I too have followed our journal from the very beginning. When I read your post the other day, I cried as if she were my own. I'm so sorry for your loss. Words can not express how I feel right now, but I wanted to let you know that I was thinking of you and that you were my in prayers.
You did an amazing job on the slideshow.
my god it seems like ages since I have been back here. I think one day soon I will start at the beginning and read all of my posts.
I think I'm going to keep this journal going until Dion and I decide its time to TTC again and this will sort of just be my post partum journal for now.
its 1 month, 3days since we lost Kylie and right now I'm just really anxious to get to November 4th for the follow up appt to see if they were able to get any insight on what happened and figure out what our next steps are.
I can not read this poem without crying.....
What Makes A Mother
I thought of you and closed my eyes
And prayed to God today.
I asked what makes a Mother
And I know I heard him say.
A Mother has a baby
This we know is true.
But God can you be a Mother
When your baby's not with you?
Yes, you can He replied
With confidence in His voice
I give many women babies
When they leave is not their choice.
Some I send for a lifetime
And others for a day.
And some I send to feel your womb
But there's no need to stay.
I just don't understand this, God
I want my baby here
He took a breath and cleared His throat
And then I saw a tear.
I wish I could show you
What your child is doing today.
If you could see your child smile
With other children and say
"We go to earth and learn our lessons
Of love and life and fear.
My Mommy loved me oh so much
I got to come straight here.
I feel so lucky to have a Mom
Who had so much love for me
I learned my lesson very quickly
My Mommy set me free.
I miss my Mommy oh so much
But I visit her each day.
When she goes to sleep
On her pillow's where I lay.
I stroke her hair and kiss her cheek
And whisper in her ear
"Mommy don't be sad today
I'm your baby and I'm here."
So you see my dear sweet one
Your children are OK
Your babies are here in My home
And this is where they'll stay.
They'll wait for you with me
Until your lesson is through
And on the day that you come home
They'll be at the gates for you.
So now you see what makes a Mother
It's the feeling in your heart.
It's the love you had so much of
Right from the very start.
Ok so this was going to be my post partum journal also but I haven't felt like writing all my trials and tribulations down yet. Maybe this appt will start it up again but probably not, this journal sort of feels like it should be just for Kylie. Anyways, here's the latest update...today was my 6 week follow up appt with my OB....
Pathology reports... Kylie’s autopsy didn’t find any defects or infection, she was healthy and the autopsy agreed with all the findings of the amniocentesis. The umbilical cord showed signs of blood clots and was also unusually long but couldn’t tell if that was the initial incident or a secondary one that may have happened after my water broke. My placenta was abnormal in appearance but they were only able to run basic tests not detailed ones on it, my OB did not know why. She stated that when she talked to pathology they seemed very certain that there was “something” wrong with the placenta but couldn’t be sure at what it was.
I asked about the cause and unfortunately, there still isn’t one. Kylie’s early arrival can be blamed only on Premature Rupturing of Membrane’s (my water breaking early aka PROM). She said that only about 30% of the cases she has seen are actually ever ruled “because of ________” most of the time, unfortunately, its just your body, it’s a fluke and many women go on to have normal pregnancies. I was specific to mention if she thought it was caused or in any part due to the amnio and she of course couldn’t rule it out BUT did say that because there was no infection found and the “time limit” on the puncture had expired she really didn’t think it was due to the amnio, she “felt” that after talking to pathology and reading the reports that it was because my placenta was not functioning properly and my body decided the pregnancy wasn’t viable. She still had no cause as to how that would make my water break, again just possibly a fluke.
I think going into the appt, I really wanted an answer as to WHY ME, what did I do, what happened, what could I have done differently etc but it seems almost to me now that NOT having something wrong with my body is almost better. It seems better somehow that this was a “fluke” instead of my body being messed up or me doing something to make that happen. Although its hard to still not know.
