How to Move forward

Two posts in one day, I realize people will be shocked. They are two entirely different posts. The first post was for family, this post is a heartfelt outpouring of grief that is best understood by others who have walked in our shoes relating to the loss of a child. Memorial Day was recently. I have been struggling so hard with grief ever since. I realize that feelings I will express here about guilt seem pointless. My head knows what happened to Mason was not my fault. Sometimes it is hard to tell my heart that. No amount of time, or counseling, or prayer seems to completely remove those feelings of guilt. In my case, I had a perfectly healthy baby boy, and my cervix was too weak to carry him to term. I was betrayed by my own body. My son was betrayed by my body. My son died because my body failed both of us. Memorial day seems to have increased the feelings of guilt and thus the feelings of grief. I feel so guilty for not being able to be there at his gravesite on that day. I hate that I had to leave him. I hate myself for the need to have a gravesite to visit even occurred at all. It is a terrible combination and I am unsure how to completely let those feelings go. I have come to realize several things through the counseling I do with other mothers new to this situation. Losing a baby is unfair. Grief is unfair. A grieving person will act unfairly. Friends and family can act unfairly towards a grieving person. Life is unfair. I know that I have been hurt by friends and family while I experienced this journey. There really is no excuse. I always thought before this happened that if something bad were to happen, I would be able to handle it with grace and poise and keep my pain to myself. That was not always the case, as it is not always the case with most grieving people. When a woman goes through the pain of labor and childbirth, it is usually followed by the most joyous event. When a woman is my situation goes through the pain, once the delivery is over, pain even more gut-wrenching begins. The pain of watching my son pass away. The pain of planning a funeral for my child. The pain of attending a funeral for my child. The pain of picking a casket and a headstone for my child. The pain of going to the cemetery and seeing a tiny, fresh mound of earth where my child was laid to rest. I cannot even begin to describe to you the pain I felt on the inside. I wanted to shut everything and everyone out. I thought if I could block everyone out, I could block the pain too. Because of my attempt to block the pain, I also blocked some of the best things about me. I have said before that grief is selfish, and it truly is. A bigger person would have been able to go visit friends and families who had babies in the months after, I couldn't, or wouldn't do it. The thought of going to the same hospital, on the same floor, in a room that looked exactly the same as I was in during the most agonizing and heart-crushing event of my life overwhelmed me. I could not push past the pain and even fear and bring myself to do it. There was one time in particular where I made it all the way to the hospital lobby before I began to almost panic. My throat felt tight, my chest hurt, my knees felt like jelly, and I couldn't seem to take a breath. I did the gutless thing and fled. I am truly sorry for the friends and family for whom I could not support in the way they wanted. It was never meant to cause pain, or anger. Other times I was so short tempered and lashed out. A bigger person would have more restraint. I didn't. I was angry and bitter. I was so tired from crying myself to sleep and then having nightmares when I did sleep. I was tired of cruel comments like "you should be over this" and "you still have two other kids". My fuse was short and there are times where I should have bit my tongue and had more patience. I am truly sorry for that. I still struggle with this sometimes. It seems like I have had a personality change since losing Mason. I struggle to find compassion when others need to vent about their children or babies. I struggle to find compassion for people who I feel should still talk about Mason to me. I struggle to find forgiveness for those that hurt us during that time. I struggle to let Noah and Mina be independent from Jake and I because the fear of losing them overwhelms me. I struggle to let Jamie and Linda go out of my sight with friends because again, I think I cannot survive another loss. I don't know if I will ever be the person I think I ought to. I think we are often times hardest on ourselves. I do know that I am a work in progress and that God has not finished healing me, nor has He finished molding me in his image. To my readers who are here for the same reason, I hear the pain and guilt and even shame in your stories and it hurts me. Yet, I can't tell you to let go of it and move forward because I still struggle with this. All I can do is promise to pray for you as you are molded, and to pray for me as well. There are people I need to seek forgiveness from, and people I need to forgive should they ever ask for it. There are feelings of fear, guilt, and anger I need to let go of and you need to as well. I don't know how, but I do know we will get there. We are not alone, we have a Father in Heaven who loves us, we serve a Risen Savior, and we have each other. We also have the greatest Healer of all whom by his sacrifice on the cross has allowed us to have the chance to be with our babies again. I am trying to dwell on that fact and allow myself to fully feel the joy that comes from knowing Christ. That is my desire for you as well. As always, please message me if you would like further discussion on any of these topics. I will be more than happy to respond offline. Thank you Father for all of these gifts.

chorioamnionitis and Incompetent Cervix

I have reading posts from a lot of women who are terrified of chorioamnionitis. In layman's terms, chorioamnionitis is a infection within the uterus during pregnancy. It is especially complicated for women with Incompetent Cervix. I am going to try to discuss it in easy to understand terms below. My hope is that it will provide information and maybe ease some minds.

