Remembering Our Losses

October 15th is National Pregnancy and Infant Loss Remembrance Day. I have long followed various blogs of people who have lost pregnancies as well as infants, and of course some of our closest friends had a daughter who was stillborn last year. However, aside from a moment or two of pause that I've given to the memory of those babies, October 15th has always been just another day to me. Maybe that's because I wasn't as sensitive to loss as I should have been. Maybe it's because it just wasn't that personal to me. Either way, that has changed. October 15th is very personal to me now. 

After losing B3 at the beginning of this year, I began attending a support group called MEND (Mommies Enduring Neonatal Death). My attendance has actually been pretty sporadic as it's very hard for me to convince myself to go. The meetings are heavy, and I often have trouble sleeping the night of the meeting. It's hard to confront my own feelings of loss, but it's also intense to watch others grieve and weep over their lost babies. 

However, the meetings have also been very healing for me in many ways. It's such a blessing to have a place to go and talk about my grief and my feelings and have everyone in the room understand exactly what I'm talking about because they too have traveled this road of loss. It's also been very valuable for me to see others in different stages of their journey. My deep grief has been validated, but I've also been able to see those who are 2 or 3 years "out" and are functioning in a new normal. They can talk about their loss, see the blessings in their journey, and they are okay. Forever changed, yes. But okay. I needed that especially in the early days after my losses.

As a side-note: Had you told me a year ago that I would be attending a support group, I'm pretty sure I would have never believed it. I've never thought of myself as a support group type person (whatever that means), and I don't mean that in an arrogant or haughty way - I just never saw myself in this place. It's something no one signs up for, ya know?

So anyway (I totally rambled on for a bit there), MEND hosted a balloon release to honor lost babies on October 15th. Chris participated in this event with me, and - though it was difficult - we're both glad that we went. 

We each released a balloon for each of our lost babies.

All of the balloons floating away were really beautiful.

We each wrote on our balloon released for B3. We just had such a connection with that baby. We had seen him/her 3 times on an ultrasound. We had spent weeks planning for him/her in our life. We had talked about names. Our second loss was very different as we hadn't seen that baby or bonded with it in the same way, so we didn't write on the balloons released for him/her. But, we still wanted to remember and honor that life. 

It felt really good to be able to do something in honor of those babies. Grieving someone who you never got the chance to really know is hard. Sometimes, I feel foolish for being so sad, but I'm truly thankful for the blessing of groups like MEND where I can go and share with others experiencing the same things.

I know I've been talking about grief on here a lot lately, but there's so much that we're still trying to work through, including how to move forward from where we are now. Our trials with infertility and loss has not dampened our dream of having a houseful of babies. Both Chris and myself still wish to have more children one day, but we're taking time to really pray about how to pursue that desire. Right now, we're thinking about starting fertility treatments again sometime during the early part of 2014, but we're not for sure yet. We are still recovering from the nearly $10,000 spent this year for the fertility treatments that helped bring us B3 and July Baby and the testing that I had to have done in May (which we thought was mostly covered by insurance only to be hit with a $1800 bill in late September).

With that said, we have received some pretty negative feedback regarding us continuing to grow our family. We've heard things like "Can't you just be happy with what you have?" and "You have a girl and a boy already" and "Don't be greedy". Though I don't feel like I owe anyone an explanation regarding this issue, I do want to clarify a few things.

One thing is that we are so happy with our two blessings. We know how blessed we are to have them. In the six years we spent trying to have a baby, we had the very real conversation (several times) about the possibility that we may never have children (biological or otherwise), so we THANK and PRAISE GOD every day for how He has blessed us. If we were not to be blessed with additional children, we would still live a content, abundant, joy filled life.

