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 never, ever 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!

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!

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!

Why We Halted Our Adoption: The Tests – Part 17

As one who thrives off spontaneity, I don’t mind bumps, or even the occasional pothole, in the road called life. Note – I said occasional pothole, not the never-ending, sanctifying “pothole” that has been 2013. 

Over the past few months, though, I’ve learned to embrace the craziness that is my life and have an attitude of thankfulness for being afforded the opportunity to see His hand in so many different, difficult circumstances. After all, how many other people can say they have experienced the highs and lows of adoption, surrogacy, miscarriage, and transplant all within a few months? 😉

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.
________________________________________________

I like little get-a-ways with my husband.
I don’t, however, like them being booked for medical reasons instead of pure pleasure.
I guess you take what you can get.

We headed off to Columbus with our deeply discounted hotel reservation in hand, not sure what the next two days held.

We pulled into the familiar Outpatient Parking Lot for Nationwide Children’s Hospital and walked hand-in-hand to the new GI center for my first procedure, placement of the 24 hour pH probe.

If you recall from Part 16, I wasn’t just going through the normal, hard recovery from miscarriage. I was also having a decrease in lung function, and possibly a rise in antibodies; neither were good. If that wasn’t enough (it felt like more than enough, let me tell you), there was also another possible explanation for my decreased lung function.  Once again, the dreaded words “Laryngopharyngeal Reflux,” i.e. “silent” reflux, and “Nissen Fundoplication” were said.

Nothing sparks uneasiness into the heart of a transplant patient’s heart (at least this one’s) like those four strange words. It is an understatement to say they were the last words I ever wanted to hear at that point.

I think upon hearing them, I even said out loud “Shoot me now.”
I just couldn’t help myself.

I didn’t want to be a part of the majority of transplant patients who had been diagnosed with “silent” reflux post-transplant and had to go on to have the horrible (in my mind) Nissen procedure. I didn’t care if there was the possibility that I was unknowingly (hence “silent” reflux) aspirating stomach acid into my lungs, causing corrosion and consequently my lowered lung function. I had absolutely no desire to deal with the effects of the surgery, in particular the fact that if I endured the procedure, I’d never, ever be able to throw up again! 😦

After not too long, my name was called and we headed back.  We went through the usual taking of the vitals, an explanation of how the probe would work, what I could and couldn’t eat while it was inserted, what to do with the buttons on the holster, etc.

Before I knew it, it was time to have the probe placed. From what I had heard countless times from others on a Facebook transplant group, the actual placement would be “horrible,” not to mention the next day of my life. According to some, the next twenty-four hours would be known as the “longest day of my life,” and I would be “in tears” by the time I got the probe out. Furthermore, if the results came back poorly, and I had to have the Nissen surgery, I could pretty much kiss life as I knew it goodbye. Let me tell you, nothing psyches you up to get something done to yourself like reading through dozens of depressing posts from others about their experiences! 😉 Needless to say, after hearing numerous depressing accounts from so many others, I came into things with a lot of trepidation and preconceived, ill notions.

I can’t speak for the others, but I’m happy to report my experience with the tube insertion was far from traumatic. In fact, I was labeled the “best adult patient they’d have seen,” since I didn’t make a peep during the minute or so the few feet (literally) of very, pliable thin tube were placed down my nose. Was it the most comfortable feeling? Of course not! Did it make me feel like I was going to gag? Sure! As I’ve always said, though, what doesn’t kill you only makes you stronger! I’m never been one to whine or freak-out about medical procedures, so I should have known from the start that I’d be OK.

I was whisked off to get an x-ray to make sure the tube was in its proper spot. Once that came back fine, the part of the tube that was sticking out of my nose was taped to my cheek, and I was free to go. For the next 24 hours, I was going to be a prisoner to the tube and the holster on my jeans. Before we left, we chatted with the nurses, who were extremely friendly and helpful, and headed back to the parking lot. The entire thing only took about an hour, which left us the vast majority of our day.

