Monday, February 28, 2011

Dopplers are a Girl's Best Friend

It's been fun being able to feel Mei-mei move.  It gives me reassurance that she's still alive, but it also makes me panic when I don't feel her for awhile.  This morning I was nervous but couldn't very well break out the doppler with my 5-year-old daughter clinging to me every second and demanding to be entertained.  So I endured the torture of waiting until 1:00 after I dropped her at kindergarten.  Heartbeat in the 160's.  I can function again - for now.  Thursday's appointment feels a long way off.

Q and I aren't the only ones in our family living in horrible suspense every single day.  Last night I talked to my sister-in-law, who is pregnant for the 11th time and has just one child to show for it.  I want so badly for their baby to make it.  After so much heartbreak, both of our little rainbow babies are needed, not just wanted.

I got some good news last week when I finally got my taxes done.  If I'd known the outcome would be so good this year I wouldn't have procrastinated so long.  We're getting nearly $7,000 back!!  This happy surprise is largely thanks to a deduction for medical expenses that exceed 7.5% of income.  Our medical expenses for 2010 were a shocking 43% of income!

I wish I'd kept better records of all the costs incurred over the 4+ years we've been dealing with loss and infertility.  Add up all the costs for the pregnancies, two hospital deliveries, two burials, lots of very expensive tests, a surgery that went badly, seven IUIs, two IVFs, and now a high-risk pregnancy and it's easily into six figures.  I estimate that we've spent about $30,000 out of pocket.  Thankfully we had great insurance that paid most of the costs other than the IVFs.  Yes, past tense on the great insurance.  Now we have United Hell Care  : (

Thursday, February 24, 2011

It's a . . .

. . . normal-looking cord according to the ultrasound tech and my doctor today.  At least for now, all signs seem to indicate that placenta and cord are doing their jobs.  This is by no means a guarantee that things will continue to look good, but it looks good today and we're thankful for that.  We are still VERY anxious going into this next month.  March is the fifth month of this pregnancy and we'll hopefully be passing the 18 week and 21 week marks when we lost Miles and Jeremiah.  I'm keeping my commitments in March to a bare minimum - there's just no way around the fact that it's going to be a tough month.

Today we also found out that baby is a GIRL!  At 16w0d she is measuring 16w2d.  All body parts are looking good and she was moving around a lot.  In fact, this past week I've been able to feel her move for the first time :)   Q and I are a long way off from daring to talk names, but since we now know it's a girl I figured she needs a better name here than just "the baby".   So for now I'll call her Mei-mei, which means "little sister" in Chinese and is pronounced like the month May.  We are still hoping to keep the news from the kids until we (hopefully!) make it safely through March, but that may prove tricky as I'm starting to look pretty "fat".

I will continue to have detailed ultrasounds weekly to monitor Mei-mei's growth and to look closely at the cord for any sign of trouble.  We were able to get pictures of the cord, but unfortunately they are black and white.  At the clinic the blood flow was shown in color with the vein blue and arteries red.  Here the vein shows as the darker color:

Coiling in a 2.5 cm section of the cord

All the cord pics are being sent to Dr. Collins and we'll see what he thinks about them.  For those who are as obsessive as I am about umbilical cords, more pictures from today can be seen here.  This is quite possibly the only blog out there where you'll be seeing tons of pictures of the cord and not the baby!

Thursday, February 17, 2011

Dr. Collins

It's been a rough week at my house thanks to a nasty stomach bug my daughter brought home from kindergarten.  Everyone had a turn being sick.  Today I'm doing better and was able to go to my appointment, but I'm still completely exhausted.

The baby, now 15 weeks, was more active during our peek this week compared with last week, and that was reassuring.  It waved to us again - I always hope it's waving hello and not goodbye!  Next week is the big detailed ultrasound which I'm hoping will show nothing out of the ordinary.  Of course, even if everything looks fine I will STILL be a nervous wreck.  But if everything doesn't look perfectly fine?  Well . . . I just try not to think about how ugly that would be.

I often wonder how Jeremiah's and Miles' cords would have looked on ultrasound had we been able to look before they died.  My guess is that we may have seen Jeremiah's hypercoiling, but probably not Miles' stricture.  I had an ultrasound scheduled to look at Miles' cord, but he died a week before that appointment.  My first son David's cord was looked at on ultrasound, but no particular issues were found. It was obvious at birth, though, that he had a very lean cord.  Lean cords are associated with IUGR (intrauterine growth restriction) and SGA (small for gestational age), meconium stained amniotic fluid at delivery, and APGAR scores less than 7.  Luckily, my David lived despite having all of these problems and ending up in the NICU, but you can see why I will still be worried even if next week's ultrasound looks OK.

Newborn David's lean cord

I have spoken to Dr. Collins in Louisiana about how this pregnancy should be managed.  He suggests detailed ultrasounds of the cord every week from 16-20 weeks and my clinic seems willing to do so.  The trouble is that even if problems are found, there is nothing that can be done about it before viability other than for me to take it easy and hope for the best.  I can do home monitoring daily through Dr. Collin's clinic starting at 26 weeks - not earlier because the home monitor can't reliably pick up the heartbeat before then.  Right now, it's hard to imagine making it to 26 weeks, or even to 23 which is when my clinic considers a baby viable.  Maybe after next week's appointment I'll be able to have a more hopeful outlook!

