Tag Archives: faith

Why We Are Not Pursuing Surrogacy

Sorry it’s been a while.
I’ve been too busy living my life to have time to blog about it.
I’m back, though. 🙂

In case you missed it, we finally are done with the “Why We Halted Our Adoption” series. I’m just as relieved about that fact as you, believe me.

Why is that?
Well, because that means that after about 6 months
, which included planning on going forward with adoption, being suddenly approached about surrogacy, suffering a miscarriage, and waiting out possible health complications from the unplanned pregnancy, our plans to start a family are back on! 😀

Not only are our plans for a family back on, they are in full swing, but we’ll get to all of that soon. We must deal with first things first, though. Before we can discuss how we plan on going forward with our journey to parenthood, we have to talk about what we are not planning on doing – at least not right now.

Long story short: Surrogacy is not currently an option for us.

It was far from easy coming to this conclusion, and it certainly wasn’t a decision that was solidified over night or without plenty of tears. We, especially I, really struggled with the whole thing, to be honest. I spent many nights praying, begging the Lord to just make it crystal clear to us what we were supposed to do with the selfless offer we were given literally out of the blue, an offer that to this day hasn’t been taken off the table by the other party.

I’m not going to lie. As much as we were floored (and humbled) by the opportunity to even be offered the ability to have a child through surrogacy, and as absolutely thrilled as we were with the prospect of safely having a biological child, our (especially John’s) strong, gut-reaction was to say “No” to surrogacy after finding out the costs surrounding it were going to be a lot higher (due to lacking fertility coverage like we thought) than we had anticipated or could afford without taking out a loan.  A lot higher – like $30,000+ higher (i.e. double what we thought) AT LEAST, that is if things went smoothly on the first try.

Hold the phone, people. I’m not married to Jimmy Fallon. $30,000 in the Payne (and I’m sure your) household is a huge chunk of change, and that was a conservative number. It could go a lot higher. To my husband, the more frugal one of the two of us, the new cost of pursuing parenthood through surrogacy might as well have been a $1,000,000. Not good, not good.

Though the new price caused us serious pause, we (especially John) struggled through our fear of not being good stewards of our God-given finances, should we go forward with surrogacy and have to take out a loan. We’d saved the past 3 1/2 years, but we hadn’t saved $50-80,000, hardly so. We hadn’t completely closed the door at that point, though.

We’re Christians and believe in the concept of God being Jehovah Jireh (the LORD as Provider), after all. We knew if He wanted us to pursue surrogacy, He’d provide the finances; we were absolutely sure of that. As I’ve always said, God doesn’t call the equipped but instead equips the called. We just weren’t sure if He was pulling us toward surrogacy or not.

Though due to the nature of how surrogacy became an option, many would (and did) argue that God had obviously made His will known and wanted us to go forward with pursuing it for His glory, it just wasn’t a black and white issue to us, especially to me. It was a really ugly, opaque shade of grey. If you know us, we are very much people who view life through very clear hues of black and white, so admitting we were struggling with making up our minds was hard for us. Though to our amazement (and yours) the idea of surrogacy had literally fallen into our laps, before we even found out about the new price tag associated with it, we really wrestled with the idea of spending out all this money (loan or not) to have our own biological children when so many children are waiting for their forever homes. Once we found out how much having a child through surrogacy was going to actually cost, that internal struggle just became that much harder.

We struggled with passages in Scripture that called us to take care of the orphans, and others which commanded us as Christ-followers to “die to self.” On the other hand, we also struggled with how it obviously wasn’t a sin for others (including our own parents) to have children of their own; they didn’t adopt nor deny their God-given desire to have biological children. Did that mean that just because the method by which one obtains a biological child may be different, and the financial cost may be astronomically higher, the outcome of having a blood-relative child through surrogacy really isn’t a sin (just thinking out loud here)?

Opinions on what we should do very much favored us pursuing surrogacy, no matter the cost. Clear answers, though, were few and far between. We felt torn in more ways than one.

Then life happened. A lot of lifeDuring all of this, we got unexpectedly pregnant ourselves, miscarried, and were left to deal with the loss of our biological child, a child we never imagined we’d ever conceive on our own. Talk about an unexpected, hard and fast detour in the road called life. Though that detour was filled with plenty of heartache, it also came with a blessing in disguise. We found something out that provided the clear answer for which we had searched for weeks. 

While we were dealing with my health being adversely affected by the miscarriage, we were made aware that the imunosupression medicine that most likely caused the miscarriage not only can affect any pregnancies that occur, but there is new evidence that is warning that it could also adversely affect your EGGS themselves

There is still not enough research to make a conclusive decision, since there hasn’t been enough post-transplant women of child-bearing age on it. Just knowing there were even shreds of evidence that pointed that way, however, was troubling enough for me. I knew the drug was toxic for a pregnant woman in any stage (especially the first trimester), which is why we never planned on becoming pregnant and consequently why I miscarried. The thought of my actual eggs being altered by this drug,  though, made feel physically sick. I have taken that drug every day, every 12 hours for almost the past 8 years. I had consumed literally thousands of these pills, during the years of my reproductive prime, without any knowledge of how much this nasty (but life-saving) drug could be affecting my fertility. 

To say I was disheartened is an understatement. Who wouldn’t be?

Even though I’m obviously extremely thankful to even be alive after everything I’ve gone through, and know I have no room to complain, I’m still a 27-year-old human. I’m also a woman, a woman with a God-given desire to have the ability to have children. I’m still a woman who wants to believe that, even though I can’t carry our child successfully, my eggs – my contribution to the creation of a human being – are full of life and not death. I’m still a woman who wishes my first child was currently still residing in utero instead of in Heaven. I’m still a human whose heart has been broken too many times to count.

At the end of the day, like you, I’m still a human who, a lot of the time for many different reasons, feels very broken and battered by the Fall and longs for Jesus to come and make everything new, as He’s promised to one day do.

Today is not that day, however.
So we wait.

While we wait, life does not always go as planned. Instead, unlike what prosperity teachers will tell you, life hurts; sometimes it causes what feels like absolutely unbearable pain. We press on, however, knowing that God is good and sovereign, no matter our circumstances.