You’re probably asking, “What exactly does one do with a tube in their nose for 24 hours?!”
Well, if you’re me and have no shame, lots of things!

I certainly wasn’t going to waste a day in Columbus sitting in a hotel room, just because I happen to look like a freak and every time I took a step, felt the tube making its presence in the back of my throat (weird feeling, let me tell you). We went and made the most of our day. We walked around Easton (an outdoor shopping center), went to Polaris (an indoor mall), and went to Cheesecake Factory (my favorite) for dinner. Trying on clothes wasn’t the easiest, or fastest, thing to do with a tube in your nose and a holster attached to it, but it certainly made for a fun time! 🙂 As you probably suspected, I got stared at dozens of times during our adventures. If you know me, though, I’ve never been one to care about what complete strangers think of me, so I didn’t mind being the subject of whispered comments (like I couldn’t tell they were talking about me – silly people) said by those with whom I came in contact.

During the course of that day, you name it, we did it. I wouldn’t have had it any other way. You only live once, right? 😉

I can’t say I slept like a rock with the probe – hardly so. Though it disturbed my sleep, it was tolerable. I managed to get a few hours of shut-eye before it was time for testing day #2. I will admit by that morning, I was ready for the tube to come out but far from being “in tears.” I probably shouldn’t have, but now that I had experienced the “horrible probe” for myself, while we drove to the hospital that morning, I couldn’t help but laugh at some of the comments I had seen prior to having the test done. In all honesty, I was baffled by how different my last 24 hours were compared to what had been described time and time again. After living with it myself, I just didn’t understand people’s extreme hatred for such a small piece of tube. I couldn’t speak for them and their experiences. Maybe 99% of people really do have a much worse time with it than I did. Once thing is for certain, though: their comments had me all upset and worried about having the pH probe for nothing! Honestly, I thought the whole thing was a complete breeze. No, I wouldn’t voluntarily sign-up to have it again, but on the same transplant board on which I had read so many “horrifying” tales of individuals’ 24 hour experiences, I was going to be sure to write a very positive review of mine. Others deserved to know the pH probe test can actually be a fun experience, if you don’t take it too seriously.

Don’t get me wrong. At that point, I was still adamantly opposed to having the dreaded Nissen surgery and fervently praying I didn’t need it. Like I said, I hadn’t minded the test to determine if I had a problem, but the thought of having to actually go through with the surgery itself still wasn’t appealing to me – at all.

Once we got back to the hospital, it was only a matter of 20 minutes or so before I was freed and could breathe out of my nose once again. The nurses laughed profusely hearing about all the things I did during my time as the tube’s prisoner. I was happy to bring them some joy, as I’m sure that most people they see (at least from what they told me) are grumpy and far from congenial.

We said our goodbyes, went and got my port accessed, and headed off to our next stop – the bronchoscopy suite.

Now when you think of the word “suite,” what comes to mind? If you’re like me, I picture a very large room (with a view) with a king-sized bed that has a pillow-top mattress and sheets made out of the finest silk. I envision a white, terry cloth robe wrapped around my skin, as I light candles around the perimeter of the already-filled jacuzzi. Oh, yes. Can you picture the tranquility with me?

Sadly, this wasn’t the type of “suite” that awaited me in a different part of the hospital. Instead, I was given a windowless box for a room, a far-from comfortable hospital bed with stiff, old sheets. I was, however, thankfully spared from the paper-thin gown, though sadly no soft robe awaited me. John was given a chair in the corner. Do you know the saddest fact of all, though? I know for the aforementioned items our insurance company paid far more than we would have for the grandeur previously described. Oh, the joys of hospital life! J

We made ourselves “comfortable” and settled in. It wasn’t long before my doctor and nurse were in and the pre-op conversations began. We quickly went over how I’d been feeling (great) and how I tolerated the tube (perfectly).

All was well – that is, until we went over my blood work taken earlier in the week which was finally back from processing. We learned that in a matter of 6 weeks, my antibody count had risen from 17% to 35%. It hadn’t only increased again since the miscarriage, it had doubled. That fact wasn’t good news. No, that was not good news at all.

