoptions.

Raiza's Adoption #4

Jhannel wasn’t sure what all of the excitement was about

Raiza's Adoption #5

Raiza Jane Rosenow, signing with her new signature for the first time

Raiza's Adoption #7

Our three Bolivian-born children

After this we moved into the holiday season, and although there was plenty of stress (it would, after all, be impossible to do holidays for this many people without any stress), several of the kids came to us at random times to say that this was the least-stressed and most-relaxed holiday season they could remember having in quite awhile. Considering all of the major medical problems the family has had over the past three years or so, this makes sense. We did have an unusually low number of appointments and/or emergencies, and a lot of happy memories were made.

Between Thanksgiving and Christmas, our oldest son, Allan, and his wife and two little sons got to come home, and that was such a happy time for everyone. We got our first-ever photo of the two of us with all twenty-three of our children. Also one that included spouses and one with all twelve grands. We had hoped to get one of everybody all together, but by the time we got these three, the grandkids had had enough.

With All Kids 12-8-18 #1

The two of us with all 23 of our kids

All Kids and Spouses 12-8-18 #1

All of our kids and spouses (so far)

With Grandkids 12/8/18 #1

With our twelve grandchildren

Then Christmas. It was such a special year this year as we celebrated Christmas with Raiza for the first time since December of  2000, and for the first time, ever, with our granddaughter, Jhannel. It was also our first time really to celebrate with our newest Godwin granddaughter, Evie. She was home just before Christmas last year, but seizures resulting from her traumatic brain injury made it impossible for her to be a part of our celebration in any way. Her new incredible neurologist, and the amazing differences that a loving family makes, both combined to change this little girl into a different child over the past twelve months. And while she still has many struggles, and while we all hope to see even more progress for her down the road, she was able to be a part of the family celebration in some ways this year, and we praise God for the miracles that made this possible.

Christmas 2018 #1a

Once again, God miraculously, through the generous hearts of others, made it possible for us to provide Christmas for this huge brood. We can never fully express our gratitude for those who have allowed God to use them in this way.

Jhannel Christmas #9

Jhannel’s first real Christmas – lighting advent candles with Granddaddy

Jhannel Christmas #11

Leaving cookies for Santa Claus

Christmas 2018 #2

Filling all of those stockings on Christmas Eve

Christmas 2018 #3

Christmas dinner, 2018

And all through these weeks and months and special events, we’ve been waiting and waiting for a new surgery date for Lilyan. Since we didn’t know how soon this might happen, we have mostly maintained our family quarantine, which has been challenging for such a long period.

As I’ve said before, being away from church for so much of the past three years has been hard in many ways. We miss our church family, we miss gathering with them to worship and fellowship together, and we continue to look forward to the day when this current season in our life is past and we can, once again, attend regularly. But we don’t know how long this season will last. We trust God to walk alongside us until that day.

We still gather as a family on Sunday mornings in our family room, and as hard as this season is, and even though we would never have chosen this if God had asked for our input, it is so clear that God is doing some necessary and beautiful refining in some of our children’s hearts. We have seen, multiple times, that some of these works in their hearts wouldn’t have happened if not for these private and intimate family worship times — that this refining has actually happened because of  special family gatherings and periods of teaching and sharing.

Then finally, this week we got the answer we’ve been waiting for. Lilyan’s so-big surgery will now take place (Lord willin’ and the creek don’t rise) on March 20. So we will all start again with the process of preparing for the unknowns waiting for us on the other side of this risky and necessary operation for our girl. We are thankful for the relatively calm holiday season we had, and will always cherish the memories that were made over the past few weeks.

We, once again, ask for prayers for our hearts, the children’s hearts, and for Lilyan’s heart as we move through the next few weeks and then through this surgery and very long recovery. We are hearing much in the news about how terrible the flu is this year, so we will be continuing in as much of a quarantine state as possible. So just know, all of you who are part of our church family, that we miss you and look forward to being back with you when God makes that possible again.

I’ll close with one of my favorite Christmas stories from this year. Lilyan, just like all of her sisters, loves playing dress-up and getting all fancy for tea parties. We wanted to get the younger ones new dress-up dresses this year, but finding anything that worked for Lilyan’s deformed trunk began to look impossible. I spent four hours one day in early December searching the Internet and praying for something that would work. And then I found an amazing gal on Etsy. She offered to custom-make a most amazing princess dress for our Lilyan-girl and then wouldn’t allow us to pay for anything but the shipping! It turns out that she and her husband had already been considering adoption someday when their young biological children are older. And then even more incredible, this gal offered to help parents of other children with Lilyan’s disabilities by making dresses for their children, too. She and I are currently working on trying to make these connections between her and these parents. Divinely appointed connections are a regular part of life for followers of this amazing Father of ours. I so love watching Him work and cross paths and make beautiful things happen.