No, He is not surprised by our circumstances or angered by our consequential emotions about said circumstances. He was human once, after all. All He asks of us is that in the groaning, during the daily war for our heart and our hope, we trust. All He asks is that we believe He is who He says He is, that we believe He has us in the palm of His hand when the waves of life come (and they will) crashing down upon us, that we do not lose heart in the One who has overcome the world.

Though the answer didn’t come the way we imagined, He gave us what we asked – a clear answer. That answer for our family, at least for now with the possible side effects from this particular medication, is a resounding “No.” Maybe someday I will be on different medication and that answer will change. I don’t know. I also don’t pretend to fully understand why He took us, and the precious, willing surrogate and her husband, down this path, either. In my finite thinking, it really just doesn’t make any sense, to be honest. Even though I don’t understand, I’m called to trust that His ways are higher than our ways, as are His thoughts (Is. 55:9).

So, for now, we move on. We don’t just “move on” as ones without hope but instead as those who trust and believe in Ephesians 3:20-21, which tells us:

Now to Him who is able to do far more abundantly beyond all that we ask or think, according to the power that works within us, 21 to Him be the glory in the church and in Christ Jesus to all generations forever and ever. Amen.”

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Filed under Adoption, Baby, cystic fibrosis, Health, Miscarriage, Purpose, Sanctification, Surrogacy

Joy Through Infertility – Another Perspective

Sorry it’s been a while.
I really wasn’t planning on being gone so long.
Then life – lots of it – happened.
One day here soon, we’ll get to (most) of that. Promise. 🙂
If you need to catch up on our journey, now is the time.
Things will move faster from here, Lord-willing.

For the time being while I sort out this new season of life, I wanted to share with you a powerful piece I read today by one of my favorite writers, Holley Gerth. Even though I’ve never met her (or honestly talked to her), I absolutely adore her transparency and was extremely blessed when I read this today.

Thank you for your heart, Holley. It is astonishingly beautiful.

I’ll be back soon to update you on where we are in our ever-changing journey to parenthood; exciting things are happening! God is faithful. 🙂

When God Changes Your Plans {An Infertility Update}

Nurture Bracelet by Lisa Leonard

Nurture Bracelet by Lisa Leonard

Friends, this post has been a long time coming. And I’m going to ask for your grace in advance. Because it makes me knocking-knees nervous to write it. Infertility is such a personal subject for many different reasons besides the obvious. But enough of you have asked and I’ve done enough praying that I just want to give you an update.

Before I start I want to include this disclaimer: If there’s one thing I’ve learned on this journey it’s that everyone’s story is different. What I’m sharing applies to my hubby and I alone.

When Mark and I married in 2000 we thought starting a family would be easy for us. Doesn’t everyone? When we officially began the process to become parents about five years later, we soon realized that wouldn’t be the case for us. Long story short, we went through years of grief, loss, doctor’s appointments and some serious wrestling with God. Out of that process came my first devotional book, Rain on Me {recently released in a new edition as Under God’s Umbrella}.

During that time, over seven people on separate occasions prayed over me that “God would bring new life through my words.” I tucked each of those statements away in my heart, not sure what they meant. God provided many other instances where he used people, even women I didn’t know, to speak into my life that I was not barren. And one day I looked at the Scripture passage about Eve who was called “the mother of all living” and I knew in my heart that every woman is a mama. Yep, every single one of us brings life into the world in some way.

And mine was not going to be through physical kiddos.

It took me years to even dare to whisper that to the closest people in my life. Our culture is so focused on physical family that it felt scandalous–and possibly unchristian–even to speak those words out loud. When I began to, the response was usually, “Have you ever thought about adoption?” The answer: Yes, of course we had. We had thought, prayed, wrestled with it. And yet we never felt like God was directing us that way. That was also an extremely difficult decision in a generation that is passionate about adoption {and rightly so!}.

From time to time I would ask God again, “Are you sure we’re on the path you want us on?” And inevitably within twenty-four hours someone would send me a note saying, “I’m not sure why I’m sending you this but I think God wants me to tell you you’re already a mother.” Truly. I wrote every single time that happened in my journal.

So I’m here, friends, almost ten years from the time we started this journey. And I want to tell you this: my heart is healed, my life is full, and I’m a word mama to the hearts of thousands of women around the world. I’m truly, deeply blessed.

We could have gone out and found a way to get a baby. We live in a culture where we can make that happen. And it would have done away with a lot of the hard questions we’ve had to answer the last few years. But if we had, it would not have been God’s best for us. I would have been like Sarah and whatever option I chose would have been my Hagar.

So I’m officially announcing that our infertility journey is done. We are in a new season–one of so much life, growth, and joy. One I wouldn’t have chosen but now wouldn’t trade because as David said in the Psalms “better is one day in your courts than thousands elsewhere.” In other words, I want to stay in the center of God’s will. I trust him to continue filling the mama-longing in my heart {Ps. 84:11}. I trust him to take care of me when I’m old {Is. 46:4}. I trust him to have a plan that is greater than mine {Rom. 8:28}.

And in that I can rest.

Even more than rest, I can rejoice.

It is well with my soul.

I am a mother. And it is good.

XOXO

Holley

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Filed under Adoption, grace, Miscarriage, Redeeming Loss, Sanctification

Why We Halted Our Adoption: The Answers – Part 21

You weren’t the only one who thought we’d never reach the final post in this series. It’s been a long haul, full of the highest mountain top experiences and the lowest emotional valleys, but we made it. 🙂

Let us review: Why did we halt our adoption?

