I am so sorry it took me so long to update my blog, but something just didn't feel right about sharing our news and all the details until now.
I will start way back from the beginning as I know a lot of my TTC sisters want to know all the details, but the one thing I hope you take away from this, is all the things we did to advocate for ourselves before the transfer. Trust YOURSELF! Do research, read other stories and ask questions!
TWW (two-week-wait): Honestly I hated reading this answer but I felt NOTHING!! I really did not believe it had worked at all. I had sore boobs, but I had that from the hormones before the transfer. I tried to stay positive, but I really wasn't deep in my heart. I was fully prepared for the worst phone call of my life, which turned out to be the best phone call of my life! So hang in there, do whatever feels right, feel whatever you need to, just get through the wait.
May 30th was the day we got the call to say we were pregnant, our transfer was a success. My beta number was 63, not the greatest, so even though I was so happy, I was terrified of what would happen next. It was hard to let myself feel all this joy, when I knew there was a good chance the beta could go down in 2 days. But it didn't, it almost doubled to 118. Still I was cautious... but very happy. The next beta was 3 days and we jumped to almost 500 and then the last one was over 1,000. We officially made it through the beta hell. I finally started to believe this may actually be happening.
Then on 6/11, a Monday, I was at work feeling great. I went to the bathroom around 11:45 am and there was a lot of bright red blood when I wiped. I instantly lost my breathe and began to freak out. I ran back to the classroom I was in, grabbed my stuff and tried to tell anyone what happened, but at this point I was already hysterical. I ran out the door and called Chris- he answered immediately and I couldn't even get any words out, just blood. He just went into panic mode but did his best to calm me down, he helped me start breathing and we both left work and drove right to the Dr. It was a 45 minute drive of terror, I cried hysterical and begged for this to not be happening, while Chris just told me over and over again how much he loved me. When we got to the Dr I didn't even want to go in but Chris forced me, I didn't want to face what I thought I knew. In all my times going to the Fertility clinic, I have never cried there like this. Luckily, they are amazing and took me right back with lots of hug and consoling. They told me to try and relax and get on the table. The PA came in and immediately did an emergency scan, and there was our little guy. Honestly, I couldn't even look, but she and Chris kept telling me to look they could see his little heart fluttering!!! I finally looked, he was there, he was sooo tiny, but strong. His heartbeat was 108 at only 6weeks. It was amazing. She didn't see anything else going on in the uterus, no cause for bleeding. When she took the wand out there was barely any blood. What a relief. I took the next day off of work and nothing happened. I went back to work on Wednesday and right around the same time it happened again. This time I stayed much calmer but still left work. I want to be clear, a lot of people spot in their pregnancies and it is totally normal, however it is typically brown or prink blood and just a tiny bit. This was more than that and bright red- like a period. However, there was no obvious cause for mine. We decided to stop baby aspirin as I was also on a blood thinner to see if that would help. I also put myself on a modified bed rest for the rest of the week and weekend. It never happened again. My gut tells me it has something to do with work, I sit in very small chairs with preschool children, I believe that I was basically doing 100 squats every morning which may have been just too much for my body at that time. There is no scientific evidence for this, but when I went back to work I sat in adult chairs, preferably more comfortable ones and I was feeling much better.
On 6/20 we went for our regular scheduled sonogram. I couldn't believe how much our little guy had grown! He was still so strong with a heart beat of 146. He measured perfectly and I was falling more and more in love with him. We were now 7w2d pregnant and due in February 2019.
We waited another 2 weeks to see our little guy. He was so much bigger and moving all around. He even waved his hands in the sonogram. His heartbeat was fast at 188 but he was just perfect. I was and am still feeling great. No illness and really no symptoms at all. Still have sore boobs and the only noticeable difference is the amount I am hungry. I wake up early from my stomach growling and need to eat much more during the day, but I am able to eat all things and mostly keeping it healthy. At this time we were 9w2d pregnant with our son. Our RE recommended that we start weening off hormones and meds at this time, but we just weren't ready. We asked for more time, basically we were terrified to change anything.
During week 10 we saw an MFM (Maternal Fetal Medicine) Dr. She was very nice, but to the point. She did a sonogram and told us our little guy was doing great, strong heart beat, active and measuring perfectly. She confirmed that it was ok to start weening off the supplements. She recommended staying on the blood thinner, since I was already on it and it will be no harm to me or baby. After meeting with her, we decided to stop the PIO shots at night and increase to 3 a day progesterone inserts, this was the RE's recommendation.
