Faith and Fear

"Faith and fear have the same elements. They both require you to believe something that hasn't happened yet."

Cerclage specifics, cervical stats, and doctor stuff.

Does anyone know why my posts are published as one lump paragraph instead of these nice and neat bullet points that I've spent hours on!!! They are showing up correctly in the box that I type my post, spacing is perfect here but as soon as I publish it smooshes it all together! HELP! I'm going to post this anyway because I've spent so much time on it and I will edit it once I figure out what's wrong. Sorry for the hard and heavy reading :-/ I wanted to post the facts below so that you didn't have to search through my blog for this information. Doctors: The information I was given about cervical lengths and cerclages below, were given to me by my doctors in 2005 and 2010. If anyone finds this information to be incorrect, please let me know. My information and experiences are gathered from high risk doctors who had been doing cerclages for 20 plus years... they were both pioneers with cerclage, and started doing them at a time when it wasn't regularly done and I believe one or both of them learned from the man who first implemented cerclage for IC. They couldn't believe that some doctors take a "wait and see" approach in subsequent pregnancies after a loss due to IC. I didn't even have a definitive diagnosis of IC because of the Beta strep complication (which came first the chicken or the egg)but they didn't care, it had to be done. They were that confident with cerclage, that they couldn't imagine taking a chance on another pregnancy without it- even if the particulars of the previous loss weren't clear, it was better to be safe than sorry. They felt that counting on an emergent cerclage in the second trimester if there was dilation was too risky and they had lost babies that way. Some women go to the extreme and get a TAC, trans abdominal stitch that is permanent. They didn't feel that was necessary and I had to trust their experience and judgment that a preventative would hold. They each had their own way of doing cerclage and they liked certain materials and procedures that may not have been mainstream at the time. No doctor will place a stitch the same. For instance I have never heard of anyone else having the Teflon tape added to the cervix with the stitch to keep it shut. And my doctor for the second cerclage came up with the button to tie the purse string stitch closed and I believe he is the only one that uses that. I thought there was some universal procedure that all doctors use to place a cerclage and that is just not the case. They also have to adjust for each individual's body, situation, and baby. No two stitches will be the same. The differences in technique and materials wasn't something I was expecting. However they were able to explain why they chose certain materials and procedures for my case, why they felt it would be most successful, and they weren't afraid to give their stats. Luckily mine hadn't experienced any losses with a preventative cerclage after all those years, but I think I truly lucked out. Some of you email me with protocols that your doctors follow and frankly I don't know what I would do if I didn't have a choice but to follow advice that I felt was wrong... and there were no other options. Heart breaking. Just do the best you can. Don't be afraid to ask the hard questions and find a more qualified doctor if those answers don't feel right. Some doctors only see one IC case a year or one every few years. This is not something that you want done by a doctor that is inexperienced. Have they had any losses or complications during placement or after, if so how many, what were the circumstances, if there is a problem how do they plan on addressing it, what is their availability, will they offer biweekly scans to check cervical length after cerclage placement even if it's just for your peace of mind, etc. These things are so important in pregnancies after loss or pregnancies with complications. I know that I am the type of person that wants to make doctors feel happy and at ease, I never want to cause trouble... I had to work really hard to change how I interact with these doctors that hold the life of my children in the palm of their hand. I had to learn to really become knowledgeable in all things cerclage and IC, be strong and smart when I advocate for myself, ask repeatedly, write things down, bring someone with you, gather explanations and compare, demand even if necessary, to insure that we would not lose another precious baby. Some doctors are receptive, some are not. I've had both and I just didn't care at that point because I didn't do those things with Ian and he died. And because I deserved the best care and best chance for success and you do too! Ok, on to the info: Normal