What I wish I would have known - Part 1

The struggle of infertility can be painful and sometimes very lonely, especially at the beginning. I look at where we are now, and even though our state seems worse off, I remember those early days when nobody knew, and we were heartbroken all alone.

It's so much easier for me to share now. Now, opening up my blog and writing is easy. Now, mentioning to a friend that we need prayer or support seems so natural. In a couple of weeks, we are having our entire church pray for us! But there was a day when I was terrified and humiliated to talk about our struggle to have children.

There were a number of reasons we didn't share our struggle. In the first place, we were barely recognizing it aloud ourselves. Both my husband and I has silent concerns long before we ever spoke them to each other. I didn't want to be an alarmist, and I felt too young to bring infertility up. We talk about it all of the time now, and so I forget that there was a point when we didn't.

On top of that, I was afraid at what people might say. Strange enough, my fear was not that they would have some horror story about a friend never getting pregnant, but that they would brush me off when I knew something was wrong. I didn't want to hear that I was young and had plenty of time. I didn't want to hear that Robby and I should be enjoying our early years alone together, not planning for a family yet.

Finally, I simply didn't know what to do. I didn't know who to talk to or what to say. I remember mentioning to my doctor that I had been off of birth control for a year with no baby, but I didn't press it further, and neither did she.

Even when I made my first appointment in Visalia, I nearly backed out of saying the real reason why I was there. I was led back to my room, and a nurse came in to get me ready for an annual exam. I almost kept silent, but finally I said, "I'm not here for that, actually." She seemed perplexed and double-checked the chart she was holding -- apparently the reason for my appointment had been written down incorrectly. I made myself be bold: "I can't get pregnant, and I'm wondering what to do." My OB was wonderful, of course, and sat down to have the first helpful conversation I had had at that point. I was amazed. So this was as simple as it could have been all along! She wasted no time starting me on a medication, and then soon referred me to a specialist.

There are many things I wish I would have known, such as the following:

• Infertility is a common struggle that affects many couples. Most statistics say one is six couples will have some form of infertility. That being said, if a couple has been trying for a year (some specialists even say six months now) and has been unable to conceive, it is perfectly right and acceptable (not overreactive or silly) to share their concern with their doctor.
• Infertility affects all ages. And actually, if you consider that women naturally become less fertile as they age, it seems all the more reason to see a doctor sooner than later if you are young and experiencing difficulty in conceiving. 
• You can make an appointment with your doctor simply to discuss your concerns. (I didn't know I could do this! I felt like I needed a "real" reason to see my doctor.) Be straightforward when you do meet: "We have been trying for ______ months/years and can't get pregnant. What can we do?"
• You can make an appointment with a different doctor if you don't feel yours is listening or responding well. (The idea of disagreeing with my doctor was completely foreign to me!)
• There are easy tests that can be performed to check important baby-making information. A trip or two to the lab to get blood work may be all you need to get some answers. You can request labs from your doctor if she doesn't suggest them. (I didn't know this, either!)
• There in an easy test for your hubby to check his count and motility. Do this right away. 
• Have bloodwork done every year. I've just learned this one the hard way. Your levels may change. In fact, my doctor recently said that as far as FSH and AMH levels, he sees significant drops take place every six months in women with DOR and other imbalances.
• Endometriosis is serious, so if you or your doctor suspects it, don't waste time.  With endometriosis, your body is functioning incorrectly, and tissue that should only grow in your uterus is growing in other places. It doesn't go away on its own, and usually it gets worse if untreated. I used to think it simply meant painful menstrual cycles, but it's so much more than that. 
• Endometriosis cannot be cured but it can be prevented from getting worse. If you suspect endometriosis, don't wait. There are hormonal and surgical treatments.
• There is a reason specialists exist! Our OB/GYNs and family doctors can only go so far.
• Be brave and proactive as you seek medical answers. This is your health and your life.

Gratefully, God gives grace even when we don't have all the right answers. He cares about infertility and cares deeply for the infertile couple. I look back at our journey and am amazed at where we are now. Most of the time it was a slow process of placing one foot in front of the other, unsure of where the next step would take us but recognizing that we seemed to be headed somewhere. We would have a hunch or feel a nudge or meet the right person and then--another step taken. A phone call, an email, a conversation--one more step. It was God always. Moving and guiding us. Calming and encouraging us. Taking rests with us and directing detours for us.

There are things I wish I would have known, but I recognize that I could have never known how God would show up in our lives all because of infertility.