Lilyan was thrilled with her new dress when she opened it up for Christmas. I’ll end this post with a couple of pictures of our little Princess Lilyan.

 

 

Exciting News and Pre-Christmas Sale!

Books are here!!

 

Look what just arrived! Boxes full of Through the Branches: Tales From the Life of an Unusual Family. This is not, yet, the promised follow-up to our first book, but rather a smaller companion to that book.

This book, and our first book, Swaying in the Treetops, are both now available online at Barnes and Noble and Amazon. (E-books will be available there in the next few weeks.)

Swaying in the Treetops retails for $33.99 and Through the Branches for $17.49 (prices set by the publisher).

 

But we are offering, as a pre-Christmas sale, signed copies for $25 and $12, respectively, including shipping and handling.

 

Click here for details and ordering information.

Please make sure you provide the name(s) of the recipient(s) with correct spelling on that online form, and if you’d like a personalized signing, please share something about the recipient(s) and/or their story. Otherwise, we will be happy to just sign with a generic little note.

This is from the publisher’s Diagnostic Review if you’d like to know more about our newest book:

“[In Through the Branches, written] as a companion to their first book, Swaying in the Treetops, the authors share a collection of vignettes that offer an inspiring and entertaining look into the daily life of their large family. With both biological and adopted children, the authors use their real-life stories to encourage other parents and families to embrace the wonder of family relationships. The book is written eloquently and fluently, clearly expressing the story of a unique family and the daily happenings in their life. The writing is easy to understand, detailed, and beautifully written, showing the wonders of life in their family. The authors have portrayed valuable personal experiences, with humility and authenticity, that show true vulnerability that can greatly impact the reader. Many books about family life try to make everything seem perfect, but this book shows the reality of family life, with its challenges and victories, and reveals the beauty of genuine storytelling in family relationships.”

We are so excited to share these stories from inside our family’s home. All proceeds go to The Shepherd’s Crook Orphan Ministry.

Would you please help us spread this news by sharing this blog post?

 

 

Surgery Canceled!

Wow. We got a call from Children’s Hospital this afternoon, only about fifteen hours before this huge surgery. They’ve had to cancel. We don’t know much, yet. Only that there has been an emergency involving Lilyan’s primary surgeon. We do know that he has felt much urgency about getting this done, and that he would never cancel unless it was absolutely necessary.

Tomorrow morning we will call his nurse and get more information and try to figure out what the new plan is. Lilyan has had quite a bit of back pain this past week, so we are worried about having to put this off at all. And we know that coordinating schedules for three surgeons is a big deal, so we don’t know how quickly this could be rescheduled. And we don’t even know if this emergency is something that will prevent her surgeon from operating for a long time or not. We just don’t know anything, yet. So we wait.

It’s been a weird day, even before this phone call. Over the past week, God so graciously allowed us to put Lilyan’s surgery in a box and leave it there so that we could mostly just focus on being with the kids and doing fun things and watching their hearts for any struggles with anxiety over what’s coming. We were amazed at how little this coming event affected our time together or intruded into our thoughts. But when we woke this morning, knowing that surgery was only 24 hours away, it was suddenly all we could see and feel for the moment.

We had already planned to fill this day with making caramel apples, watching the Bengals, and carving our pumpkin for this year, but we felt somehow kind of numb and disconnected from ourselves and like we could hear every second ticking away on the clock as we moved through these activities with the kids. We knew, though, that we were glad that it was finally almost time to get this done. And then the phone call.

We gathered the kids and explained to them what had happened, prayed together, and are continuing with our plans for the day, but we’re also having a little trouble processing everything we are feeling now.

We will post more as soon as we know more. Thank you for hanging with us in this strange place of limbo. We know that, even though it feels like limbo to us and maybe even kind of out of control, God is still firmly in control and that everything is proceeding according to His plan.

I’ll close with a few pictures of our day together today.

Making Caramel Apples 10-28-18 #5

Making Caramel Apples 10-28-18 #6

Making Caramel Apples 10-28-18 #7

Pumpkin 2018

Making Caramel Apples 10-28-18 #1

Making Caramel Apples 10-28-18 #2

Making Caramel Apples 10-28-18 #3

Lilyan’s a little emotional over all of this, too. She said she feels both “happy and sad.”

