Endometriosis, Infertility, Miscarriage and Life in general
I am 32 years old, living with stage IV Endometriosis, possibly adenomyosis, PPD and struggled with infertility for almost 4 years. I am a mother to a son that was born at 18 weeks and too precious for this earth; and now a mother to a son born in August 2011. By journaling here, I hope to benefit both for myself and for others that are dealing with this disease and fertility struggles. Thanks for visiting!
Our rainbow baby
What is a "Rainbow baby"?
I found this description online. I loved it, and, I wanted to share!
"Rainbow Baby" is the understanding that the beauty of a rainbow does not negate the ravages of the storm. When a rainbow appears, it doesn't mean the storm never happened or that the family is not still dealing with its aftermath. What it means is that something beautiful and full of light has appeared in the midst of the darkness and clouds. Storm clouds may still hover but the rainbow provides a counterbalance of color, energy and hope.
How exactly does one answer the "So, do you have children" question? I'm not much for bringing down the mood of the room. But, at the same time, I feel immense guilt denying my son and just shaking my head "No". So, what's better? Living with the guilt or making someone feel bad? Now, if the question just went on and on and on and on, then, I would probably say something to stop the madness. But, I just don't know what to do when someone asks me this. It's only happened once since we lost Wyatt, but, I know it will come up again...
I'm 3 days late now. So, this AM I peed on a pretty expensive stick. To no surprise, a big fat negative (BFN). All the while trying to hold myself together to not vomit. EVERY MORNING and mid afternoon for the past two weeks I've been having these waves of nausea. So, thanks endo. I appreciate the pregnancy type symptoms. That's just AWESOME...let me tell you. All the while causing painful ovary twitches and occasional cramping.
I should have known better.
Still waiting. I thought I started spotting this AM, but, it was just a trick apparently.
It's supposed to snow/sleet/ice a good bit here tonight. Would be a perfect weekend to bundle up with my heating pad and bottle of ibuprofen...I'm ready.
Emotionally, I'm ready!!!
And, anxiously looking ahead to next week (maybe?!?!) for my hydrosonogram.
Yes period, I am talking to you. I know you are looming. I've felt you coming the past two weeks. So, how about just show your ugly face and let's get this over with, mmmkay? I'm tired of wondering what rain of pain you have prepared for me.
Here is a beautiful poem that I was given the other day and I wanted to share. Author unknown.
An Acorn fell from the tree, Landed with a plop onto the ground and settled there, Prepared to grow A squirrel, storing food for winter, Grabbing the acorn, with his paws, Hastily scampered away to his nest. A tree that almost was.
Snowflakes falling to the ground, Gathering together upon the mountain A blanket of white, prepared for Spring. Parched earth, dry for lack of rain, Awaits the rapidly melting snow, And drinks heartily, consuming all. A stream that almost was.
A pencil, paper with lines, With notes partially filling the page; Words written down, prepared for singing, A tune, a psalm of praise Floating inside an old saint's head; Work calls to him, and time flies- A hymn that almost was.
New life growing within; Heart, limbs, and identity developing, Legs and arms moving, prepared for living. Happy parents, anticipating the future, Their hearts and home making ready, And God calls Home the little soul- A child who almost was.
Someday, in the realms of Glory I shall celebrate-
I shall sit under the tree that almost was; Beside the stream that almost was; Sing the hymn that almost was And hold in my arms the child who almost was.
There are some bills out there trying to be passed in MI that may very well have some unfortunate implications for those of us who suffer fertility nationwide. Please read this from Jeanne's blog for more on the topic.
I try REALLY hard not to DWELL (difference in dwelling and it being a part of you) in the past. But, today I was reminded that I should be in my third trimester now. Thanks facebooker status updates. Wow. Seems so strange. I wish that was a milestone I was celebrating today instead of mourning.
So, the internet is down at the house (yes, my husband IS a computer guy-dont ask). So, I'm bringing this hello to you from my blackberry-so, excuse the typos!