New bad news

Yesterday's appointment did not go as we had planned. We headed to the doctor around 3:30 expecting to hear that everything looked good and our IVF was an easy go. The news we received was disappointing. No, that's a nice way of saying it. It was devastating.

The doctor diagnosed me with something called Diminished Ovarian Reserve (DOR), sometimes known as Primary Ovarian Insufficiency. What this means is I have a reduced number of eggs left, a reduction that shouldn't be present for another ten years. All women begin to experience some form of "wear and tear" on their eggs in both quality and quantity as they age, but a significant drop doesn't usually happen until late 30's and early 40's. It's uncommon for women in their twenties and early thirties to have this. When they do, it's diagnosed as DOR.

Three tests were done to check this. Blood tests checked my levels of FSH (Follicle Stimulating Hormone) and AMH (Anti-Mullerian Hormone), and the Saline Sonogram checked the development of follicles among other things. A woman with DOR with have high FSH and low AMH. Furthermore, there will often be a lesser amount of follicles present than with a normal woman. All three tests confirmed each other.

The doctor said that a healthy, fertile couple has about a 20 percent chance of conceiving every month. He guessed that we have -- are you ready for this?? -- a 1 percent chance. 

One percent. My eyes filled with tears when he said those words. It was quiet in the room for a moment because neither Robby nor I really knew what to say. We weren't ready for news like that. How do we even continue talking about having a baby when our chances have just plummeted to be one in a hundred?

There was more. The saline sonogram showed something a bit abnormal with my uterus, something the doctor performing the procedure called a bicornuate uterus. My doctor didn't agree with the diagnosis, though. He said we would have seen this on our previous HSG done a few years ago. Who knows. Something's there, and it could be a problem. The options are to have surgery and fix it or to move on.

So, there we were hit with two huge bats of bad news. Somehow we started talking with all that and we actually had a really good appointment. IVF isn't out for us. Not all doctors will perform an IVF on a woman with DOR because the success rate does drop, but ours will. We just have to realize that we won't have the chances we thought we were going to have.

Still, a 30% chance is world's apart from a 1% chance, and we want to take it. In a way, it confirmed for us our desires to move toward IVF. The doctor also didn't think the surgery to correct whatever is up with my uterus was necessary. That was good to hear although I'm still not completely settled about it. Googling doesn't help, either.

We were positive on our way home, albeit completely shocked and shaken by the news. It's all settling in still, and unfortunately I usually feel worse before I feel better. But God's with us, and we hold to that truth.

Lifted up in prayer

Today my friend at church commented multiple times on how happy I seemed. I was a bit perplexed at first -- am I usually a downer? But then I realized she was right! I didn't just seem happy; I felt genuinely joyful inside. What was the difference, I wondered? I immediately began spinning through the different things that could have caused this change.

First, no doubt about it, the extra hour of sleep last night had to have helped. I mean, who doesn't benefit from some extra snoozes? Second, I have taken steps to remove extra burdens from my life. These burdens were good things - a great ministry (Kid's Praise) and a fulfilling part-time job (piano teacher). But I had felt for some time that I was having to squish everything to make it all fit, and that was getting exhausting. I knew that no matter what happens in our pursuit of a family, some roles and commitments were going to have to change. So, as hard as it was to let these things go, I did, and I know it was right. Finally, our labs are over and there is a "plan" in place. That feels good.

But even these things don't equal joy, at least not for me. I've had extra sleep before, and I've removed extra activities from my life. And I know that in this struggle--as in life--no plan is full-proof.  These things have been good and have been gifts from God, but I have no doubt about the reason for my joy these days. It's quite simple:

Dozens and dozens of people are praying for me and Robby.

As we have become more and more open about our struggle and our needs, more and more people are pleading on our behalf before our God. There already were many people praying for us fervently and diligently, and now more have been added. It's humbling. Hundreds of prayers have been offered for us.

The phrase "lifted up in prayer" is a common one among Christians. Although I don't think it's necessarily a phrase taken directly from Scripture, the idea certainly is present in God's word. When we pray for someone, we bring them and their needs before God.  We hold them before the Lord and ask his blessing and comfort upon them. This is the picture of the Church, is it not? In Romans 12, one of the key chapters and books about the Church as the body of Christ, we read the following:

Be devoted to one another in brotherly love. [. . .] Be joyful in hope, patient in affliction, faithful in prayer. Share with God's people who are in need. Practice hospitality. [. . .] Rejoice with those who rejoice; mourn with those who mourn.