After such an easy and enjoyable day the day before, talk about taking the wind out of someone’s sails. It became quickly apparent that it was a very good and necessary thing we were taking biopsies of my lungs that day. Maybe the issue really was sudden “silent reflux” (which at that point didn’t sound so bad, after all), but I was skeptical at best (even before hearing the latest antibody numbers) of that being the culprit of my downturn in health. At least in my mind, with my antibodies seemingly out of control, it did not seem plausible that they weren’t contributing at all to my decreased lung function.

After we finished chatting and I signed what I liked to call the “you-could-be-harmed-or-even-die-during-this-procedure-but-now-you-know-and-are-still-giving-me-legal-consent-to-do-it” form, it was time to kiss John goodbye and go off to la-la land for a while.

As I awaited the anesthesia to kick in (I don’t go down easily – shocking, I know) and the bronchoscopy to begin, my mind was plagued with the questions that had been haunting me since I was first told about the mysterious antibodies less than a week after we lost our child.

“What is happening to me, Lord?” “Are we ever going to be able to have a family?” “When is enough, enough?” “Am I going to die because of this?”

If antibody-mediated rejection was indeed setting in, time was of the essence. No second could be wasted. It didn’t matter how I felt. Something was up. The elevated antibodies and simultaneous decreased lung function were players in a developing story; that story was just a subplot in the larger tale called “my life.” At that point, I was just praying the sudden subplot didn’t develop into the main plot, that the whole tale wouldn’t be labeled a “tragedy,” where the protagonist (i.e. me) meets their demise in the end.

Part 18 to come!

 

Why We Halted Our Adoption: The Possibilities – Part 16

So in Part 15, life just got more complicated.
I won’t lie. In the midst of it, I found myself many, many times mumbling, “Is it over yet?”

You ready for more?

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.
___________________________________________________

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

If you’ll recall from Part 15, my transplant nurse and friend, Ashley, explained 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 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. We had to wait 6 weeks or so, though, to re-test, due to my body needing to regain some stability after my unexpected miscarriage. 

So, that was that. The waiting game was about to begin, a waiting game that would last much longer than expected.

I hung up the phone and aimlessly roamed the aisles in Meijer.
I was overcome with confusion and not in the mood to drive.
I physically trembled as I tried to take it all in.
Now what? What is happening to me, to my life? Seriously, Lord? 

I prayed (OK, begged) God for protection and peace, mustered up enough energy to drive myself home. Once again, I picked up my phone. This time I called my husband, John. I did my best in my diatribe to him to play it off like nothing was wrong and I wasn’t worried, so he shouldn’t worry, either. Only a small part of me believed the positivity coming out of my mouth. I wasn’t my usual “glass half full” kind of self at that point. The extreme hormonal shift occurring inside of me because of the miscarriage, as well as the grief that came with our loss, had me feeling extremely emotionally unstable and prone to crying. I didn’t want to cry about this to John, though. I had already been uncharacteristically inconsolable several times the previous few days; he’d been through enough of my emotional instability.

There was nothing we could do at that point but pray and wait.
For 6 weeks.

During that time, I thankfully began feeling much more like myself, emotionally and physically speaking. It didn’t happen overnight, but the symptoms I had been physically feeling (including the shortness of breath, which was the most concerning) the day I first learned the word “antibody,” all subsided and were a somewhat distant memory.

Our baby was far from a distant memory, but the horrible physical aftermath from the miscarriage was thankfully over….oh, wait. I forgot. It wasn’t, far from it.

After weeks of waiting, the day (a Monday) finally came that I could go get my “all clear” from the transplant team. It was my hope that in a matter of just a few hours, I would no longer  have to worry about there being any medical reason why we couldn’t proceed with starting our family in a way that didn’t involve me attempting to conceive (not that we were “trying” before) any more children; doing so would only put my health, and the baby, in jeopardy. I certainly wasn’t emotionally ready at that point to go back to thinking about welcoming another child into our home. I wanted the delay in moving forward with our plans, though, to be our decision, not that of my medical team. I wanted to be able to re-start the adoption process, or go back to surrogacy if that was the way we felt led, at any point. I didn’t want someone else giving me a timeline of when I could, or couldn’t, pursue a family – the family I so desperately wanted.

