Friday, January 15, 2010

When One Door Closes... Find A Window.

First, I would like to send out a HUGE THANK YOU to all of the bloggers, friends, and family who have supported me through this latest crisis with hugs, prayers, and messages of support. Baby loss is isolating. Infertility is isolating. Thank you so much for showing me I do not have to face this alone.

Our appointment with the Fertility Specialists (or FS) was at nine this morning, and we met with two separate docs who reviewed our case and performed some tests. It was really comforting that they both told me they had read my case, and offered their condolences on Peyton. That might seem like such a small thing to some, but it is a level of compassion not lost on us in the babylost world.

I had a pelvic exam, some cultures done, and an ultrasound of my reproductive system, after which, we were invited to sit down and talk in detail with both doctors about what they had found, and what they felt was the best way to proceed. The FS told us that we had two options, some of the details of which were expected, others which were not.

Option A involves a laproscopic surgery performed through incisions in my belly button and abdomen to explore the damage from the scarring, try to remove it (this is possible in a small percentage of cases), and assess my tubes for future functionality. If Option A worked, I would, in theory, be where I was before this nightmare began, and have working tubes.

Option A, the surgery, also has some major downsides. First is effectiveness, the FS indicated that in all likelihood, the surgery would reveal that the damage is too extensive to be corrected, and I would still need to pursue IVF to get pregnant. He discussed with me the theory behind muscle spasms, and I am going to share that here for anyone else who might go through this. He said that in some cases, the uterus will go into spasm, closing off the entrance to the tubes during the HSG, making it impossible for any dye to get through, and giving a result that appears as if the tubes are blocked. The reason this is not believed to be the case for me is pain. During the HSG, I felt discomfort when the catheter was put in, as well as when it was tugged on. This discomfort was always in the area of my cervix. When the Docs were trying to blow through the tubes with the dye, I felt nothing. This is supposed to be the most uncomfortable portion of the test. This is why they ruled out muscle spasm for me, because if the uterus was in spasm, I would have felt extreme cramping discomfort at this point in the muscles that were spasming. Also, because scar tissue does not sense pain.

Another major downside of this surgery is cost. Our insurance offers a lifetime max of $15,000 for fertility treatments, and a large portion of this would be spent on this surgery. If the surgery was not effective, and we had to pursue IVF, we would be left with a much smaller reserve of funds from our insurance company to cover the cost.

Third is the risk of complications from the surgery. There are risks, namely that your bowel, uterus, or tubes can, in a small number of cases, be damaged during this surgery. As of right now, my uterus looks good enough to hold a baby, so I am not sure that is a risk I am willing to take. Additionally, this surgery requires full sedation, so there is the possibility of complications from anesthesia, as well as the possibility of getting another infection, like the one from my c-section that put me in this position.

Then there is the fourth downfall. Due to surgical scheduling, as well as recovery time, if this surgery failed and we had to turn to IVF anyway, this surgery would put that process off by several months. Going several more months without any forward movement is a bit overwhelming.

So that leaves option B) Never find out the extent of damage and instead go straight for IVF. The main issue with this option is cost. It will cost approximately $17,500 for the first round of IVF, $2500 over our maximum amount covered by insurance, which is pennies in our minds if it works, but very expensive if it doesn't. We do feel a sense of hope in that the FS thought that with my age and health history, the success rate for me on IVF would fall somewhere around 50%, as opposed to the usual 20%. I am trying to view this as a glass half full scenario.

At my age they are willing to transfer up to two eggs. There is an increased likelihood of multiples. A 25% chance of twins, and a 5% chance of triplets, are what we are looking at, should the IVF cycle be successful. I have seen a lot of heartache on these blogs for mothers who have lost multiples, and know that there are added risks with multiple pregnancies, so that is something to consider as well.

So there you have it. I would be lying if I didn't say that this appointment has renewed a sense of hope for me. I am being "cautiously optimistic" which is a huge step up from my "life is a shitstorm" attitude of late.

When I had my HSG, and the Docs indicated that IVF may not even be an option available to me because of the damage caused by the infection, it came as an extreme shock. I saw the door of motherhood slamming shut before my eyes. It was devastating.

Seeing that there is this other avenue, this little window letting some light in on the situation, gives us something to hope and wish on. Of course I would rather conceive other children the way I had with Peyton, as opposed to through surgical means or in a petri dish, but I can't. That door is closed, and there is very little that I can do about that, so instead I am looking towards that window, and praying that in it's light lies a second chance for us. A chance to have another child of our own. A chance at our own, healthy, rainbow baby(s).

We are still thinking over and researching both option A and option B, but I think we are leaning more towards B. Please keep us in your prayers to make the right decision.