The first reason it is complicated to a woman with IC is the confusion it causes while trying to get a diagnosis of IC. Because the infection can actually cause labor-including dilation, it can make doctors leery to diagnose a woman with IC. It really is a chicken or an egg problem. Did an incompetent cervix opening up allow bacteria to enter the utuerus causing the chorioamnionitis, or did the chorioamnionitis cause premature labor opening the cervix? Doctors are hesitant to perform a cerclage for future pregnancies if there is even a little possibility that something other than IC caused the dilation.

The second reason is the fear it can cause a woman after a cerclage has been placed. If infection occurs, the cerclage may have to be removed which would result in a second loss. Some doctors place the woman on preventative antibiotics, but most don't. Doctors don't like to introduce chemicals into a woman's body long term without just cause.

Now for my experiance. With Mason, the test results came back positive for severe infection in the uterus, ambilical chord, birth canal, and Mason himself was septic. However, you must remember that I was dilated for almost two weeks before I had the placental abruption which ended the pregnancy, and Mason's life. For my pregnancy with the twins, I had the cerclage, but was not placed on antibiotics. Infection did not occur this time. Anytime you introduce something into the birth canal there is a risk so I was very nervous about cervical checks, but my doctor was careful.

I hope this helps explain things and ease your mind. Feel free to post questions.

NICU

There is a new show on cable called NICU. It follows babies born who have to go to the NICU. It is a very informative show about what life is like for babies and parents who have to spend time in the NICU.

A lot of the babies were born prematurely. Some to mothers who have Incompetent Cervix. It makes me sad when I see babies who were only a few days older than Mason survive and go home eventually, but it also opens my eyes to the struggles these babies face. It also makes me realize how awesome our God is. My babies were born almost 6 weeks premature and did not have to go to the NICU. There are babies who are born only a few weeks early spending time there and I realize just how blessed we were. It is truly amazing what God had to overcome to bring Noah and Mina into this world healthy. I truly thank Him for his mercy and love.

I encourage anybody who might be facing prematurity, or has a relative facing premature delivery to check it out. I think the information both scientific, and emotional will help anybody facing this trial. When you see what can happen, it makes you realize what a miracle we are.

Questions From Readers about the Cerclage

I have gotten a lot of questions since being featured on the Faces of Loss site. Some I will not answer yet because I haven't gotten to that point in the story, but today I am focusing on the cerclage so I can answer them.

What kind of cerclage did you have?

I had the double McDonald stitch. It was done by a perinatologist at 15 weeks. I had an epidural for the procedure.

Did the cerclage hurt?

The actual procedure did not hurt. The epidural did, but it was bearable. The procedure is uncomfortable, but mostly for the fears that go along with it.

Were you worried about the risks of the cerclage?

I was terrified. There is a risk of infection and a risk of them breaking your water during the procedure and the pregnancy ending right there. However, to go without the cerclage meant certain death for my babies so there was really no choice.

Who was your OB/GYN and would you recommend them?

I had a fabulous OB who took my case very seriously seeing me every week through the first and second trimester. I do not want to post his name on here because it reveals where I live to the internet world, but if you send me a message with your e-mail I will send it to you.

Was there any pain after the procedure?

The was some cramping and occasional sharp pains, nothing too bad though.

How about pain long term after the removal?

I did have sharp pains afterwards that continued until my hysterectomy. The were mainly sharp stabbing pains if I sat wrong, or during intimate times. I think maybe it was from scar tissue. Because they took my cervix as well during the hysterectomy there is no more pain.

Do you think bedrest was necessary?

I 100% think it was! I was dilated to the stitch at 22 weeks with funneling when they applied pressure to my abdomen. Funneling is where the cervix tries to open up when pressure is place. Bedrest took a lot of pressure off of my stitch and my cervix. Although it was miserable, I truly believe it saved my babies.

That is all for this round, if you have further questions about anything feel free to send them to me and I will try to get them answered in future blog posts. Have a great weekend!

