Thankful

"Mama!  Mama!".  She calls me to her room.  I have already put her to bed and I know I shouldn't go back in.  But I can't resist her call to me, my only surviving child calling my name.  I guess this is why they say only children are spoiled.  I go to her and we cuddle and rock and I tell her a story.  The story of a little girl who wanted to grow up, get married and have lots of babies.  I tell her about how this little girl played with dolls and dreamed that one day they would be real babies.  And I tell her of how one day God blessed this little girl with a real, live baby of her own, another little girl, with blue eyes and blond hair and fair skin, a beautiful smile and contagious laugh.  I tell of how this little girl brings her mommy so much joy and how special she is and how she was put on this earth for a very special reason.  I hug her tight.  I kiss her all over and with a choked voice and tears in my eyes I tell her how much I love her.

Two days later I sit with Jason in his office under fluorescent lights.  Everyone else has gone home.  And we wait.  We wait for a call from Dr. Sher from Las Vegas.  He calls.  He has gone over our records.  He verifies that I have had five miscarriages.  I correct him and tell him no I have had six.  He apologizes.  He did not see the one I had to write in the margin because there were not enough lines on the form for all my pregnancies.  He goes on to explain our problem in more detail.  We have Immunologic Implantation Dysfunction, of which there are two kinds, autoimmune and alloimmune.  Alloimmune is worse and more difficult to treat.  That is the one we have.

This is very scientific and tough to explain and we are still trying to figure it all out ourselves, so bare with me.  Much of this is paraphrased from Dr. Sher's article found here.  Every person has two of a specific gene called the DQ-alpha gene, one from their mother and one from their father.  Alloimmune Implantation Dysfunction (AID) occurs in couples who have a DQ-aplha gene similarity.  As I stated in my previous post I have increased Natural Kills Cells (NKC).  I don't just happen to have an increased number of these.  I have more of them as my body's response to carrying so many DQ-alpha similar embryos.  This is how any woman's body would respond to similar DQ-alpha embryos.  These embryos rev up my immune system and actually cause me to have more NKC than normal.  Each pregnancy is different and the severity varies as Dr. Sher states, "The severity with which this occurs determines whether total implantation failure will occur, or whether there remains enough residual trophoblastic activity to allow the pregnancy to limp along until the nutritional supply can no longer meet the demands of the pregnancy, at which point miscarriage or pregnancy loss occurs."  This was the case with my little 16 week baby.  It wasn't as severe so the pregnancy "limped along" all the way to 16 weeks before I finally miscarried.  The surgeon said the baby's placenta and umbilical cord was "a mess".  This is characteristic of AID because way back at the beginning of that pregnancy my NKC was attacking that baby and although implantation occurred, it was not a true healthy implantation and therefore a perfectly functioning placenta was not able to form. It formed enough to get me to 16 weeks but it could not sustain the pregnancy to term.  And even if it had the baby likely would have been born with severe handicaps due to lack of nutrition throughout the pregnancy.  That is the scary thing with AID, you can lose a baby at any time, early in your first trimester, in your second or even in your third.  You could deliver a stillborn or if you finally do have a baby, the baby may not be healthy due to a poor functioning placenta during the whole pregnancy. 

