Thursday, August 27, 2015

A Lactation Consultation

Just as I hope that my blog may in some way help others, I have been greatly helped by other peoples blogs.  One thing that I found out through another intended mother's blog is that just because you did not give birth to your child, you may still be able to breastfeed him/her.

What did you say?  What sorcery is this?

Not exactly sorcery. It turns out that any woman (with breasts) may be able to breastfeed regardless of whether or not she has given birth, or even has a uterus or ovaries.  Lactation is actually governed by pituitary hormones, not ovarian hormones.  It should be noted that while nearly every woman can do it, it is not necessarily easy or quick, and is generally more successful if you have previously nursed or been pregnant.

When we started in this process, I had been asked by a few people if I intended to breastfeed.  I thought that was a funny question mainly because I had not really considered it.  I guess that I knew that I actually COULD.  I mean, even men can lactate.  But I hadn't really thought that I WOULD.

I think that I just figured that we would bottle feed.  Most adoptive mothers bottle feed.  Millions of children have been bottle fed over the years and virtually all of them have turned out just fine.

I think that I also feared trying to induce lactation since I knew that it was tricky at best.  I thought it would be just another thing that could (and probably would) go wrong.

But as Maybe Baby started to hang in there week after week, and the tests and ultrasounds started to come back OK, some of my fears started to subside and I started thinking that Maybe Baby may actually become a real baby.  Whoa!  This is a new concept.

As I started thinking in terms of an actual vs. theoretical baby, I started thinking about what we would do when the baby comes.  I started reading other IMs blogs about the importance of infant bonding and how it is even more important in an adoption or surrogacy.  Of how important skin to skin contact is, and breastfeeding.  Wait.....breastfeeding.

Breastfeeding is not just about getting nutrients to your baby.  It is also very much about bonding.  I read that it is not important if you make enough milk yourself or if you have to supplement, it is about the time together and the skin to skin contact.  I read blog after blog and story after story of how amazing it was to be able to connect that way with their baby, of how it in some ways made up for the loss of not being able to birth their own child, of how it made them feel more like a mother, and of how it gave them a way to get ready for their babies arrival in the absence of being pregnant.  I read that it was not easy, but that the juice was worth the squeeze.

I decided that it was worth giving it the old college try.

As recommended by everything that I've read, I decided to consult with a professional - a lactation consultant.  I have done a decent amount of research on this, so I was able to jump right into recommendations and protocols with her during our visit.  Since I have a good amount of time before the birth, since it is (arguably) the most successful protocol for induced lactation, since Maybe Baby is essentially the product of a metric crap ton of hormones, medications and other supplements, and taking more hormones, medications and other supplements does not phase me in the least at this point, I am interested in using the Newman-Goldfarb Protocol for inducing lactation.

After talking through my health and pregnancy history and the protocols, my lactation consultant had some good news and some bad news.

The good news:  milk ducts grow rapidly primarily during the first trimester of pregnancy (that is why your boobs get enormous and terribly sore, and why that soreness gets better as you enter the second trimester).  I have been pregnant before, and my second pregnancy almost made it past the first trimester.  I was pregnant long enough for my boobs to get enormous and terribly sore - meaning that I probably went through some milk duct formation, meaning that I will probably be more successful in inducing lactation than someone who has never been pregnant.

The bad news: the magic ingredient in the Newman-Goldfarb protocol is a Domperidone - a drug that is given to relieve nausea and vomiting.  A drug whose major side effect is that it induces lactation because it increases decreases the body's release of dopamine which in turn increases prolactin, which in turn causes lactation.  It is probably used more often for its "off label" use than it is for its primary intent.  Domperidone is not FDA approved - meaning that it is nearly impossible and possibly illegal to get in the US.  There is a legal drug that can also increase lactation called  Metoclopramide, but it has some pretty nasty side effects (much more nasty than Domperidone) and can also be passed through breast milk - making it not really a suitable alternative.  Also, to add insult to serious injury, my insurance may not cover a breast pump since I will not have given birth.  I will need a hospital grade pump for this to work and those are NOT cheap.  Since those cost over $2,000 to buy new, I would need to looking into renting one, or buying a gently used/refurbished model.

I left feeling very defeated and like the visit may have just been a waste of time.

