Why be normal?

I posted this on my personal blog today and thought that I would update here too.

Things have gone so well this pregnancy and I have NO room to complain, after all, I AM pregnant and it has been wonderful!  However, when life starts to get normal at all, I have learned to start to wonder what will happen next...

Here is the story, the best that I can explain it.  We went to the doctor a few weeks ago and he ordered a blood test.  Because I am taking 81 mg of baby aspirin (which my previous doc in St. Louis put me on) they wanted to make sure there wasn't anything major before taking me off of the baby aspirin which they usually do in the last month of pregnancy.  Mostly they were screening for chances of blood clotting issues and such.  I went back to the doctor about a week later and they received a fax from the lab which contained information about MTHFR (Methylenetetrahydrofolate reductace) gene mutation and a few other things that I didn't understand completely.

They explained that it was a rare genetic deficiency and that it had to do with elevated homocystiene levels, blood clots, and absorbing folic acid.  Normally pregnant women have elevated homocystiene levels, which puts them/us at a greater risk of blood clotting.  However, with this specific mutations I have even higher homocystiene levels, thus causing an even greater risk for things like thrombosis (blood clots) and arteriosclerosis (hardening of arteries) which can eventually lead to other complications such as heart attack and stroke.  Blah!

Now, before you go and get all freaked out...know this:
Everything is going to be just fine, I am doing well and more importantly so is our little girl.  I have no known blood clots so far.  The doctor has been having me come at weekly intervals at this point (which they usually don't start until about the 35/36th week) and my blood pressure has been normal, I have had little to no swelling and no unexplained pain.  Each week they do an Fetal NST (non-stress test).  And so far, she had not been "stressed".  Also, because of my family history none of this information surprised me way to much and I felt that there was no need to worry so much.  (What really intrigued me most was that they also mentioned that this blood clotting could be one of the causes of my many previous miscarriages.  To be brief, the elevated homocystiene levels could have possibly caused the blood behind the placenta to clot or lack of blood flow to the baby, causing miscarriage.)

They mentioned that they would send the new lab information to the perionatologist (high-risk pregnancy doctor) and have him look over it and they told me that I may need to meet with him.

Later on in the week (about a week ago) I got a call from the perionatologist office and they scheduled an appointment for me to meet with him October 21st (yesterday).  After this call, I was actually a little bit nervous, mostly because he is a high-risk doctor.  In my mind, going to a high-risk doctor means that I have a high-risk pregnancy, that there are complications.  Something that just causes me to stress and worry all the more!

So, yesterday morning we got up and headed to the perinatal center for our consultation.  We thought that they were going to do ANOTHER ultrasound (which I don't mind, but we've had a total of 6!), because that is what the receptionist had mentioned might happen.  However, no ultrasound, we just met with the doc.  And, the new news is that I have a rare genetic defect which can lead to complications in pregnancy. 

There is so much medical mumbo jumbo that I can hardly keep up with it.  But, to help myself understand it better I am laying it out in writing.

I have PAI-1 Homozygous 4G/4G allele.
I also have MTHFR mutations C677T/A1298C.

Try to understand that! Ha!
Combined, these two little deficiencies do the following...

I'll try my best to explain it all in basic terms:

The MTHFR gene is responsible to absorbing folate.  And we all know that folate/folic acid is very important during pregnancy and while trying to concieve.  So, because I am deficeint, I have to take extra folic acid on top of my prenatal pills.  Not so painful. :)

Because this deletion of MTHFR, I have extra high levels of homocystiene, and increased risk for blood clots I am now on a blood thinner or anticoagulant known as Lovenox, which I will have to be on from now until about 36 weeks, then I will be on heparin, then Lovenox again until 8 weeks after I give birth.  Lovenox is a bit more painful...it is in injection form---I have to give myself SHOTS--in the stomach!  Gag.  One every day.  I know lots of people out there have to give themselves shots each day for various reasons, however, if you know me, you know that I get really, really woozy around needles.

(Today, I went in and had a nurse from the hospital teach me how to give myself the shot.  What an angel, she had me practice on a towel with some water filled syringes a couple times, then I GAVE MYSELF the shot!  It was quick and painless...until about 30 seconds...then, it BURNED, it felt like someone was pinching me really hard in the love handle and twisting!  However, the 7 or 8 minutes of pain subsided and I am now feeling confident about giving myself an injection each day.  Thanks to the angel nurse!