The truth is, after feeling the deepest emotional pain I had ever had in my entire life (including the time I almost died), I honestly just wanted to feel in control of my seemingly ever-changing, never-predictable, always-hard life.When my pulmonary function test came back that day even lower than the time before, though, God reminded me that He was still in charge – not me.

92%?! That just couldn’t be…but it was.
A perfectionist and self-competitor when it comes to these things, I literally took the test 15 times – on two different machines. Though I gave it a valiant effort, try as I might, I simply couldn’t get the # to rise.

Though that number is considered extremely high for post-double lung transplant recipients, it was very, very low for me. After looking at a graph of all my pulmonary function tests since my transplant in September 2005, my worst fear was realized:

My lung function (FEV1 — max. amount of air blown out in 1 second) hadn’t been that low in over 6 years. In fact, it had only been that low 2 times since the day 7 1/2 years ago I traded in my 14% lung capacity lungs for some “new” ones.

Besides my test 29 days post-transplant (88%), that low of number had only happened once since late 2005 and not after a test which already showed declining lung function (like my last one). I couldn’t even recall what was going on during that time when I saw the date on the screen. Who knows. It could have even been a fluke. It didn’t matter, though. The numbers had gone all the way back up the next time and the dozens of times since then; many times I had even been over 100%.  Now, though, it was down and in a considerable fashion. I though the 95% I blew out 6 weeks prior was bad. I wasn’t prepared for my “new” number. I didn’t care if it was better than most lung transplant recipients best results. I wanted my numbers, the ones to which I was accustomed. My team wanted them, too.

Something was definitely up, and it wasn’t looking good.

My doctor (love him) and I sat there and had a long chat. Any change in lung function (especially two tests in-a-row with decreases) is always a point of concern. Coming off a miscarriage, I was a very special case. I was the first post-lung transplant patient who had become pregnant with whom my small center had dealt. Their lack of experience with those of my kind wasn’t uncommon. Even the biggest, most notorious centers don’t see hardly any people in my situation; pregnancy after transplant isn’t really recommended, after all.

I wasn’t just going through the normal, hard recovery from miscarriage. I was also having a decrease in lung function, and possibly a rise in antibodies; neither were good. If that wasn’t enough (it felt like more than enough, let me tell you), there was also another possible explanation for my decreased lung function.  Once again, the dreaded words “Laryngopharyngeal Reflux,” i.e. “silent” reflux, and “Nissen Fundoplication” were said.

Nothing sparks uneasiness into the heart of a transplant patient’s heart (at least this one’s) like those four strange words. It is an understatement to say they were the last words I ever wanted to hear at that point.

I think upon hearing them, I even said out loud “Shoot me now.”
I just couldn’t help myself.

I didn’t want to be a part of the majority of transplant patients who had been diagnosed with “silent” reflux post-transplant and had to go on to have the horrible (in my mind) Nissen procedure. I didn’t care if there was the possibility that I was unknowingly (hence “silent” reflux) aspirating stomach acid into my lungs, causing corrosion and consequently my lowered lung function. I had absolutely no desire to deal with the effects of the surgery, in particular the fact that if I endured the procedure, I’d never, ever be able to throw up again! 😦

After some discussion, my doctor and I came to a consensus – we had to do something and had to do it now. We didn’t even have my antibody count back yet, since my blood had to be shipped to OSU for them to process the complicated test, but that didn’t matter. Before things went more South, something had to be done. We couldn’t sit back and just watch everything play out. My health could be in serious jeopardy if we did.

A bronchoscopy to get biopsies of my lungs was ordered for later that week, as well as a 24 hour impedance study (think tube in your nose and holster on your side for 24 hrs.) to check for the “silent” reflux issue.  John and I both were to suddenly take off work to go down for 2 days of testing. Things were getting serious – and fast.