Blogs I Love

Here is another blog I love to read. The blog is called "My Expected End". Marie is a teacher who has lost two babies due to Incompetent Cervix. She is trying to get the abdominal cerclage which should help her to carry closer to term. Not all doctors are willing to do this and she is facing difficulty. She tells her journey through infertility, grief, hope, and tears in a poignant way that hits very close to home for me. She through it all retains her faith and you can literally seem to feel her need for Jesus through her struggles. I hope you will all find it as dear as I do. I highly recommend it for those of you with IC. Here is the link.

http://myexpectedend.blogspot.com/

Time to break out the chocolate. Warning-Discussion of Reproductive Systems

Well today has definitely not been one of the best days. I am going to tell you upfront that I am in a funk as I write this blog. I am sad, a little scared, grumpy and generally mopey. I am also going to talk frank about "female issues" so if you are sensitive to that, stop right here and come back later.

I went to my OB/Gyn today. I have essentially been having bleeding since I delivered the twins about 14 months ago. We did a D&C and it only helped for a few weeks. It was not always heavy, but it was almost always there. Sometimes it would stop for a day or two, but it always came back. Sometimes very, very heavy. Any activity would bring it on, when it was heavy I would be so tired and low energy. It was just not a pleasant way to live.

The problem that we ran into was that I have a clotting disorder. Any hormones I could take would greatly raise the risk of blood clots for me with potentially deadly consequences. So that ruled out being able to treat the bleeding with something like birth control pills.

Today my OB made the call that a hysterectomy was my last option. 3 days after Valentines Day I will lose the ability to have more children forever. I know I already had my tubes tied because I was informed the chances of me carrying another baby to term were not good at all and I couldn't face another loss. Deep down I always held a little sliver of hope that one day maybe 5 or 10 years from now there would be a break through with Incompetent Cervix that would allow me to have another child.

I know what I sound like, I have four kids, why would I want another one? I am not sure I do, but I don't want to know that it could never happen. I have loved every moment of the babies lives so far. All four of my children are such blessings and I am just frustrated that the option has been snatched away from me. I thought I wouldn't care, I had known it was coming, but I do. I can't even explain why I am so sad about it. I probably would never had tried to have another child, but at least the option was there. Now I am going to be sterile, before I'm even thirty. I just found out today, so maybe I just need a little time to adjust to the idea... I don't know. I have talked to a couple of other women who said they felt the same way so I guess I am not alone in this.

The good news is that my OB is going to do the surgery robotically (see picture below). It will mean a shorter recovery and less pain. I will still be fairly out of commision for around two week. I will also have lifting restrictions and driving restrictions. In addition, it will be my first overnight away from the babies.

I know this has been kind of a pity party, but it feels good to get it out. I am sure I will do better once I have had some time to suck it up. In the meantime, time to break out some chocolate.

The DaVinci Hysterectomy

Alpha-hydroxyprogesterone Injections (17P)

During my pregnancy with the twins, I had weekly injections of Alpha-hydroxyprogesterone (17P). 17P injections are used to prevent preterm labor. They are most recommended in singleton pregnancies because there is not as much promising data to show that they are effective in twin pregnancies, however in my case we were operating under the better safe than sorry philosophy.

17P is a specialized for of progesterone. It has been show to lessen the chance of a woman having an irritable uterus. Irritable uterus's have a lot contractions that are just strong enough to change the cervix. The injections basically keep the uterus calm and happy.

It is usually started at 16-20 weeks. I started it around 13 weeks because of the twins. It has to be done by a medical professional because it is an intra-muscular shot. It is hard to find. Most women have to order through online services. I found one pharmacy in town who carried it. The problem is that it is a mixture of things and has to be compounded at the time of purchase. In my town there is only one pharmacy who makes it and it is quite a ways from my house. Because of my bedrest, Jake would have to make a trip monthly to the pharmacy to pick it up, and then I would deliver to my OB at my next appointment. The OB stored the vial there and would administer the injections to me weekly.

The shots were given to me in my hip alternating sides every week. It is a very thick medicine and takes a while for the nurse to push in, and it burns. However, my personal opinion is that it worked. In my case, the first few days after the injections saw much less contractions than the last day before receiving it again. It is expensive and most insurances will not cover it yet. It is about $70 a month. We had to pay that out of pocket. There were few side effects, mostly just my hip hurt for a day or two. Sometimes I would bruise, but I was also taking blood thinners as well. I would say it was worth it. Just google 17P and you will find other women's stories as well. If you are local to me and want the name of the pharmacy, just e-mail me and I will send it to you. If you are not, you should be able to find an online pharmacy through your peri.

