April 8, 2013

Mother's Day for the Grieving and Hurting

Over the years I have come to deeply appreciate the friends (and strangers) in my life who are willing to go out on a limb and do or say something that recognize my losses.  I know that on their part they took a risk in doing or saying something that they must have wondered could have upset me or turned me off.  

But they always do the opposite- they endear me to them and serve as sweet reminders that though not everyone can know what it’s like to walk the road I have, they can walk a few steps on it with me and in turn become a part of the healing my heart is longing for.

With Mother’s Day just around the corner and knowing that so many of you know someone who has had a pregnancy loss or is struggling with infertility, I wanted to share some ideas on how you might be able to walk a few steps with these women and make what can be a dreaded day one that reminds them they are loved and thought of.
  • Give them a card, or write them a note.  I always vote for something hand-written because it’s something that they can come back to again and again, especially on days when they feel alone in their pain and need a reminder that others are carrying some of this hurt with them.  
  • Give them a hug.  It’s amazing just how much physical touch can communicate without any words being said and the emotions it can bring out.  So don’t be alarmed or ashamed if in giving a hug to someone who has lost a baby or is struggling with infertility you pull back and see tears.  Those tears are necessary and are a part of their healing.
  • Give them a gift.  It could be flowers or something personal like a necklace or charm.  I have been the recipient of a few beautiful necklaces that pay tribute to my babies and my mother’s heart.  I do not wear them every day, but even just to look at them is such a sweet gift.  One year a friend sent me two felt birds in the mail on the Mother’s Day after my second miscarriage and now birds have been a way that we commemorate the lives and losses of our babies- each year we put our 6 felt birds on our Christmas tree.  And in turn, I have given a few friends who have lost babies their own felt birds to remember their babies by.  For one friend, I knew the months her babies were due to be born, so I did birds in the colors of those months’ birthstones.  Etsy has so many choices for customized jewelry and things like felt birds and at very affordable prices
  • Say something.  Anyone who has lost a baby or who has struggled with infertility will tell you that one of the hardest parts about it is that so often their pain goes unrecognized.  You can imagine how Mother’s Day only heightens that pain.  Don’t worry about saying anything profound or uber-spiritual.  Just saying “I know this day must be hard for you.  I love you and I am thinking of you” goes a long way.
If you know the name of your friend’s baby who passed away, then say their name, write it in your card or note, or considering using it on a necklace or other commemorative gift.  While this may seem like something that would be far too upsetting for a woman, it is actually just the opposite.  When a woman has lost her baby and has given them a name that they have shared with others, saying or writing that baby’s name only helps her to feel that others acknowledge her loss and are entering into some of her mourning.  It’s a beautiful thing you are doing, I promise.

And these are things you can do any time of the year.....you can never communicate enough to a woman who has lost a baby or is struggling with infertility that you are thinking of them.

One last thought: If you are a part of a church community and have noticed that women who have lost babies or are in the throws of infertility are not recognized, then ask your church leadership to do something on Mother's Day that acknowledges these women.  At our church, we give flowers to all of the moms and the ones who have lost babies get white ones.  We also say something from the front that pays tribute to moms who have children to hold in their arms and that also acknowledges the women have lost or are still waiting for their own children.  It's simple but very meaningful.

April 1, 2013

And Here We Are Today

Over the last couple of years, women (and some men) have asked me what we have done medically to address my recurrent pregnancy loss (RPL), which is a form of infertility.  And so, in an effort to help others- or help others help someone else- I am going to share all that we have done in the last few years with the hopes that it will help others.

After my second miscarriage:
We sent in our baby’s remains for testing to see if we could get any answers as to why we lost this baby.  The results came back “not viable for testing,” which meant we would not get any answers or know if this was a chromosomal issue or something else.

You do not have to have a D&C done to have your baby’s remains tested.  I miscarried naturally at home with all of my pregnancies and the key is to put everything you collect in the refrigerator and get it to your doctor/midwife immediately.  

I had extensive blood work to check for any auto-immune diseases and/or blood clotting disorders.  Everything came back “normal.”