The PAI-1 is a little more difficult to explain, I am still trying to keep the two separated but I think the truth is that they are related, they are both on the same genes from what I understand.  But it is also related to the blood and thrombosis.  It is also related to metabolism somehow.  What I remember most from what he said is that because of the increase risk of blood clotting, I cannot ever be on a hormonal birth control and I will not be able to take hormonal supplements such as estrogen when the time comes (such as menopause).  And because the blood clotting factor is not enough... It also puts me at a greater risk to have complications in pregnancies... such as miscarraige, stillbirth, preeclampsia/eclampsia, placental abrubtion, intrauterine growth restriction (small babies) and prematurity.  Ya.

Other than ALL of THAT yuckiness...

No changes in my activity or diet, just keep exercising and healthy eating habits...they called me because they WERE supposed to have me have an ultrasound, so today I went in and saw baby Hannah again!  (However, can multiple ultrasounds do damage to baby at all?  Just wondering...) Mostly because I have ultrasound #8 in 2 weeks to make sure baby is still healthy and growing well.  I still go to my regular OB ever week and so between all of it, I feel that I am pretty well taken care of!

The feeling that Connel and I get is that everything is going to be okay, so far my pregnancy has gone extremely well and we have had little to no scares.  We are very very very lucky to have this little sweetie growing (and having a personal party) inside my womb.  She has been right on track in all the ultrasounds and there has not been anything of note to cause concern or alarm before this.

After we left the doctor, I was a little subdued and Connel asked if I was okay, I started to cry because I wasn't.  I was mostly upset because everything was going fine and then this had to happen.  I told him that I just wish that things could be normal for once and that I could have a regular pregnancy just like the a NORMAL woman, no worries about miscarraige and blood clots...just the NORMAL pregnancy woes like back pain and nausea!  I also told him that I just wanted to know that our baby girl would be healthy and safe when she was born and things like this always make me worry!

However, despite this bloody little setback, I have to acknowledge that I do have so many things to be grateful for...

I am so grateful that I have such a supportive and uplifting husband!  Connel has been a real strength to me during any hard time and through this pregnancy he has been no different, always helping me with the normal pregnant things that I can't do like lift and pull and bend.  Giving me backrubs and foot rubs at any request, offering to give me a pedicure (which I have yet to claim, maybe I'll take him up on that this evening!), suffering through my snoring and endless tossing and turning and taking up most of the bed. (I have a funny story about that, BTW!)  And following me from kid sale to kid sale just to carry all the clothes that I have stocked up on for Hannah!  And most of all caring about my feelings and supporting me with uplifting words when things like this happen, whether large or small.

I have felt that the doctors that I have had throughout this pregnancy have been inspired.  My doctor in St. Louis put me on baby aspirin which they do for many pregnant patients to prevent blood clots, but she did this without prior testing, hoping that it would help decrease the chance of miscarriage.  Then, the doctor here was doing the blood screening to make sure there were no issues which would cause complications, and because of his thoroughness, we have been able to hopefully prevent any awful complications.  I have a family history of heart disease and such, but no personal prior medical history of any blood clotting issues.  When the doctor recommended baby aspirin, I thought it to be sort of random, it was also random that they did the blood clot screening here in Ohio... I really feel like Heavenly Father has definitely been intervening in our behalf, medically and otherwise.

And what would I do without my family and friends!  You have rejoiced and cried with us when we finally had a successful pregnancy.  We have received more support than we could have ever asked for during this pregnancy.  You have all given me hope through your well wishes and words of encouragement.  We have been spoiled through two baby showers already and another one coming up!  And most importantly you have given us so much support through your prayers and love!

So I guess, come to think of it...with all the blessings attached, why would I even want to be normal?  Normal is boring!

1 comment:

Christine Dallimore said...

Oh Pooper-Scooper!!! I am so sorry you have to give yourself Lovanox injections. I too have to do the same thing from day 1 of my pregnancy. It will get easier. I find if I push the seringe very slowly, it doesn't hurt or sting as much. Also, if you choose to nurse, it does transfer through to the milk. Your baby may bleed a tiny bit more with her PKU test- just as a warning. I panicked the first time with my baby!! All will be well though. Talk to your doctor if ya have any question/concerns....or email me! Good luck!!!! I'm SOOOO excited for your little one to be here!!! Not too much longer...:0)