This week I am honored to say that I am 11 weeks pregnant. We had one last sonogram at our fertility clinic. Our son is just perfect. He was dancing around the whole time. He is super active and strong. He is still measuring perfect and has a fast heartbeat of 180. We have officially graduated, meaning that we are moving forward and seeing a regular obgyn next week. We have stopped all estrogen supplementation, decreed progesterone to 2 pills a day and weening off the dexamethasone by taking it every other day. By next week, I will be off all these hormones and medicine. The only thing I will continue to take is the blood thinner. I will also be having another intralipid infusion in August.
It is a very bittersweet feeling. I am so grateful for everyone at our clinic and for how far we have come. I never knew what this would feel like, I'm full of love, hope, and joy. I wish everyone could experience this, but I know that is not always the case, I am very aware that we are crossing over to the "lucky" side.
Here are all the specific details of what we did this cycle ( you can also read more details in previous posts) I will star the things that are different this cycle. I do not believe it was one particular thing that made this cycle successful, but I do feel that my surgery to remove my infected tube played a large role, as well as being patient with my body and trying some new medicines that wouldn't hurt.
Things I did the entire cycle:
*Chiropractor (fertility)- saw her 1 times a week
Acupuncture- 2 times a week and before and after transfer
*Took a prenatal with FOLATE- Emerald Laboratory is the brand I chose.
*Took DHA Omega gummies
Protocol:
Estrogen for 6 weeks- was increased to 3 patches a day and 3 vaginal inserts (read other posts)
*dexamethasone 0.5mg beginning with Estrogen
baby aspirin starting with Estrogen
PIO shots, 2 inserts a day and *Lovenox (blood thiner) beginning 5 days before transfer
*Intralipid infusion 1 month before transfer and 1 week before transfer
doxycycline for 5 days leading up to transfer
I continued all of the above meds (except doxy) until beta day and then after.
Other things during the TWW:
I was on bed rest for 2 days- I did walk around the house, but nothing crazy.
I ate only warm foods, including room temperature drinks for 5 days. And after that tried to avoid freezing cold things until beta.
I drank a pineapple core crushed up with warm water for the day of transfer and 2 days after.
I know I said above that I felt nothing during the tww and its true but I did have 2 bizarre things. 2 days after the transfer I wet the bed in the middle of the night- never have I done this. Turns out I had my first ever UTI, I ended up having to take antibiotics. When they tested for it again right around the beta, I now had a yeast infection... so I have no clue if this was all related, but it was new and unusual for me!
My weening progress:
10 weeks stopped PIO cold turkey, but increased to 3 vaginal supplements a day.
11 weeks stopped estrogen cold turkey, decreased to 2 progesterone inserts a day, and dexamethasone every other day.
13 weeks last intralipids infusion
staying on Lovenox until some times later in pregnancy
***Sensitive***
Here is a picture of our little guy. I truly hope you get to experience this. If you are struggling the best advice I can give is, don't give up on yourself. Stay open minded, get help, research, try new things and remember to try and love yourself through the hard times.
We made our miracle! We conceived our son through embryo donation. He is absolutely perfect. We are now navigating parenthood all while enjoying life. Follow along to see how we conceived our son, our relationship with the donors and how we raise our son to know his story.
Wednesday, July 18, 2018
Saturday, May 19, 2018
Transfer Day Round 2
We transferred our sweet little boy yesterday. We are filled of love, hope, fears and faith. And now all we can do is wait!!!
Yesterday, was amazing!! We were filled with so much joy and positive vibes. We were sent so many messages from people that have been following along our journey, wanting to send us good luck and positivity. We received text messages, Facebook messages, calls and even care packages in the mail. This is what makes it all worth it. Our little guy is so loved already and the fact that I know we have so much support and love surrounding us, makes our struggle just a little bit easier.
The actual day began with me waking up super early. I have been experiencing some discomfort in my vaginal region, sorry that is TMI, but its part of the story, besides the 2 daily injections I have to take, I also have 5 vaginal inserts a day... so needless to say it can be very uncomfortable. I think this time around it is so much worse as I have been on the hormones for so long and the weather is hotter and more humid... so anyway, I decided to get up and soak in the bathtub for the last time, hopefully for a very long time (Can't take any after transfer and while pregnant). I decided to meditate in the tub, it was very relaxing and a nice moment to myself. The affirmation that I remembered the most from my meditation was "My body is ready, just like every Mother's is", I found myself repeating this all day long.
Next I got dressed, had a great breakfast with my husband and planned out our schedule of the day. I went to acupuncture, where to my surprise with all that was going through my head, I still fell asleep. I came home and picked up Chris and off we went to make a baby!