Our Good, Good Author!

Well, God does write amazing stories.

I have some exciting news to share, but first, thank you all who prayed for Scott’s and my getaway. It really almost didn’t happen. We were 2 1/2 hours later leaving than we had planned (due mostly to continuing issues that needed to be talked through with a few of the kids), and then about thirty minutes down the road, I broke a tooth. That nearly did me in, and we almost gave up and went home. But it never started to hurt, so we just kept going. In the end, it was such a wonderful trip; it was, possibly, the best trip we’ve ever had together in our forty-one years of marriage. We are so very thankful that God blessed us with this time away, and we do feel much more ready to face Lilyan’s surgery on Monday.

Now . . .

Scott and I did our first adoption in 1998. From that point forward, the longest we ever went between adoptions was two years and four months. Until now. It has now been three years and two months since Nolan came home to us in August 2015. We felt pretty sure he would be our last adoption.

We were wrong.

We are adopting again, but this isn’t like any other adoption we’ve ever done. If you’ve read our first book, Swaying in the Treetops, then you may remember that our adoption journey started with a little girl named Raiza Sangueza in 1997. She was not eligible for adoption, but came to our family from Bolivia as a medical-foster situation at the age of seven, and her entrance into our lives changed us forever and proved to be the conduit for our first actual adoption of Nathan. It all started with her.

She lived with us for about a year on that first visit and became very much our daughter in our hearts. This story is a very long one, and maybe we will have a chance to tell it fully someday. But over the next few years, Raiza came to us two more times, staying as long as two years at a time. The last time we saw her, she was twelve years old, and it broke our hearts, and her heart, that we could never adopt her. When she returned to Bolivia that last time, we all lost contact with each other for a decade.

Again, it’s a very long story, but God eventually answered a million prayers and brought us back together. You may also remember that she and her daughter, Jhannel, arrived here in America a few months ago and have been living with us since that time. She is twenty-nine now, and never stopped calling us, or thinking of us as, Mom and Dad. I will never forget that hug when she got off the plane — our first hug for each other since October 2001. It’s such a miracle that she is here and back in our lives.

We are slowly learning about the really tough things she went through during that decade we were cut off from each other. But that is her story to tell someday when she is ready. We will say that she is going to be a very bright light for God’s kingdom someday, and will have so much help to offer others when the time comes. Her story of healing is a beautiful one, and it’s such an honor that God is allowing us to walk by her side for this incredible part of her journey.

We learned just a couple of months ago that, in the state of Ohio, it is possible to adopt an adult as long as there was a parent-child relationship between the adopters and the adoptee while the adoptee was still a minor. And as long as adoption is what both parties want.

There was. And we do. It is what we have all always wanted since God first brought us together.

So on November 19, our family will, one last time, gather in the Butler County courthouse as Judge Randy Rogers finalizes one more Rosenow adoption. On that day, Raiza Sanqueza will officially become what she has already unofficially been now for twenty-one years — Raiza Jane Rosenow.

We want to invite anyone who would like to attend. If you think you might like to be a part of our huge celebration over this miracle, please jot us a note to let us know. We will give you the rest of the details at that time. We would so love to fill the courthouse that day with people who have been a part of Raiza’s story in any way through the years and/or anyone who would like to join us during this very, very special time for our family as we officially adopt our 23rd child (who was actually really our first non-biological child). We are still shaking our heads in surprise at God’s revelation now of His plans all those years ago.

She will also be changing Jhannel’s name to Jhannel Amalia Rosenow, our precious and so-loved granddaughter.

Here is a beautiful picture of Raiza Jane and her daughter Jhannel Amalia. Just a quick story about the name. We used to, jokingly, call her Raiza Jane when she was a child, and when it came time to choose her new middle name for her adoption paperwork, she asked if she could have this one. The very cool thing about this is that the name “Jane” means, “gracious gift of God” — which is also the same meaning of “Jhannel.” This daughter and granddaughter are truly very gracious gifts from our God. We are awed.

Raiza and Jhannel 9/25/18

To Go or Not to Go

I just wanted to send out a fairly quick update to my last post because I promised to send a link for meal sign-ups in case anyone wanted to help provide meals for our kids at home while we are in the hospital with Lilyan. You should be able to go to this Meal Train link and sign up. There are some dates still left open, and all important info (number of people eating, time for meal delivery, food allergies, etc.) is there. We will also try to post photos and updates there as we go through the surgery and post-op period.