The simplest answer is because we cannot afford to pursue adoption and surrogacy at once.
*For more on why we before 3 weeks ago we never dreamed surrogacy would be an option,  and how we were both finally at peace with moving forward with our adoption plans, please see Part 1.
*For more on the Facebook message I received 3 weeks ago from practically a perfect stranger that would rock anyone’s world, please see Part 2.
*For more on our surprisingly spirited 1st reaction to that message, please see Part 3.
*For more on the questions we both had, and the emotional struggle I went through, once the surrogacy option was presented to us, please see Part 4.
*For more on the initial, God-filled meeting I had with the woman who strongly felt God may very well be calling her to be our surrogate, please see Part 5.
*For more on the extremely disheartening news we received the day after I met with the woman who appeared to be an angel sent by God to carry our biological child, please see Part 6.
*For more on the strange, but strong, intuition I was feeling just a little over a week after our dream of surrogacy seemed to be slipping from our hands, please see Part 7.
*For more on all the signs that just weren’t going away and ultimately pointing to my intuition being most likely true, please see Part 8.
*For more on the dramatic turn of events that took place one early morning, please see Part 9.
*For more on the painful drive, and then wait at the hospital, I endured while waiting to hear if my intuition was true, please see Part 10.
*For more on the internal conflict I felt when I found out my intuition was wrong, please see Part 11.
*For more on the decision I made to go seek a second doctor’s opinion on what had (or hadn’t) happened, please see Part 12.
*For more on how we found out we had actually miscarried our baby, please see Part 13.
*For more of how the miscarriage affected me emotionally,  and why I chose to share my grief, please see Part 1, Part 2 and Part 3 of my “Redeeming Miscarriage” series.

*For more on the messiness of life, in particular my life, please see Part 14.
*For more on a new, mysterious word that was going to affect my life, please see Part 15.
*For more on the possible reasons why I was suddenly not in the best of health, please see Part 16.
*For more on my two days of testing to try to figure out the problem, please see Part 17.
*For more on the uncertainty that came with the initial results, please see Part 18.
*For more on the time I spent waiting to know our future, please see Part 19.
*For more on a sudden, unexpected change, please see Part 20.
_____________
Numbers talk, and mine had just decided to finally find their voice.

Just a few minutes prior, I was astonished to learn that a few months ago, the predictors used to measure our pulmonary function tests had made a rare and sudden change. This change was so rare, nothing like it had occurred since I started going to that hospital almost 9 years ago. Furthermore, if measuring my past few tests according to the old standards, the lowest my lung function had measured during all of this uncertainty was 97% – a number I had seen many times since my transplant in September 2005, instead of 92% That day in mid-May, it was actually sitting at 99%, a number just as high as it had been in September last year.  No, it wasn’t over 100%, but when you are trying to figure out what exactly is going on and every % is being scrutinized, having 99% (my normal is 98%-105%) of my lung function instead of 95% (what the new standards ranked me at that day), was a huge, huge deal.

Walking into the transplant clinic, re-calculated numbers in hand, I still didn’t know why this change hadn’t been taken into consideration, but I was about to find out. I was a woman on a mission. I wanted answers, and I wanted them now. I was sure there was a reasonable explanation. I just couldn’t come up with one off the top of my head.

I didn’t need answers just about my pulmonary function test.
I needed answers about my antibodies.
I also needed an answer on whether or not I was pregnant.
It was going to be an eventful visit.

I got all checked in, had my vitals taken, and got settled in my spacious patient room. It wasn’t long before my nurse, Kerri, came in and got the visit started. I really like Kerri. We get along quite well. She asked me the usual questions, told me about her weekend, and listened to my findings in regards to my pulmonary function tests. She seemed intrigued but clearly didn’t want to say much. She and I both knew Dr. Kirby was the one with whom to speak about this issue.

He wasn’t too far in timing behind her and, like usual, showed up relatively quickly. Unlike usual, another doctor was with him, tagging along to learn more about the never-dull world of lung transplantation. I had nothing against the guy, but I wasn’t really wanting to “confront” my beloved doctor in front of a complete stranger. I didn’t want to make him look bad in front of his colleague, but I had some things I had to say. Even though we had unexpected company, my curiosity couldn’t wait.

For the next several minutes we went over what I knew at that moment compared to what I knew when I drove into the parking garage approximately two hours ago. The poor doctor who came with Dr. Kirkby just silently stood in the corner while we discussed the ends and outs of pulmonary function tests and the change that, as far as I could tell, hadn’t been considered when analyzing my data since the miscarriage.

I asked extremely pointed questions, and like I expected, I got extremely honest answers. No, the sudden change hadn’t been taken into consideration. It was what it was. You can’t change the past. On the other hand, even if my lung function hadn’t undergone as large of a percentage change as first suspected (which was a very good thing), there still had been a change, a change worth investigating with everything else going on. Yes, the number had gone back up, but even if you used the old standards, it still wasn’t my highest reading recorded since my transplant. When you have antibody issues, it is better to be safe than sorry, after all.

Furthermore, the bronchoscopy would have still been necessary with all the antibody issues I was currently experiencing, since I hadn’t had any biopsies taken in 6 years; that’s like a lifetime in the transplant world. At that point, the pH probe test I also did 6 weeks prior wasn’t explicitly labeled “necessary,” but at least it was now done and showed I wouldn’t need surgery anytime soonIt wasn’t worth focusing on whether or not I should have done it. It was over. Bottom line, we were all thankful my lung function was up from 6 weeks ago and also higher the two times before that day than previously thought. For the sake of clarity, we agreed from now on, we would use the actual reading instead of the % any time my test results were discussed, in case of any more sudden changes in the predictors in the future.We agreed to be thankful and move on.

After months of uncertainty and so much emphasis on a percentage of lung function that never even existed, it wasn’t exactly the explanation I wanted to hear, but I accepted it and still loved my doctor just as much as before. I guess when you have been shown so often how much your doctor and your team care for you, when you’ve felt less than comfortable with – or genuinely cared for by- other physicians over the years, it’s easier to “forgive” oversights from those whom you trust. Yes, some unnecessary worry over my lung function could have been avoided. It didn’t matter, though. Unfortunately, all was not now right with the world. I still had a major antibody issue, one that was more than likely caused by the miscarriage and a serious issue, no matter what “system” you used to measure my lung function.

What I didn’t have, though, was a positive pregnancy test. Thank you, Lord!