Arriving at the office is always stressful.... the waiting to confirm that the Embryo thawed out is literally the hardest feeling to deal with. Chris and I just sat holding hands without saying anything as we knew we were both scared but didn't even have the nerve to discuss it. When we were finally called into the Doctor's office and saw our little guy in his First picture, we breathed a sigh of relief! He was perfect! No seriously, he was graded almost at Excellent, but completely perfect. We discussed all the details of what would happen next, took my valium and then off to the waiting room again.
We were then called to back to begin getting prepared. I was greeted by many hugs from the nurses and lots of well wishes. I changed and Chris got dressed up in his gear. We were brought into the room and the procedure began.
Even with the valium the pressure was unbelievable. I winced and squeezed Chris's hand. Remember how sore I am in this region and you need a full bladder for this procedure. But it was all worth it. Dr was able to enter my uterus easily and the Embryologist brought in our little guy and he was pushed into me. We got to see the whole thing on the screen. Watching Chris's face is something I will hold in my heart forever.
My Dr is amazing and drained my bladder for me to relieve some pressure. Then he and the nurse fixed me up with some warm blankets, propped my hips up and left us to rest and relax for 30 minutes. We laughed, I cried a bit and kissed each other. Remembering how much we love each other and hopeful this is our time to make a baby. We are officially PUPO!!! We are pregnant until proven otherwise!!
Now I have 2 days of bedrest, staying warm which includes eating and drinking warm foods, relaxing, drinking crushed up pineapple core for 3 days and laughing...
Please let this little guy stick!!!
See more on our story covered by The Dkol La Femme Project over on their blog. I have to say this form of therapy has significantly helped me through my process and having the pictures in the end is a much added bonus. Please check out their nonprofit if you have a story to tell or know someone that does! https://thedkollafemmeproject.org/blog/2018/8/29/the-dkol-la-femme-project-embryo-adoption
Friday, May 11, 2018
Moving Forward!
April 30th- We met with our Dr to see how this mock cycle was going. Where is my lining? Where are my E2 (estrogen) levels? We were anxious to see what could this mock cycle mean for our future.
To our surprise, my lining had improved to an 8mm and my E2 levels were in the normal range but decreasing instead of increasing. We decided to meet again next week and see what we would like to do and he said we could possibly continue on the meds and transfer in May... we had no idea this was even possible!! So the rollercoaster continues.
May 7th- We met with the Dr again and my lining was continuing to thicken, almost 9mm, however the E2 declined again... I don't know what is happening!!! i have researched this, asked other Doctors, Acupuncturist, and of course in all my FB groups... but no responses! So I decided to just trust and have faith that I was on the right path and all of this had to happen for a reason. There are some things and at times many things that are not going to make sense to me, but I need to just trust my gut... so I did and Chris was feeling the same way, so we took it as a sign and agreed to come back on Friday May 11th and make our final decision to transfer the following week or cancel and stop all the hormones.
May 11th- Finally my body is making sense!!! Now my lining is at 9mm and my E2 levels increased to 2,000 which is where it normally is for most women when ready to transfer! So we thought about it, talked with our Dr and we decided we are READY!! So we scheduled our transfer for May18th.
We are very excited and of course nervous.
To all the other IVF Warriors out there that may be reading this. Keep fighting. Trust your gut. Ask questions. And push to be treated as you deserve. Chris and I were the ones to suggest we try the mock cycle, and I am in no way saying anything negative about or Dr., its just as I have said many times before, you know yourself and your body and you have to be willing to advocate for yourself.
I had a lot of people tell me to get 2nd opinions, and we haven't really at this point, and many may disagree with that, but I feel that I am right where I am supposed to be at this point. It works for me, but if you are not comfortable and not happy then please get another opinion, find a way to be an advocate for yourself and if there is any way I can ever help, just ask!!
So for now.. I will begin preparing myself for our TRANSFER!! Some self-care, acupuncture, baths, reading, eating avocados, cleaning the house (so I don't need to later) and of course meditating.
To our surprise, my lining had improved to an 8mm and my E2 levels were in the normal range but decreasing instead of increasing. We decided to meet again next week and see what we would like to do and he said we could possibly continue on the meds and transfer in May... we had no idea this was even possible!! So the rollercoaster continues.
May 7th- We met with the Dr again and my lining was continuing to thicken, almost 9mm, however the E2 declined again... I don't know what is happening!!! i have researched this, asked other Doctors, Acupuncturist, and of course in all my FB groups... but no responses! So I decided to just trust and have faith that I was on the right path and all of this had to happen for a reason. There are some things and at times many things that are not going to make sense to me, but I need to just trust my gut... so I did and Chris was feeling the same way, so we took it as a sign and agreed to come back on Friday May 11th and make our final decision to transfer the following week or cancel and stop all the hormones.