Also, a number of you have been praying about Scott’s and my getaway and have even written to ask if it’s going to happen. Man! It’s like all the powers of Hell have been trying to prevent this trip.

One of the things we felt was critical to helping make this happen was a day off for all of our big kids. So on Thursday, Scott and I sent the twelve oldest out for a time of rest and fun. Then he and I decided to see if we could manage a little trip to Sharon Woods for a quick hike with the nine who were left here (including granddaughter Jhannel). It was hard, especially with the limitations caused by my Achilles tendon inflammation, but we had such a great time with them, and I just iced a lot after we got home. I’ll post a few pictures at the end of this post.

The older ones had a great time and returned that evening refreshed and ready to jump back in. So we began making plans, in earnest, to move forward with the trip.

Then yesterday morning, everything began falling apart.

  • Roslyn has been having stomach pain for about a week. Short version of the story is that, as the week passed, we (along with a couple of her doctors) were able to determine that there didn’t seem to be anything wrong urologically, and that it appeared to be a problem with her colon and the incontinence issues she struggles with. Her colorectal doctor got involved, and we were able to help ease her pain, but it still hasn’t gone away completely. They are all stumped and are checking urine again to make sure we aren’t missing something. We were concerned about leaving her with things still unresolved.
  • Then there’s our dog, Saxon. He is such an awesome dog for our kids, but he has been unhealthy and on heavy medications for years (vet’s best guess is that he is allergic to, well . . . pretty much everything). He was doing so great this past summer that we tried slowly weaning him off all of his meds. He was better than we had seen him in years  — no allergy issues, no lethargy caused by the meds.  He was playful and frisky and so happy. We were down to only one pill a day and planning to cut that one today. But yesterday, he erupted in a terrible systemic allergic reaction. As I type this, Scott is off to the vet with him to get a steroid injection.
  • Ethan, whose seizures have been stable for months, had a mild seizure Thursday evening, after some hints of possible seizure activity during the past week. We reached out to his neurologist yesterday, and he has increased Ethan’s meds a bit, but we were concerned about leaving him with things still kind of uncertain.
  • One of our middle kids, and one of our younger kids, has been going through some behavioral regression. Parenting these kids from hard pasts is no joke, and it takes so much time and energy, and sometimes there’s no way to predict what might set them back. We thought we had gotten through this with both of them, but yesterday some really ugly stuff came out, and we are, once again, dealing with some deception and manipulation and pretty significant selfishness. We understand where this comes from, but it has to be dealt with, of course.

Anyway, we decided yesterday afternoon that we just couldn’t leave them, and were working hard to get a handle on our deep disappointment about this. Then some of the older kids urged us not to give up and cancel the trip, in spite of everything that was happening. They kept trying to assure us that they are well-trained and prepared to handle these things for just a few days.

Scott and I spent some more time talking and organizing a list of ways for them to handle the unresolved issues if anything came up, putting together a clear plan for the two whose hearts are in not such good places at the moment, and devising back-up plans that would involve reaching out to our oldest daughter and son-in-law if needed (even though they are dealing with many life struggles of their own right now).

Robyn helped me put a structured schedule in place that includes crafts and organized games and other activities, as this is a critical piece to keeping things flowing smoothly — unless unexpected problems come up (then they go to the back-up plan.)

Bottom line — barring any catastrophic events today or tomorrow morning, we are planning to pack up and try leaving at about noon tomorrow. This is mostly because it has become clear to us that it’s really important to our kids that we try to do this. They really want to give this to us.

If you think to pray that we can leave this all behind and just focus on each other and resting up for this surgery together, we would love that. Also, that the kids here will work together and that health issues will remain stable until we return, and even that they will have fun while we are gone. And especially for our children’s hearts as we stay the course in our attempts to help them all find healing from their histories.

That’s it for now. Thank you to all of you who pray for, and help care for, our family so faithfully, year after year.

Here are a few photos of our time with our younger kids on Thursday:

Park with 9 Littles 10-11-18 #2

Granddaughter Jhannel helping Lilyan get her jacket on

Park with 9 Littles 10-11-18 #3

Here we go

Park with 9 Littles 10-11-18 #8

We sure missed the big kids as we fought to get all those wheelchairs over the rocky path, but Ethan and Shannen and Nolan were great helpers

Park with 9 Littles 10-11-18 #4

Jhannel, stopping to check out some wildflowers

Park with 9 Littles 10-11-18 #11

Roslyn and Jhannel

Park with 9 Littles 10-11-18 #7

Our little hiking crew

And Now it’s Almost Time

Some hard, hard stuff coming at us, and Scott and I aren’t feeling at all ready for this. We’ve known for over four years that it was coming, but now that it’s here, we are not feeling strong enough or brave enough to face it.