That fact does not, however, take away our heart's desire for more babies. For me, that desire has been especially strong over the past few months. I really, truly thought that I would be pregnant again at this point in the year, so the fact that I'm not (and may never be again . . . I don't take the fact that I can even achieve pregnancy again for granted) is a grief process of its own. There have been several times recently that I have heard a pregnancy announcement (or come across it on my FB feed) and my heart has physically clenched. That physical reaction to an emotional wound is not unfamiliar to me (it happened often during those years of trying for a baby before having one), but it stills stings. That's not to say that I'm not happy for those friends - or that I wish they were on this same road that I am - I'm just sad for me. They are two emotions that I feel simultaneously - the happiness for others and sadness for myself. I'm sad that my dream has had to change and may have to change even more. Realizing how blessed we are does not change our dream. Maybe you don't understand that, and that's okay. I just want everyone to know that we give God the glory for our two beautiful blessings, knowing that He is the true giver of life, while we look to Him for wisdom regarding how to pursue {or rewrite} our dream.

Also, just because we were blessed with a girl and a boy does not automatically make our family complete. I posted about this once before here. I feel the same now as I did then.

Okay, that all just kind of came tumbling out. Ooops :-). As always, thanks for all your support.

And now, for the rest of the story

After losing B3 back in January, our hearts were so grief stricken that we couldn't even really talk about when/if we wanted to begin trying for another baby again. We had always said that we wanted a houseful of babies, but loss and grief can change things. However, after some time had passed and we began to come out of our darkest days of grief, we realized that our family did not feel complete and that we weren't ready to give up on the idea of more children quite yet. 

At the beginning of May, I made an appointment with our fertility specialist, Dr. P. We didn't necessarily want to begin cycling right then, but we did need to see how my body was doing health-wise and what steps were necessary before we could begin cycling (remember, I have PCOS and often have serious flare-ups, so sometimes some prep work is required before we can begin fertility drugs). So, this initial appointment (on May 8th) was just a consultation.

We had already been released from Dr. P and were seeing our regular OB, Dr. N, when we lost B3, so we hadn't seen Dr. P since our loss. Regarding our miscarriage, Dr. N had basically told us "these things just happen", but as soon as we met with Dr. P he wanted to look into the situation further. We don't fault Dr. N for this at all . . . it's not really his job to figure out the why behind what happened. During our {very long} consultation with Dr. P, he asked me to describe in detail all the events leading up to the miscarriage, as well as everything that happened during the miscarriage. I remember that he sat in his chair for what seemed like a long time just thinking about what we had shared with him. Then, he finally said, "I think there is a distinct possibility that there may be something serious going on here." Meaning, he thought that perhaps I had a physical or genetic issue that caused our loss. He recommended that I have some blood tests done to try and give us an explanation for our loss. He left the final decision up to us, but he said that many issues have a simple fix and that "every life counts" in his book. I remember feeling so thankful for a doctor who is willing to dig deeper for us and empathize with us over our loss. And for a doctor who believes that every life counts.

After some discussion and prayer, Chris and I decided to have the blood tests done. We want more children, and if we can prevent a future miscarriage by doing something simple than we certainly wanted to do that. Dr. P ordered a battery of 21 different tests (which THANKFULLY our insurance covered much of the cost of the tests), and we began a fertility cycle at the beginning of June. We hadn't received the test results yet, but we didn't want to miss the opportunity to cycle.

Our June cycle was pretty much a BIG mess. My body responded really differently to the meds than it had in the past (this was my 7th cycle with this protocol). I did 2.5 mg of Femara on cycle days 4-8, then began Follistim injections on cycle day 9 (75IUs). On cycle day 13, I went in for my mid-cycle ultrasound which showed one lonely follicle on my left side that measured 17mm. In the past, I've generally had more than one follie and had to do Follistim for 8 to 12 days in order for them to grow to maturity. This was a pleasant surprise to have one after only 5 days of Follistim measuring so "big". However, we were disappointed that there was only one, and my Estradiol was only 174. It was frustrating to get what we felt like were only mediocre results from the meds. We triggered on cycle day 14, and our IUI was on Friday, June 21st (cycle day 15). We've always had our IUI more around cycle day 18-20 in the past, so this was also a surprise for sure. During the actual IUI procedure, my cervix got nicked which caused spotting and cramping, AND my progesterone was low so I was put on supplements for that. We had little hope for the cycle after all of this, but we know that God is the giver of life so we hadn't ruled out pregnancy yet. 