I am now trying to focus on the positives.  While my consultant had heard of using domperidone (and could not and did not recommend it) and the herbs that we discussed (fenugreek, blessed thistle and goat's rue), she had not heard about adding the birth control pill before.  This really intrigued her.  Taking the birth control pill nonstop for a minimum of two months (four or more is even better) essentially tricks the body into thinking that it is pregnant.  The estrogen and progesterone in the birth control pill mimic the levels produced in pregnancy and can help to build milk ducts and breast tissue.  Stopping the birth control pill and then pumping, should cause a rapid decrease in the serum progesterone level while causing an increase in the serum prolactin level. This process attempts to mimic what happens after a normal pregnancy and birth.

My consultant thought that this hormonal "push" may be the key to successfully inducing lactation.  When just beginning to pump, or pump with the addition of herbs, the process can and often does work, it just takes a long time.  She was very interested in pursuing this method and hoped that it could be successful for other patients.  In addition to the BCP, goat's rue is often recommended in the "building" phase as it tends to act like estrogen.  It can be effective taken on its own, but tends to be more effective when taken in conjunction with progesterone.

About 8 weeks before Maybe Baby's due date I should stop the BCP but keep taking the goat's rue and over the nest two weeks begin pumping working up to pumping 8 times per day and 20 minutes each session.  Once I start pumping, I should start taking fenugreek and blessed thistle (alfalfa, fennel, saw palmetto, and shatavari are also recommended, but not as highly as fenugreek and blessed thistle).  I should try to eat oatmeal for breakfast at least 3 times a week - many mothers on the protocols have noticed a significant increase in their milk supplies when they began to add oatmeal to their diets regularly.  I also need to drink at least 6 - 8 glasses of water a day if possible and keep my caffeine to a low level.

I say low level since stopping completely could mean harm to those around me and low levels have not been found to be harmful to babies via breast milk.

When I am ready to start pumping, I will visit my consultant again and she will show me how to use the pump and map out a pumping schedule for me to follow.

After pumping for a while, my milk supply should begin to arrive. It will begin with a few clear drops which become more frequent and more opaque and whiter in color.  These drops will turn into spray which will eventually turn into a steady stream of breast milk. It may take a few days, a week, or two, or more for the milk supply to come in. Everyone responds differently.

I know that this sounds like a huge commitment.  It is.

But, it is a way for me to get ready for Maybe Baby's coming, a way for me to feel like more of a "normal" mother, and most importantly, a very special way for us to enhance our bond.

And that, my friends, will be worth it.

Friday, August 21, 2015

Everyone Has Something (Carrier Screening Results)

We received the results of our genetic testing.  As suspected, we each have something......but luckily we both have different things.

Mark's results:

Positive: Carrier

Salla disease

Teri not found to be a carrier. Mark is a carrier. Risk of affected child: 1 in 2,000
The most common form of Salla disease causes a slow, progressive decline in motor and intellectual abilities, with symptoms beginning in the first year of life. There is no effective treatment available. Adults with the disease are profoundly intellectually disabled, but live normal lifespans. Another form of the disease is more severe, causing death in early childhood. Learn More

This is a pretty terrible and also very rare disease.  This is the first time our genetic counselor has even seem someone be a carrier. It is mostly found in northern Finland - there are only 30 documented cases outside of Finland.  (Mark must have some Finnish that he didn't know about?)

Luckily carriers are only that - they do not typically experience any symptoms.  Also lucky is the fact that I am not a carrier so our risk of passing to our children is very, very, very low.

My results:

Positive: Carrier At Risk for Symptoms

Pseudocholinesterase deficiency

Teri is a carrier. Mark not found to be a carrier. Risk of affected child: 1 in 640
Pseudocholinesterase deficiency causes sensitivity to particular forms of surgical anesthesia. After receiving these drugs, people may experience a longer than normal period of breathing paralysis, but medical teams are typically equipped to handle such an event. The condition does not cause any other symptoms. Learn More

This is more common than Salla Disease, but not exactly super common either.  It is more commonly found in Native Americans (possibly from me being 1/16th Mesquaki?) and the Persian Jewish community.

Luckily this isn't really that bad - basically it takes you longer than normal to fully come out from anesthesia - and Mark is not also a carrier.

Not so lucky is that carriers can also experience symptoms, although not as severely as those who have the condition.  It may have taken me a bit longer to come out from anesthesia but probably so little time that it never became a concern.

So good news.  So far things are going well and we now have a few less things to worry about.