Since we no longer had to worry about me being with child (still not sure why I was so whacked out) and my lung function was once again completely normal, our focus was once again on my antibody level.

Thankfully, the good news just kept on coming.

I was also informed that my former doctor, Dr. Astor, who had been in charge of my case from the first time I set foot into that hospital when I was 18 (2004) up until 2010 had been consulted about my antibodies and given his opinion.

“Don’t treat at this point,” was his answer.

Better yet, that was his answer even before the change in predictors for the pulmonary function test was even broached.

Though some in his field would disagree with him, with no signs of antibodies in my lungs, and my lung function so incredibly high, he didn’t find treatment necessary. Trusting his years of experience, Dr. Kirkby agreed with him. Consequently, as long as my numbers didn’t come back sky-high this time around, he made that sentiment his recommendation, as well.

If the numbers were still rapidly climbing, we’d just re-evaluate.
I was sent home to wait – again.

2 days later, my new antibody readings came back.

37% was my new measurement – only 2% higher than 6 weeks before. The numbers thankfully weren’t doubling anymore. No treatment was needed. I wouldn’t need to be seen for 3 months, and then we’d test again. We weren’t too worried at this point, though, since my lung function had gone up, I hadn’t shown any signs of rejection, and there were no antibodies in my lungs. For the first time in over 4 months,  I was free to go back to life as normal. Let me tell you. After everything we had been through the past several months, “normal” never sounded so, so good.

The End…of this chapter, at least. 😀

A new series to come on our plans to move forward with our family. You don’t want to miss it. 🙂

*John and I could never say thank you enough to those of you (strangers and friends alike) who have prayed us through this journey. Your love and support means more to us than you will ever, ever know.Whether you choose to continue to follow my blog or not, please keep those prayers coming! Thank you for giving us the privilege of seeing the body of Christ at work in such a beautiful, inspiring way. Though we never would have imagined what all 2013 would entail (thus far), we are so thankful that, though our circumstances have been far from consistent, not only has He remained constant but so have the prayers of the Saints. We love you all.

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Filed under Adoption, cystic fibrosis, grace, Health, Life, Miscarriage, Transplant

Why We Halted Our Adoption: The Change – Part 20

I’d know in a matter of a few hours if not only my antibodies and lung function were still out of control. I would also know if I was most likely soon going to be experiencing déjà vu and consequently making my health situation even more complicated with a second pregnancy.

I just wasn’t sure if I was ready to hear all of those answers
Too late. Ready or not, answers were coming.

Let us review: Why did we halt our adoption?

The simplest answer is because we cannot afford to pursue adoption and surrogacy at once.
*For more on why we before 3 weeks ago we never dreamed surrogacy would be an option,  and how we were both finally at peace with moving forward with our adoption plans, please see Part 1.
*For more on the Facebook message I received 3 weeks ago from practically a perfect stranger that would rock anyone’s world, please see Part 2.
*For more on our surprisingly spirited 1st reaction to that message, please see Part 3.
*For more on the questions we both had, and the emotional struggle I went through, once the surrogacy option was presented to us, please see Part 4.
*For more on the initial, God-filled meeting I had with the woman who strongly felt God may very well be calling her to be our surrogate, please see Part 5.
*For more on the extremely disheartening news we received the day after I met with the woman who appeared to be an angel sent by God to carry our biological child, please see Part 6.
*For more on the strange, but strong, intuition I was feeling just a little over a week after our dream of surrogacy seemed to be slipping from our hands, please see Part 7.
*For more on all the signs that just weren’t going away and ultimately pointing to my intuition being most likely true, please see Part 8.
*For more on the dramatic turn of events that took place one early morning, please see Part 9.
*For more on the painful drive, and then wait at the hospital, I endured while waiting to hear if my intuition was true, please see Part 10.
*For more on the internal conflict I felt when I found out my intuition was wrong, please see Part 11.
*For more on the decision I made to go seek a second doctor’s opinion on what had (or hadn’t) happened, please see Part 12.
*For more on how we found out we had actually miscarried our baby, please see Part 13.
*For more of how the miscarriage affected me emotionally,  and why I chose to share my grief, please see Part 1, Part 2 and Part 3 of my “Redeeming Miscarriage” series.

*For more on the messiness of life, in particular my life, please see Part 14.
*For more on what I never told you had happened after the miscarriage, please see Part 15.
*For more on the possible reasons why I was suddenly not in the best of health, please see Part 16.
*For more on my two days of testing to try to figure out the problem, please see Part 17.
*For more on the uncertainty that came with the initial results, please see Part 18.
*For more on the time I spent waiting to know our future, please see Part 19.
_________________

Surprisingly, my transplant nurse, Ashley, stayed calm while I told her about my possible second conception. No, you can’t make this stuff up. 

I made sure she knew I didn’t think I was pregnant. I had no idea at that point. With the strangeness going on, though, there certainly was a possibility, at least in my mind. I wasn’t convinced either way, but I knew well enough that I needed to be cautious and not just play a “wait and see” game. She agreed and ordered the HCG blood test, the exact same test that didn’t do me any good last time due to the type of “chemical” miscarriage I had. I knew this time, though, I was testing much sooner. As a result, if I really was pregnant, the test should work; we would catch the hormone in time before it, if things went like last time, rapidly dispelled from my body.

To be honest, walking into the lab to give my multiple viles of blood, whether or not I was pregnant again was the least of my worries. It was what it was. There was nothing I could do to change it at that point. Worrying myself to death for the next 2 hours wasn’t going to do any good. We certainly weren’t trying to conceive again. We hadn’t been the last time, either. We were using protection and still ended up “scoring a goal,” so anything was possible. I could definitely see it going either way and was learning toward it coming back negative. Please, Lord?

While my blood left my body and filled the tubes of all shapes and sizes, I kept my mind focused on the fact that God was still going to be sovereign and good, no matter the outcome of the test. He was still going to be sovereign and good, even if I lost another child. He was still going to be sovereign and good, even if I had to go into treatment for the antibodies and felt crummy the rest of the summer. He was still going to be sovereign and good, even if I went into rejection and lost my life because of one, or more, unplanned children. He wouldn’t change, just as He has remained the same since before the foundations of time.

