Monday, October 18, 2010

Tears and faith

Overwhelmed, exhausted, angry, sad, hopeless, frustrated, annoyed, mad, tired, crushed, heartbroken…

These are all words that express how I am feeling right now.  We had our follow up appointment with my OB today to discuss our lab work and here is what they found.

1.  The baby was a girl.  I am so glad that we were able to find out but my heart breaks more and more when I think about our little girl that we never got to meet this side of Heaven.  It makes it seem even more real and even more sad, if that is even possible.  I can’t stop crying.  The genetic testing came back normal.

2.  Barry’s lab work looked fine.

3.  Everything from my lab work came back in normal ranges except for part of the DNA analysis, which was definitely on my list of things I did not want to hear.  I have a single mutation (c677T)  in the MTHFR gene.  I’m not going to begin to try to explain it on here because I really don’t understand it all.  (Any information from those of you who might have this would be appreciated??)  My Dr. didn’t have much information for us except that he doesn’t see many cases of it and he wants to refer us to a genetic counselor.  Crushed.  He said that he is not telling us that we cannot get pregnant and carry a baby full term but he just isn’t the expert and wants to get a genetic doctor on board.  If and when we get pregnant again we would be followed by this doctor throughout the pregnancy.  We have been doing some research since we got home and I don’t know how to feel about it.

On one hand it’s good that they found something so that we have a starting point of what to try to “fix”.  On the other hand I reallly didn’t want to hear that Barry or I had some type of genetic issue.  Especially one that they don’t know that much about.  I am so aggravated that we are having to get yet another doctor involved, as I was already having enough trouble juggling 2 doctors in 2 cities.  Now we are adding a 3rd in yet another city.  OB in Dothan, RE in Mobile and Geneticist (or whatever he is) in Birmingham.  In case you aren’t familiar with Alabama geography, none of those cities are close together.  Each is about 3-4 hours away from each other.  PLUS I couldn’t get an appointment until the end of November!!  I am so frustrated that we don’t live in a city that offers the doctors that we need.  I keep reminding myself that we are blessed to have somewhat flexible work schedules though and dependable vehicles to get us to each doctor.

I am so angry that not only do we have multiple issues that contribute to us GETTING pregnant but we have issues KEEPING us pregnant.  Issues that doctors may or may not be able to help us with.  Issues that could prevent us from ever having biological children.  Issues that could cause us to have more miscarriages.  Issues that don’t go away without God intervening big time.

Today is just one of those days that I can’t be positive, I can’t smile, I can’t look on the bright side, I can’t stop crying.  I am just tired, so tired of all of this.  I wish that there was an end in sight and I am heart broken that there just isn’t.  I keep running back to the one thing I know is true though.  My hope and happiness are not to be found in what the world has to offer.  I have to place all of that in His loving and capable hands and trust that He knows best.  I have to “Be still and know that I am God” Psalm 46:10.  I just came across this quote and I think it explains this scripture best… 

“So as your world crumbles around you, the call from Scripture is: don’t flinch in faith in God. Stand still — not because of a self-made confidence, not because you are the most composed person in the face of disaster, not because “you’ve seen it all.” Be still because of what you know about God.

It is “God’s past” that provides calm for “our future.” Know that he is God! Know it, not merely intellectually, but practically, spiritually, and emotionally. He is your God. He is the ruler of kingdoms of this earth and the all-powerful Creator of the Universe.

If you are the last man or woman standing, be still. “God is our refuge and strength, a very present help in trouble. Therefore we will not fear, though the earth do change” (Psalm 46:1-2a). Hallelujah!”

 

Message to myself today…Be still and know that God is still in control.

23 comments:

  1. Oh gosh, I am so sorry that you are having to absorb all of this. Allow yourself to be crumpled in God's hands today. They can take your crumpledness and your sadness and they will hold you up (HUG)

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  2. Oh Lisa – I have no words! I am so sorry that you are going through all of this - please know that I am continually praying for you! Hugs!

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  3. I am so sorry you are having a rough day.

    Praying for God's peace to be upon you.

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  4. oh lisa I am so sorry. That would be so hard to hear. I dont know what to say to comfort you but I am saying a prayer for you and your husband right now.

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  5. Lisa - A little girl. What a beautiful picture to have.

    My heart is with you amidst bad news and bad attitudes. I'm so sorry that you have discovered yet another obstacle. Though, I do sympathize with the idea that it's almost nice to find something to "fix." Being in a situation where there is nothing to explain away the issues is so hard - but apparently knowing doesn't make it any easier.

    Hang in there, Lisa. Keep up the reminder that He IS God. I appreciate the reminder this moment of this day too.