When our first daughter was eighteen months old, we discovered we had another little one growing in my tummy. We knew we wanted more kids, but this was a surprise and sooner than we were planning, and I remember, as silly as it sounds now, worrying about how I would stretch the deep, passionate love I felt for this first daughter enough to fully embrace a second child. As she grew inside of me, these doubts faded, of course, and we loved her just as deeply and just as passionately.

This was true again for numbers three and four, and it was also just as true for numbers eight, fifteen, and twenty-three who came to us along a different path—adoption.

I am still surprised by the number of people who don’t really fully grasp that all twenty-three are ours just as much as the first four children are. We hear comments like, “It’s so nice of you to buy bikes for all of those kids,” or “You’re so wonderful to take those kids in and give them a home.” No one would commend us for giving our biological children a home, or bikes. That’s what parents do for their children, no matter how many they happen to have. I really do understand why this is hard for some people to comprehend, and it doesn’t make me mad, or even hurt my feelings.

But I do want the world to know that they are all fully and completely our children, just as if they had come through my own womb.

God gave each of them the name “Rosenow” before Scott and I were even born, and our hearts beat in sync with each one of theirs just as much as with our biological children’s hearts.

Lilyan falls at number twenty-one if we’re listing the children by the order in which they came home forever, and she also just happens to be number twenty-one if they are listed by chronological age.

But she isn’t just a number. She is our cherished and so-dearly-loved daughter, and she is her own person.

Strong. Independent. Smart. Sassy. Beautiful. Funny. And living life fully and courageously in spite of her very serious congenital disabilities.

Lilyan - Preparing for Surgery Oct 2, 2018

Lilyan was born with several severe deformities in her body that include scoliosis, lordosis, kyphosis, caudal regression syndrome/sacral agenesis, and spina bifida. I won’t go into what all of these words mean, but combined, they have left her with total incontinence, legs that are fixed in a bent “Buddha” position, a greatly exaggerated rib cage, complete paralysis from the waist down, and crowded organs that are squished into her too-small and terribly misshapen trunk.

Many doctors checked her out after we brought her home in June of 2014, and they all made it clear that she was facing at least one very major surgery at some point in order to, hopefully, prevent an early death. She was doing well at the time, and because of the risks associated with the surgery itself, they stressed that it was best to wait as long as possible before doing the surgery. I shared much about this in my last blog post in March 2018. I won’t repeat all of those details here, but you can see pictures showing Lilyan’s trunk deformities more clearly, as well as read details about this surgery by clicking here to go to that post. Just scroll about half-way through it to get to the part about Lilyan.

The surgery is now only three and a half weeks away. It’s time. Over the past couple of weeks, Scott and I have been to several in-depth consultations with each of the surgeons who will be part of the team operating on our baby all day on October 29. They have each focused on making sure we understand how huge this is, and all of the risks involved. They have told us that the risk of death, during surgery and immediately post-op, is real. Relatively small, but real.

When we asked what the cause of death could be in such a case, they explained that it would be either blood loss (they already know there will be transfusion for sure, just not sure how much yet), respiratory failure, or sudden and uncontrolled hypertension that can be caused when the neurosurgeon clips her spinal cord (one of the necessary pieces).

Our orthopedic surgeon, the lead for the team, in trying to express the “hugeness” of it all and the impact it will have on her said, “The trauma to her body and systems will be the equivalent of her being hit by a bus, and then rolled back over again.”

This is our baby. How does a parent hand over a child, knowing that this is what is coming? And how do we face the possibility of losing her?

We know that, without this surgery, early death is a certainty for our baby girl. And we know that waiting too long to do it carries huge risks, as well. If we wait till she has serious skin breakdown (which will happen), the risk of bone infection will be very high (associated with the skin breakdown); if she develops a bone infection, it can take years to heal—if they can even get it to heal at all—and they can’t do the surgery while there is any hint of bone infection. And if they wait till she begins to lose pulmonary function (which will also happen in time), then her system will almost certainly be too compromised for her to withstand the surgery. It would then just be a downward spiral for her while we watched her die. So, the beginning of the skin breakdown that we and her doctor saw developing in March made it clear that we can’t wait any longer.