cervical length for women without IC is 3.5. They like to see the cervix stay at 3.5 cm-5 cm for the entire pregnancy after a preventative cerclage with no funneling or U shape occurring. They stated that some cervical movement would be ok, depending on where your doctor places your cerclage, possibly down to 2.5 cm would be ok with no funneling or U shape but anything lower than that would put the cervix at risk of being torn. I believe they said 1.5 cm and lower would be right up to the stitch and is considered an emergency... immediate bedrest. Again, it all depends on the person and the situation. Cervix's are always moving and changing, sometimes many times a day and different angles with the ultrasound can produce different results so it's important for the doctors to take those checks seriously and don't be afraid to write down your lengths at each scan, no matter how frequently. If there was a change, how fast did it occur, are there any other factors contributing to cervical changes, make sure they check the cervical end where the baby is for any funneling at all, any U shapes, any signs of the membranes going into the cervix, any changes there that are caught early could mean the difference between life and death for your baby. A rushed scan is just not acceptable. 1st cerclage- Four months after we lost Ian, we conceived Nathan. My cervix was not prepared for this so soon and the recommended time frame to place a preventative cerclage- 13 weeks, was pushed forward to 11 weeks. Two preventative Shirodkar stitches (more invasive, it's weaved in and out of the cervix all the way around) were placed high up at 11 weeks gestation. Teflon tape inserted vertically into my cervix to tape it shut. I had no cervix at the time of placement. After pulling and manipulation to gather cervix for the placement, the stitches held my cervix shut for the entire pregnancy at 4-5 cm depending on the ultrasound angle with no funneling or U shape. I was on my feet until the end of the pregnancy, no bedrest needed. I ended up needing a spinal to have them removed at 37 weeks after trying to clip them in the office because the stitches were embedded. They removed all but a small piece that I still have in there to this day. That piece has not affected my dilation and I've had successful and normal vaginal deliveries. I had no problems with conceiving after my cerclages, no damage to the cervix that affected conception or subsequent pregnancies/cerclages. At the removal of the stitches I immediately dilated to 3 cm and it stayed that way until my induction at 39 1/2 weeks. 2nd cerclage- Five years after the above pregnancy/cerclage, we conceived our second son. A preventative McDonald cerclage (less invasive- purse string stitch tying it shut with a button) was placed at 13 weeks because my cervix was 3.5 cm at the time of placement. 3.5 cm is the normal length for a cervix without IC at that gestation. There was no emergency this time, no difficulty with this placement and removal. The doctor commented that he did see the remnants of the previous stitch but that it wouldn't impede this placement. The stitch held the cervical length at 3.5 cm for the entire pregnancy, no funneling or U shape. I was on my feet until the end of that pregnancy, no bed rest needed. Removal was done at 37 weeks in the office with no anesthesia. It was painless. The speculum was placed, the stitch snipped, button and stitch removed, all done in less than five minutes. I immediately dilated to 1 cm and then was induced at 38 weeks due to contractions and dilation to 3 cm. Pain: I've had a lot of women ask about whether or not I felt any pain, pressure, twinges, etc. after placement. I had occasional random sharp twinges here and there, especially when Nathan would move and kick, Sometimes when I bent over suddenly, and definitely more so with the first stitches. I don't know if this makes sense but I was always super aware of feelings in my cervix. I definitely had some odd feelings and some odd pressure towards the end of the pregnancies and I always addressed this with the doctor. I was told these were all completely normal and that I only needed to worry if I saw blood or had contractions that gained in strength, neither of which I had. I know this is a lot to take in and I always write a load all at once. I feel obligated to get it all out there for public consumption because I am an unusual case for many reasons. I've had two separate successful cerclages by two different doctors with the two different stitches. I'm getting lots of great emails with good questions from you all and I thought a refresher post might make it easier to gather the information you need. I LOVE getting emails from you all and while I hate why we are in contact, I always hope I can be of some help. I apologize if there is delay in my response.