The possibilities of what was wrong were before us, but were the answers close behind?

Part 17 to come!

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!

Why We Halted Our Adoption: Life Is Messy – Part 14

I have a confession. I have been keeping a secret.
A pretty big secret, in fact.
I know. I know. I’m no fun.

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,  please see Part 1, Part 2 and Part 3 of my “Redeeming Miscarriage” series.
_________________________________________________________________________________________

All caught up now? 🙂 OK, good.
Now we can move on.
So, again, I’ve been keeping a secret for quite a while.

Before I can divulge all of those details, though, it’s important I share with you something else.

I’ve learned a lot during the past 3 months about the unpredictability of life — more specifically, my life. If you’ve been following along with my previous posts, you have, too. When I think back through everything John and I went through in a very short amount of time, I am sometimes shocked that neither one of us was medicated for clinical depression or gained 50 lbs. from emotional eating, though I gained (and am still in the process of losing) about 8lb. from too many nights with my face in an ice cream or chip container – haha.

No, it is only by God’s grace that our individual relationships with the Lord, as well as our marriage, our stronger than ever. By looking at it through human eyes, our circumstances certainly wouldn’t seem like the kind that would draw one closer to a God that, for reasons outside of your control, allowed your child to pass away.

Thankfully, though, we understand the concepts of God’s sovereignty and goodness, even amidst human suffering. That understanding is the only thing that pulled me off the nursery floor during the days right after the miscarriage when I was too weak physically and emotionally to work, sometimes to even move.  That understanding is the only thing that got me through during the days following that I didn’t want to go to work but instead wanted to once again sit in the empty nursery with junk food and just cry. That understanding is the only thing that allowed us to once again feel comfortable putting ourselves back into a position where there is always a chance – no matter how much protection we use – that we could wind back up in the same position as before. That understanding, coupled with our firm belief in the sanctity of life, is the crux behind why we call who was lost a baby and not just a clump of cells and why we believe we will see that child again.

Notice I said “we” believe all of those things. It can’t be said enough how I can’t imagine going through the past 3 months without my husband, whom I love more now than I ever knew was possible 3 1/2 years ago when we pledged our vows to each other in front of 300 people. Jesus is my everything, but John is my earthly rock. I honestly adore that man, no matter how many times he drives me nuts, no matter how many times we don’t see eye-to-eye, no matter how many times he steals the last bite of ice cream. The proof is in the pudding. Time and time again, no matter how many times life beats us down, we always get back up, and we always do it together, stronger and closer than ever. Interestingly, not only have I become closer to my husband during this time but also to the Lord, the Redeemer of all things, as well.

In my “Redeeming Miscarriage” series, I walked you through some of the emotional toll of the miscarriage. Those posts, though, could never sum up every emotion I have felt since I became a mother to a child I will never see this side of Heaven. Though I am rather verbose by nature, I don’t think it’s even possible for me  (crazy, huh?) to articulate every feeling that has coursed through my body during the past few months.

Nevertheless, I certainly tried. Why did I? Because I wanted to give you, the reader, a rare glimpse into the heart of a grieving woman in her most vulnerable of states. In doing so, it was my hope that you wouldn’t feel sorry for me (though I’ve appreciated the concern and care) but instead that you would see the incredible beauty that comes from allowing oneself to be completely transparent, that comes from taking off your mask and showing your bare skin marred with the messiness of life.

And boy was life messy during that time – much more than you even knew. That is, until now.

Part 15 to come!

Redeeming Miscarriage: Part 3 – Embracing Emotion

Redeeming Miscarriage: Part 1 – 53 days

Redeeming Miscarriage: Part 2 – The Calling
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It’s been a little over 2 months.
It’s been a little over 2 months since I became a mother to a child I’ll never mother here on Earth. It’s been a little over 2 months since part of my heart went to be with Jesus. Some days that 2 months feels like it’s been 2 years, other days like it’s been 2 minutes.