On Monday, June 24th (just 3 days after our IUI), I received a call from Dr. P's nurse. She wanted to make sure I was taking a daily baby aspirin. I was pretty confused by this, as we have never done that in the past. She said, "Oh, well your blood tests revealed some things." After she was unable to tell me what exactly was revealed, I made an appointment to see Dr. P on Wednesday, June 26th for a second consultation.

In the interest of not getting too "medical" on here, I'll just give you all the short version of what was revealed. I have several issues. 1) I have a blood clotting disorder. The smallest blood vessels in the body are found in the uterus, so a blood clotting disorder can most certainly cause miscarriages. 2) I have the MTHFR gene mutation (click here for more info), also known to cause miscarriages and late-term losses. 3) I have a newly developed thyroid issue. This is not necessarily linked to miscarriage, but it was surprising to learn as Dr. P has consistently tested my TSH and it has always been in the normal range. I was put on a low-dose thyroid med for this. And of course, I have PCOS which is also known to increase the chances of miscarriage.

I was pretty shocked with all of this information. I guess I didn't think the blood tests would really tell us anything as I had had two successful pregnancies with no previous losses. However, as some of you long time followers may remember, I had a lot of growth complications when I was pregnant with Brianna. We know now that those growth restriction issues were linked to my blood clotting disorder and MTHFR issue. As soon as Dr. N detected a growth issue with Brianna, he put me on a daily baby aspirin and Folgard (prescription folic acid). She ended up growing again and being born completely average sized (7 lbs, 7 ounces). A daily baby aspirin and increased folic acid is the exact protocol that Dr. P uses to treat my two issues individually. However, since I have them BOTH, he also prescribed a daily injection of Lovenox, beginning as soon as we see a positive pregnancy test. With Brenson, I never had a single issue, and Dr. P told us that they simply don't know why these issues flare with some pregnancies and not with others -- even in the same woman. He said, "Science just isn't there yet."

Chris and I left his office that day feeling like the ante had just been upped in a big way. We already have to go through a lot to get pregnant, and now we'll have to do all this extra stuff to stay pregnant as well? It was hard to process, for sure. We spent a lot of time in prayer over this as we waited for the results of the IUI. We certainly still wanted a positive result, but it was a lot to take in.

On Friday, July 5th, I went in for my beta pregnancy test. The result? Positive. It was 44, and while that isn't a strong positive, it is a definite positive. My first reaction was honestly disappointment in a weak number, but I tried to remain focused on the fact that it was a positive. I immediately began the Lovenox injections (which again, thankfully are covered by insurance as they cost a little over $1000 for a one month supply and I have to be on them from the very beginning to the very end of pregnancy) and continued with the baby aspirin and increased folic (which I have to take all the time regardless of whether I'm pregnant or not). The Lovenox injections were - quite frankly - miserable. They hurt so bad going in and left terrible bruises all across my middle. However, I was willing to do what it took to sustain the life of my baby. My due date was March 12th. 

On July 11th, the day after B3's due date, we retested my beta. It came back at a measly 79. It should have been well into the 200-300 range at this point. We were devastated. My nurses exact words were, "Hold onto your heart, this doesn't look good." We continued on all meds, and retested again on July 15th. This time, it was 232. While that was a much better increase, it was still very low for as far along as I was. Four days later, on July 18th, we retested again. This time, it was only 349. We were just waiting for the miscarriage to begin as the situation seemed pretty hopeless at this point. And on Saturday, July 20th, I began spotting and cramping. The next day, I began full on bleeding at 6 weeks and 2 days along. 