May 11th- Finally my body is making sense!!! Now my lining is at 9mm and my E2 levels increased to 2,000 which is where it normally is for most women when ready to transfer! So we thought about it, talked with our Dr and we decided we are READY!! So we scheduled our transfer for May18th.
We are very excited and of course nervous.
To all the other IVF Warriors out there that may be reading this. Keep fighting. Trust your gut. Ask questions. And push to be treated as you deserve. Chris and I were the ones to suggest we try the mock cycle, and I am in no way saying anything negative about or Dr., its just as I have said many times before, you know yourself and your body and you have to be willing to advocate for yourself.
I had a lot of people tell me to get 2nd opinions, and we haven't really at this point, and many may disagree with that, but I feel that I am right where I am supposed to be at this point. It works for me, but if you are not comfortable and not happy then please get another opinion, find a way to be an advocate for yourself and if there is any way I can ever help, just ask!!
So for now.. I will begin preparing myself for our TRANSFER!! Some self-care, acupuncture, baths, reading, eating avocados, cleaning the house (so I don't need to later) and of course meditating.
Saturday, April 21, 2018
A single failure....
Well... we decided to cancel the transfer. I am still completely confused as to what happened. I know it is common for women to struggle with lining issues, however in my particular case it does not seem "normal". According to my ultrasounds, my lining grew from a 3 (baseline) to a 7mm (1st monitoring) in a week, then to a 13mm (2nd monitoring) in the next week and then back down to a 8mm (3rd monitoring) in 6 days, we decided to add another monitoring 2 days later and it was around a 7mm... this makes no sense to anyone, not my doctor or acupuncturist. My hormones continued to rise and stay in the right zones and I was feeling great. I didn't miss any medications, was meditating and staying positive. It was the last thing I was expecting.
Chris came with me to the appointment and helped talk it out with the doctor. We decided to convert the cycle to a "mock" cycle. I am going to stay on the estrogen for another 10 days (yeah! can't wait!) and see what happens to my lining.. if it continuing to shrink... or thicken??? I still can't shake the feeling that the 13 measurement could have been an error... all of the ultrasounds were done by the same doctor on the same machine...but he did say it could have been a shadow of some sorts on the screen.. which then at least my situation would be a little more typical with a lining that is struggling to thicken. I feel a little more comfortable with that scenario. As always only time will tell. The one thing we know is we are not comfortable transferring this little guy until we feel my body is perfect and ready. That is not to say that this disappointment is not ripping my heart apart.
I am more scared about the future.. will I ever be ready.. is my body and the universe trying to tell me I am not meant for pregnancy.. am I doing something wrong.. these are all the things that cross my mind and I am terrified of the answers. I feel broken. I feel like I may not deserve this for some reason. I know I "shouldn't" feel this way and it probably isn't true but it is my inner fears. I want to be a warrior and I know I am... warriors have moments of weakness too.
On the medical end, I also have so many thoughts... did this happen last time and we didn't catch it? Was the endometriosis making my lining appear thicker? Has it somehow grown back already causing problems? Is there a cyst or growth some where? Do I need to loose weight? Its never ending... the thoughts just keep coming...
So for now, I am going to try and stay positive, reminding myself that I will be a Mom one day, some how, it just can't happen in the timing I want. I have to learn to be patient. Chris has already told me over 100 times since yesterday that I am not broken, he loves me forever and we are going to be parents, and I guess I just need to trust him because it's all I have left. I need to stop blaming myself and trust the process, I know it is hard and I continue to be a work in progress but it's what I need to do. So I will keep working on myself in all the ways I can, and starting with some more self care.
Chris came with me to the appointment and helped talk it out with the doctor. We decided to convert the cycle to a "mock" cycle. I am going to stay on the estrogen for another 10 days (yeah! can't wait!) and see what happens to my lining.. if it continuing to shrink... or thicken??? I still can't shake the feeling that the 13 measurement could have been an error... all of the ultrasounds were done by the same doctor on the same machine...but he did say it could have been a shadow of some sorts on the screen.. which then at least my situation would be a little more typical with a lining that is struggling to thicken. I feel a little more comfortable with that scenario. As always only time will tell. The one thing we know is we are not comfortable transferring this little guy until we feel my body is perfect and ready. That is not to say that this disappointment is not ripping my heart apart.
I am more scared about the future.. will I ever be ready.. is my body and the universe trying to tell me I am not meant for pregnancy.. am I doing something wrong.. these are all the things that cross my mind and I am terrified of the answers. I feel broken. I feel like I may not deserve this for some reason. I know I "shouldn't" feel this way and it probably isn't true but it is my inner fears. I want to be a warrior and I know I am... warriors have moments of weakness too.