Info about the future…. To help rule out any issues with my body or genetics, I have to fast for 8-12 hours and will go in tomorrow morning for a full blood workup (about 9 vials of blood, Awesome). They will be testing for things like lupus, certain proteins in my blood and any posible clotting issues I might have (noted because of the umbilical cord results) those tests will take about 2 weeks to get results back but should rule out almost every autoimmune disease to cause any issue in pregnancy. Also (and this part sucks), although rare she said she would like to see if my uterus is shaped correctly, to rule out the possibility that maybe my uterus wasn’t expanding properly and ran out of room, causing my water to break early. She said on occasion a woman can have a uterus shaped like a unicorn horn or a heart. I have an appt next week for a procedure called a Hysterosalpingogram (HSG) which is basically where they stick a catheter up your vagina, inject radioactive dye into your uterus and fallopian tubes and take xrays, this will be done at my hospital through the radiology dept, I’ve read that it takes about 5 minutes and can be painful (although sometimes only uncomfortable, again Awesome). It can not damage your uterus or tubes and is often used to help with IVF. Results from that procedure are often immediate if the doctor is available to discuss his findings with me. This will be able to look inside my body and make sure the uterus is looking normal.
So I guess in general, what I’m saying is that to rule out a bunch of future issues and feel comfortable possibly trying to conceive again, we won’t know anything for 2 more weeks, so I wait. anxiously and impatiently wait but glad to have at least a few answers.
Also, my doctor was concerned about the return of some heavy bleeding. It had stopped for about a week and in the last 10 days has been bleeding again. She said it could be my period but seemed heavy for just that. They did a vaginal ultrasound today to make sure I didn’t have any placenta or tissue left and would need a D&C (whew, I don’t), the ultrasound looked good except for some pooling of blood, she gave me a prescription for some meds that would make my uterus contract to “force” out all the rest of the blood. If I don’t quit bleeding, I can’t have the Hysterosalpingogram (HSG) until it stops and I’ll need to come back in a week to see her but for now, all looks okay. Until all bleeding stops, still no tampons or sex.
Trying To Concieve (TTC) in the future…she said that as long as the blood test results and HSG don’t show any abnormalities, she would clear me for TTC after my first “regular” period. So hopefully next cycle, everything will be good to go at least with my body and we could be ready to make a baby. My head may be on a slower pace but at least I would know that when I was ready, everything else would be waiting on me. I've been charting to try to get back into sync with my body but so far everything has been really wacky so no luck there. I’ll be a nervous freaking wreck but I know this is what I want, eventually, I will be a real mom. She said she could discuss options for a future pregnancy (high risk, blood tests, ultrasounds etc) after we got these blood tests and HSG results back to make sure we weren’t going to be faced with other issues.
My doc sat and talked with me for over an hour, laid all my options on the line as far as testing and such to help in future pregnancies, seemed genuinely sorry for what had happened and did a full physical exam to make sure I was healing well and getting back to normal. I feel blessed to have found a doctor that is so great and a hospital I want to deliver at.
I'm sure I'll update here after my next appt. Thank you to everybody for your continued love and support!
So I had my HSG procedure done today.
First, it took me 30 minutes to try to prove to them that I wasn't pregnant and to still please do the test. Apparently they only like to do an HSG between Cycle Day 6-12 (since your exposed to radiation). Well I haven't had a period since May and my m/c was late Sept and because I wasn't bleeding last week after 8 very long weeks Dion and I FINALLY were able to *ahem, do the deed, one time, using a condom. Soooo they didn't want to do the test at all, with less than .001 chance that I was prego (I tried to explain that I was charting and using ovulation kits and that I hadn't even ovulated yet so there was like ZERO % chance but she just wasn't getting it) anyways radiology called my OB, who came down to give me a urine test, just to make sure (lame, even if I was prego, it wouldn't have shown it anyways and OB and I both knew it but we went along with it so we could get the effn test done today) low and behold...negative...shocking! lol So they decided they would do the test. Freaking finally.
The procedure was FAR less painful than I could have imagined. In fact the only part I felt at all was the speculum in my va-jay-jay, just like a pap only it lasted like 10 minutes instead of 2. She cleaned my cervix, inserted the cathedar and injected the dye and I barely felt any of it. I've got some cramping now like 2 hours later but its like period cramps, nothing I can't deal with, no big deal
Sooooo the doctor is explaining everything to me (not my OB, the radiologist) and because I read about the procedure and know that its usually used in infertility treatments I know some of what she is saying is probably bad....