We have no choice but to move forward with this. Lilyan deserves this chance at life.

But we are afraid. We are praying that God will keep our scared hearts looking to Him and His perfect plans and that, in these days leading up to the surgery, He will enable us to interact with Lilyan and the other children in ways that communicate tranquility and trust in this Father who brought all of our babies to us and loves us beyond comprehension—an Author who writes wonderful stories, even if they have dark parts in them.

In spite of the seriousness of this surgery, if all goes well, her hospital stay will be shorter than some of the stays with other of our children. They are predicting about a week. We will need to stay as focused as possible on Lilyan and her recovery during that time, so we are praying for a week’s worth of meals for our kids all here back at home. A dear friend is coordinating this for us, and I will write again once I have a link for that, in case anyone wants to sign up to help in this way.

This has already gotten too long, so I’ll try to wrap it up quickly. I haven’t updated in many months, so I’ll give a very short synopsis of the past few months.

  • Our summer was calmer than we had feared, but not as calm as we had hoped. With all of the cancer and surgeries and medical challenges we juggled over the past three years, many routine things had fallen way behind. And it takes lots of time to catch up on dental cleanings, eye exams, and routine physicals for so many people. We spent much of our time this summer checking those things off our list.

 

  • After learning more details about the major bladder surgery Jaden was supposed to have had at the end of August, we determined that the chances were too great that this surgery would cause decreased quality of life for Jaden, rather than an increased quality of life as it was supposed to do. So we chose not to go through with that surgery. Sadly, this means that there is now, at this time, no hope for him to get out of diapers. For an almost-nine-year-old boy who functions at a “normal” cognitive level, this was a huge emotional blow. Jaden is still working through all of this, and we would cherish your prayers as we try to help him. God knows His plans and what kinds of things are down the road for all of our babies. As our second-oldest son reminded us, the incredible “bionic” prosthetic hand he has now, was only science fiction when he was Jaden’s age. We will trust God, and wait for better options.

 

  • I’ve been fighting with Achilles tendonitis for about nine months now and finally had to figure out how to fit regular PT sessions into my life (in spite of eighty-two appointments over the past five weeks). I would love for this to heal so I can be back to full function before the holiday season.

 

  • Lastly, many months ago, Scott and I were given a gift  to slip away again for a few days to our favorite little cabin in Hocking Hills. Back when that gift arrived, we booked that cabin for next week, praying nothing would prevent us from going. We are supposed to leave on October 15, and we are praying so much that things will go smoothly for the kids back here at home and that our minds and hearts will be able to shut out all that is ahead with Lilyan long enough for us to just rest and connect with each other for those few days. We are feeling very much in need of this time before we go into surgery and the months-long post-op recovery ahead of us. If you should feel led to pray for that along with us, we would be so grateful.

We’ll try to do a better job of keeping you updated in the coming weeks. Thank you so much for all of the love and the prayers.

 

Rough Road Ahead

It is very late Thursday night. I can’t sleep. One week ago today, we took Lilyan and Jaden to see their spine surgeon for what was to be a pre-op appointment for Jaden and a routine check up for Lilyan. We left that appointment with hearts that were struggling with sadness and dread and some fear, and heads that were spinning as we tried to process the news we were given. While we weren’t completely surprised, since we had been seeing what we thought might be some changes in Lilyan’s spine — changes that we thought might mean it was time to start discussing her big spine surgery — we were definitely not prepared for all that hit us during that appointment. It has actually taken me a full week to try to digest all that we were told, and to wrestle my emotions into a place of being ready to write this post.

Visit to Spine Surgeon 3-2018

Jaden and Lilyan in their winter wheelchair capes as they waited to see our spine surgeon last week

I’ll first do a little bullet point catch-up on other aspects of life and then share more details about this visit.

  • Our financial situation: God has continued carrying us through this time, providing for our regular monthly needs, as well as surprising us by providing for some other pressing needs. These included a number of new IKEA dressers for kids whose dressers were literally falling apart (some of their drawers no longer even had fronts on them), and the amazing news that friends would be providing some essential medical supplies that our three youngest needed. We spent so much energy and time fighting with our insurance company over the past year, only to lose our final appeal not long ago when they told us emphatically that they would not be providing these supplies for the kids. What a huge blessing this news from our friends was!God also just recently provided money needed to purchase spring clothes for our kids, and if their needs in this area aren’t great, we hope to also stretch it to cover school curriculum needed for next year. I can’t even find words to describe what a blessing it is that He has sent this gift to us even before time to buy these things. Just amazing. We will keep trusting Him for all of our future needs and continue sharing those blessings with you.
New Dressers

Our young-adult and teen kids pitched in to assemble the new dressers.