On the medical end, I also have so many thoughts... did this happen last time and we didn't catch it? Was the endometriosis making my lining appear thicker? Has it somehow grown back already causing problems? Is there a cyst or growth some where? Do I need to loose weight? Its never ending... the thoughts just keep coming...
So for now, I am going to try and stay positive, reminding myself that I will be a Mom one day, some how, it just can't happen in the timing I want. I have to learn to be patient. Chris has already told me over 100 times since yesterday that I am not broken, he loves me forever and we are going to be parents, and I guess I just need to trust him because it's all I have left. I need to stop blaming myself and trust the process, I know it is hard and I continue to be a work in progress but it's what I need to do. So I will keep working on myself in all the ways I can, and starting with some more self care.
Wednesday, April 18, 2018
Not so ready....
Well we are on another rollercoaster ride. Today was supposed to be the beginning of phase 2 of the protocol. I should be starting the Lovenox and PIO tonight, but things didnt go as planned. It seems that my lining has gotten thinner instead of getting thicker. Last appointment it showed that I had a 13mm lining, this time I was down to an 8. We are not sure what happened. We talked with our Dr and it seems that all the hormones are the same and in a good range, but the lining has gotten thinner. We decided to wait and see what happens over the next 48 hours. Maybe the lining will get thicker... but we are not sure at this point. So either way my transfer is delayed and now possibly going to be cancelled. Im a mess to be completely honest. I just feel defeated, like I can never be prepared emotionally and now I am not sure what my body is doing. Its hard to feel so "ready" and positive when my body just isn't responding the way that it should.. what does this mean.... is this a sytmptom or a sign of yet another fertility problem? Is my body able to do this? I am at a lost right now... I know the best thing is to wait for everything to be perfect and for my Doctor to feel that we are at the best place physically.. but it is hard to know if that point is ever going to come.. will I ever be ready? I want to be strong and positive, but right now especially with all these hormones its difficult to feel that way. I fell weak and sad. I have a long 48 hours ahead of me of researching and trying to see what I would like to do if my lining does thicken.. is that ok? Is it still a good idea to transfer.. I am not sure at this point. Will the extra estrogen help or is it too much for my body. Is this what happened last time? So many thoughts going through my head.
Saturday, March 31, 2018
Trying Again
We are about to start our 2nd embryo transfer!!! I can't believe it is actually happening again. My feelings this time around are so different than last time. This time I am MUCH calmer but also way more terrified than I was last time. I know what to expect, but I am terrified of not getting a positive result. This is something I have been dealing with since my surgery and finding out that I should be ready to transfer in April, I immediately started to feel like I need to protect my heart. I swear, I never want to look at a pregnancy test again, I am terrified, but I am working on it and I have found a few things that seem to be helping.
I have been working out more, I just use a small elliptical that I have at home, I try to get on it every morning when I wake up. This is helping me feel better and positive about myself and I plan to continue through my protocol.
I am meditating. I purchased the Circle & Bloom meditation for Frozen Embryo Transfers. It is really helping me relax and mentally picture and prepare myself for what my body is doing and is about to do. It often puts me right to sleep or really close to it. I feel myself just being more calm. I have also been saying more affirmations to myself, something along the lines of "I deserve this, I deserve to be a mother and it will happen in some way" and I seem to be accepting this more this time around, Im not sure why, but I like how it is making me feel. I have an inner-peace about it. I don't feel as anxious that it HAS to happen right now... even though I still want it to with my whole heart and soul, I just feel different about it now. I am also listening to a "chant" that a Yogi gave me to Kali, the Buddhist goddess of time while doing some fertility yoga poses (mostly keeping my legs up in the air). Im not sure how much these elements will actually help my physically, but they are definitely helping me mentally.
I started to see a chiropractor, she works with infertility, pregnant women, infants and children. She is great, she is sweet and has a great energy about her. She explained to me that seeing her will not increase any odds per se, but it does help your organs function at their best. Interesting enough all the vertebrates that seem to be "out of line" were all related to my pelvic region... so who knows. I see her once a week for adjustments and I am feeling great.
I am still seeing my acupuncturist 2 times a week as well.
This protocol is going to be much different than last time. Starting with beginning estrogen for an extra week. Yesterday I began with 2 estrogen patches (changed every other day), estrogen vaginal inserts 2 times a day and a steroid. On April 14th, I will be having an Intralipid Infusion, a home health nurse will be coming to my home and giving me the infusion. Then a blood thinner injection (Lovenox), Progesterone shots and vaginal inserts will be added in to the protocol as we approach April 23rd.