She's having me roll my hips left to right because my fallopian tubes never inflated with dye. Not at all, not during the whole procedure, clearly this is bad but she just sort of mentioned it under her breath like I wasn't supposed to know. I could have broken down in tears right there, praying the whole time, open up little tubes, please open! They never did. Which still seems strange to me since I was able to get pregnant easily with Kylie. I still don't know what this means for the future because she didn't discuss anything with us.
Also she mentioned some abnormal filling defects, which sort of looked like splotches in my uterus, like they weren't filling with as much color as the rest of my uterus, I again have no idea what this means but she mentioned it, so I am.
The only good thing that I could see is that I "think" my uterus looked pretty normal in shape, again nothing was discussed with me, so I can't be sure but I hope and pray to god that its normal and it looked fairly normal "blobish" I guess.
I'm pretty much feeling doomed and hopeless at this particular moment, the things I was worried about going into this procedure really didn't come up and things that I never thought to even concern myself with, seem to be invading my brain. What if Kylie was my only shot, what if my body rejected the pregnancy because I'm all messed up in there and shouldn't have ever been able to get pregnant in the first place, what if I can't even conceive a child or carry one to term. Do you know how devastating that would be for me? The only thing I've ever wanted to do, since I was a little girl playing house, was be a wife and mother. What if I can't?????
I feel right now like its one issue after another and no one can give me one single answer. Just tell me WTF happened and how can I fix it now! I can't a straight answer out of anyone. Its all just very frustrating, confusing and damaging to me. I feel like crawling in a hole.
I know this seems over the top since really I don't know any answers yet and maybe its nothing and its very early still into any testing really but I just feel doomed to fail somehow.
Oh and on top of it all, I'm bleeding again, GREAT! I had like 2 nice days and now I'm bleeding pretty heavily again. Which is also a bad sign, I'm going to give it until I get home from work but the radiolgist said I should have some spotting, but no heavy bleeding and that I should call if I has some...yah...well I am but maybe it will go away. I'll call in a few hours if it doesn't. blah....whatever.
My god, if there was ever a time that I could use a glass of wine (and by glass I mean several bottles) it would be now.
Oh my...I don't know what to say...I am sorry..so lame yes but my heart is with you and yours.
Results are in.
Blood tests- I am negative for all auto immune diseases and we are still waiting on the blood clot tests to come back, results probably next week.
HSG- It showed abnormalities. There seemed to be pockets of "something" in my uterus, causing filling issues. The doctor mentioned they may be polyps but would not know until a hysteroscopy is performed. This procedure is done with a camera into my uterus to actually see what the abnormalities are, it will be performed along with a D&C to remove the polyps (if thats what they are) and because I have also been bleeding still for the last 8 weeks. A D&C is a procedure done usually after a miscarriage to scrape the uterus walls of all tissues.
The other issue we are now facing is that my fallopian tubes were shown to be closed during the HSG, so the other surgery I will be having is called a Laparoscopy, an incision will be cut near my belly button and a camera will be inserted to look into and at my fallopian tubes to see any possibly causes for them to be closed. I assume they try to open them at this time, but I don't know for sure I guess.
The only positives...these tests are also performed for people who have infertility issues so I suppose in terms of a future pregnancy at least we will know that our doc was proactive. I will be having these surgeries on Wednesday at Avista under local anesthesia, recovery time is about a week.
Can I just say.....this sucks!!! I never in 1,000,000 years thought I would be having to deal with this crap. I'm nervous and worried but more so scared. Please let this fix me. It's becoming a very scary realization that I may not be able to have children of my own or without help. I don't know that I'm ready to accept this yet. I won't jump to conclusions and I have faith in todays technology and modern medicine but this is a very real possibility and I guess I just want it to be known that my dreams may be slipping away, for anyone who has ever faced this, I don't know how you got through. I really don't.
so just for reference here are the medical descriptions for what's going on
This is the HSG, that I just had last week...
a hysterosalpingogram or tubogram, helps determine if the uterine cavity is normal in size and shape, and whether the fallopian tubes are open or closed. This test is an x-ray and uses an iodine-based contrast agent which is injected into the uterus through the cervix.
these are the tests I will be having next week...
