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 somehow still 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 reminded of, and to wrestle my emotions into a place of being ready to write this post.
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.
- 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.
- 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?!
- 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.
- 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.
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. We already knew that 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.
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.
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.
I don’t know what to say, but it certainly is overwhelming and I completely understand your concerns. Your faith in God’s provision for your family is such a strong testimony. I admire your strength. We will certainly keep Lilyan and your family in prayer as the preparations for her surgery begin.
I am very interested in how much you decide to tell her beforehand. Our youngest (soon to be 11) has severe scoliosis due to an undiagnosed nueromuscular disease. Our orthopedic surgeon has put off any surgeries thus far because she is very underweight (42 pounds) and pulmonary issues. She had a major respiratory emergency a year and a half ago, spending 5 weeks in intensive care. (6 months after coming into our family).
Our little girl wants desperately to “have a straight back” and understands that all the appointments we take her to are in hopes of that. She will likely be put in traction for a number of months before the surgery to insert rods. I often worry about how much information is too much and I don’t want her to be afraid.
so much love to you dear friend, and prayers of peace, laughter, and HIS provision.
Praying for her and you and very excited that she gets the opportunity to even have this surgery.
Lilyan is looking so grown up now! I will be praying for God’s courage and peace for you all.
Oh my dear Kathy and Scott and your precious little daughter, you all are so very brave. God bless you and keep you all safe and comforted by His Grace and Mercy. i will definitely keep each of you in my prayers. I only this afternoon on checking Facebook have learned of Lilyan’s condition and upcoming surgery in October. She has grown so much in this picture from the last time I had seen her. She is such a pretty girl with a sweet smile. I pray you will be able to have a happy summer together with all of her brothers and sisters.
Never has the phrase “Whom God calls, He also equips” meant so much to me. I am constantly amazed at the resilience of you and Scott and all your beloved children. Somehow He leads you to just the right words to encourage you, and to the people who can best care for your precious ones medically and practically. You are in my thought and prayers. Those beautiful children are so brave and it is obvious that they feel your love and God’s love comforting and encouraging them.
Dear Scott & Kathy, we will be praying for you during these weeks of rest. Your courage and dependence upon the Lord for far more than you can imagine is one of the greatest present day testaments to the gospel for me. I preached at a Good Friday service last night on the two crosses of Christianity – Christ’s cross and our cross. The cross you two have chosen to bear is bringing much glory to our God and so much love to these children, and to the ones they will love and serve one day.
We will also be praying for Lilyan’s surgery. She and Elizabeth being baptized on the same day has stayed in my mind, and reminds me of Lilyan often.
Thank you for stirring us up to love and to good works (Heb. 10:24).
Wow!! Thinking of you and praying always.
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