I had my battled wound dressed and took the elevator up to do my pulmonary function test, since if I was pregnant, I was skipping my chest x-ray. The number of times I would do the tests was going to be determined by how things were going after 2 or so tries. Once I got there and settled, I was ready to battle myself. My competitive nature hadn’t waned since the last time I had blown through the device over and over again. Last time I was never satisfied with the numbers that popped up on the screen. After 1 blow, I knew things were going to be different this time around. I could feel it. After much fewer attempts, I settled with getting 95% instead of 92%. I could have continued to repeat the test, but I wasn’t in the mood. I was satisfied with my efforts. The main number wasn’t a huge improvement, but it wasn’t another decrease! We were moving in the right direction. Lord-willing, I wasn’t pregnant again, and my antibodies were recovering, as well.

Right before I grabbed my stuff to go, my respiratory therapist said something that would change everything.

I don’t remember her exact question, but it was something to the effect of, “Did the new standards cause your numbers to go up or down?” Confused, I responded, “New standards?”

It took her only five minutes to explain to me that a few months ago, the predictors used to measure our pulmonary function tests had made a rare and sudden change. This change was so rare, nothing like it had occurred since I started going to that hospital almost 9 years ago. 

Speechless, I let her continue. After we printed off my last 4 tests (spanning back to September 2012), we discovered that what was set as the standard for receiving a 100% had now been raised, at least for me. Now both of us were intrigued. So much so that we manually went back through and re-calculated under the old standards (the ones I had been tested under hundreds of times) my last two tests (April 1 – the day my miscarriage started & 1 in Mid-May) and learned that under the old standards, since the miscarriage, my lung function was neverever at 92%.

In fact, the lowest it had been measured during all of this uncertainty was 97% – a number I had seen many times since my transplant in September 2005. That day in mid-May, it was actually sitting at 99%, a number just as high as it had been in September last year.  No, it wasn’t over 100%, but when you are trying to figure out what exactly is going on and every % is being scrutinized, having 99% of my lung function instead of 95% (what the new standards ranked me at that day), was a huge, huge deal. 


Immediately, I felt a million weights lift from my shoulders, yet was in so much shock, I didn’t know if I could move. I had to move, though, because I couldn’t wait to go to clinic, calculations in hand, and
speak with my team about my incredible findings.


During my walk to the other side of the hospital, whether or not I was pregnant was the furthest thing on my mind. What had just occurred was all I could think about. As I re-played the previous 10 minutes in my mind, I admittedly had an obvious question – “Why was this change not taken into consideration?” After literally months of uncertainty, I was thrilled with, but also deeply confused by, my new-found results. Was this going to change everything? I was about to find out.

Part 21 to come!

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Filed under Adoption, cystic fibrosis, Health, Marriage, Miscarriage, Transplant

Why We Halted Our Adoption: The Wait 2.0 – Part 19

If you would have told me during the miscarriage what was ahead of me when it was over, I couldn’t have handled it. The grief over losing our child, after everything else that had already occurred in a short amount of time, seemed like more than enough for one person to bear. I’m not one to feel sorry for myself, but at that point, even I was crying “uncle.” Little did I know when I wrote Part 13 of this series what the next few months would entail.

Let us review: Why did we halt our adoption?

The simplest answer is because we cannot afford to pursue adoption and surrogacy at once.
*For more on why we before 3 weeks ago we never dreamed surrogacy would be an option,  and how we were both finally at peace with moving forward with our adoption plans, please see Part 1.
*For more on the Facebook message I received 3 weeks ago from practically a perfect stranger that would rock anyone’s world, please see Part 2.
*For more on our surprisingly spirited 1st reaction to that message, please see Part 3.
*For more on the questions we both had, and the emotional struggle I went through, once the surrogacy option was presented to us, please see Part 4.
*For more on the initial, God-filled meeting I had with the woman who strongly felt God may very well be calling her to be our surrogate, please see Part 5.
*For more on the extremely disheartening news we received the day after I met with the woman who appeared to be an angel sent by God to carry our biological child, please see Part 6.
*For more on the strange, but strong, intuition I was feeling just a little over a week after our dream of surrogacy seemed to be slipping from our hands, please see Part 7.
*For more on all the signs that just weren’t going away and ultimately pointing to my intuition being most likely true, please see Part 8.
*For more on the dramatic turn of events that took place one early morning, please see Part 9.
*For more on the painful drive, and then wait at the hospital, I endured while waiting to hear if my intuition was true, please see Part 10.
*For more on the internal conflict I felt when I found out my intuition was wrong, please see Part 11.
*For more on the decision I made to go seek a second doctor’s opinion on what had (or hadn’t) happened, please see Part 12.
*For more on how we found out we had actually miscarried our baby, please see Part 13.
*For more of how the miscarriage affected me emotionally,  and why I chose to share my grief, please see Part 1, Part 2 and Part 3 of my “Redeeming Miscarriage” series.

*For more on the messiness of life, in particular my life, please see Part 14.
*For more on what I never told you had happened after the miscarriage, please see Part 15.
*For more on the possible reasons why I was suddenly not in the best of health, please see Part 16.
*For more on my two days of testing to try to figure out the problem, please see Part 17.
*For more on the uncertainty that came with the initial results, please see Part 18.

___________
Waiting. That is pretty much all I got done health-wise for well over 2 months. To say it was a test on my faith and my patience, as well as John’s, is an understatement. There was nothing else we could do, though. It was our cross to bear . Just when we thought answers were just around the corner, we waited, and then we waited some more.

In the meantime, we tried to operate as if life were normal. Thankfully, the whole time I felt absolutely fine, so trying to go about life really wasn’t that difficult. We weren’t fooling ourselves very well, though. No matter what you say, life isn’t normal when you’re sitting around waiting to hear if you have to undergo major treatment. Due to the indecision, we couldn’t move forward with our family plans while we waited. I couldn’t guarantee my employer I wouldn’t be taking significant time off soon. I couldn’t promise my sweet friend that I wouldn’t be a sickly-looking bridesmaid.