My story-the skinny version! April 2007-TTC
Diagnosed with Stage IV endo in Feb 2oo8 during exploratory lap
Lupron for endo treatment March-June 2008
Recurrent endometrioma on right ovary found on US for fertility work up -Dec2008
Femara cycles, Dec 2008 and Jan 2009
Pain back-2nd lap March 2009 (main goal to preserve fertility)
IVF#1- April-May 2009: "Chemical pregnancy" (I HATE that term)
We lost our son Wyatt at 18 weeks into the pregnancy due to PPROM and a large retroplacental hematoma. Saddest, yet most blessed day of our lives bc we got to meet our son and hold him, although his soul was already in a better place. We miss him everyday and will never forget our first born child!
Now-back with my beloved RE. Hydrosonogram to be scheduled within the next few weeks to check for scarring due to retained placenta after the delivery. FET is probably going to be Feb with our two embies in the freezer.
Yipes! That was a lot to type on this teeny keyboard! Thanks for visitng my blog! More detailed posts can be found under my blogs "history".
Sorry I've been MIA...I really haven't been in the blogging/writing mood. Just wanted to type a quick update. The appointment with my RE went well. I love them. I do. She is going to consider running the tests, so, we'll see how that turns out. She wanted to get a few more pieces of information from the OB's office and to talk with the maternal and fetal med physicians. Waiting to hear back about that. It was great to talk with her and really go over everything. We had never really gotten into the "nitty gritty" details of losing Wyatt. We went from going to the OB's office for a pap to having to make very crucial decisions, then grieving and mourning. Just now are we in the right frame of mind to really begin piecing things together. As "together" as it will all get pieced that it.
Premature rupture of membranes was the ultimate cause of the loss of fluids. Why? Have no idea. The hematoma may or may not have played a role in them breaking. She's looking more into that for us as well. Apparently the hematoma was near my cervix...which didn't seem good from our conversation. But, she said that the hematoma didn't necessarily cause it. They'll never know really. Apparently, though, having my membranes prematurely break will put me at higher risk for future pregnancies. Fun...right?!?!
We talked about FET, Femara timed intercourse cycles, and, just trying on our own for a while. A full IVF cycle is out for us until next year if we choose or need to go that route. I will have another hydrosonogram in the next few weeks after my period. My RE is concerned about possible scarring from the retained placenta. She said it doesn't happen often, but, that she definitely wanted to check it all out. And also she wants to take a look at my ovaries. I'm very eager to have the scan done.
I've started having pains again. This time it's actually IN my uterus/cervical area. So, definitely eager to get that sonogram done! My ovary has been pretty painful too. Gotta love endo, right? Daym.
Okay, this was WAY longer than I had anticipated. More next week when I can feeling a bit more perky. :)
We finally got the call about the test results we've been waiting on from Wyatt's cord blood...only because I harassed the OB until they called to get them from the hospital ;) Whatever gets the job done, right?
Everything came back 100% normal-no chromosomal abnormalities. While this obviously has us very relieved, we are also left with so many questions unanswered. I would never in a million years want anything to be wrong with our beautiful Wyatt. But, I was kinda hoping it wasn't all on the fact that my body enjoys to revolt against me.
So, we are left with the theory of the hematoma. More specifically a "retroplacental" hematoma. Why it happened or never went away is anyone's guess. There are theories, but, nothing that is concrete. It ranges from " it's just one of those things" to my endometriosis and it's possible role in interfering with implantation. The uncertainty is enough to drive anyone insane.
The rest of the work week was okay. No major hiccups. I never stop thinking about Wyatt. The thoughts get easier though. The pain is still very there-deep in my gut. I know that gut-wrenching sorrow will never fully go away. I don't expect it to. I don't really want it to either. I heard something very wise this week about how someone coped with their loss-when the time comes that you need to grieve, immerse yourself in that moment and grieve so you can move on until the next moment arises. Try not to push these moments aside and really just let them take you over. It really does help-pretty much sums up how I've been coping and grieving. I just thought it was interesting put into words like that.
We have an appointment on Tuesday with the RE...to discuss what happened and what is next. We won't be doing much this year in the way of IVF procedures, except for maybe a FET (frozen embryo transfer). We have two beautiful frosties waiting on us. We have maxed out our insurance on fertility procedures. It really didn't take much. Really. Next year I can roll over to my insurance which will cover an additional $25K if needed. But, that's another year. It'll be interesting to say the least. I have to re-invest faith in my body and it's capabilities. Whatever they may be. We'll see how the apt goes. I'm glad to be going back to such an amazing team. I need that familiarity and compassion right now.