33 comments:

  1. I have had a laparoscopy when I had my first miscarriage (they thought I might have an in utero miscarriage as well as a tubal pregnancy, hence the laparoscopy, it was just a cyst though). It was definitely uncomfortable but did not cause damage to anything, unfortunately I did not have a choice wether to have it done or not. It does give a very nice look at tubes/ovaries.

    I think that the FS you saw gave some great advice, and if I had the choice between A and B in your situation I would probably pick B due to the fact that chances were I would need to proceed that route anyway and I would want all available funds to go to IVF.

    One thought would be that if you did do IVF and it ended perfectly (with a lovely healthy baby(ies) maybe during your next c-section (assuming you would choose that) they could perform a laparoscopy and you could have a chance at getting scarring in your tubes removed and a potential chance at another baby conceived au naturale. I have no idea if that would even be a feasible request, but just a thought.

    I am hoping that no matter what decision you make it will be the right one and will lead you down a path to another pregnancy and birth and healthy little one(s). I feel in my heart that Peyton will be a big sister.

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  2. I wish you and you're husband the best of luck with whichever option you decided to go with!

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  3. May you find peace in your decision. I hope the light from that window continues to grow brighter.

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  4. Whatever option you go with, know that I am here to support you and help you in any way possible. I am happy to hear that your appointment left you with options and that brings a smile to my face. I know you are faced with some difficult decisions but I know you will do what is best for you and your husband. Sending a big hug to him too because I am sure his heart aches too! Keeping you in my prayers!

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  5. I'm so glad you've found a window and some hope. Hope is all that's getting me through the days at the moment - I can't imagine how you've been feeling.

    xx

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  6. it's all so overwhelming, even from this side, i can only imagine what you are experiencing. I will pray the right decision comes to you. and I'm glad you got some hope. I know it's scary for us to venture hope again... but sometimes, it's all we've got.

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  7. Fall down seven times, stand up eight.

    I'm glad that you are metaphorically dusting yourself off. We are with you on this journey, no matter what choice you make. I only wish the best for you, and that this shitstorm doesn't return!

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  8. Thanks for the update, I've been thinking about you all day. I am sooo very happy that motherhood is still most definitely in your future. I hope you find peace in which ever direction you decide.

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  9. I am very happy that motherhood is still something that WILL happen again. Whatever path you chose will be the right decision. You have thought, prayed, and researched I have no doubt that you will make the best choice. Whatever you decide we are here to support you. ((hugs))

    Nicolle

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  10. I love the title of this post.

    I have no advice but just a thought for you. The love that created Peyton will be the same love that creates a new life (or lives) only the mechanics will be different.

    I am so glad there's hope shining through that window!

    xxx

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  11. Oh Kristin.... I couldn't imagine having to deal with all this infertility stuff on top of losing a child. I'm sure it's a total emotional rollercoaster ride, but it sounds like you are beginning to see some light at the end of the tunnel. You do have options though, and although they might not be ideal, you WILL have a healthy baby at the end of this all. Peyton WILL be a big sister. I'm with you though - I think I'd opt for the IVF right away and possibly do the exploratory stuff down the road. Right now, all you need is a baby (or babies??) in your arms. The rest will come. ((hugs))

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  12. just a thought....you could also have your ob/gyn do the lap surgery and see if your insurance would cover it that way. i had a lap 18 months ago, for different reasons, and it was fairly easy.

    praying for you as you take this next step...hopeful that little peyton will have a sibling...((hugs))

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  13. Kristin that quote on your IVF sounds pretty high. Does your insurance cover IVF in either another state or maybe here in Canada? I'm pretty sure IVF runs about ten thousand Canadian which would save your insurance company a substantial amount of money and give you the option of perhaps pursuing it a second or third time if needed. Find out and let me know and I'll start emailing some places here to get pricing. Hugs PS-I'm glad you're feeling some hope again.

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  14. What a wondefully positive update. I know some would say how is that update positive, but as someone who has been through infertility and is suffering again, I know how having a plan in place can make all the difference in how you emotionally look at everything. They both sound like decent options, but with the risks of option A, personally to me that option is off the table. I hope you find peace in whatever decision you make. I do want to ask though, why IVF cycle #1 would be so expensive? I have never heard of it being that much, even on fresh cycles. Lots of *hugs* I hope this new journey has a happy ending, very soon.

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  15. Hello mama bear...

    Go for it! What I wouldn't give to have my twins...what a blessing it could be for you. I'm thinking of you...praying with you...loving the mama you ARE and will become. Walk through that open door...bravely. You can do it.