Friday, August 14, 2015

The Many Faces of Maybe Baby

We arose early to get to the Perinatal Specialist's office by 7:30 am.  With the many doctor appointments that our GC has had lately an early appointment meant less of an issue with work.  Normally I would push for a little later appointment (I am not a morning person, at all) but we have also had a few appointments ourselves.  I have not yet announced at work and am running out of plausible reasons to have so many doctor appointments, so one early enough that I didn't even have to miss work was actually a blessing.

As a mentioned in an earlier post, I have agreed to postpone, and possibly even forego, invasive prenatal tests if our noninvasive prenatal screening does not indicate any potential issues.  Today's noninvasive prenatal screening was the nuchal translucency scan which is a detailed ultrasound that measures the nuchal fold thickness.  Increased thickness measurements are also associated with Downs Syndrome and some other chromosomal birth defects and also congenital heart defects.

The procedure for the NT scan is pretty much the same as for any other pregnancy ultrasound.  Our GC needed to have a fairly full bladder, have some cold goo rubbed on her belly, and endure some pressing on her fairly full bladder - not too bad.  The technician moved the screen so that we could all see and went to work.

Maybe Baby is a pretty active baby.  MB kept moving around making it a little hard for the technician to get the measurements and pictures that she wanted.  Our GC cannot yet feel MB's movements but is dreading the later stages of pregnancy if MB is going to be as active as we think MB may be....

Despite MBs in utero acrobatics, the technician was able to take a number of cross-sectional views and pictures.  She seemed very thorough.  She showed us that the top of MBs head and that you can see both halves of the brain developing.  She pointed out MBs heart and stomach.  She said that the placenta was at the top of the uterus (our GC thought to ask about that - good call).  We got to see MB moving both arms and both legs.  Right now MB measures 2 inches from top of  head to rump and has a heartrate of 167 bpm.  The technician can't give us the official OK, but so far things seem to look good.

We also got to take home a cute view of what look to be a nice long pair of legs.....

Wednesday, August 12, 2015

Thursday, August 6, 2015

It's All About the Genes

Today was our visit to the Genetic Counselor.  Please refer to the "Family History and Genetics" page for more information on who Genetic Counselors are and what they do.

Due to our unique situation there were three of us at this appointment - me, Mark and our GC.  Really only Mark and I needed to be there - it is our history and our genes that are in question.  But, our GC needed to get the referral and make the appointment since it is her pregnancy.  In the end, it good that she was there since we discussed screening and testing options and since she is impacted by our decisions regarding these it is good for her to also understand the risks.

I would never ask our GC to do something that I would not myself do.

We went through our family history and what our risks are.  Unfortunately, chromosomal abnormalities increase with age.  By the age of 40 the risk of a child being born with some sort of genetic abnormality is as high as 1/38.

Our family history can help predict which abnormalities we may carry and pass on.  For example, since Mark and I are both of Northern European descent, we are more likely to be carriers of Cystic Fibrosis.

Carrier screening can be done to tell for sure if you are a carrier of a specific disorder.  Most disorders are recessive meaning that both you and your partner both need to be carriers for a particular disease to present itself.  And even if you both are carriers, you may not pass on that disorder to your child.

Mark and I had not had carrier screening done.  We had asked our RE about it before our first IVF and he did not recommend it.  His logic was that everyone is a carrier for something.  Everyone.  And sometimes people make decisions about even having children based on these tests.  Again, being a carrier does not automatically mean that you will pass a disorder to your child.

Luckily we are early enough into the pregnancy that carrier screening can still make a difference on our prenatal testing choices, so we headed to the lab for a blood test right after our consultation.

Unfortunately, we did not have PGD or PGS testing (see Embryo Testing in IVF page for more info)  done on our embryos, so we do not know definitively that Maybe Baby is chromosomally normal.  We did not do PGD testing since we had not done carrier testing and did not know which specific genetic disorders to test for.  We also did not do PGD testing and additionally PGS testing since this needs to be done on day 5 blastocysts and we were not sure that we would end up with any day 5 blastocysts to test.  Maybe Baby was a day 5 morula and previously frozen, so testing was not recommended.

Our counselor went through our screening and diagnostic testing options.

As I have mentioned before, I like the idea of diagnostic testing.  It is definitive while screening is not.  It also carries risks.

I have been talked off the CVS ledge and am now leaning towards amniocentesis.  