So how is Riley here you may wonder, as we did.  I asked Dr. Sher that question and here is the amazing answer.  I have our test results right here in front of me.  They say, "Maternal DQ-alpha 102 and 201.  Paternal DQ-alpha 102 and 303."  As you can see, Jason and I share 102 but not the other number...we are a partial match.  This is good.  If we were a full match there would be no way at all we could ever carry a baby to term.  Even Riley wouldn't be here.  So 50% of the time we will get a baby that is not a DQ-alpha match and 50% of the time we will.  The matching ones will never survive.  The non matching ones (like Riley) can survive with treatment.  The problem is, now my NKC is so reved up from so many pregnancies with DQ-alpha matching embryos that my increased NKC will attack even the non matching ones.  In fact every time I get pregnant it just gets worse and worse.  It's like a snowball that builds and builds as it rolls down the hill.  So all this time we thought if we just kept trying another baby would stick when in fact it was making the problem worse.  Riley is here for two reasons, number one - she is not a DQ-alpha match and number two - she came along early enough in this process (she was only my third pregnancy) that my NKC were not high enough yet to fully attack her.  And so she survived.  That being said, I have always had a gut feeling that we almost lost her too. I could never explain why for sure, but I just knew it.  And Dr. Sher confirmed that on the phone last night.  I likely had some increase in NKC when I was pregnant with her, a result of my first two pregnancies that started those NKC to elevate but miscarried because they were likely DQ-alpha matches.  So these NKC were probably attacking Riley a little, not enough to cause her to miscarry and thank God, not enough to cause any major negative effects on her (that we know of so far) but there were signs that this was happening.  One - she did not move much the whole time I was pregnant with her, evidenced by my many frantic trips to the ER I took when pregnant with her, Two - She failed a Biophysical Profile Ultrasound Test at 38 weeks for lack of movement, which got us promptly sent to the hospital for an emergency induction (Which very likely saved her life.  Thank you to my amazing OBGYN for being smart enough to recognize something wasn't quite right and induce me early), Three - she was small for her gestational age when she was born, 5 lbs, 14.9 oz, suggesting she may have had a small restriction of oxygen and nutrients and Fourth - she did have trouble learning to speak which may be because of the environment in the womb and lack of nutrients to her brain while she was developing.  So I must stop for a moment and say there are no words to describe the sinking of my heart when Dr. Sher said all this.  The thought that I could have lost her too, at full term is more than I can bare.  I have gone into this mode of feeling just numb, so overwhelmed with all this info that my mind and heart just can't take it and to protect myself I have just gone numb.  But so many times over the past few days I just start to weep uncontrollably out of nowhere as the sudden thought darts into my mind of  the awful tragedy that could have happened.  I love her so much.  There isn't a thing in this world I wouldn't do for her and she perhaps was almost a victim of this awful diagnosis too.  But now I know why she made it and the others didn't and why she had trouble learning to talk and it is an absolute miracle that she is here and that she is healthy and that she was able to overcome her speech delay.  She is a fighter.  I have never been more proud of my little baby girl!

So we sit, Jason and I, after four years, we finally have a diagnosis and a doctor who knows what he's talking about and doesn't just say he doesn't know.  We sit with this new information.  We are overwhelmed.  I look at my husband sitting across from me, elbows on his knees, head resting in his hands, sharp breaths causing his back to sharply rise and fall....and I know.  He is so done.  He is so overwhelmed with all of this, with his job.  He is close to his breaking point.  My cries fill the quiet empty office and we sit there, cars and life whirling on by outside.  We hold each other and cry.  There is nothing wrong with me.  There is nothing wrong with Jason.  There is something wrong with the two of us together.  Had we never found our way to each other and married other people, we would not be having any of these problems.  It seems like a cruel joke. 

Where do we go from here?  We have an appt with Dr. Sher in December and we will discuss that then.  There is treatment.  We would need to do IVF and test the embryos.  Once we have several healthy embryos, they will transfer only one at a time to my uterus.  Usually with IVF they will transfer more than one but with this diagnosis they only transfer one for fear that if one is a DQ-alpha match and the other is not, my body will still attack them both and I will lose the non-matching one along with the matching one.  In order for the baby to survive there must be only one non DQ-alpha matching embryo.  There is no way to know that or test for that.  It is up to God and nature.  So we hope and pray that we get a non matching one.  If we don't, it will miscarry despite treatment.  But assuming we get a non matching embryo at some point, then I undergo treatment which is Intralipid therapy combined with a steroid Prednisone.  These help reduce my NKC activity.  He says we may have as good as an 80% chance of carrying the baby to term if we do treatment and have the right embryo.  But its a 50/50 chance we will get that right embryo that doesn't match.  Dr. Sher left us with a word of caution, "Do not get pregnant again.  You WILL miscarry, putting yourself at risk and making the problem worse.  Don't get pregnant."  We can never again afford to get pregnant on our own.  This treatment is essential for us to carry a healthy baby to term.  I know this is a long post and is probably overwhelming to all of you reading it as it is for us.  But there is really no short, easy way to explain this very complicated diagnosis.  If you are following this blog and have repeated, unexplained losses and have been tested for everything and tests are all normal, you may want to consider testing for these immune related problems. Tests are expensive and not covered by most insurance, but having these answers is huge for us and perhaps for others out there too.  Read Dr. Sher's article (link above).  He explains it far better than I do!