Some doctors will have you wait until your third miscarriage to have the testing done, but don’t do that if you do not have to.  If your insurance will cover it (some may force you to wait until your third miscarriage), I urge you to get the testing done before your third pregnancy.   If you have a family history of auto-immune diseases and/or blood clotting disorders, then get tested before you get pregnant the first time.

And I made arrangements to be put on progesterone the next time I found out I was pregnant.  I did 100mg daily.

The only thing I would have done differently here was have my progesterone levels tested before my second pregnancy (it’s a simple blood test done on the 21st day of your cycle) because we would have seen that my levels are very low and I could have been on the progesterone sooner.

After my third miscarriage:
We also had the remains from this miscarriage tested and still could not get any answers.  This was frustrating, to say the least, but we would later be so glad that we did this.

My husband and I underwent genetic testing.  This involved a meeting extensively going over both of our families’ histories to see if anything jumped out to the geneticist as a possible culprit and then another simple blood test that would in turn allow technicians to see if we had chromosomal abnormalities.  Everything came back “normal” for us both.

If you are African-American, or of Jewish or French-Canadian descent, get this testing done for sure as I seem to recall that a lot of the possible abnormalities that could present at the chromosomal level were in people of these descents/ethnicities.

I also made an appointment with a Reproductive Endocronoligist (RE) doctor.  These doctors specialize in infertility and can take you to the next level of testing that is available.  As much as I wanted to stay under the care of my midwives because I was comfortable with them, they had limitations of what they could medically do for me.  

When you have your first appointment with the RE doctor, bring all of your medical files, lab results, and anything else you have that will help them get a complete picture of where you have been up to that point.  Be prepared to answer a lot of personal questions about your sex life and have a good understanding of how your cycle has been since you started trying to get pregnant.  These doctors are like detectives- at least the good ones are- and they are going to want to know a lot about you to help them decide what the next step will be for you.

My RE doctor wanted me to do an hysterosalpingogram (HSG), which is an X-ray of the uterus and fallopian tubes.  This helps the doctor to see if you have a mis-shaped uterus or blocked fallopian tubes and is typically a test done on women who cannot conceive.  In my case of being able to conceive, the doctor wanted to know if I had any uterine abnormalities.  

I scheduled the appointment and got as far as the procedure room but then I walked out because it did not feel right to me to do this test.  I still cannot explain why I walked out of the room with a doctor, a nurse, and a few other medical professionals left behind trying to convince me to stay, but I knew I had to listen to my body and my body was saying “NO!” to this procedure.

The lesson here is to listen to your body.  You know what is best for your body and while it is the doctor’s job to tell you what tests they recommend, you get to decide if, when, and how you undergo those tests.

After my fourth and fifth miscarriages:
We decided it was time to take a break from getting pregnant- my body was tired but even more so, my heart was crushed and I was emotionally spent.

I began seeing an acupuncturist and she confirmed what I was already feeling- my body was depleted and it needed time to heal and restore itself.  It was costly, but we decided that I would go to acupuncture once a week and I ended up doing that for almost a year.  My acupuncturist became an integral part of our team of experts, and she used Chinese herbs and essential oils to help my body heal.  

Slowly, but steadily, we began seeing physical improvements in me- my tongue was becoming more pink and less purple; I did not feel cold in my feet and hands anymore; my energy was coming back; aches and pains I was experiencing were going away; my cycle was getting back on track and lessening in length.  All of these were signs that where there was once blood depletion (all of the miscarriages did that) and stagnation, now blood was flowing freely and as it should.

To me, the biggest win with the acupuncture was the emotional release it provided me each week.  There were sessions that I would lie on the table crying and since I could not move much because of all of the needles, I allowed the tears to fall freely.  While I had grieved all of our losses along the way, I had a great deal of grief in me centered around my body and how things were supposed to be but were not.

I cannot say it enough, listen to your body and do not underestimate the importance of taking care of yourself emotionally.  It’s normal- and I would say even inevitable- that you will need to grieve and cry over your body and how it is or is not performing.  Allow yourself the freedom, and time and space to do this grieving.  