I think of one of the hardest things, though, is I couldn’t even fully process all the emotions from the miscarriage, since my health had seemingly been suddenly hijacked since our loss and therefore demanded my time and attention. If you followed it, in my “Redeeming Miscarriage” series, I did do my best to be honest with myself (and you) about my grief. Now that you know what was really going on at that time, though, could you understand how emotionally spent and conflicted I truly was? I loved the Lord, and I believed strongly in His sovereignty and goodness, even amidst my suffering, but I was still human and very much feeling the effects of  living on this fallen earth. 

I had to be on constant guard for the enemy’s attacks. I was weak, and he knew it. If I wasn’t careful, I was either coveting my friends’ families, or wallowing in self-pity for my lot in life. I was either partly upset I ever even conceived a child, or extremely upset thinking about John getting to marry and have a family with another woman after I die due to us unexpectedly conceiving our biological child, who also died. Yes, I realize that last example is slightly dramatic, but when you live my life, you know that dying before your spouse, and him re-marrying, most likely is your reality; my current situation just brought to surface the emotions that surround that probable fate, emotions to which most could never relate.

There were also those nagging questions that plagued me late at night. “When is enough, enough?” “Lord, is it wrong to want to glorify You through “normal” life, instead of through trial after trial?” “Am I really going to end up dead after all of this?” “Will John resent me, if I do?”

For the first time in a long time, I felt like I was going to break under the pressure of life. I longed to go back to January 1, 2013 and re-start the year. I longed to go back to when were just going to adopt and be done with it. I couldn’t turn back the hands of time, though. I had to live in my present reality, and that reality was filled to the brim with uncertainty.

Answers were finally promised toward the end of June.

The miscarriage had happened the first week of April. I was first approached about there being a problem the end of that week. Over two-and-a-half months later, I was ready to know the direction in which my life was going. I was ready to know if motherhood was in my immediate future, or if I was once again going to have to put my desire for a family on the back burner and deal with more pertinent, life-threatening issues. I didn’t know what was ahead of me that day I once again drove down to Columbus, but I knew that I was coming home with answers; after weeks and weeks of waiting, that was enough for me. 

Going into another day of testing that Monday, I did thankfully already have one good piece of news. I would not need the dreaded Nissen surgery! Praise God! Neither my doctor nor the GI doctor were convinced that the decline in pulmonary function was being caused by any acid issues. All of my 51 “episodes” of “silent” reflux had occurred very low in my esophagus, which meant that it wasn’t a danger to my lungs. As excited as I was about keeping my ability to throw up (you would be, too!), I also knew that meant there had to be another reason why my lung function had decreased; namely, most likely that was because of the antibodies. We had waited several weeks to re-test them to give them time to either stabilize out or show that they were going to continue to rise. If they continued to rise, and my lung function continued to go down, I knew treatment was inevitable. 

I also had another problem and another secret. I was afraid there was a chance I was pregnant – again.

I hadn’t missed my period (yet), but my body certainly wasn’t acting “normal.” I was having a few of the same pregnancy-like symptoms I had before the miscarriage. I wasn’t having nearly as many as when I actually was pregnant, but I wasn’t far enough along in my cycle at that point for the majority of them to start making their appearance. I had purchased a few pregnancy tests that weekend, took them a few mornings, and thankfully found them all to be “negative.” I just didn’t feel right, though. I knew the chances of having a false negative before your missed period were extremely high, though, so I didn’t have much confidence in my $3 pee sticks. I also knew that your hormones can cause bodily changes after miscarriage, so I took that possibility into account, too. I didn’t understand why those wouldn’t have occurred right away, but “blaming” my new-found weird cycle on hormones made me feel better. In all my life, though, I had never had such strange things occurring other than the time I was pregnant, and it was only after the fact last time that I put two-and-two together. Last time, I hadn’t even began to think I was pregnant at that point, so trying to decipher if I was again or just being paranoid was difficult at best. What was occurring wasn’t the exact same as just 3 months prior, but it certainly wasn’t my “normal,” either. I was also very aware of my hyper-sensitivity to things of this nature after the miscarriage. I knew my mind could actually be playing tricks on me this time, instead of warning me like last time. After all, like I said, I wasn’t exhibiting nearly all the symptoms I had before, but then again, I hadn’t given myself the time to be showing them, either.

I wasn’t feeling like the Lord was telling me I was pregnant like last time, but I wasn’t feeling like He was telling me I wasn’t, either. I felt He was silent on the issue, which didn’t help me feel any better. John was skeptical. One minute he didn’t believe I could possibly once again be with child, and the next he was wondering if lightening had indeed struck us twice. I felt conflicted, too.  One minute I felt calm about things, and the next I felt overwhelmed and scared. That morning, though, I was completely at peace, which even shocked me. The Lord must have known my emotional limits. I couldn’t sit around like last time and wait to find out what was going to happen, though. I had to know, and I had to know now. Waiting wasn’t an option.

Just like last time, during my commute down, I picked up the phone and let my transplant team know that morning I would need yet another blood draw for a HCG level. I’d know soon if my antibodies and lung function were still out of control. I would also know if I was most likely soon going to be experiencing déjà vu and consequently making my health situation even more complicated. I just wasn’t sure if I was ready to hear all of those answers.

Part 20 to come!

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Filed under Adoption, cystic fibrosis, Health, Life, Miscarriage, Transplant

Why We Halted Our Adoption: The Uncertainty – Part 18

Let’s just dig right in, shall we? 🙂

Let us review: Why did we halt our adoption?