That being said, it would be an understatement to say the emotions surrounding the miscarriage are still raw. Honestly, I think they always will be, at least in a way. No, I don’t cry every day anymore, but that doesn’t mean all is forgotten. Call me crazy (I’m used to it), but I am so very thankful for that fact. I am so very thankful the Lord hasn’t forgotten about our child and I don’t have to, either.

Though I try not to dwell, I still find myself thinking about our baby quite frequently throughout my day. Some days I think about how I would have already been in my second trimester.  I wonder how much weight I would have gained at this point, if I would have been carrying high or low, and if I would have actually looked pregnant at this point or instead been in that awkward-in-between stage when people are hesitant to ask if you are with child. I think about how beautiful John would have found me pregnant and the special time we would have had together waiting for, and experiencing firsthand, our child’s birth. I daydream about the time we would have spent corporately feeling the baby kick, going hand-in-hand to ultrasound appointments, and making memories I will never get to experience. I wonder if the baby would have had to be taken early and/or if they would have had a rough start to life. I think about our first Christmas photo (with the baby only a few weeks old) and how proud I would have been to introduce our blessing to the world through a card similar to ones we’ve received from other friends and family who have had recent additions.

Other days I think about our child, whether they are a boy or a girl (we both think boy), what their personality would have been like (outgoing and visionary like me or reserved and task-oriented like John), who they would have looked like (our body types are polar opposites), what their calling in life would have been, etc. I think about all the precious little people already in our circle of friends, and how our child would have had such great playmates. I think about how awesome of a dad John would have been, and how much I long to see him in that privileged role.

Most importantly, I think about how much I long to mother my child and help them grow in all senses of the word. I think about rocking them to sleep in their room in the middle of the night, praying over them and dedicating them to the Lord in front of hundreds of witnesses. I think about the love I feel for my child already and how consuming it would have been had I ever gotten the chance to meet them. I contemplate the awesome privilege and responsibility of motherhood, the lessons I would have learned from parenting my son or daughter and how the Lord would have used them in my life to make me more like Him.

Each time I let my mind wander, I am quickly brought back to my current reality:

Having our child here with us on Earth just wasn’t meant to be. God in His sovereignty and goodness allowed it, and I am called to accept it. No matter how much I wish they could, they aren’t coming back.
Life has moved on and so must I.

I don’t have to forget, but I do have to live in the present and not the past. I do a better job of embracing my circumstances some times more so than others. Thankfully, as time passes, most of the time it is getting easier to accept what has happened.

Some days, though, the emotions I have felt since the miscarriage still overwhelm me. There are still occasional times I will sit in our empty nursery and cry. There are still times I struggle with seeing on Facebook another pregnancy announcement via ultrasound picture with the child’s due date right around – or even on – my estimated one. There are times I struggle with not being jealous as I see our friends’ families expanding and have no idea when, or how, our time as parents will even begin. There are times, like earlier this week after being at a cook-out with several incredible women who are either already mothers, pregnant or hoping to be pregnant soon, I still snuggle up next to my husband and cry silent tears as I pray myself to sleep. There are still times I repeatedly ask the Lord, “Why?” and swear I cannot bear more heartache in this life.

In those moments of weakness, though, when I struggle with my humanity and long to remain stoic and unaffected by my loss, it is then I remember something – His power is perfected in my weakness (2 Cor 12:9-10). In this time that I feel the most weak, He is doing a great work in – and through – me for His glory. I can forsake that calling, or I can embrace it and all the emotions that come with it.  For me, there is no other choice but to embrace my humanity; after all, in doing so, I am reminded of just how desperately I need Him.

I am so thankful I don’t have to be ashamed of the sadness I still sometimes feel. I don’t have to hide behind a facade that says my miscarriage didn’t deeply impact me and didn’t leave a lasting impact on the very core of my soul. I don’t have to have man’s understanding when it comes to how I view myself as a mother, because the way I feel isn’t going to change with or without it. I don’t have to act as if losing our baby wasn’t the hardest thing I have ever endured, just because some may find that statement melodramatic in light of everything else that has gone in my 27 years of life. I don’t have to downplay the grief I feel, just because I was only around 5 weeks pregnant when I lost our baby.

