The Physician Menace

I am so fed up with doctors I could just cry.  I fact I have.

Things have been very tense around here lately and the pregnancy is just part of it.  I'm at eighteen weeks now and have been feeling the baby move for a couple of weeks now.  Hopefully this is a sign that all is well with baby and that it will continue this way.

I had an ultrasound last Tuesday at 17 weeks 1 day.  I had to beg and plead with the perinatalogy clinic to get this appointment because they were quite insistent that I wait until 20 weeks for another appointment.  I was quite insistent that this would not do AT ALL.  I was able to talk with Dr. Collins and he thought it was absurd that my clinic was being difficult about this.  This is the same clinic I saw when pregnant with Anastasia.  At that time they did weekly doppler scans of the cord starting at 16 weeks. They were only too pleased to take my money then and I just can't understand why they are taking this radically different approach now.   

So I went to the appointment and had the ultrasound, which showed baby's growth is on track.  They also did dopplers of the cord, but refused to do any other scanning of the cord, such as trying to look at it in 3D or trying to measure the coiling.  Q and I talked to the doctor and she said the dopplers looked OK to her.  She seemed generally dismissive of our concern about the cord despite our explanations about this being a recurrent problem for us.  We also explained that we want Dr. Collins to look at the pictures since he is an expert in this issue.  She then gave us a disk with our pictures on it and we went on our merry way.

When I put the disk in my computer at home, however, I found that we had only 4 pictures - one of baby's profile and 3 of her legs.  This does me no good at all.  I called the clinic when they opened the next day (Wednesday) and was told there's nothing anyone could do until at least Friday when the particular satellite clinic that saw me Tuesday would be open again and could try to get the cord pictures off the ultrasound machine they used.  So I waited until Friday and after several phone calls, was told I could come pick up a disk of the cord photos at the clinic after 2:00.

And did our little story finally end happily?  Of course not.  At 1:00 the clinic called again to say don't bother coming in because actually they can't give me the pictures after all.  Suddenly it's against their policy to let patients have any images except a few "just for fun".  I assume then that if recurrent leg problems were an issue with my children, I would not have been given the three "fun" leg pictures I now have and may instead have gotten some "fun" cord pictures.  I made clear that this was entirely unacceptable.  When I made the appointment I stated that the purpose was to get pictures of the cord to send to Dr. Collins.  I also discussed this with the actual doctor when the ultrasound was done.  She didn't say one word to indicate this was a problem, but now she is the one who "made the call" not to let us have the images.

Next, I got to speak with the actual doctor.  I do not not take kindly to know-it-all, condescending, patronizing doctors and was very direct while still remaining civil.  Where we stand now is that I'm supposed to be able to get the images from the clinic on Tuesday (tomorrow) when they are open again.  Doing it that day was apparently just too much for the overworked staff.  You know how hard it is to transfer .jpg files onto a disk.  

If that doesn't happen, I am making an appointment at my regular OB office to get pics of the cord.  They don't have the expertise to interpret such pictures, but they've said they do have the capability of at least giving them to me.  I am supposed to go to Tennessee for a family reunion in two weeks.  I will be twenty weeks - the same time frame when both Jeremiah and Miles died.  My stress level is 

at Severe already and I want to know what Dr. Collins thinks about these images before I hit the road.

And on top of all this, Q has a job offer in Texas to consider.  This is a VERY dramatic decision, especially given the timing.  

Also, I will run out of Lovenox tomorrow despite my best efforts over the past two weeks to acquire a new supply from a mail-order pharmacy as required by my insurance.  Just found out I will not be getting it in time from them and now have to fight with my insurance to let me get it at a retail pharmacy locally, if  I can find one that actually has it in stock.  

After that, I will spend the rest of the day taking kids to the mall and the beach because it's summer break now.  We're going to have fun, dammit!  One of the most exhausting things about the current situation is trying to act as if everything is perfectly normal.  

Mother Mother

Good news again!  Cord and blood flow still looking great for Mei-mei at 26 weeks!  Our whole family is just SO excited about Mei-mei!  Each Thursday when I pick my kids up from school they ask how Mei-mei's appointment went.  And they always remember to pray that she will grow safe and strong.

Quite some time ago, I had talked to Dr. Collins in Louisiana about his home monitoring program for moms who have lost babies to cord problems.  He'd said the earliest I could do that is 26 weeks.  I have looked into it, but I think I will pass.  "WHY?!" you may ask. Well, Dr. Collins and the doctors at the perinatology clinic all agree that things look perfectly fine.  Also doing this would require a solo trip to Louisiana and quite a bit of money.  I feel that the care I'm getting now is adequate for the situation.  Thankfully, this pregnancy is high risk only because of my past history and not because of any current concerns.

With each passing week, I get a little less anxious and the idea of bringing home a live baby seems a little more real.  In fact, I think we may go shopping for a nice recliner or rocker.  Our old uncomfortable rocking chair just will not do for what I'm hoping will be many happy hours spent holding Mei-mei.

Also this week, like it or not, is Mother's Day.  It can be rough for a lot of people - people who are infertile, people who have lost children, people who have lost their mothers, mothers who feel like they can't live up to all the idealism, etc. For me, this Mother's Day is both happy (for obvious reasons!) and sad since I'm still not on speaking terms with my mother.  I have a feeling there is going to be some ugly drama once Mei-mei shows up and creates a reason for a family gathering.  On the upside, I'm learning more about what NOT to do as a mother.  Hopefully I won't screw things up so badly that my kids won't speak to me when they're older!

  

Even though I don't feel like it and also don't much care for the sickening sweetness and commercialism of Mother's Day, I shall try to fulfill my societal obligations and send a little something to my mom:

Mother mother how's the family?