Chris and I decided to organize the meds much different this time around, since last time I was a mess and couldn't remember what I had taken, when I changed the patches and he couldn't either! I couldn't believe how much the hormones effected me mentally, so this time we wanted to be better prepared. We decided to use ziplock bags. We put everything I need to take for the day in the bag- AM/PM and then in a large bag labeled with the day. It took us awhile but I really think it will be worth it. Also just having him be involved from the beginning helps take the pressure off of me and he will be able to help me stay on it if my brain starts to get mushy again!!
Wednesday, February 28, 2018
Laparoscopy
I had my surgery yesterday. It was a very emotional day. I was actually scared to death. I was terrified to wake up and find out my body could never carry a baby, or lose both of my tubes and NEVER be able to conceive naturally.
I'll save you the stress... it ended up being ok! I did have to have my right tube removed due to the Hydrosalpinx. He also removed some endometriosis and some polyps. I have 3 incisions, by my belly button and 2 in the pelvic region.
I was in a lot of pain when I woke up. I of course was crying... this seems to be my go to move coming out of these surgeries. They gave me some more pain relievers and then some medicine to help with nausea. After letting me rest for 2 hours I got to go home. My pain was present all night, more like the worst cramps I have ever had. My incredible husband and Mother in Law took great care of me.
Today I woke up feeling much better. I am more sore and tired today. It hurts to get up and down, but I am following the recommended directions and moving around as much as I can. I plan to rest for the rest of the week.
I have a follow-up visit with my doctor on Monday to remove my stitches and discuss our future.
I really just hope with all my might that this is our missing piece. I am feeling like I am at the end of my road.. I do not know how much more my heart can handle!!!
I'll save you the stress... it ended up being ok! I did have to have my right tube removed due to the Hydrosalpinx. He also removed some endometriosis and some polyps. I have 3 incisions, by my belly button and 2 in the pelvic region.
I was in a lot of pain when I woke up. I of course was crying... this seems to be my go to move coming out of these surgeries. They gave me some more pain relievers and then some medicine to help with nausea. After letting me rest for 2 hours I got to go home. My pain was present all night, more like the worst cramps I have ever had. My incredible husband and Mother in Law took great care of me.
Today I woke up feeling much better. I am more sore and tired today. It hurts to get up and down, but I am following the recommended directions and moving around as much as I can. I plan to rest for the rest of the week.
I have a follow-up visit with my doctor on Monday to remove my stitches and discuss our future.
I really just hope with all my might that this is our missing piece. I am feeling like I am at the end of my road.. I do not know how much more my heart can handle!!!
Advocating for Myself
If there is one thing that I have learned through this entire journey so far that I can pass on to anyone else is being an advocate for yourself. This can be really hard, but you HAVE to do your research and not be afraid to speak your opinions to the doctor. I know that "they" know more, but honestly in a lot of cases, they don't know "your body" like you do. Don't get me wrong, I love my Doctor, the PA, nurses and all the staff at my clinic, but the reality is as much as they love me and are good at their job, its not their body, they don't have to feel the loss like we do and they are not the one without the desired child. So regardless of their knowledge versus yours, you are automatically more invested in the outcome.
As I mentioned in my last post, I decided I was not ready to jump back into another try, something just didn't feel right about it. I wanted more testing to make sure nothing was missed. I read a lot about the information that other women found from tests like Repetitive Loss Panel (RPL), autoimmune testing and actual testing on/in your uterus. I made an appointment with my Physicians Assistant after my first period. I requested the (RPL) even though I knew they were not usually run until 2-3 miscarriages, but I felt like I do not have the opportunity to wait for that to happen as I am using donated embryos, besides the fact that it made me sick to think about. I also spoke to her about other tests, I wanted a repeat Saline Sonogram, this is a test that I had done 2 times already and the last time it showed I had grown polyps in my uterus which needed to be removed via surgery. This was also something I had to advocate for as it is only "typically" done ever 6 months. But I wanted it done before I would consider trying again to make sure "all was clear". The RPL takes about 2 weeks to come back, so in the meantime I had the sonogram done that showed no polyps or growths and I asked about more testing. The Clinical Manager at my office suggested one test to me called Fertilome. It is a new test that is basically a genetic DNA test for fertility issues. It looks at your DNA and comes up with percentages of you having a specific infertile problem. I definitely wanted this test as it would cover all the areas I was concerned about, RPL- clotting issues, Auto-immune, PCOS, Endometriosis and some more common issues. Then the PA suggested another test called Receptive Dx, which is a endometrium biopsy that checks for some common cells seen in endometriosis or hydrosalpinx (swelling of fallopian tubes). So I researched these tests, talked to Chris and waited to meet with our Dr for the first follow up after the RPL.