And, I'm still here to tell about it. As are those around me ;)
The first day back wasn't too bad. I was in tears before I even made it in the door. Only one person caused more to erupt, but, not by being dumb. Just with a simple hug. Mostly I was "avoided"; I guess it's really hard for people to know what to do or say? A co-worker emailed me today and said anytime I needed to talk or share pictures or whatever, that she was there...and that she was sorry she didn't say anything before then; she just wasn't sure what to say or not to say. It was a wonderful email and I very much appreciated her reaching out.
I just want people to acknowledge I had a baby and that Wyatt is and always will be a part of my life ("I'm sorry" would be sufficient). I don't want them to ignore it, or, me. We'll see how the rest of the week goes. Maybe they are giving me time to settle in.
I did have one of our pharmacists today ask me how the baby was, while pointing at my belly. Apparently he was out of the loop and unfortunately for him I was the one to break it to him. The sheer horror on his face was pretty unbearable. You could tell that he was just sick about having asked when I told him what happened. I was able to reassure him it was "okay" that he asked, and held the tears until I was able to be alone.
Lots of hurdles to overcome, but, I'm surviving out there. Not looking forward already to next week as I know I will HAVE to have some face to face time with a girl that is due the day after I was. A girl who REALLY likes to flaunt her pregnancy. I'm hoping she'll have the courtesy to tone it down some.
So, here I am. Thanks for thinking of me everyone!
Oh. Called my OB on Monday to see if the results from Wyatt's cord blood was back. No such luck. Seriously, it's been the 4-6 weeks. BRING IT. I'm getting really anxious and beginning to wonder if the hospital lost the blood. I would be absolutely SICK if that happened. My mom works in a lab and is theorizing that since it was all over the holidays that they are probably behind. I sure hope that is the case and we get everything back soon. I would really love to have the results when we go talk with the RE next week. So, keep your fingers crossed! I'm just ready to KNOW...whatever knowledge (or lack there of) that there is from the results.
I'm VERY nervous about how the day will go tomorrow and throughout the week. I don't know what to expect. Everyone there knows I was pregnant...everyone. I was 18 weeks. Of COURSE people knew.
A lot of my co-workers have been fabulous during this time. Many brought food over to our house during the first three weeks after we lost Wyatt. They sent cards, flowers, and special gifts. But, even with as amazing as most of my co-workers are, there are always those few. Heck, even being amazing doesn't mean you won't say something stupid.
And, as much as I am afraid of people saying something stupid, I'm more afraid of people just completely ignoring what happened. I need recognition of Wyatt. He is my first born. My son. I don't want people just pretending he never existed and that I haven't just gone through something very traumatizing in my life. Most of the people my husband works with pretty much ignored everything and just pretended that life was honkeydorey. Yes, life goes on, but, that doesn't mean we want to pretend the past isn't our past.
So, here I am. Anxious as hell and wondering what these next 5 days will bring. I know I will survive. I know eventually it'll all feel "normal" again (a new normal). I can and will do this and carry on. But, just because I am carrying on from the outside, doesn't mean that the hurt isn't there on the inside.
It's a bittersweet greeting to welcome the new year. It's going to be a lot different of a year than we expected. Instead of welcoming in a new part of our family into this world, we are still grieving and saying goodbye. All the while trying to hold on to hope for the future. A future we shouldn't even be contemplating at this point. But, we cant change the path of our lives. We can't stop living. We have to try to look ahead and live each day.
2009 was both a blessed year and a terrible one at the same time. Most of it we are glad to leave behind. Some of it will never leave us (and we wouldn't want it to). Our past is what makes up who we are. It's woven and ingrained into our lives and helps to shape our future. A future we sometimes wish we could peek into to know what to expect, but, we unfortunately cannot. Or, maybe that's for the better that we can't.
We have many hopes and dreams for 2010. As you can imagine our biggest dream is of a family. Will 2010 be the year that our dream finally comes true? It was supposed to be. Maybe it still can be.
Here's to hoping for a wonderful 2010. For us, and, for you all!