I don’t have to justify the intense loss I feel to anyone. Neither do you, if you are in my shoes. Never forget that.

As for me, as with every other life-altering event in my life, I just have to embrace the hurt, allow Him to heal it and use it, and allow Him to leave the scars as a constant reminder of His grace in my life.

Thank you, Lord, for the scars.

 

Redeeming Miscarriage: Part 1 – 53 Days

53 days ago, after much speculation, we found out we were pregnant. 53 days ago, we found out just that – we were pregnant – but sadly weren’t anymore. 53 days ago, we found out our baby was no longer with us but instead with the Father of Lights, the One who knew their days before the beginning of time. 53 days ago, our lives drastically changed and have never been – and will never be – the same.

Why?

Because 53 days ago, I became a mother.

You may very well disagree with that statement. I know that for a fact, because a brave few, even one on Mother’s Day, have let me know that they don’t view me as a mother yet; they don’t think it’s healthy for me to, either. We’re all entitled to our opinions, I guess. Thankfully, we’re also allowed to vehemently disagree with each other sometimes and still be walking in holiness and love.

I’m glad, because despite what the enemy, and even well-intentioned humans, say, I am a mother.

As I said on my Facebook on Mother’s Day:
: Today I cry tears of sadness because of our child who is no longer with us. Today I cry tears of hope, because that child is safe with the Lord & we’ll see them again. Today I cry tears of grief because I long to have the opportunity to mother my children, all of them. Today I cry tears of joy when I think about all the ways in which God has already, and will continue to, use my precious kids. Today I cry tears of thankfulness, because, like Hannah, the Lord heard my cry & answered my prayer. As a result, no matter what others may think, this Mother’s Day I AM a mother & no one will ever take that away from me.

That post so succinctly sums up all the emotions I have had over the past 53 days.

Please understand, I haven’t been intentionally keeping those emotions from the public. I have sat down to blog probably a dozen of times. There were times the words just wouldn’t come; it’s hard, even for me, to always put into words the plethora of feelings I’ve experienced the past 7 weeks. Other times, the words were there, but the tears that accompanied them made it too hard to sit and write, to immerse myself in the sorrow and try to walk away unscathed and ready for a day’s work. 

That being said, it would be an understatement to say the emotions surrounding the miscarriage are still raw. Honestly, I think they always will be, at least in a way. No, I don’t cry every day anymore, but that doesn’t mean all is forgotten. Call me crazy (I’m used to it), but I am so very thankful for that fact. I am so very thankful the Lord hasn’t forgotten about our child and I don’t have to, either. Moreover, I am so very thankful that God never gives us more than we can handle and always blesses us in exceedingly abundant ways, if we only choose to look at our earthly life as a vessel for His glory, a vapor in time. Our child’s life inside the womb only lasted a few days, but the impact they have left on our hearts while we still walk this earth – and their time with us in Glory – will last forever.  While we are apart, I refuse to forsake my child and act as if they never existed, even if their conception was far from planned. Instead, I choose to allow Him to use their microscopic life for His glory and daily thank Him for answering my prayer.

How, you ask, did He answer my prayer?
My child, whom I will never meet here on Earth, is dead, after all.

The answer to that question wasn’t always so clear to me, either. About a week after the miscarriage, though, the Lord made the answer very clear while driving home from work one night.  I will never forget that night as long as I live. It was around dusk, and I was driving down a busy road that leads to the entrance to our subdivision, having a conversation out loud with the Lord, which is quite common for me. It was my first day back to work after the miscarriage, and had been an abnormally very long day due to a work-related function after office hours. I was exhausted – physically and emotionally –  and just wanted to go to bed.