Thanksgiving is tomorrow.  One year ago I was 15 weeks pregnant as I ate my turkey and stuffing.  I remember laying on the bed in our hotel room (we were out of town for Thanksgiving last year visiting family) using my fetal doppler to check my baby's heart beat.  I found it right away.  It was loud and strong, like galloping horses.  Riley laid her head on my tummy.  My mother in law came in to hear the baby's heart beat.  One week later my baby was dead.  I can't believe it has already been a year since my life took a nose dive off Mt. Everest.  This has been and remains to be the hardest year of my life.  We are supposed to be thankful in all things.  Honestly, I'm not.  I am not thankful for any of this.  But I know despite all this, I do have so much to be thankful for.  Number one, Riley.  Outside of this problem, health.  A home I love, a job Jason is excelling at, a husband I love (we must be soul mates...we are after all SO ALIKE!) and answers, finally answers.  I didn't want to celebrate Thanksgiving this year.  I don't have the energy or the spirit for it.  I told Jason I just wanted to go out to dinner somewhere and pretend this day wasn't happening.  But instead, I bought a turkey today and I will cook all day tomorrow and I will host the people I love and I will get through it.  I have been reading to Riley about being thankful and eating turkey for three weeks and that's exactly what we will do.  I do it for her, I do it for the people I love, I do it for all six of them.  I do it because I am thankful and life must go on.

I love you always and forever and no matter what.

For Better or for Worse

For better or for worse.  This is the promise we make to each other, to ourselves and most importantly to God on the day we marry.  Jason and I made this promise 5 years ago and just celebrated the anniversary of that day.  But what happens when worse, so much worse, comes before the better.  And you are left wondering if the better is ever coming at all.

Two days ago we finally, FINALLY got what may be the first answers, clues as to what is happening with us.  We have been tested and tested and tested again.  Everything is always normal.  Until Wednesday this week when my doctor called with the results from our most recent tests, the ones where they had to take 10 vials of blood from my arm and I nearly passed out...yeah those...well it turns out it may have been worth all the pain.  Dr. G. told me this, "It looks like you and Jason have a larger than average number of similar chromosomes and you have an increased number of Natural Killer Cells".  So what does that mean?  Kinda what it sounds like,  Jason and I are just a little too similar and when it comes to baby making, different is good.  So when our egg and sperm meet up it doesn't recognize that part of the baby is foreign and therefore it does not send off the protective antibody that is necessary to keep my body from attacking the baby.  And then on top of that I have more Natural Killer Cells (NKC) than average.  We all have NKC.  That is what fights off infections in our bodies.  But I have more than average and they attack the baby.  So I have been sitting with the knowledge that my miscarriages were not just a failure to nurture my baby, but in fact are due to my body seeking out my own child and attacking it.  That's going to take awhile to work through.  And of course the awareness that Jason and I are somehow incompatible with each other for making babies and we are "too similar"??!!  A devastating realization, definitely the worse of  "for better or for worse".

So the problem is really one more of the immune system than the reproductive.  Dr. G. said he knows very little in this area of Reproductive Immunology and he referred me to a doctor who specializes in this.  Dr. Sher and he is out of Las Vegas.  No doctors in Kansas City specialize in this as it is pretty new science.  But as luck (or perhaps divine intervention) would have it, Dr. Sher has an office in St. Louis and he just so happens to be visiting it in December.  On-Top-of-It/ Desperate me already has a phone consult scheduled for next week and an appt for December on the books.  Hope.  It's what makes all the difference and we have been given a tiny shred of it to cling to.

I'm making a playroom for Riley, primarily because I want all her toys off my living room floor.  It is a nature/ owl themed playroom and it is all pink and green.  As I buy new things for it and decorate it the thought creeps in that maybe I shouldn't make it quite so girlie...what if a little boy plays in there one day?  And what if I put all this effort into a playroom that just has be turned into a nursery soon?  And then just as quickly another thought comes.  The thought that another baby seems so far from the realm of possibility right now and this one baby girl is it.  So go all out, go all girlie, jump in head first, have fun with it and don't look back.  For my own sanity I have to simultaneously live my life with one part that assumes we will not have any more children and another part that is pursuing that dream with all that I have, not quitting until we have tried everything.  It's a difficult balancing act.  But maybe, just maybe, the better is coming. Maybe, armed with these tests results and this knowledge, we are on the road to better.  Maybe a day is soon coming when all of this is finally over and behind us and we have another little baby and we are finally finished (I always wanted three but I can now say with certainty we will be DONE after/ if two).  The better side of things is here.  We are happy.  We are complete.  And I have to balance that hope and idea of better with the thought that better is on it's way whether we have another baby or not.  At some point, no matter what the outcome, this will all be behind us and it will be over and things will be better.  I know I have to find a way to better whether we have another child or not, but right now, after all this pain and loss, after the worse, I have been given new information that lets me hope that better will come with a little cuddly bundle of joy.

I love you always and forever and no matter what.