I know we have been lifted up in prayer, and physically, spiritually, and emotionally, I do indeed feel lifted up. I am full and overflowing with hope and joy. I am no longer weighed down but instead am raised.

A few people have written out prayers for us and given them to us to read. This is new for me, but I have been so encouraged to get to hear what another has asked of God concerning us.  It's like eavesdropping! Here is a recent prayer, given to Robby by a friend last week. I love how this prayer reflects the person who prayed it.

“Be fruitful and multiply. Fill the earth with your offspring.” 

Father,They would love to do that. There’s no command they would rather walk in obedience to than this one.. To multiply. To fill your earth with new life. 

But what’s the deal? Who gives children but you? Whose capable of creating life where there was none before but YOU? 

Do you not see the pain this causes them? Do you not see how hard it is for them at every announcement, “it’s a boy” or “it’s a girl.” How many more baby showers must they go to before their own? 

What keeps you from speaking the words that bring life? “What Father doesn’t want to give their children good gifts?” 

There’s no doubt in my mind that you love Rob and Candace, that they are your beloved son and daughter, and that you SEE them. So please YHWH, live up to your name, and ACT! 

BRING YOUR KINGDOM! Touch your resurrection power on their bodies. 

Bring that beautiful bump on her belly. 

Jesus, its you who taught us to pray so boldly, and it’s in your NAME that I pray amen.

These are sweet words to us. I smile every time I read that line about the bump. Prayers are sweet and powerful, and I'm reminded that God's people, just as II Corinthians 2 says, are the fragrance of Christ.

Thank you for praying. Thank you for lifting us and our needs before God. Your prayers have not gone unanswered! Although we wait to see if God will grant us a baby, we know He has answered. He's with us. He's guiding us. And His Spirit and His people are bringing us more comfort that we knew we could receive! Thank you.

Finished!

My procedure today is over, and I made it through! I thank God for providing me with a new doctor who was able to make it happen without causing me too much pain. So, I'm finished with all of my labs, and now we wait for our appointment on November 6th to hear about the results.

Please pray for us. Specifically, pray for:

• Continued guidance in pursuing IVF
• Wisdom for our doctors and nurses as they review results
• Provision of necessary finances
• Insurance coverage
• Peace

Recently, I have come across a ministry site called Dancing Upon Barren Land that has been such an encouragement to me! There was a place on the site to send a message, and so I did, thanking the woman for the wonderful ministry. The very next day, she sent me a kind response, and I wanted to share her prayer here.

I have prayed for you and will send your prayer request to our team to pray as well. I asked the Heavenly Father, "To make your steps sure and full of peace. For your eggs to be plentiful and healthy. For no adverse reactions to any meds. For our wonderful Lord to grant the desires of you and your husband's heart." As Luke 1:37 says, "Nothing shall be impossible with God." Hold daily to Jesus, He will carry you in this process, He is faithful.

I know that all of you are lifting us up in prayer, and I thank you. We have continually recognized the blessing we have in our family and friends. You have been and are God's grace to us. Thank you!

I'm up (and I'm a new creation!)

It's 3 in the morning, and here I am. I woke up not feeling great, and then I started thinking about today, and then I couldn't fall back asleep.

In just a few hours, I have to have Monday's procedure, the saline sonogram, done all over again. I'm not looking forward to this, mostly because I'm afraid that whatever happened Monday might happen again.

Monday's appointment was terrible. It was hands down the worst medical experience I've ever had. It's difficult to accurately explain how awful it was without going into lots of personal details, but I'll just say what should have been a relatively simple twenty-minute procedure took an hour and a half. And it was an incredibly painful and uncomfortable hour and a half. All said and done, the doctor performed the entire procedure twice (after first trying unsuccessfully to do it with improper equipment) only to get up, turn the lights on, and tell me it didn't work. He gave me a physiological excuse which didn't really match up with my past experiences, said he was terribly sorry, and left. When I asked for more details about his reasoning, he said it could be something permanent, some type of scar tissue or blockage. Those kinds of things cannot be said to a woman desperately trying to have a baby.

I only made it about two steps outside of the building before I began sobbing, overwhelmed by the whole excruciating and emotional experience. I could barely get the words out to Robby to tell him it hadn't worked, and it took a few minutes before I could relay the information the doctor gave me.

A bad experience, to say the least, and one that I'd rather not relive in the slightest. So it's no surprise to me that I'm up.