Multiple Blessings

I have just learned that a friend on the IC forum just lost her third baby to Incompetent Cervix. She lost the first baby very close to how we lost Mason. Then she had a cerclage with her second one that failed, then she had a cerclage, and when that one started to fail, another one and still lost her baby.

I can't imagine going through the loss of a child multiple times. I lost a piece of my soul the day Mason died. I imagine it would feel like being pulled apart little piece by little piece. No one can explain medically how Noah and Mina are here. When I had the major bleed at 12 weeks the doctor's were concerned, when I started dilating at 22 weeks even with the stitch we were given steroid shots because it looked very likely I would have them anyday, but day after day went by and they held on. We made it all of the way to 35 weeks. It had to be a God thing. There is no other explanation. As I hold them tonight, I pray for Hope and I ask that one day she can have her miracle too.

Our doctor looking down at Noah and Mina moments after their birth. The relief and joy on his face says it all. This is one of my favorite pictures from their birth.

Noah and Mina's Story-The Cerclage-Open content warning

Ok, so we got through the first trimester in the last post. I must admit at this point we were all unsure whether or not this pregnancy would make it. The major bleed that I had at 12 weeks was continuing. No doctor would do a cerclage while the woman is bleeding. A cerclage is a purse string style stitch through the cervix that is pulled tight to keep the cervix from being able to dilate. If a woman is bleeding, there is a big chance she is miscarrying and the cervix will need to be open in order for her to do so. I was told that a cerclage would have to wait until the bleeding stopped.

This news was devastating because we knew I could not carry the pregnancy without the cerclage. The problem is that the further along you do a cerclage, the higher the risk of losing the pregnancy because of complications from the procedure. The optimal time is between 12 and 13 weeks. They won't do it earlier because most miscarriages occur in the first trimester. Any later and complications occur such as your water being broken during the surgery and causing you to lose the pregnancy because of the procedure being do to save it. My scheduled cerclage was put on hold and that was scary.

We had known that I would do bed rest in the last trimester. However, with the loss of blood and no end in sight, my OB put me on strict bedrest effective immediatly. I could lay in bed or on the couch, but that was it. I was alloted a 10 minute shower every other day, and allowed to microwave meals. That was it. After a week of bedrest the bleeding began to slow. It took three weeks, but it finally stopped. Finally at 15 weeks and 3 days the cerclage could be put in.

It was a nerve wracking day. The risks to the babies had been put to me in a open, but terrifying format. I was so afraid that the cerclage would hurt them and I would lose my babies that day. I was not ready to say goodbye. Also, the would be giving me an epidural for the procedure which was just daunting. An epidural when you are in massive pain from labor does not sound that bad, but getting one when you feel totally fine just seemed more scary.

I was prepped for the OR. Apparently not a lot of these procedures are done each year as this condition only affects 1% of women. This made me the freak of the day and everyone wanted to see this. I had interns, nurses, residents, and other OB's that wanted to watch this procedure. When I agreed to let them observe, I had no idea what I was going to be allowing them to see.

I was wheeled back for the procedure and Jake was left to worry in the hallway. The epidural was given-Owww!!!! and I was laid on the table. Once it was established that I was numb, my legs were strapped into stirrups that were hanging from the ceiling and spread wider that I have ever been able to do without an epidural.

At this point I am flat on my back with my legs open for what felt like the whole world to see. I remember hoping I did not have any underwear fuzzies anywhere embarrasing. Then the nurse takes the cover off the tools that they would be using. It looked like midevil torture devises. There was one tool in paticular that looked like a hooked spatula with a metal ball on the end. I made the mistake of asking what it was for and I was told it was a weighted speculum. Basically they insert the hook part into your vagina and the weighted metal ball pulls down opening you up for the doctor to get in there. I thought that's it, I will never be the same after this and felt a little sick to my stomach. After that I did not ask any more questions.

The instruments were in place and the procedure began. I held my breath the whole time, praying that my water would not be broken. At one point I heard dripping, but was reassured that it was just blood. I have never been so relieved to be told "Don't worry, you are just bleeding.". After the longest 30 minutes, they announced that it was done. A sonogram maching was brought over to make sure the babies heartbeats were still good. They were. I was wheeled back to a pale Jake to begin recovery.

Not begin the part where the epidural wears off. I began to have the worst itching imaginable, but I couldn't feel the scratching. So I would itch, I would scratch and no relief. Then I began to have terrible cramping, but I was told this was normal. After several hours I was told everything was fine and released to go home back on bedrest. I was not totally out of the woods because of infection causing labor, or the stitch being broken, but the babies were as close to lockdown as they could get. Next time..more about the second trimester.