September 14th

Given my history with pregnancy loss, when I found out I was pregnant with Kayden, I knew I wouldn't make it to my due date. The plan was to induce at 37 weeks just to make sure he got here safely. (I knew I would NOT have the emotional or mental capacity to get to 38 weeks again...I would have been a total wreck). 

In May, at 23 weeks, I started having contractions and bleeding. I was sufficiently freaked out. I didn't know what to do. I would have been happy going on bedrest, but I would have had to drop out of school. I wasn't dilating, but my doc put me on -nifedipine- to help stop the contractions and it worked, so I resumed my daily activities. The one time I missed a dose, I had major cramping, so I had to be careful to take my pills on time every day. Needless to say, thanks to this fun experience with preterm labor, it further solidified my idea that this baby would not make it to his due date. For some reason (probably for simplicity's sake) when people asked when I was due, I still said, "September 14th". So, for 6 months, 9/14 was on my mind, coming out of my mouth, and I associated this date with my little Kayden. 

Of course, we all know the story from there; Kayden would live inside me until June 14th and no further. He was born sleeping on the 16th, and was laid to rest in the ground on the 23rd. 

So why does today suck so bad? It's just a day on the calendar. It's on all my paperwork from my pregnancy: "EDD (Estimated Due Date) or EDC (Estimated Date of Confinement) : 9/14/12. Maybe it's the idea that this date should have been a happy one and it's not; that I should be a mother and I'm not; that I should have finally gotten to hear my baby cry after years of yearning for and wishing for that sound. 

I have the right to be sad today, I know that. I didn't think I would need to-even yesterday when I casually mentioned to some ladies that I was supposed to be due today, I didn't feel anything. But I woke up with a heavy heart this morning and it was unexpected and frustrating. So for today I will allow myself to feel sad and think of my sweet Kayden. 

And the results are in...MTHFR!!!

We've been hoping that something would come up that would shout at us "I'M THE PROBLEM!! FIX ME AND YOU'LL BE FINE!". Too bad that's not the case. 

If you've ever been pregnant (and even if you haven't) you probably know that folic acid (or folate) is important to the development of a healthy baby in utero. Among other things, a deficiency of this important vitamin can cause neural tube defects such as spina bifida. Luckily, my babies did not have this problem. They were both perfectly formed without any physical or chemical indication of neural tube defects. :)

However. My most recent blood studies showed a mutation having to do with the MTHFR gene, which stands for methylenetetrahydrofolate reductase (say that 5 times fast).  In words that are easy for me to understand, my body has a hard time processing folic acid. Doctors aren't entirely sure of the effects this can have during pregnancy. Some research has showed correlations between MTHFR and thrombolytic (clotting) events during pregnancy, but that wasn't very conclusive, and  it's not been studied enough to receive a consensual approval by the medical society. 

Bottom line: a normal multivitamin contains 400 micrograms of folic acid to receive 100% of the recommended dose. During pregnancy, doctors recommend their patients take 800 micrograms. With MTHFR, my doctor is recommending that I take 5000 mcg every day. Basically, they assume that any enzymes that are actually working to break down folic acid should be bombarded so that I have a higher chance of getting the folic acid that I need. Sounds a little sketchy, especially when one doctor says to take extra folic acid and another doctor says there's no point. I feel like I can't be a smart consumer and research what to do about it, because it's not out there, and what IS available, isn't reliable. Hopefully, if I keep searching, I'll eventually find some more answers. For now, I will do as I'm told and hope it's enough that we don't lose any more babies.

P.S. If you're related to me by blood, I'm supposed to tell you to get tested. It's also said to be linked to cancer, and cardiovascular disease. Take it or leave it. But hey, if you have it, we could be MTHFR-ing buddies!

Whit

The Unfinished Race

    In 7th grade, the Jr. High school counselor asked me what I wanted to do for a career. "Be a mom" was my simple reply. She seemed surprised at my response and didn't really know where to go from there. I remember she wrote, "Domestic Engineer" on my paper and sent me on my way. My mom had been a stay-at-home mom my whole life up until that point. It's not that society looks down on such a career but I guess as a life-long ambition, my counselor was less than impressed. Through the rest of my high school career, I thought I'd definitely go into a career in music. Just like most girls, I had my life mapped out-where I'd go to college, when I'd meet the perfect guy, when I'd graduate and have the perfect job and of course, kids would come into the picture at the perfect time. Don't get me wrong...I love my life. But on days like to day, I can't help but feel let-down.

    Imagine running a race. One of the really long races, like a marathon. Muscles aching, heart pounding, you've trained so long. You've done every excercise, you've practiced for months, you toned your muscles and you feel prepared. Suddenly, 5 miles from the finish line, you stumble. You're aching, and maybe you even gashed your leg open. Every part of your body and soul screams at you to give up. But you look up... everyone on the sidelines is cheering for you...you're family, your friends. Though you want to stop, you feel a gentle push telling you to finish. The next 4 miles are excruciating. Everything hurts worse, and at times, you don't feel you have it in you. People tell you you're strong and you find renewed strength, only to keep stumbling on your way. Finally, with 1 mile left, you see the 25 mile mark and know that you are SO close! You press on with all your might. Everyone in the crowd is cheering for you, telling you how great you're doing and that they are so excited for you. The race is easy again and you know it's going go be okay...

...suddenly, with 20 yards left, and like a rug pulled from underneath you, you fall. A hard fall this time-one that makes finishing the race impossible. That dream you had, that goal you had set flies out the window. The medics are on the scene now, telling you that it's going to be okay. They're gonna get you to the hospital and you'll be fixed up. Is it comforting? You're going to be okay, but you will never finish that race. You'll never take home a medal. People will say, "how did the race go?" and you'll have to hang your head and say, "I didn't finish." When your friends get together and talk about their medals and crossing the finish line, you'll be an outcast. Even though you ran the race and did everything right, you didn't finish. Do you feel sad? mad? empty?