Hoping for Answers

I had a dream last night.  I was on an airplane and I was flying across the ocean to Hawaii.  There was a problem with the plane and there was no place to land.  The plane spirals down and I am completely helpless.  No control over my fate at all.  This is a dream I have often.  I have been afraid of flying for as long as I can remember.  But the scary plane crash dreams have become worse since losing the baby in December.  And the dream was no doubt triggered by a conversation we had at dinner last night about a vacation we might be taking in a few years.  Yes, a few years away and the mere mention of flying across the Pacific starts the bad dreams already.  But I think these dreams have been worse because of the loss of the babies, another situation in which I feel completely helpless, no control over my fate at all.  Losing these babies might as well be a plane crash in my mind.

We have no idea how to proceed from here.  We finally decided to have some less mainstream testing done to look for a cause for our losses.  It's controversial and you could put 50 doctors in a room and no two would probably completely agree on this. But the theory goes like this...a woman gets pregnant.  Half of the baby is foreign (the part that comes from the father) and her body should attack anything foreign, but the part of the baby that comes from the mother sends off a protective signal to her body and immune system telling it not to attack the foreign matter (the baby).  Sometimes two people get together whose DNA is a little too similar (Weird right!!  I had to ask Dr. G. if this meant Jason and I were related somehow...he said no...thank God!!) and the part of the baby that comes from the mom doesn't recognize that part of the baby is foreign because the DNA is so similar.  Therefore no protective signal is sent out.  The mother's immune system picks up that there is something foreign in her body and attacks it because there are no protective signals being sent out and the mother will miscarry.  It's confusing.  It's weird.  If that is the problem, why was it not an issue with Riley?  Why do some pregnancies progress for weeks, even into the second trimester, and others barely make it past the positive pregnancy test?  No one knows and that is why according to Dr. G. it is something we can check for but he says the science on it isn't that great.  The treatment if we do test positive is Intralipid therapy and something called IVIG...blood transfusions to suppress my immune system and therefore keep my body from attacking the baby.  We feel we have no options left so we did the testing for this.  Of course, nothing is ever easy.  They needed three vials of blood from Jason, which they easily got in five minutes.  They needed 10 vials from me...six needle sticks, a puddle of my own blood on the floor, dizziness, nauseousness, freezing cold with chills and and hour and half later they finally got it all out of me.  We are awaiting the results now.  These test results are another piece of the puzzle.  If it comes back negative, we know that's not the problem and it helps us decide how to move forward.  If it comes back positive we can decide if we want to do the treatment and again it helps us decide how to proceed. Hoping for results in a week or two.

So in the midst of all this and with my sister's wedding next weekend my house is a disaster.  I decided to clean and organize our office/ work out/ catch all room today.  I came across a stack of things I kept from when Riley was a baby.  One of them was a chart I was sent home with from the hospital when I had her.  Riley was a tiny baby and she lost a lot of weight right after she was born and initially had trouble gaining it back so I was given strict instructions to keep track of how often she nursed, for how long and how often she urinated.  So there it was...April 19, 2010 at 1:45 pm she nursed 25 minutes and had a wet diaper.  4:00 pm she nursed 21 minutes and had a wet diaper.  6:15 pm she nursed 28 minutes and had a wet diaper, etc., etc...  My mind is flooded with memories of her first weeks home with us.  Nursing her religiously for weeks to avoid formula and help her gain weight (which she finally did...one of my greatest accomplishments as a mother :) ) watching her sleep, being so excited when she would open her eyes for a brief few seconds, taking hundreds of pictures a day, afraid to fall asleep at night because no one would be "watching" her and what if something happened and we didn't know it because we were asleep??  Jason finally moved her bassinet right beside our bed and brought a night light in our room so that she slept within inches of me and I could open my eyes in the middle of the night and see her right away and know she was OK, not that it really mattered since she woke up to eat every two hours all night long.  All these memories...will we ever have a brand new little one in our home again?  Time will tell.

In the mean time, I try not to miss all the amazing moments with the child I do have because I am hoping so hard for one that may never come.  Like today, we went to the mall and Riley picked out a fluffy, girlie, Minnie Mouse night gown and she had to put it on as soon as we got to the car.  The whole ride home she kept looking at it on herself, playing with the fabric, smiling ear to ear and saying "new night gown!" and "Mommy, I take a nap!" because I told her it was to be worn during sleep time.  For a child that looks nothing like me with her blond hair and blue eyes, she sure acts just like me...a girlie girl through and through.  And to think, because of the sadness and all that has been lost, I almost missed it.  Thank God I didn't.  And in these moments when I have no control and I am spiraling down to sure destruction, like a plane that suddenly levels out, all is OK and she saves me. 

I love you always and forever and no matter what.