    Always here if you need an ear...you know my email...

    (HUG))

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  16. Hoping and praying you reach a decision that leaves your heart and mind at peace. I am so glad to hear a glimmer of hope creeping back into your posts.

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  17. I had the laproscopic surgery due to my recent ectopic pregnancy. The risks are a scary but I had no choice. If I were you, I'd go straight to IVF because having to pay all that out of pocket after the surgery would be a burden. I didn't realize IVF was that expensive. That makes me scared for myself should I end up with fertility issues over having my fallopian tube removed. Praying for you and that you will make the right decision for you and your family.
    xo
    Ashley

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  18. Praying for you, for a "break" from disapointment, and a chance for hope and excitement. Continual disapointments just drain us. Praying, Praying...

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  19. So thankful you were given hope today. I agree with the others who feel in the gut that you WILL be a mother again. Thanks for taking us on this journey with you, and know that you are certainly not alone (even though I sure know how that feels) and you have quite a team of cheerleaders.

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  20. I'm glad you have some options to consider. I had a lap done 2 years ago due to unexplained infertility. My insurance only had a max lifetime coverage of $5K. My RE referred us to another doctor, an OBGYN who specialized in doing laps. That way, the the cost did not fall under fertility treatments, and insurance paid for it. As for risks, there are always risks with surgeries, whether it is a lap or IVF. Having said that, I do not know what the right decision is.

    Good luck in whatever you decide. Either way, I'm keeping you in my thoughts and prayers.

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  21. I am so hopeful for you. I am encouraged that you have those two options and it sounds like a great team working with/for you.
    We are praying for you as you walk forward towards bringing home Peyton's baby sibling.

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  22. Wishing you the best of luck with whatever you and your husband decide. You'll be in my thoughts.

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  23. so glad to read this today! praying for you as you decide whats best for your family!HUGS

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  24. You are such a beautiful person and such an inspiration despite what you have gone through. I send prayers your way on a daily basis and even though I don't think you often (if ever) take part in them have awarded you 2 blog awards. If you are interested in seeing them, visit my weightloss site www.thefatchickweigh.blogspot.com
    God Bless
    Krissy

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  25. I'm so glad to read about this 'window' and I hope that you will be able to come to a decision that you are happy with.
    I am so full of hope for you, and although I wish that the process could be simpler, I couldn't help smiling whilst I was reading this post. x

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  26. of course dear... always praying for you...

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  27. I'm sorry if I'm posting this again-I've tried a couple of times but nothing seems to be working:) But I just wanted to say that I was so glad to read this post and that you at least have choices-and soon a plan-and soon action. I am hoping, hoping, hoping for you!
    Hugs!

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  28. I am so happy to hear that you have found some light through all the darkness. It must be a hard decision to make, but it sounds as if you are very wll informed and will make an educated decision. Best wishes!! xx

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  29. I am so pleased you have some options to ponder. Praying that the window opens extra wide.

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  30. I hope you find a solution, and some peace in whatever you choose. This is my understanding of adhesions (scar tissue) - 70% of all surgery to remove them is unsuccessful, because the primary cause of adhesions is surgery. So they remove them, but the surgery causes new ones. It is also my understanding (could be wrong) that this also goes for laparoscopies. However, I know some girls who have had other things go undiagnosed due to lack of investigation (things like fibroids) that would have impacted negatively on the success rate of an IVF. Scar tissue in the tubes is not the only problem, adhesions in the uterus can also prevent the embryos from "sticking". The HSG would have diagnosed that type of scar tissue though. On a more spiritual side of things - I believe that we carry our grief in our bodies. In our cells even. I am amazed to see how many grieving mothers start to experience infertility in the way of blockages afterwards.

    I don't know what to say about "grieving bodies", other than, it makes sense to show your body extra nurturing and love, whatever that means for you. Massage, enough sleep, etc. I haven't quite solved the problem myself yet!

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  31. Hun I think best be safer than sorry and go for the IVF. Less risky with less side effects for the long run. I know stimming for eggs can cause issues and the medding up, too...

    But, at the same token, a surgical procedure can cause a boatload of heartache. My TAH-BSO created hydronephrosis of the kidney from scar tissue and I had two subsequent surgeries and stenting that did not work. Lucky for me, my renal cell was in that particular kidney so the problem resolved when they removed my kidney for the renal cell carcinoma.

    Hugs and glad you are feeling a bit more optimistic. You've got my support and prayers, always a mama!

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  32. Wishing you the best and I'll keep you in my prayers as you decide which road to take.

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  33. I just came across your blog. I am so so sorry for your loss. I am praying for your decision, and that you will feel peace about it.

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