Thursday, February 10, 2011

The Reign of Terror

Fourteen weeks along today and baby is still alive.  Today's ultrasound was another quick one done with the little bedside machine, which produces VERY poor quality images.  Basically all we could see for sure was that baby has a head, a body, a beating heart, and some limbs.  The baby did move it's head during the ultrasound, but certainly was not kicking around like it was the last few times.  It's hard not to worry about this, even though I tell myself that we only get to look for maybe a minute each week and such variations in activity level are perfectly normal and to be expected. 

Two more weeks until the very detailed ultrasound.  Will we make it that far?  It's been nice to at least get a little peek at baby each week and know that the heart is still beating, but on these ultrasounds there's no way to see any details of smaller structures, such as THE CORD, which as you may imagine I am absolutely obsessed about.  We could barely make out the cord for a couple of seconds today (see below) and although the picture is very bad, I did not like what I saw of the cord located between baby's face and leg because to me it looked like this: / / / / / /   Six parallel sections bunched up next to each other.  Is this normal?  Is there hypercoiling again?  Am I just trying too desperately to see some clue about my baby's fate?

Told you the image was bad.  Of course it's much worse here than it was on the screen at the clinic.  These are both the same picture, one left as is so you can get a clearer picture (ha!) and one with parts labeled by me.

We still haven't told anyone but family that I'm even pregnant.  Mostly, this is because we don't want the kids to know yet and there's no way to keep it from them if other people around them know.  My daughter did tell me that I look chubby.  My son told me he can't train me to be a Jedi because I'm too fat.  I don't know how much longer we can keep it secret.  I just don't want them getting all excited about that prospect of a baby (and they WILL be excited!!) only to have the same thing happen again.

The other reason for not announcing the pregnancy is that I don't want to hear any gushing from people who have no idea what hell we've been through - "How wonderful that you're "expecting"!" and "Nothing bad could possibly happen now that the first trimester is past!".  It's hard enough to keep my own "expectations" in check.  I'm not ready to deal with the expectations of others.  For me so far the odds have been 50/50.  Two kids lived.  Two died because of malformed umbilical cords.  I had really hoped the odds would be more in our favor this time around with the Lovenox and high-risk care, but I am now convinced it is still 50/50 no matter what we do.  Actually the odds at this point are much nearer either 0 or 100 percent as the baby's fate is probably already decided and there's nothing anyone can do about it.  The cord is formed - will it give life or take it away?  Perhaps it was all decided on November 18 when this child was conceived.  We just have to wait to find out whether there is any hope for our baby, and the waiting is pure torture.

I've recently been in contact with two women, Cindy and Wendy, who have lost babies at the same time and in the same manner as I have.  Perhaps they will share their experiences in more detail later, but for now here are the basic facts:  The odds for all of us have been 50/50, and that's not counting early miscarriages.  Cindy had four babies live and four die of cord problems.  Just like me, she was told to use heparin for each pregnancy after the second loss, but the odds remained the same - 50/50.  Wendy had two babies live and two die of cord problems, with the second loss happening just weeks ago and only eight months after the first loss.  All three of us first had two successful pregnancies followed by multiple losses.  Together we have eight living children and eight dead children, four girls and four boys who all died in the fifth month of pregnancy.  

All I can think after comparing our stories is that it must be genetic after all.  As I'd postulated in an earlier post, perhaps most cases are caused by a random genetic mutation and therefore very unlikely to recur.  But suppose a baby survives despite having a usually deadly genetic mutation that causes malformed cords?  That baby would grow up and have kids - then his random mutation gets passed on to his offspring as an inherited mutation.  This is what happens in genetic disorders with an autosomal dominant inheritance pattern.  50/50 odds.  

And so the reign of terror continues . . . two more weeks until we may get a clue which way it will go this time.  Will we finally get to dust off the cradle?  Of will it be another grave?  And how could I possibly go on if it is the latter?

Thursday, February 3, 2011

Happy Chinese New Year

Happy Chinese New Year!  It is the year of the rabbit.  Although I certainly don't put any stock in the Chinese zodiac, it is interesting to note that both Q and I were born in the year of the rabbit and our hoped-for rainbow baby is a rabbit also.  Some traits of rabbits:

Wise and cautious - Rabbits consider all options and take their sweet time before making a move. Yet, they are also the ones most likely to win any intricate game of strategy!

Lucky - No one is more surprised than Rabbits when they win a poker hand or hit the jackpot at the races, although at times good luck just seems to come their way unbidden.

Cautious, yes.  We've had to make so many difficult choices over these last few years and we've agonized over each one.  But did we choose wisely?  And will we be lucky this time? Well, I know this rabbit will certainly be surprised if good luck holds and we hit the jackpot with a live baby later this year.

Today's appointment was a quickie.  Just a peek at baby, who was jumping around with a heart rate in the 160's.  I'll have short appointments like this for the next two weeks, and then on the 24th is a detailed ultrasound where we will see if the cord looks normal (pleeeease!) or malformed again, which would mean almost certain doom.

The anxiety level is rising fast going into the second trimester.  There will be much more about this later, I assure you.  It's hard not to give in to thoughts that we may be just weeks away from reliving our worst nightmare.  

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