Thursday, October 22, 2009

why be normal?



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!  *I also need to add that my wonderful angel sister gave me a pep talk last night that totally helped me feel like I could do it!*

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!

14 comments:

Heidi said...

You are so brave Laura. I am amazed by you. This post made me cry a little. That's not hard to do. I'm a baby. I'm so glad you have such great Doctors and that Connel is taking such great care of you. Not that I am surprised at all. I really hope that things continue to go well. You and Hannah are in our constant prayers.

Wii are the Nelsons said...

so eloquently said...you're so good at getting all your thoughts down. It's tough trying to always remember the affirmations from the Spirit. Good luck with giving yourself shots...I had to give insulin shots to a 11 year old, not fun.

Ashley said...

You make me feel like I took my pregnancies for granted! It is fun to be pregnant, and from all your pictures and stories, it definitely shows to be something you appreciate and will always remember. It's funny how things like this happen, and they kind of suck, but in the end you realize how much it helps you to appreciate your children and how much work it takes to bring them into the world. Then you NEVER want anything bad to ever happen to them and you want to hold them always. Hannah will be so lucky, loved, and appreciated by you... I'm so excited for you! We love you so much and wish we could be closer to share in all your fun! and kudos to Connel, Richard never offered me a pedicure! geez! =)

yvonne said...

SO - I guess this is why I felt like you should go to a specialist. Don't worry about not being normal- some of us never are. I've had a continued # of problems-and sometimes I wonder why this had to happen to me. We may never understand the trials we have in this life, except for that they are to prepare us for something.We cannot compare ourselves to others simple because they are not us. No one can ever really know what you're going through but you have many that can and will support you. We love you and I'm so glad you're back among us.Hang in there the journey is just beginning!

Heidi said...

And you should take Connel up on his offer to give you a pedicure. Kevin did that for me when I was pregnant. It was great. He tied my shoes for me too. Husbands are great.

kim said...

Laura- we love you guys so much and pray for you daily. I appreciate all of your words in your post. I just love the way you write. You do have a great husband and you also are an amazing person. We just can't wait to Meet Hannah and see you guys again! I hope you can not be stressed about this news and enjoy the last few weeks of your pregnancy. It is so close and that is so exciting! Good luck!!!!!

~ kietra ~ said...

YOur post is so positive Laura- proud of you for finding and sharing the good things about it all right now. There are always complications with kids and they are always unexpected. SO grateful we have priesthood power!!!! Hang in there! You'll get the best prize of all very soon!

Amy said...

Wow. You are such a strong person! Keep us updated! I know how you feel with thing seeming to always be going wrong and just wanting to be “normal”. (Even though we know we are blessed) I don't think there is anything that can go wrong with having ultrasounds.... I had to have one with every doctor appointment I had- and my girls seem fine :) We miss you!

The Beck Bunch said...

All I can say is WOW!! You have been very very blessed. We love you and hope all continues to go well. I am sooooo excited to see and meet your little girl. It is the most incredible thing to snuggle with your own little person!!!

ErickaBirch said...

Thank goodness, ultrasounds don't have any negative effects. In fact, I had one about every other week or more through most of my pregnancy with the twins, so you should be good in that respect. It sounds like you have some great doctors! I will pray that everything will go well for you and little Hannah (and Connel, too). You are so strong, and you're almost there!

Tanya said...

I just read Rachel and Doug's birthing story and then read yours, and after you listed all those things you have I got nervous, but I'm glad everything is going ok and the doctors sound amazing! I'm glad that they are watching out for you and baby Hannah. I prayed for you before you were pregnant I still do and will continue to do so I hope everything continues to go well! Your such a great friend and I love that your sharing such a personal story with us so we know how everything is!

Ashley said...

Like everyone else, I think you are so strong. I'll pray that
everything will be ok. Good luck
with things these next few weeks.

Luke and Katie said...

Holy cow!! I have been so out of the loop lately that I am just reading your blog. I am so sorry that all of this has happened, but you are right, the Lord has a way of inspiring us and others. I am so glad that you were able to go to a specialist and find all of this out for the future. Also, I had multiple ultrasounds with Mac..and he turned out great! We can't wait to meet Hannah!

MAK said...

I had a blood clot in my first pregnacy. It was one of the many things that contributed to what, at the time, felt like a major desater but in hind site was realy just a hill that had to be climbed. I had the hepron shots at first to and then was on a pill blood thiner called cumadin for about three months. Luckaly all the test they ran showed that I have no blood clotting disorder but they have had me take baby asprin during the last three months of my subsiquent pregnancys. So I know all about wanting a Normal pregnancy and also the realsing that everything is under control and can be all right.

And yes you can use the quilt idea. It wasn't even mine to begine with.