I've found comfort in 2 Corinthians this week. This morning, I read the end of chapter 5. It says:

Therefore, if anyone is in Christ, he is a new creation; old things have passed away, and look, new things have come. Everything is from God, who reconciled us to Himself through Christ and gave us the ministry of reconciliation. (2 Cor 5:17-18)

This passage, and specifically chapter 5, is about Christ's death bringing life for all. We have hope for today and for our future because of Christ. We are made brand new through Jesus, and we have been reconciled to the God who made us through Jesus' death and resurrection.

Sometimes we need to be reminded that we are a new creation in Christ. Sometimes, when it seems like our bodies just aren't working the way we'd like them to, we need to hear that God has placed inside us something that will never fade or dim or grow old. He's given us a new Spirit, His Spirit, our seal of salvation and our downpayment for the perfect and whole life to come. He's given us Himself and His very presence. It's true that our bodies and our flesh may fail us--Paul in this chapter writes of us groaning in this body, desiring for Heaven, longing for life to swallow up this mortality--but we have and are being saved, reconciled, and redeemed by God. Newness has already come! Salvation is already here!

Insurance Surprise

I'm feeling great today. Yesterday was a productive lab day -- we somehow managed to get three of the five labs done in one day, which was pretty lucky as most of them are "day this, day that" types of labs. I only have one more procedure to do, the saline ultrasound, which will be this Monday. I'm surprised with how quickly we have been able to do the work-up, which is nice because those tend to cause a bit of stress. The labs themselves aren't too bad (the worst one is definitely still to come), but the difficulty lies in planning them around our work and church schedules. It's nice to have them nearly over.

The other fantastic news came today when I decided to double-check my insurance coverage. Over the past three years, only a few things have been partially covered, those procedures that could be considered purely women's health. Some ultrasounds were covered, as well as a portion of my surgery in January of 2010. Anything related to our medications or IUIs came completely out of pocket. Turns out (fingers crossed) that our insurance will cover a lifetime max of $2000 (75/25 coverage) toward infertility once our deductibles are met. (That's right, deductibles, plural. They add in an infertility deductible on top of our regular one.) We should meet all the minimums, though, so it is likely that Blue Cross will kick in something around that amount for us. This is pretty amazing since infertility coverage at this point in time is quite limited if not practically non-existent. What a blessing that ours has it and that my doctor is a participating provider! Even the insurance representative I spoke to on the phone said that is rare to see!

It's been an encouraging week for me, and this was a beautiful, surprising icing on the cake.

IVF Answers...and Anxiety!

After I wrote my post following our doctor's appointment last Monday, I was hit with the 24-hour Anxiety. Have you ever had this? Mine came on that night, kept me wide-eyed and sleepless until about 4 am, then stayed with me all the next day. My heart was racing, my body was panicky, my breath was short, and overall I was a mess. I think it was a case of information overload, but perhaps the bigger cause was realizing that we had thrown ourselves in the midst of a huge decision...and I hate making huge decisions. Honestly, who likes them?

That has been one of the key struggles for us, this whole having-to-decide-things-that-ultimately-scare-us-to-death struggle. It was hard to make that first decision to see my doctor, knowing it was a recognition that there was something wrong. It was hard to decide to do treatments, knowing the cost and side effects and emotional strain. It was hard to decide to have our first IUI, and then the following IUIs. Decisions about cost, treatments, careers, even adoption--we've made too many to count, and I haven't liked the process a single time!

I guess I shouldn't have been surprised that anxiety hit, then. It wasn't a simple decision of having or not having an IVF. It was recognizing all the in-between decisions that must be made, decisions that stretch our thinking and planning and beliefs more than any others have. It was realizing that if this all works, we have taken only one tiny step of the journey. And it was also realizing that after everything, there is a chance we may be left with nothing.

All that jam-packed into twenty-four hours was enough to knock me flat! Thankfully, Robby and I were able to have a good conversation that following night. (He had been feeing anxious about it all, as well.) We remembered that there is no rush. We have taken a tiny first step, and the steps that follow may be tiny, too. As much as we don't want to make these decisions--because as I've shared this is not the way we would have planned it--we know God has equipped, is equipping, and will equip us to do and decide what we need to do.

I have also remembered that sometimes, when you're in the midst of a struggle, every decision and emotion is amplified. It was helpful to take a step back and allow myself to see the decisions in front of me in their real form and size. It was helpful to remind myself that we are not the first to decide what to do about infertility, nor are we alone in this struggle.

A week has passed since that visit, and already we feel more confident and prepared. I'll take that any day over anxiety :)