Amniocentesis is a prenatal test that allows your healthcare practitioner to gather information about your baby's health from a sample of your amniotic fluid - the fluid that surrounds your baby in the uterus.  Amniocentesis produces a karyotype – a picture of your baby's chromosomes – so that your caregiver can see for sure if there are problems.  It is more than a 99% accurate test.
Amniocentesis carries various risks, including:
  • Miscarriage. Second-trimester amniocentesis carries a slight risk of miscarriage — between 1 in 300 and 1 in 500. Research suggests that the risk of miscarriage is higher for amniocentesis done before 15 weeks of pregnancy.  Our counselor indicated that the risk goes down significantly for practitioners that perform this test regularly and that this clinics risk rates were as low as 1 in 1500.
  • Needle injury. During amniocentesis the baby might move an arm or leg into the path of the needle. Serious needle injuries are rare.
  • Leaking amniotic fluid. Rarely, amniotic fluid leaks through the vagina after amniocentesis. If the leak seals, the pregnancy is likely to proceed normally. It's possible, however, for chronic leakage to lead to orthopedic problems for the baby.
  • Rh sensitization. Rarely, amniocentesis might cause the baby's blood cells to enter the mother's bloodstream. If you have Rh negative blood, you'll be given a drug called Rh immunoglobulin after amniocentesis to prevent you from producing antibodies against your baby's blood cells.
  • Infection. Rarely, amniocentesis might trigger a uterine infection.
  • Infection transmission. If you have an infection — such as hepatitis C, toxoplasmosis or human immunodeficiency virus — the infection might be transferred to your baby during amniocentesis.
Since our GC does not have any diseases to transmit (per testing), is RH positive to the RH factor risk is not there, infection can be easily treated with antibiotics, needle injury is rare as is leaking amniotic fluid and the risk of miscarriage at our clinic is as low as 1 in 1500, I still think that the benefits of amniocentesis outweigh the risks.

However, I have listened to our Genetic Counselor and Mark on utilizing noninvasive screening tests first.

We had the Harmony test done which is a simple blood test (of our GC's blood) that screens for the most common chromosomal disorders - 99%, but not all, of the fetuses with trisomy 21 (aka Downs Syndrome), 97% of fetuses with trisomy 18 and 92% of fetuses with trisomy 13.  The Harmony test also tests for gender and sex chromosome related disorders. The Harmony test does not provide information on other rare chromosomal abnormalities.  The Harmony test also does not provide information on physical defects, such as heart or brain abnormalities and spina bifida, or fetal growth.

It is therefore advisable that you still have ultrasound scans to screen for other potential defects - a scan at 11-13 weeks and at 18-22 weeks to examine the fetal anatomy and at 30-32 weeks to examine the fetal growth. 

Additionally, it is also advisable to also have a quad screen — also known as the quadruple marker test or simply the quad test — at 15 to 20 weeks of pregnancy  This test measures levels of four substances in a pregnant woman's blood: Alpha-fetoprotein (AFP), a protein made by the developing baby, Human chorionic gonadotropin (HCG), a hormone made by the placenta, Estriol, a hormone made by the placenta and the baby's liver, and Inhibin A, another hormone made by the placenta

Results of the quad screen indicate your risk of carrying a baby who has certain chromosomal conditions, such as Down syndrome, and can help detect neural tube defects, such as spina bifida.

We are scheduled for our 11-13 week scan next week.  This is the Nuchal Translucency Screening Test which screens for major defects, such as exomphalos, holoprosencephaly, heart abnormalities or megacysis, and some other rare chromosomal defects.  It uses ultrasound to measure the thickness of the fluid buildup at the back of the developing baby's neck. If this area is thicker than normal (more than 3.5 mm), it can be an early sign of major defects and further testing such as a CVS or amniocentesis may be recommended for actual diagnosis.

This test is noninvasive and basically just like a regular ultrasound.  The major difference is that it must be done by a specially trained ultrasound technologist, radiologist or obstetrician who has received special training to do this test.  Basically that you will probably need to go to a different clinic than your regular OBGYN.

We are then looking to do the quad screen at 15 weeks, another noninvasive test.  Our genetic counselor said that actually we don't need to do the full quad screen since we did the harmony test and parts of the quad screen would be duplicative.

We are then looking to do the anatomy scan at 18 weeks.

We will tentatively schedule an amniocentesis for 19 weeks, which will only be performed if an issue arises at one of our earlier tests.  Otherwise, we may be chancing risk that we would otherwise not need to undertake.

I think that this is a good plan as it utilizes as much noninvasive testing as possible. 

Each hurdle that we clear and test result that comes back good starts to make me more and more confident that Maybe Baby with become a real baby someday.

Right now is still early and we have a lot of tests to do, so I am staying only cautiously optimistic at this point.