This is where the craziness all begins. We found out that I have a genetic mutation called MTHFR (not a curse word). Google it to find out more, especially if you are trying to get pregnant, as it is very common. However, I have a more complicated version as I have 2 compounds, 1 from each of my parents. The theory is, and I say theory because there are not many medical professionals out there that completely "buy into" MTHFR, but there are millions of women that when they treated it, and switched some very simple things in there life found immediate success- so in the fertility world, why not try it??? Ok so the 2 main concerns with this mutation is that it can cause blood clotting, which is a major cause for miscarriages and/or implantation failure. So to treat this concern, I will be taking a blood thinner injection starting before the next transfer and continue until at least 1st trimester (but I plan to stay on longer) unless someone can prove to me that it is hurting me or the baby. The other concern is how my body breaks down and uses folic acid- which we all know is what we need while pregnant. This is where the research becomes controversial. Many doctors recommend more folic acid to cover the bases sort of speak- but many women and naturopathic doctors believe folic acid is not useful or helpful to a woman with MTHFR, so they recommend folate. Which is basically the natural form of folic acid... think drinking orange juice compared to taking vitamin C pills.... but worse if you have this mutation because research shows your body can handle and store folate correctly but can't break down the man made version of it called folic acid. If you have this mutation or are struggling to get pregnant or stay pregnant, do your research on this and see what you think!
Next we talked to our Dr about the other tests we wanted done and he agreed to be more aggressive in our situation and order these tests. I felt relieved. We did the Fertilome blood test and the biopsy. We waited 3 weeks for the results and then had another follow up... this is where everything changes for us.
The Fertilome came back showing high risk for Diminished Ovarian Reserve (my initial diagnosis) Endometriosis, RPL clotting issues and Auto Immune....yes ALL of the things I was concerned about. The biopsy confirmed that there is either endometriosis or hydrosalpinx present, so basically a whole lot of things that can 100% be causing our failure. First thing we tackled was the next protocol, our Dr agreed to treat all of these without more testing. So that means adding the already discussed blood thinner, steroids, and Intralipid infusions. This will all be added to the standard protocol of estrogen and progesterone.
Next comes what to do about the endometriosis. He suggests a Laparoscopy to get inside and confirm endometriosis and remove anything. He says that I most likely do not have Hydrosalpinx as I had a clear HSG (standard IVF testing done last March 2017). I begin to tell him that the test was extremely painful and that the radiologist had a difficult time, but I was told that the report said all was "normal". He looked back at the radiologist report and read it to us that the fallopian tubes were all clear, but now he is wondering if he should look at the scans himself to double check since he will be doing the laparoscopy anyway. He explained that Hydrosalpinx has been proved to be very toxic to embryos, so even though you do not "need" you fallopian tubes when doing IVF, if it's swollen and infected with toxic fluid, this fluid can be leaking into your uterus and hurting or flushing an embryo right out of your uterus.
I went to Vassar Brothers Hospital the next day, picked up my disc of scans, brought it to doctor and they told me the Dr will look at it and call me either way. He called a few hours later and said he was confident that I have hydrosalpinx. He said my right tube looked very swollen, like a sausage and he absolutely recommended taking it out. I about lost it on the phone, flipping out "how could this have been missed??" He explained that some radiologist just look for the "spillage of fluid" and not at the actual tube... BULLSHIT... this is the whole point of this exam to look at your fallopian tubes and there function. I hung up crying and of course called Chris...who was eerie silent (which I knew was not good) and very calmly said, call back the Dr and have him call me. You have to understand how devastating this is to find out a year later... our whole plan would have been different... they would have found endometriosis earlier, we could potentially be pregnant right now from our last transfer as this toxic fluid could have hurt our embryo.... all of this flashing through our minds was just TOO much to handle. We both screamed in anger, not at each other but just to release some emotion.... but after the night or screaming and crying hysterically, it was time to pick ourselves up and move forward.
I got my period 2 days later, went back to the office and looked at the scans myself, it was easy for regular old eye like mine to see... 1 tube was nice and thin, the other looked HUGE in comparison. I cried again. This is what I mean, I have advocated for myself, researched, talked to 100's of women and this was still missed, because I never thought to make sure someone looked at these scans, I didn't push further to say that test REALLY hurt me, can you please look it over, I just trusted everyone and unfortunately things were missed and WE suffered, nobody else, just us. All I can do is hope that this doesn't happen to anyone else, so please BE PUSHY!! Don't be afraid to speak up, its YOUR body and health!!