Take care everyone :-)

Imagine

I tricked you with my awesome post title didn't I? This isn't going to be uplifting in any way. Sorry. *Imagine the day in your life when you were the MOST tired, exhausted, and aching you've ever been. And you couldn't wait for that day to be over so the next one could be better. *Now imagine that none of your future days would be better, more energetic, more positive. *Imagine that your body failed in the most basic of ways, day in and day out, exhausted, your whole life. *Imagine the disappointment in yourself. Imagine the expectations that you needed to fulfill that you couldn't. *Imagine that you were an especially empathetic, sensitive, and feeling individual. Imagine that you knew the pain you caused others by something that was out of your control. *Imagine your friends and family who needed you to be there for them as they were for you. Brothers, sisters, best friends who needed a NOT tired and supportive friend. Just like you were before. And you couldn't do it. You were too tired. *Imagine children who needed a mother. Maybe a working mother that could bring in money. Or a stay at home mother that could teach them and nurture them. Now imagine that you were too tired. You couldn't work and couldn't be the mom you knew you needed to be. Because you are too fucking tired. Imagine the horror of birthing your SO LOVED AND WANTED children that you worked and toiled for, loss after loss, when you finally got your beloved babies, only to realize that you are too TIRED to properly care for them. Love only goes far, action is what counts. Imagine the guilt and pain of that. *Imagine you need to be the daughter that your parents raised you to be, the daughter in Christ that you know God wants you to be. But you're too fucking tired. Imagine needing to be a good daughter in law and renter, caring for a house, getting it ready to sell and show.... and moving for the 7th time in 10 years. Imagine that. But you're too fucking tired. And it has to be done. But you're too fucking tired. And no one really cares... because it has to get done and your husband is working, so who is going to do it? *Imagine all the hope you put into doctors and medicine, only to be told that there is no medicine, therapy, or cure for your TIREDNESS. There is no pill or treatment. Imagine you've spent over a decade trying different medications and therapies, things no one even knows about other than your husband. But your body doesn't care. You aren't special, there is no magic, no karma, no good deeds you can do to make this different. It will continue and possibly get worse as you get older. You're too tired to exercise and eat right. At this point, you're too tired to even care. *Imagine being told your worst day will repeat until you die. *Now imagine your beloved husband. The person you imagined a happy and full and fulfilled life with. The person you would do ANYTHING FOR. Through thick and thin. Ten years. Waiting for the day when things will get better. Waiting for his wife to return. Waiting with hope and positivity as each negative event beats them down. When will the happiness return? Why can't he fix this, he just wants to fix it and move on. Not understanding why his wife is too tired to love him fully and care for him. Too tired to be happy or even pretend. He thinks this is all his fault. No one can imagine an illness taking someone's love and affection and care away indefinitely. Imagine the day he realizes that it won't get better. That he will have to sacrifice his own happiness, his own well being, his own money and time, for his entire life, while he watches his wife suffer, in pain and guilt, and he can't do ANYTHING about it. You tell me what man can actually give 200% in those circumstances. Keep strong forever. I'm telling you, IT CAN'T BE DONE. Even the most loving, the most character filled man, will crack. Don't tell me otherwise unless you have lived it. *Imagine that the above is your life. And that you are 32 years old with two young boys and very little support because who wants to be with the suffering miserable wench for more than a hot second? What fun is that? Imagine BEING that suffering miserable wench. *Imagine being happy on your 32nd birthday when you wish you were never born. *Imagine that.

And the diagnosis is....

I wish there were only one. I went to my initial appointment with my Rheumatoid doctor last week. She came highly recommended and didn't disappoint. She diagnosed me with Lupus, Rheumatoid Arthritis, and Fibromyalgia. She also says "there is definitely something else going on" and referred me to a neurologist and an ophthalmologist. I can only imagine what the "something else" will be, an alien in my brain perhaps? I hate this shit. I hate being "sick". I hate being negative. I hate who I've become. I hate that other people are tired of "this Melanie". I hate it all. Life has turned out to be a real cluster f*&#. My stupid 32nd birthday is on Wednesday, my husband is out of town for the week for work, and no one seems to want to hang out that evening which I don't blame them because even I DON'T WANT TO BE WITH ME. It still stings though. I'm disappointed in myself, I'm disappointed in my life, I'm disappointed in the people in my life who should be helping me get through this time but instead are burned out with me or whatever. If I hear one more "Chin up, be thankful for what you have, at least you have this or that, it could be worse, look at the other worse tragedies in the world, live in the moment, stop worrying so much" I'm going to SCREAM and mentally punch them in the face. If you can't just support and love me for who I am now, UNCONDITIONALLY, and if you can't accept that I am no longer a person who can help you with your shit right now, then just go away. I've been helping people with their shit my whole life and I've been trying, trying, trying to be who everyone wants me to be. Look where it has gotten me. NOWHERE. I have every right to mope and be pissed for as long as I want. Does it help anything, probably not but it's my damn choice and I'm sorry if I haven't mastered how to be AWESOME POSITIVE MELANIE while my life falls apart. That's all. Happy f-ing Monday.

Still here

I haven't had much to post lately. I'm sorry for being a bad blogger. I FINALLY have an appointment with the rheumatologist in a few days and to say I'm nervous would be a major understatement. So I'm just kind of hanging out until then.... I will post more once I have more concrete information regarding my auto-immune issues. I wanted to thank all of you who have emailed and reached out to me, needing advice or just wanting to connect. I try to email everyone back as fast as possible but some things have fallen through the cracks and I apologize. Please continue leaving comments or emails and I will do my best to answer your questions :-) Happy Fall!