I already had an appointment to retest my beta one more time on Monday, July 22. It came back at 789, so immediately we scheduled an ultrasound for Wednesday, July 24th. The ultrasound revealed that I had indeed miscarried again. There was nothing left in my uterus but a bit of blood. We stopped the injections and progesterone at that time, and I continued to bleed for just a few days. My beta was 2 the next time we tested. And our hearts were broken. 

There were several times while this was all going on that I thought to myself, "Is this really happening . . . again?" We were guarded from the beginning after losing B3 (which I hate . . . I miss that innocent, immediate excitement and joy), but we couldn't help but be excited and hopeful as well. We never saw a baby or heard a heartbeat, but we were so hopeful. All of the beta testing was such a roller coaster and it was miserable. It was so hard to be hopeful, then not so hopeful, then for the numbers to surge and be hopeful again, and on and on. When it was finally over, we felt a bit relieved. And then we felt horribly guilty for that. Emotions were all over the place.

I want to mention also that after our beta of 232, I was told by the nurse that my next beta would need to be at least 1000 or I would be instructed to stop all medication and wait for a miscarriage. I HATED that. I felt that would be like "pulling the rug" out from under my pregnancy, and I couldn't stand the thought of having to make that decision. We prayed and prayed and prayed that if I was going to miscarry that it would happen on its own . . . without me stopping the meds. That way, there would never be any doubt that something I did or did not do caused the miscarriage. Well, as I mentioned above, our next beta was only 346. However, Dr. P decided that "he wasn't ready to give up on this yet" and instructed us to wait another 4 days and redraw the beta. It was after the 346 beta that I began bleeding on my own. Such an answer to prayer! I was still on all the meds yet began the miscarriage anyway. So, I have no doubt in my mind that this was not my fault or due to a decision that I made.

So, why did I miscarry again even with being on all the meds? Well, Dr. P thinks we were simply dealing with a bad embryo. I agree. Things with this cycle just never got off the ground the way they should have. I don't believe this miscarriage can be attributed to my issues, although we'll never know for sure. 

Right now, we are counting our blessing more than ever. We would still love to have more babies, but we know there is a real possibility that it may never happen. It's hard to think that the life you had planned for yourself may never come to be, but that's all part of the grief process I suppose. We do pray that we'll be blessed with more children, and we especially pray for wisdom and discretion in moving forward with that pursuit. 

Through it all, we are praising God for His love. We know that through Christ we have joy on earth and a hope of better things to come. Truly, that is all we need.

Spilling Secrets

I've been sitting here with my fingers poised over my computer keyboard for several minutes. They are still, just waiting to carefully peck out the most recent developments in our journey on the road of loss and infertility. But, the words are frozen . . . not wanting to come. My brain is warring with my emotions - just fighting to get the story out before the pain consumes me. 

And truly, I don't even know where to begin. There are many details. Many small things that I want to document, but that are insignificant in light of the bigger picture. So, I'll just jump right in with the big stuff and save the details for later. 

Earlier this summer, we saw this yet again:

Yes, for the fourth time in my life, I was able to see what I have dreamed of for so long. It is what we have been trying to achieve for over 10 years now with very few successes. It was a positive pregnancy test.

However, just about as quickly as this blessing came, it was gone. I miscarried our baby at 6 weeks and 2 days along. 

For the second time in my life, I miscarried our baby. For the second time in 2013, we suffered a heartbreaking loss. For the second time since trying for baby #3, our dreams and hopes were dashed. 

This experience was vastly different from our experience with losing B3, but it still hurt like only the loss of a dream can. My heart is so raw . . . I've been torn wide open. 2013 has definitely presented me with some of the most difficult days of my life. 

As horrible as it has been though, I know that I am blessed beyond measure. I know that I have a heavenly Father holding me up - giving me strength for this journey. I know that I will be okay. 

And that's why I want to share my story. I want to share to encourage others who are going through this same thing. I want to share to help my heart heal from this pain. And I want to share to bring glory to my Father God who has never and will never forsake me. 

The details of this story will be coming soon.