 

 

 

 

 

 

 

 

 

Medical Supplies for R, J, &L

These supplies represent an indescribable gift for our three youngest who desperately need them.

  • Jaden’s surgeries: Jaden’s major bladder surgery that was scheduled for last month has been postponed now until August because of the mild case of flu that hit the family. However, his relatively simple surgery to lengthen the titanium rods in his back is still scheduled for April 9. He celebrated his 8th birthday last month (our third little one to turn eight within the last six months), and has adjusted to the idea now that he has to wait a little longer for his bladder surgery.
Flu 2018 #2

Fighting flu and watching the Olympics

 

 

 

 

 

 

 

 

 

Jaden's 8th Birthday #1

Jaden turns 8!

  • March birthdays: We also celebrated all three Rosenow March birthdays recently. Erin turned 35; Meghan, 22, and Ian, 16. How do the years fly by so fast?!

March 2018 B'days - Trio

  • New grandson: Our 11th grandchild, Wesley Xavier Rosenow, was born in Portland,  OR, this month. We are so excited and can’t wait to meet him.

Wesley Xavier

  • Changes in our family: You may or may not be following The Shepherd’s Crook Orphan Ministry’s current “Orphan Prevention” project. We have worked hard for the past two and a half years, and have been blessed with beautiful help from supporters, to get approval for Permanent Resident Visas for Bolivian single birth mom, Raiza Sangueza, and her young daughter, Jhannel, so that they could stay together and come to the U.S. to begin new lives here. They will live with our family initially until they are ready to be on their own. We will post an update on TSC’s site very soon, but the process has been completed and they will arrive in our home on May 15! Thanks to help from many people, their bedroom is ready and waiting for them.
Raiza and Jhannel - Spring 2017 #2

Raiza and her daughter, Jhannel

 

 

 

 

 

 

 

 

 

 

Raiza's Room #3

Their bedroom and bathroom in our home – ready and waiting for them

Now, on to the latest with Lilyan:

We knew that, eventually, Lilyan would have to have a really major surgery to her spine. We also knew that this surgery was such a huge deal that our surgeon didn’t want to do it until we had no choice. We have reached that point now. The two things he’s been watching for to determine when we couldn’t wait any longer are skin breakdown over her spine or worsening pulmonary issues. While her pulmonary status is still stable, she has started showing signs of skin breakdown, which puts her at very high risks for life-threatening infection now. After only one quick glimpse at her during her appointment last week, he said, “That’s it. It’s time. We can’t wait any longer.” He then had his nurse practitioner take Lilyan and Jaden out of the room while he discussed the details with us, explaining that the surgery is such a major thing that he won’t discuss it in front of the children needing it. Our hearts began to beat a little faster at this point, and we tried to prepare ourselves for whatever we were about to hear.

The first thing he told us about the “huge, huge risks” (besides the fact that many hospitals no longer even do this surgery because it’s so big, and that it’s “multiples of times greater” than anything we’ve ever faced and the biggest surgery he ever does), is that it’s the only surgery he does in which he has to list death as one of the actual possible risks. Relatively low — about 1 in 1000 — but still a very real risk. Without the surgery, however, death is certain for our baby. She would make it into young adulthood, at best, and her quality of life, without the surgery, would go downhill from this point due to worsening pulmonary function and constant wound infections from the skin breakdown over her spine. You can see from this picture that, because of the severe deformity of her spine (essentially S shaped in profile), Lilyan’s chest actually rests on her lap or the floor when she is sitting. As I said above, her pulmonary function is stable for now, but with continued growth, this would begin to change, and those changes would bring tremendous challenges for her.

Lilyan's Back 3-2018 #2

This next picture shows the shape of her spine. Just under the skin in the severe curve of her lower spine is bone which is pressing against the skin enough to cause it to begin breaking down. It’s also causing pain for her now, which is a fairly new development.

Lilyan's Back 3-2018 #1

The surgery will require three surgeons: Our neurosurgeon, our plastic surgeon, and our orthopedic spine surgeon — all of whom we trust.

Our neurosurgeon will have to clip the end of the spinal cord, which is a big deal because of the risk of further nerve damage (Lilyan is already paralyzed from about the waist down).