In this year of taking a break, I was diagnosed with having a blood disorder called Methylenetetrahydrofolate reductase (MTHFR).  I won’t bore you with the details about this, but the biggest problem (in my opinion) with MTHFR is that doctors cannot seem to agree on what role it could or does play in RPL, amongst other things.  To this day I still cannot get a straight answer on what role MTHFR has posed or could pose in my past or future pregnancies.

I have done my own research and have decided that not only is MTHFR something to address in my pregnancies, but also in my day-to-day living, so I take Methyl-Guard each day.  This is me being my own advocate and deciding what is best for my body and my baby.

After a year of waiting, we got pregnant for the 6th time.  I elected to not return to the RE doctor I had been seeing because I was not happy with my care or his course of action.  I felt like another case and like he was not willing to think outside the box.  That’s not the kind of person I wanted on my team.

Do not be afraid to “fire” your doctor and find a new one.  They are working for you and if you feel like you are not getting the care you need, well then you probably are not and you should find someone new who will offer you that level of care.  You have to be your own advocate.

This pregnancy was the furthest I had ever gotten (I made it to 10 weeks) but when we went in for our first ultrasound, there was no heartbeat.  We don’t know why this happened again but we do know that we did everything possible on our end to get my body ready for this pregnancy.

After my 6th miscarriage:
We went to see a doctor who was a specialist in RPL.  She reviewed all of my medical files and after a long first appointment, she recommended a hysteroscopy (another way of doing the HSG) and a uterine biopsy to see if I had infection in the lining of my uterus.

She also noticed that I had never been tested to see if I was a carrier for the Cystic Fibrosis gene.  That test came back as “no” and we were able to eliminate another possible culprit.

The other thing she wanted to do was request the remains of our second and third pregnancies from the hospital we had them tested at (we learned that after they do testing on the remains, they put them in wax blocks for a period of time).  The paperwork went through and the remains were sent to a lab in California for more extensive testing and what we found out would prove to be important for my next pregnancy.

I had the procedures she recommended done in August 2012 and both came back “normal.”  

That fall, my husband and I were told that there was nothing left to be done for us in trying to find answers to the reason why I kept miscarrying and that with any future pregnancies we had a 30-40% chance of miscarrying again (the average population is in the range of 15-20%).  

But we were also told that the next time I become pregnant that I was to take 200mg of progesterone and a baby aspirin each day.  The aspirin was because one of the tests done on the pregnancy remains revealed some clotting in the placenta which could have easily caused the blood supply to my baby to be cut off.  This was a huge find (in my mind) because it was an answer of sorts.

And here we are today.....
Today I am 15 weeks pregnant with a healthy baby.  I am back with the midwives I started off with and I was carefully followed throughout my first trimester.  I took 200mg of progesterone until I was 12 weeks and will continue the baby aspirin until I am 36 weeks.  I can go in and hear the heartbeat as much as I want and have been treated with the utmost care and understanding by the midwives.

So are the double dosages of progesterone or daily aspirin the things that made the difference this time?  Could be.  I will never say they were not, but I also will never give them all the credit.

This baby is our miracle baby and GOD gets all the credit for their strong heartbeat and little legs that kick inside of me.  Honestly, I believe HE has put us on this journey for purposes we can see now and ones that I believe we may never know this side of heaven.

I was never promised a baby (I still am not) but I was promised HIM and through all of this- through all of the testing, waiting, hoping, despairing, longing, and grieving- HE showed up and proved to do what HE says HE always will do......work for the good of those who love HIM.

How do the deaths of six babies demonstrate the goodness of GOD?  The answer does not lie in my understanding of things alone, but in the truth of who HE is.  

I am grateful for this journey in ways that may not make sense to some and I’ll leave those thoughts for another post, but what I want you to know is that if you are on a similar journey- or if you know someone who is- this does not just have to be just a quest for having a baby.  This journey can be so much more than doctor appointments, support groups, crying, and waiting.....

It can be the start of having a deeper understanding of who GOD is and who you are in CHRIST.  Your sole purpose in life is not to have a baby and your worth does not lie in that.  And I believe that GOD can and wants to use where HE has you now to demonstrate HIS love to you and the promises HE has for you.

That's what HE did for me....amongst other things.