I'm just calling to say hello.
How's the weather? how's my father?
Am I lonely? heavens no.
Mother mother are ya listening? just a phone call to ease your mind.
Life is perfect, never better, distance making the heart grow fond.

(Tracy Bonham)

Concealed Carry

Another week, another ultrasound.  This time it was quick. We got lots of cord pics and even remembered to get one of the baby this time!  According to the ultrasound tech, the perinatologist, and Dr. Collins, the cord is looking okay thus far.  This does not make my anxiety level go down (I have to make it through March for that to happen!) but it does prevent it from going further up, which is really the best I can hope for right now.

So far I've been quite happy with the clinic I go to.  The nurses are really nice, the sonographer has actually gone to Dr. Collin's website to learn more about cord issues, and the doctors take my concerns seriously, so I haven't had to visit Doctor Dammit.

Now at 17 weeks it's getting harder to hide my bump.  And I hate hiding it after fighting so hard to get it, but it seems necessary for the kids' sake.  I'm just hoping and praying to make it to April and beyond.  I looked at a few websites for ideas on how to pull off a concealed carry.  Several suggest showing a little leg or some cleavage to draw attention away from the thick waistline.  Conceal being knocked up by drawing attention to the knockers?  I don't think so.  Sure they're real and they're spectacular, but that's not my style.  Here are a few of my strategies:

Coats, jackets, and bulky sweaters - good thing I live in a cold place and it's winter!

Button-up shirts, preferably with vertical patterns:

Props - For example, at church I use a songbook or bag to cover my belly from view:

For reference, here's what I'm hiding:

A few months back I put a "Labels" section in my sidebar, but hadn't looked at it in awhile.  Now "pregnancy" has moved from the bottom of the list up to the second row!  Keep growing "pregnancy" - come out on top of infertility and IVF!!  I regret that "amusing pictures" and "attempts at humor" haven't been appearing much lately.  All this stress has made me completely lose my sense of humor. A painful loss.  Hopefully it'll come back soon.  Until then, thanks for sticking with me through a very tough time!

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!

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!

Thrombophilia: Looking for clues in this and other cases

The frustrating problem with the two case studies I have is that there is so little evidence to either support or refute the thrombophilia hypothesis in these particular cases.

In the first case the woman lost 3 pregnancies in a row at 19, 16, and 15 weeks due to umbilical cord hypercoiling, stricture, and torsion. There is absolutely no information regarding thrombophilia testing or any other lab tests that were almost certainly performed after these losses. There's also no information on whether she tried any treatment such as heparin in any of the pregnancies. The report shows there was a 1.3 cm clot in the first placenta, but no clots found in the other two.

In the second case the woman lost 3 out of 4 pregnancies between 28 and 30 weeks all due to umbilical cord stricture. One of the 4 pregnancies resulted in a live birth at 25 weeks, presumably by C-section and presumably because of similar problems but it doesn't say. Also, like the first case there is no information on any lab test that were done or on whether any treatment such as heparin was tried in the later pregnancies. There is no mention of clotting in the placentas.

Thanks to Dr. Collins at the Pregnancy Institute in Louisiana, I was able to find out about a case where the woman lost 4 out of 9 pregnancies due to umbilical cord torsion at 19-20 weeks. Four of her pregnancies resulted in live births and the other was an early miscarriage. This amazing woman was kind enough to talk to me on the phone for an hour and a half telling me about her experiences. After having 2 normal pregnancies, she lost 2 babies at 19-20 weeks due to cord torsion. Then on the next pregnancy she tried using heparin (without strong evidence of clotting or thrombophilia on the first two losses). This pregnancy was also a loss. So after 3 late losses in a row, she tried again using heparin and got a live baby. The next pregnancy was another late loss despite using heparin, but the last pregnancy (also using heparin) resulted in another live birth.

This gives me hope that having a live baby is still possible even after repeated cord-related losses. However, it doesn't give much hope that heparin is the answer, since she experienced a loss rate of 50% (2 out of 4 pregnancies) without heparin, and a 50% loss rate (2 out of 4 pregnancies) with heparin.

In my own case, of course, I have more complete information on lab results, family and personal medical history, etc. as follows:

• No solid evidence of thrombophilia from any of the many lab test that were done. More specific results on a couple of tests listed below.
  

All labs on mom normal, except moderate positive result on anticardiolipin antibody IgG, which we're told is not significant; after six weeks this was retested and the level was "inconclusive"

Additional testing on me showed I am heterozygous for MTHFT mutation C677T, which we're told is "not clinically significant

• No family history of thrombophilia or clot related problems (heart attack, stroke, deep vein thrombosis, pulmonary embolism)
• No personal history of clots, despite 2 full term pregnancies and two "half" pregnancies (pregnancy, especially the postpartum period, is associated with higher risk of clots), 2 surgeries (also causes a higher risk of clots), and several trans-oceanic flights (also associated with higher clotting risk). About a week after laparoscopic surgery last year, I had the opposite of excessive clotting and instead bled too much, resulting in this lovely hematoma.
• The pathology report from my first loss does mention that fragments of blood clot were recieved with the placenta and cord, however I think this clot was probably formed at the time of delivery because the placenta did not come out in one piece. No mention of any clots found in either of the placentas in my case.
• Although all lab tests for thrombophilia came back negative, I still wonder if my circulation is not what it should be, whether because of some clotting issue or something else. I do have some symptoms associated with clotting disorders, including fetal loss (obviously), IUGR (my son was 5 lb. 0 oz. at term), and a possible partial placental abruption during labor with my second child, but no actual evidence of clots.
  

I have no idea what any of this means. Anything? Nothing? I think the case for thrombophilia as the cause of umbilical cord pathology is weak at best, however I would not bet my child's life on it. If I have the chance at another pregnancy I would try the daily heparin shots - gladly.