    One of my friends eloquently described what we experience at each bend of this road: "Confused Trust." That's exactly what it is, yes? We must trust Him, but that doesn't mean we can be confused.

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  6. I am crying with you, thinking of your little girl. I am so sorry Lisa for all the pain you and Barry are experiencing right now. You are both in my prayers. ((HUGS))

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  7. You and Barry will be in my prayers. I'm so sorry you are going through this. :(

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  8. Lisa,

    I'm sorry you got this news, but good news is this...I have this and it is easily treatable, if you have just the single mutation, the multiple mutations do add a little bit of complexity, but are still completely treatable with healthy babies being COMPLETELY possible! I understand the not having doctors around and the travel itself starts to wear on you, so just know you've got this cheerleader behind you understanding all of that!!!

    As for the MTHFR, if you have the single mutation, the basic explaination is that your body has a hard time breaking down folic acid into folate, folate is necessary for DNA replication, and you can see why that's important. There are a couple of ways to treat it, and I'm not sure they know for sure what is best, but for now I am on mega dose folic acid, like a prenatal has a gram, and I take that plus FOUR extra grams per day. It doesn't do anything to you, as far as I've seen, no side effects or anything. My OB treated it by putting me on Metanx, which has folic acid already broken down in it, but maybe still not enough, so I'm going with the RE recommendation for mega dose folic acid. I hope this makes you feel better, as it is actually a good answer that is treatable with something that doesn't make you sick or require shots or anything like that! A double mutation usually includes a clotting factor that would require lovenox shots. If you want to talk about it more or ask me any questions, email me!! Deni.troxclair@gmail.com

    Our first was a girl and came back 'normal' too and I remember that devastating feeling, I didn't want to know, but then when I did it made it all so real and such a significant loss (not that it wasn't before), but we picked a name and that helped us, as we put it in our family bible. Sending you love and prayers as some days are just worse than others.

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  9. So sorry to hear this. I am praying for you as you sort through all of this information. I am thankful to hear that it may be a fairly easy "fix" based on DeniFay's info. You are such an inspiration to me and so many others even on the bad days!

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  10. Lisa and Barry,

    How we hurt because you are hurting! How we cry because you are crying and going through all this!

    I appreciate so much the quote that you put on your blog. After clicking on it and reading the entire article, these quotes spoke to me:


    “This command — “be still” — forces us to think on two things: that we are finite, and that God is infinite. That being the case, we need to drop our hands, go limp, relax, and “chill out.” Christian people ought to “come, behold the works of Jehovah,” (v. 8) that we may enjoy a calm confidence in him who gave us his Son.

    “Shall he not also with him freely give us all things?” Paul reasoned (Romans 8:32). Psalm 46:10 encourages us to reflect on what God can do in the face of what we are unable to do.

    Spiritual serenity, the psalmist admits, ought to be cultivated in spite of the shaking mountains and agitated waters (vv. 2-3; i.e., figures for the difficulties we face in life). This spiritual calm, that God commands, does not come from a lack of troubles; it derives from a steady, deep reflection on the ways God has intervened in history on behalf of his people (cf. Romans 15:4).”


    How difficult it is for all of us when the “shaking mountains and agitated waters” come into our lives. How difficult it is for us to “drop our hands, go limp, relax, and chill out”, even when we know God is in control. But God does indeed command us to “be still”.

    Romans 8:26-28 (The Living Bible):“The Holy Spirit helps us with our daily problems and in our praying. For we don’t even know what we should pray for, nor how to pray as we should; but the Holy Spirit prays for us with such feeling that it cannot be expressed in words. And the Father who knows all hearts knows, of course, what the Spirit is saying as he pleads for us in harmony with God’s own will. And we know that all that happens to us is working for our good if we love God and are fitting into his plans.”

    You are both in our prayers.

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  11. Yuck. I have nothing else to offer.

    But prayers.

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  12. I can't even imagine...
    I will be praying for your sweet little girl- knowing the gender got me so emotional for you guys when I read that.
    I know it is a pain to involve another Doctor, especially since you guys have such a long drive to get to your Doctors- wow! I had no idea it was that much of a commute for you!
    You guys have done so much and fought so hard for your babes, and I pray that God intervenes immediately and helps you through this next hump in the road with the genetic counselor.
    Feel those feelings....keep expressing them!

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  13. Thank you again, Lisa, for your honesty. I will be praying for you!!