The simplest answer is because we cannot afford to pursue adoption and surrogacy at once.
*For more on why we before 3 weeks ago we never dreamed surrogacy would be an option,  and how we were both finally at peace with moving forward with our adoption plans, please see Part 1.
*For more on the Facebook message I received 3 weeks ago from practically a perfect stranger that would rock anyone’s world, please see Part 2.
*For more on our surprisingly spirited 1st reaction to that message, please see Part 3.
*For more on the questions we both had, and the emotional struggle I went through, once the surrogacy option was presented to us, please see Part 4.
*For more on the initial, God-filled meeting I had with the woman who strongly felt God may very well be calling her to be our surrogate, please see Part 5.
*For more on the extremely disheartening news we received the day after I met with the woman who appeared to be an angel sent by God to carry our biological child, please see Part 6.
*For more on the strange, but strong, intuition I was feeling just a little over a week after our dream of surrogacy seemed to be slipping from our hands, please see Part 7.
*For more on all the signs that just weren’t going away and ultimately pointing to my intuition being most likely true, please see Part 8.
*For more on the dramatic turn of events that took place one early morning, please see Part 9.
*For more on the painful drive, and then wait at the hospital, I endured while waiting to hear if my intuition was true, please see Part 10.
*For more on the internal conflict I felt when I found out my intuition was wrong, please see Part 11.
*For more on the decision I made to go seek a second doctor’s opinion on what had (or hadn’t) happened, please see Part 12.
*For more on how we found out we had actually miscarried our baby, please see Part 13.
*For more of how the miscarriage affected me emotionally,  and why I chose to share my grief, please see Part 1, Part 2 and Part 3 of my “Redeeming Miscarriage” series.

*For more on the messiness of life, in particular my life, please see Part 14.
*For more on what I never told you had happened after the miscarriage, please see Part 15.
*For more on the possible reasons why I was suddenly not in the best of health, please see Part 16.
*For more on my two days of testing to try to figure out the problem, please see Part 17.
__________

After my bronchoscopy, the testing was finally over.
All we could at that point was wait for all the results from the past 2 days.

We returned home, went back to work, and prayed for the best outcome.

If you’ve ever had a battery of tests done within a few days, you know that the results all don’t come back at once. That would make life too easy, wouldn’t it? 😉  No, after even a few weeks, we still weren’t exactly sure what was going on.

I say “exactly,” because we did have some news at that point.
“What,” you ask?

Well…

The Good News:
There was NO sign of acute rejection, infection, or antibody activity in my lungs!

The Bad News:
There was NO sign of acute rejection, infection or antibody activity in my lungs!

We were expecting my lungs to “talk” to us, remember? Instead, they just remained inconveniently silent.
Thanks for the help – NOT!

Allow me to explain. 

Since there were no antibodies in my lungs, as great as that was, it also made things extremely complicated.  It made things so complicated that my doctor and I spent 45 minutes on the phone one day after work discussing the complexities of it all. If you know anything about the medical community, that’s not normal. In fact, it’s sadly extremely rare. The fact that he was willing go out of his way for me, though, is just a tangible example of why I love having him in charge of my care! 🙂

During that honest conversation with my physician, I learned that answers weren’t going to come as easily as we thought.

Since I didn’t have any antibodies in my lungs, yet my numbers were rising and my pulmonary function was decreasing, I met only 1 of the 2 required criteria for one to be treated for rejection.When you don’t meet both, then whether or not you treat is a choice. Some treat, some don’t. You could talk to two different transplant recipients about the exact same case and get two entirely different proposed solutions. Helpful, huh?

At that point, my doctor also still hadn’t been given all the results from the acid reflux study. Preliminary results showed I didn’t have GERD (common acid reflux), but I did have 51 episodes of what they call “non-acid reflux,” i.e. silent reflux. Before we did anything rash, my doctor wanted to consult with the GI doctor (who was conveniently out-of-town) about those 51 episodes. How high did the reflux go? How long did the episodes last? Is it “bad” to have 51 episodes? Would she recommend surgery? All I knew is that I wasn’t recommending surgery when, at least so far, I was just told there was a “possibility” that this issue was affecting my lung function. Any “silent” acid reflux issues I was having certainly wasn’t my focus. My laser-light focus was on the antibodies.

Thankfully, much of the conversation with my doctor was about just that – the antibodies.

That part of the conversation wasn’t what you’d expect between a physician and his patient. Why? Because my doctor said “I don’t know,” and he said it a lot. You know how I responded?

As one who values honesty, I can’t explain to you how much I appreciated the honesty and humility my doctor displayed that day. No, I didn’t like that the information he was giving me was confusing and full of uncertainty, but then again, neither did he. I could tell it was difficult for him to not have the answers. As a physician, he is trained to pint-point problems and treat them effectively, no matter how hard the diagnosis. Let’s be honest. We pay doctors to give us answers and expect nothing less. On that day, though, my doctor couldn’t give me answers. He gave me, though, what he could – his sincere commitment to figure it out. Moreover, he gave me what many physicians will never give their patients – their heart. I knew that day that the man on the other line wasn’t just my doctor; he was my friend. I knew Dr. Kirkby cared deeply for me, for John, for our future as parents, and desperately wanted to see me well again for my sake, not for his. Most of all, I knew there was no other man I’d ever want in charge of my care.

Since the medical community was divided on what to do with the data we had, I certainly wasn’t going to make the road ahead easy for him. With me feeling good, having less of a % of antibodies (though they seemed to be ticking upward fast) than you usually treat (even if they aren’t present in the lungs), and having “incredibly higher” lung function than any of the 4 other patients to whom they’ve given the treatment, but also have decreased lung function for me, I was an anomaly.

If we went forward and decided to treat, over the course of a month, I’d be enduring four, day-long IV sessions of a drug much like chemotherapy. Thankfully, I’d get to keep my hair. I would, however, be tired and have an even more weakened immune system than normal. I could work if I felt up to it (except on the days I got the IV), but we wouldn’t know how I’d do until we started the drug. If that wasn’t bad enough, our close friends are getting married in just a few months. I wasn’t just going to be attending the wedding in August. I was going to be a bridesmaid. We also wanted to move forward with our adoption soon.

It would be an understatement to say that now was definitely not a good time to need chemo-like drugs, not that any time ever is! 

As I said, we knew once Dr. Kirkby knew all the info from the probe study for the acid reflux, it would help us all feel better about that not being an issue, or at least not one we would have to tackle in the immediate future. There were no signs of aspiration of acid in the lungs at that point, which was definitely a good sign. Once we had the GI doctor’s full report, hopefully I wouldn’t have to hear the word “Nissen” again for a very, very long time.