Chances are probably not. Afterall, it's just a stupid race, right? It seems silly to compare my trials to a marathon, but on days like today, I just want someone to understand. I want someone to know how bad my heart is hurting. 

I got through 38 weeks (8 1/2 months) of my pregnancy with Scotlin and suddenly he was gone. My chances of being his mother were ripped from my grasp. I held him for a few hours and then handed his body to a nurse knowing that the next time I would see him would be in a casket. Life was SO DIFFICULT! I ached, I cried, I screamed. I told my story and people surrounded me. They cheered me one and I was lifted up. I got up again and I learned and I grew. I knew I could handle this. So many people prayed for us, and my relationship with my Savior strenghtened. I felt so relieved when Kayden came to us. I knew I'd been blessed and I was looking forward, with renewed hope, at my chance to be a mother. I was so close to that finish line when I fell. I cried again. I screamed at the doctors. I yelled at God, "I cannot do this again!!". Giving Kayden to the nurse was even harder, because I knew I wouldn't see him again. He would be placed in a casket, flown to Utah, taken to Logan where I would see his casket, trying desperately to remember how it felt to hold him.

  I'm not alone, either; so many people experience this loss. Maybe not in the form of infant or pregnancy loss. Maybe it's infertility or sterility. When that's not you, though, it's easy to forget that this type of pain exists. It seems that when 2 or more women get together, labor pains or the hardships of child-rearing are brought up. That's fine. But before you complain, think about the people around you (and the statistics say it's at least 25%) that have experienced a loss and would give anything to be in your shoes: to rock their crying baby to sleep in the middle of the night, or gain 75 pounds and feel sick and miserable during pregnancy. Anything that meant their baby was alive. It makes me want to scream, "WHY ARE YOU COMPLAINING TO ME?!?", "Don't you know I would give ANYTHING to have those things you're so recklessly complaining about?"

And then the guilt sets in, kind of like it is now as I write this post. (wondering if I should even post this, or if I'll regret it later when I get hate mail). I know that it's human to complain. I know that it's easy to feel down when things are overwhelming you. But when that instinct hits, bonk it in the head with a bat and realize how lucky you are to soothe your screaming baby, or clean the mud out of his teeth that he ate when you weren't looking, because you know he's alive and well and you can watch him grow and learn HERE, without hoping that your faith is enough to get you through this life until you get to see him again. 

OK, I'm done...seriously, let the bad vibes roll if it makes you feel better. Just post 'em in the comments...I can handle it. And most of all, if you made it this far, thanks for letting me vent. 

The Not-So-Conclusive Diagnosis

A couple weeks after Kayden's delivery, we found ourselves in my OB's office. I had been there so many times in the previous months, the staff felt like family at this point. What I didn't know is that Kayden's karyotype analysis (genetic study) had come back and it showed an anomaly:

 More than likely: it's pretty easy to spot, right? Usually you have 23 pairs of chromosomes. Sometime those chromosomes don't translate correctly when the cells are dividing and you end up with one less chromosome or one extra. In downs syndrome for example, a child would be born with an extra chromosome #21, or "trisomy 21". Well, in case you didn't notice, this picture shows that Kayden had "trisomy 8". See the extra chromosome #8?

 

The pathology report above says that a trisomy of some sort is the most frequent cytogenetic abnormality contributing to pregnancy loss. What my doctor added was that, because so many of Kayden's cells were affected, it most likely meant that my egg had an extra cromosome #8 to begin with. (If it had been the sperm, it would have likely been a "slow swimmer" and wouldn't have made it to the egg first). 

Every documentation I could find showed that this type of trisomy 8, (which is a COMPLETE trisomy rather than a MOSAICISM) is "universally fatal"- meaning it's incompatible with life. I started wondering how on earth Kayden survived so long and grew perfectly on track. When he was born, he had no physical manifestation of a genetic disorder. PLUS: when Scotlin had this test done, the sample tissue was taken from his actual body, and Kayden's was taken from my placenta. It wasn't adding up, but my OB didn't know anything about it, so I had to wait to meet with the specialist. 

July 25th, I was SO GRATEFUL to meet Dr. Mark Grant in Columbia. I won't detail our whole conversation, but basically he had the same suspicion I had and decided to talk to a geneticist to confirm. So, there I was wondering if I have some crazy problem with my genes that's killing my babies and Dr. Grant rushes in to save the day telling me that he and the geneticist talked and decided that the most likely cause was:

NOT TRISOMY 8!

The only way to be sure would be to exhume Kayden's body and retest using a sample from his body. HOWEVER-they didn't think that was necessary and that because he made it to 27 weeks w/o any abnormalities and had a completely normal growth pattern, the trisomy was most likely confined to my placenta. I said, "Oh, that's a thing...that's possible?" And he said "Absolutely." 

So...for years we thought Scotlin died from some awful stroke of un-luck. Then I miscarried and they thought that was just another crappy thing that happened. But as soon as Kayden died, my doctors rushed in to tell me that they think all three of these losses are connected somehow and they put Dr. Grant on the case to figure out why. Yesterday, I had a bucket-load of blood drawn to HOPEFULLY find a cause. Now we play the waiting game for a couple weeks and hope to get that phone call. In this case, we're thinking that bad news is better than no news, because it means there's something detectable that can be fixed. 

Until then, we'll just live knowing that our boys are perfect and we're so darn lucky they chose to come to our family.