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  14. Hi Lisa....I know finding out new problems is hard to swallow but to be honest this one is an easy fix....I have MTHFR but single mutation but two different copies....I use Lovenox shots before and during this pregnancy....Also take Folbic tab which is increased folic acid/b12/b6....They discovered this after my first IVF when I developed a clot in my lung so ever since I have had to do this reginmen....Also I take a baby aspirin

    Also with our four losses we found out two of them were genetically normal female but other two were to early to test and now you know we are pregnant and almost 22wks with a Boy so dont give up girl...I just wish you had Dr's that were closer....

    I see a High Risk Dr and Regular OB/Gyn and also a Reproductive Immuniologist weekly who is 2 1/2 hours away so def my job is seeing Dr's but in the end I know it will all be worth it on top of seeing all the Dr's I have Infusions...lots of shots....and lots of blood work but if it means keeping a healthy baby I will do whatever it takes but will admit it isnt always easy and I get bummed sometimes when I look back on all we went through to achieve pregnancy...then all our losses...and now such a complex pregnancy but I know this is Gods plan and his gift in the end will be so Great and Wonderful:)

    I know with me even once I did get treated for my clotting disorder that I still experienced miscarriages and mine was Immune Related which is very specialized area and thats why I see Dr. Kwak in Chicago...She does manage patients from out of town....Usually when Im in her office I see people from Michigan, Arizona, etc...that fly in for the day and fly out very crazy I know but only way they could find a Dr. to manage them the way they need to be and with us this is the furthest we have made it and I def think being managed by Dr.Kwak is what has got us thus far....I know she requires you to come for the first consult but then after that she will work with your OB or RE and manage you that way...Just something to consider so you can stop all this suffering in the future....Dont lose hope you will have your miracle baby:) Take Care and Hugs...If you need anything please email me at kklendworth@yahoo.com

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  15. I'm sorry you are going through a rough time! I'm sure it's hard to get the news that there was nothing wrong with your baby. But at least they have identified the problem and they can hopefully treat that in future, so that this does not have to happen again! You are still in my prayers and I hope that you get a good POA so that you will soon have your much anticipated healthy baby!

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  16. Lisa ~
    So sorry to hear your news but your right at least you have a starting point now. And what the other girls have said is right. Thankfully it is a somewhat easy "fix" and we deliver HEALTHY babies of moms that have this a lot! I just wish you lived in Bham! Look into taking lots of extra folic acid and baby asprin / heparin / lovenox. Hopefully your new doc will be very helpful! Praying for you and Barry!

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  17. ((((HUGS)))) Praying for you as only God can give you the comfort you need right now...

    I wanted to let you know that I too have this same single mutation MTHFR. I had three early losses which my Dr says is due to this since I was not being treated for it. Each Dr you see about it wants to treat it differently, that's how unsure the treatments are. Basically, some Dr want you to go on Levonex/Heparin injections and some just want baby aspirin. The only part not in question is the mega extra dosages of Folic Acid along with B6 and B12 for proper absorption. {Whatever Folic Acid your body does not use leaves thru your urine so you really cannot overdose on it...}

    I have been on Folguard 2.2 {I use Walgreens pharmacy and that's the name they have} for the extra Folic Acid combo as well as my usual prenatal which has a lot of Folic Acid and a single baby aspirin a day. Make sure you get the coated aspirin or else it will tear up your tummy over an extended time...

    I was watched extra close in the first tri, when most losses occur and have been on a normal schedule since. The one concern my Dr stated with MTHFR was IUGR which our baby obviously does not have and it's not a confirmed risk factor, still just suspecion.

    I was devestated when I learned I had this, especially after reading all that google has to say about it! I was thankful it was "easily" treatable though.

    Mourn your sweet baby girl. Be encouraged that treatment is available and "happy endings" happen quite frequently with this diagnosis with treatment!

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  18. You said in your post that you will need " god's intervention big time". I know that is possible becaause remember in God there is no failure....you can and you will overcome this together. Good luck you are in my prayers and I am hoping you find the answers you are looking for and your long awaited results even if it is in November!!!

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  19. I'm so sorry. Praying for you and Barry. You're in the thick of it and it's so very hard to have one more thing added to the mix. I pray for God to give you wisdom. Never underestimate the power of God to lead you personally....even if it's different than what your Doctor says. I'm praying for clarity...even as people offer you their advice and their stories...it's all great but it can add confusion to the mix. I pray for God to make it so super clear that you know it is His hand leading yours. He is walking in front of you, beside you and behind you....He's totally got you covered. Love ya and praying!

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  20. I'm so sorry Lisa and Barry. When I pray/think about you, the word "miracle" always seem to come to mind. That's is my prayer. I'm praying for a MIRACLE!!!

    Love,
    Sarah

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