If I wasn’t already happy enough with my doctor, he agreed to contact my former physician, Dr. Astor, who is now the head of UMass’ transplant program and the one under whom Dr. Kirkby studied, to get a second opinion. Over the course of his long, prestigious career, Dr. Astor has literally dealt with hundreds of lung transplant patients, many more than Dr. Kirkby has been afforded the opportunity to see. As common sense would tell you, more patients automatically means more knowledge. Even if Dr. Astor hadn’t seen a patient in exactly the same circumstances as mine, we were sure he could provide us valuable insight.

Did I mention how much I appreciate my doctor? 😀

All we could do in the time being, like we had done for so many weeks already, was wait and see.

Part 19 to come!

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Filed under Adoption, Baby, cystic fibrosis, Health, Life, Marriage, Miscarriage, Transplant

Why We Halted Our Adoption: The Word – Part 15

I have a confession. I have been keeping a secret.
A pretty big secret, in fact.
I’m done keeping it to myself, though. 🙂

Before I reveal the rest of what has been going on the past few months, for those of you who may be new, or didn’t catch it all in “real” time….

Let us review: Why did we halt our adoption?

The simplest answer is because we cannot afford to pursue adoption and surrogacy at once.
*For more on why we before 3 weeks ago we never dreamed surrogacy would be an option,  and how we were both finally at peace with moving forward with our adoption plans, please see Part 1.
*For more on the Facebook message I received 3 weeks ago from practically a perfect stranger that would rock anyone’s world, please see Part 2.
*For more on our surprisingly spirited 1st reaction to that message, please see Part 3.
*For more on the questions we both had, and the emotional struggle I went through, once the surrogacy option was presented to us, please see Part 4.
*For more on the initial, God-filled meeting I had with the woman who strongly felt God may very well be calling her to be our surrogate, please see Part 5.
*For more on the extremely disheartening news we received the day after I met with the woman who appeared to be an angel sent by God to carry our biological child, please see Part 6.
*For more on the strange, but strong, intuition I was feeling just a little over a week after our dream of surrogacy seemed to be slipping from our hands, please see Part 7.
*For more on all the signs that just weren’t going away and ultimately pointing to my intuition being most likely true, please see Part 8.
*For more on the dramatic turn of events that took place one early morning, please see Part 9.
*For more on the painful drive, and then wait at the hospital, I endured while waiting to hear if my intuition was true, please see Part 10.
*For more on the internal conflict I felt when I found out my intuition was wrong, please see Part 11.
*For more on the decision I made to go seek a second doctor’s opinion on what had (or hadn’t) happened, please see Part 12.
*For more on how we found out we had actually miscarried our baby, please see Part 13.
*For more of how the miscarriage affected me emotionally,  and why I chose to share my grief, please see Part 1, Part 2 and Part 3 of my “Redeeming Miscarriage” series.

*For more on the messiness of life, in particular my life, please see Part 14.
___________________________________________________

Whew. If you’ve read all of that, major props to you!
Now, imagine living it. 😉

And there’s more…lots more.

It was the Friday after the miscarriage when I learned a new word.

Like usual for a Friday, I was standing in Meijer. We Paynes are rather predictable, what can I say. Unlike most Fridays, however, I wasn’t with John because it was during the afternoon. I was still off work recovering from the miscarriage from which I was physically almost done going through but emotionally just beginning to be affected. That day I was right in the middle of the worst exhaustion I had ever felt and doing my best to just get in the store and get out. I wasn’t in the mood to chat with anyone, but I was on the phone with my transplant team updating them with how I was doing. We were all still in quite a bit of shock about the confirmed miscarriage, them included. After all, they had first told me they were extremely confident I hadn’t ever been pregnant in the first place.

“Your antibody count was up to 17% on Monday.” 
“My what?”

My transplant nurse and friend, Ashley, began to explain to me the ends-and-outs of the transplant science surrounding antibodies, a science which is not clearly understood and fairly new. I wish there was an easy way for me to explain it all to you, but just remember that antibodies aren’t something you want, and they can lead to antibody-mediated rejection. If you want, you can read this article about different types of rejection, which talks a bit about this type of rejection. Be forewarned, it’s heady! I’ll abbreviate it for you by saying this: In transplant-speak, “antibody-mediated rejection” is a fancy name for “bad news.”

So, I had antibodies. How did I get them, though?

For 6 years, I didn’t have any (0%). What suddenly changed? Well, if you recall, last Summer I had that crazy virus which left much slower than it came. After laying on the couch for 5 weeks, and then needing a few more weeks to gain my strength back, life returned to normal. My lung function (the #1 thing we watch) was never affected by the mysterious sickness, and though it was extremely inconvenient, it could have been a lot worse. I didn’t even know that a probable bi-product of “it” (whatever “it” was) was “10% antibodies.” So, if I wasn’t affected the last 7 months or so by my elevated antibody count, why did I care now that it was at 17%?

Because of this:

So far the only research-proven ways one can definitely contract antibodies after transplant (i.e. not from your donor) are through blood transfusions and pregnancy.They may not be the only ways (like my virus, which is the only thing that makes sense at that time), but they are certainly the reasons supported by the most evidence.  

I hadn’t had any blood transfusions. I had, though, been pregnant and was now losing our baby. While standing there learning about yet another life complication, I was exhausted, a bit short of breath and definitely not feeling myself – not good.

I was told we’d watch the antibodies, but since my lung function had been down a bit that past Monday, too, there was some noted concern. The number certainly wasn’t high, but any rise in antibody levels, and subsequent decrease in pulmonary function, isn’t something to ignore.

I was advised I would have my numbers (antibody and lung function) checked once more in 6 weeks, once my body had a chance to fully recover from the miscarriage. “Hopefully by then,” I was told, “all my numbers would return to normal.”

But would they?
I had already lost our baby. Was I going to lose my health, too?

Part 16 to come!

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Filed under cystic fibrosis, Health, Marriage, Transplant