Then our orthopedic spine surgeon will remove all of the bones in the gibbous (the “hump” on her lower back), somehow straighten out the upper part of her spine (which actually curves severely in the opposite direction of her lower back), then connect the “loose” end of her spine to her not-fully-developed sacrum. Finally, he will fuse all of the vertebrae in her spine and insert rods the full length of her back on either side of her spine.

All of this work will leave a huge open wound, and our plastic surgeon will then have to somehow close this wound, which is apparently another really, really big deal. The Wound Care nurses (whom we also already have a great relationship with) will be a regular part of our lives for quite awhile afterward because healing will also be a big challenge and long process — much harder, for some reason, than with other surgeries.

Other serious concerns involve broken rods, failure of the fusion — which is apparently another really huge deal, but we don’t fully understand why — and very high risk of wound infection.

She will be in a body brace for about three months, and we are being told that it will be about two years before we can breathe easy and feel like we are past the point of danger.

We weren’t able to think clearly enough to go through all of our questions during last week’s appointment. We have come up with quite a few more since then, and our surgeon was already planning to meet with us again to go through those after we had some time to discuss everything with each other.

We believe that we have no choice but to move forward with attempting this scary surgery. Sweet Lilyan is not aware of any of these risks yet. She only heard him say that she will be taller and straighter when it’s over, and she is thrilled about that. In time, we will figure out how much she needs to know ahead of time to be prepared for the post-op pain and the long healing process. There is so much coordinating to do between all of these departments and so much pre-op testing to be done, that the soonest they could get her in is October. We should have a definite date by the first of next week.

In addition to our great concern for our baby’s safety and all that she will have to go through, we are grappling with the impact two major surgeries (Jaden’s bladder surgery in August, and then Lilyan’s spine in October) and Lilyan’s long recovery will have on the family after the already-hard last three years. We feel like we have been either in the middle of cancer treatment, in quarantine to prepare for surgery, in the middle of surgery, or working our way through tough post-op recoveries for as long as we can remember now. And this news means that there is no end in sight.

Our prayer right now is that God will give us a few weeks this summer to swim, play, rest, return to church, and just act like a “normal” family before we dive in again. Two summers ago, we were fighting our way through Scott’s very painful post-cancer-treatment period, and last summer is a blur of ER visits, Foley catheters, UTI’s, and so much pain as Roslyn and Kathryn struggled through the months leading up to their big surgeries. Life just hasn’t really even slowed for us during these past three years, and we would so love just a few weeks to catch our breath. Would you please pray, along with us, for this time of rest?

But, as always, our greatest desire is that we would be willing to walk peacefully down whatever path God has laid out for us; that we would trust His version of good, and lean into His strong embrace for real rest that can only come from Him.

The following quote has brought much peace to our hearts as we look down this daunting road:

“Imagine yourself threading your way along a most difficult and perilous path, every step of which is attended with pain and jeopardy, and is taken with hesitancy and doubt. Unknown to you and unseen, there is one hovering each moment around you, checking each false step, and guiding each doubtful one; soothing each sorrow, and supplying each need. This is no picture of fancy. Are you a child of God? Jesus is near to you at each moment, unseen and often unknown. He it was who, hovering round you, unknown and unobserved, kept you as the apple of His eye, and sheltered you in the hollow of His hand. It was He who armed you with courage for the fight, who poured strength into your spirit, and grace into your heart, when the full weight of calamity pressed upon them. Thus has He always been to His saints. The incident of the disciples in the storm presents a striking instance of this. Behold Him standing upon the shore, eyeing, with riveted gaze, the little boat as it struggled amid the sea. They were often invisible to human eye, but not a moment were they lost to His. Stepping from the shore, He approached them. Oh how majestic did His form now appear — walking like a man; and upon the water, like a God! They did not realize that it was Jesus, and were afraid. But their knowledge of Him was not necessary to their safety. It was enough that He knew them. And just as the storm was at its height, and their fears rose with their peril, He drew near and said, in His own gentle, soothing tone, unto them, ‘It is I; do not be afraid’ (Matthew 14:27).”
~ Octavius Winslow (1808-1878)

Thank you for reading this long post and for all of the ways so many of you love and support and pray for our family. It means so much.

Lilyan - 3-2018

Our Lilyan girl, who at the age of 8 1/2 is only about the size of a 4-year-old, is mostly just excited about the thought of being taller for now. She doesn’t understand all that is ahead for her.