While driving down the familiar road, I said very angrily to the Lord, “Why? Why did I have to get pregnant, just so You could take our baby? Couldn’t You just have let us adopt and left us alone? First we can’t afford surrogacy, and then our biological child dies?! Nothing good is coming out of any of this! Why aren’t you answering our prayers and giving us a family? Why are you torturing us instead? I  want our children to be used mightily by You, Lord. Haven’t I prayed that for years?! Please just let them be born, so they can be used by You.” As tears rolled down my cheeks, the Spirit of the Lord began to patiently and quietly speak to me, just as it had so many times before.
“I did answer your prayer, Amber. I am using your child mightily for my glory.”

His answers stopped me dead in my tracks, and I have never been the same since. There was no point in arguing, in saying, “but that’s not what I meant.” It was, after all, far from what I meant all those times the past several years I had petitioned the Lord to use my children. God in His sovereignty and goodness, though, still chose to answer my prayer (at least with this child), albeit in a different, harder-to-understand way. Though my flesh didn’t (and still doesn’t) want to, the only thing left to say in that surprisingly peaceful moment was ‘thank you.’ Thank you, thank you, thank you!

Several weeks after that encounter with the Lord, I am still saying ‘thank you.’

I don’t know how to explain it, but because of His grace, my womb may be empty, but my heart is full.

Though there is still sorrow that comes with their loss, I am still standing in awe of how the Lord is choosing to use our first child for His glory and our good. I am still saying thank ‘thank you’ for how the Lord is choosing to use this blog to reach thousands of people I don’t even know. I am daily blown away with how He’s encouraging so many through my willingness to be so open about our truly miraculous journey. As I’ve told you before, I couldn’t make the past 2 1/2 months of our lives up if I tried.

If you haven’t been following along, please go back and catch up, so your faith can be strengthened as ours has. God isn’t done with the story. I can assure you of that. As the days go on, more will be shared that has happened. Through sharing, we are simply trying to be His vessels, to point all the glory and honor back to Him. We didn’t ask for any of this, but I am certainly not going to waste it. To be able to praise Him through this storm, I have to allow the Lord to redeem it, to use it — for me, though John often wishes otherwise, that comes with bearing my soul to all of you. Thanks for listening, for the private messages and emails, the cards, and more importantly, the prayers. We are truly, truly blessed. 🙂

More to come!

What’s In A “Word?”

If you’ve read my blog for a year or more, you know each year I pick my “word.” If you recall, my “word” in 2012 was “freedom” and “fearless” in 2011.

Did I always walk in “freedom” in 2012 and feel “fearless” in 2011? Hardly.
Did I at times, though? Yes, very much so.

2 years ago, I wrote this:  A word’s power is only provoked by its author’s willingness to unleash and embrace it. For example, you can say your “word” is “contentment”. If you don’t choose to not only ask the Lord to discipline you to be content,  but also choose to participate in your sanctification, repent and change, your word (literally and figuratively speaking) is dead and useless.

Looking back, I realize that I didn’t always unleash and embrace my “word” like I had planned. I didn’t always choose to not only ask the Lord to discipline me to live out my “word” but also choose to participate in my sanctification, repent and change so that my word wasn’t dead and useless.

At times, especially in 2012, I did feel like my “word” was dead and useless, because I certainly wasn’t feeling freedom. I wasn’t feeling fearless, either. In fact, I completely forgot for a while I had even picked a word last year, let alone that I picked a word as powerful as “freedom.” I guess, at least in a way, I failed both years (esp. last year) to grasp the point of even choosing a word. Life happened – a lot of life. During the turmoil which was my 2012, my “word” and its meaning to me quickly faded out of my memory, as I dealt with wave after wave of grief, stress, sadness and every other intense emotion I felt most days of the year.

I lost perspective, and in the process, I lost my freedom.
I lost my “word.” I don’t want to lose perspective again, no matter what life brings us this year.

I haven’t chosen my “word” yet for 2013, but when I do, I plan on doing it with an intentionality with which I did not choose the two previous years’ words. I plan on fully unleashing and embracing it, so I can watch God use it for His glory and my good.