Hysteroscopy and Laparoscopy
These surgical tests allow the doctor to look inside the uterus (in the case of hysteroscopy) and at the outside of the uterus, ovaries, and fallopian tubes (in the case of laparoscopy). Conditions including uterine polyps, fibroids, adhesions, and endometriosis can be diagnosed and surgically treated with these techniques.
Of course I had like a million blood tests already and we are only waiting on a few results.
Feel free to ask any questions, I could use some positive thoughts and prayers!
I am so sorry you have to be going through this - I just hope and pray that it brings you some answers. I am praying with all my might that you'll be able to have children of your own one day - one day soon!
Good luck, and I hope you can take it easy after these procedures - lots of us are thinking of you!
Jennifer I am so sorry. That is my #1 fear of when DBF and I offcially start TTC. It's like the worst feeling ever aside from losing a little one but not being able to have one.
One thing keep in mind, Everything happens for a reason. As hard as it may be, maybe you losing Kylie is a sign that something is wrong and that it needs to be taken care of as soon as possiable. I don't mean to scare you and I really hope it is nothing. But I always say Everything Happens for a reason no matter what it may be, good or bad. There was a reason it happened.
Ok so surgery went well. it started like an hour late so the waiting was definitely the worst part plus I was STARVING since you can't eat after midnight and it was already like 2:15 before they wheeled me into the operating room. So here's what was discovered, now Im relying on my hubby for these details because I do not even remember talking to my doctor afterwards.
They did the hyteroscopy and found nothing in my uterus, no septum, no tissue, no polyps, no current bleeding. YAY! In the pics my husband saw the doc pointed out one little white splotch on my uterine lining and said that it could have been the cause of the late bleeding since it didn't seem completely healed but it wasn't cause for concern now.
She did do a D&C, just to make sure that I got a "fresh start" and wouldn't have any other bleeding or infection issues.
The laparoscopy showed my ovaries are looking great, that both of my fallopian tubes were (yes, were, i'll get to this in a sec ) blocked and that my uterus from the outside was a very normal typical shape! YAY!
She decided to do a chromo tube ligation (or something, again I don't remember) but basically it was to shoot dye directly into my tubes to get them to open up and see where the blockage occur. The GOOD news is that they were able to reopen one of my tubes and the dye flows through very easily with no hang ups! YAY!! but that the other one is still blocked and dye would only go into it about half way.
Thats ok though, from what my hubby told me that she said, it shouldn't hinder my ability to get pg, it just may take a bit longer.
So as a sort of recap:
~There is no medical cause or reason for me to have lost Kylie still, which I've come to terms with.
~We are still waiting to get back my blood clotting tests which would be the last step, those results will be in next week
~I do have 1 open tube and will hopefully be able to concieve on our own even if we only have a shot at getting pg every other cycle, at least its a chance and that gives me GREAT hope!
~No uterus issues or ovary issues, another good sign!
~I have an appt in 2 weeks to follow up with my doc and i'll get all the info first hand and ask a bunch more questions that will certainly arise from all of this.
From this point, The doctor suggested that we wait at least 2 cycles to try to concieve again. So that would put us sometime around January. Seems like FOREVER away right now and I just really don't want to wait but I may also talk to her about the harm in just waiting 1 good cycle, just in case I ovulate from my good tube in December. So *hopefully* sometime in December I'll be !!!
The pain isn't too bad right now honestly, the incision sites hurt and there is a lot of cramping and overall soreness but its better than I thought it would be, as long as I'm laying down, well and of course I have good meds also. I should bleed for the next 10-14 days from now.
So I guess that's it! I think I'm happy about the outcome of this one, of course I wish everything was PERFECT but its not so I'm just glad I have a chance! For now, I can deal with that.
Questions? Thoughts? Concerns? anything you think I missed that you'd like to know about?