As I mentioned in my last post, I decided I was not ready to jump back into another try, something just didn't feel right about it. I wanted more testing to make sure nothing was missed. I read a lot about the information that other women found from tests like Repetitive Loss Panel (RPL), autoimmune testing and actual testing on/in your uterus. I made an appointment with my Physicians Assistant after my first period. I requested the (RPL) even though I knew they were not usually run until 2-3 miscarriages, but I felt like I do not have the opportunity to wait for that to happen as I am using donated embryos, besides the fact that it made me sick to think about. I also spoke to her about other tests, I wanted a repeat Saline Sonogram, this is a test that I had done 2 times already and the last time it showed I had grown polyps in my uterus which needed to be removed via surgery. This was also something I had to advocate for as it is only "typically" done ever 6 months. But I wanted it done before I would consider trying again to make sure "all was clear". The RPL takes about 2 weeks to come back, so in the meantime I had the sonogram done that showed no polyps or growths and I asked about more testing. The Clinical Manager at my office suggested one test to me called Fertilome. It is a new test that is basically a genetic DNA test for fertility issues. It looks at your DNA and comes up with percentages of you having a specific infertile problem. I definitely wanted this test as it would cover all the areas I was concerned about, RPL- clotting issues, Auto-immune, PCOS, Endometriosis and some more common issues. Then the PA suggested another test called Receptive Dx, which is a endometrium biopsy that checks for some common cells seen in endometriosis or hydrosalpinx (swelling of fallopian tubes). So I researched these tests, talked to Chris and waited to meet with our Dr for the first follow up after the RPL.
This is where the craziness all begins. We found out that I have a genetic mutation called MTHFR (not a curse word). Google it to find out more, especially if you are trying to get pregnant, as it is very common. However, I have a more complicated version as I have 2 compounds, 1 from each of my parents. The theory is, and I say theory because there are not many medical professionals out there that completely "buy into" MTHFR, but there are millions of women that when they treated it, and switched some very simple things in there life found immediate success- so in the fertility world, why not try it??? Ok so the 2 main concerns with this mutation is that it can cause blood clotting, which is a major cause for miscarriages and/or implantation failure. So to treat this concern, I will be taking a blood thinner injection starting before the next transfer and continue until at least 1st trimester (but I plan to stay on longer) unless someone can prove to me that it is hurting me or the baby. The other concern is how my body breaks down and uses folic acid- which we all know is what we need while pregnant. This is where the research becomes controversial. Many doctors recommend more folic acid to cover the bases sort of speak- but many women and naturopathic doctors believe folic acid is not useful or helpful to a woman with MTHFR, so they recommend folate. Which is basically the natural form of folic acid... think drinking orange juice compared to taking vitamin C pills.... but worse if you have this mutation because research shows your body can handle and store folate correctly but can't break down the man made version of it called folic acid. If you have this mutation or are struggling to get pregnant or stay pregnant, do your research on this and see what you think!
Next we talked to our Dr about the other tests we wanted done and he agreed to be more aggressive in our situation and order these tests. I felt relieved. We did the Fertilome blood test and the biopsy. We waited 3 weeks for the results and then had another follow up... this is where everything changes for us.
The Fertilome came back showing high risk for Diminished Ovarian Reserve (my initial diagnosis) Endometriosis, RPL clotting issues and Auto Immune....yes ALL of the things I was concerned about. The biopsy confirmed that there is either endometriosis or hydrosalpinx present, so basically a whole lot of things that can 100% be causing our failure. First thing we tackled was the next protocol, our Dr agreed to treat all of these without more testing. So that means adding the already discussed blood thinner, steroids, and Intralipid infusions. This will all be added to the standard protocol of estrogen and progesterone.
Next comes what to do about the endometriosis. He suggests a Laparoscopy to get inside and confirm endometriosis and remove anything. He says that I most likely do not have Hydrosalpinx as I had a clear HSG (standard IVF testing done last March 2017). I begin to tell him that the test was extremely painful and that the radiologist had a difficult time, but I was told that the report said all was "normal". He looked back at the radiologist report and read it to us that the fallopian tubes were all clear, but now he is wondering if he should look at the scans himself to double check since he will be doing the laparoscopy anyway. He explained that Hydrosalpinx has been proved to be very toxic to embryos, so even though you do not "need" you fallopian tubes when doing IVF, if it's swollen and infected with toxic fluid, this fluid can be leaking into your uterus and hurting or flushing an embryo right out of your uterus.
I went to Vassar Brothers Hospital the next day, picked up my disc of scans, brought it to doctor and they told me the Dr will look at it and call me either way. He called a few hours later and said he was confident that I have hydrosalpinx. He said my right tube looked very swollen, like a sausage and he absolutely recommended taking it out. I about lost it on the phone, flipping out "how could this have been missed??" He explained that some radiologist just look for the "spillage of fluid" and not at the actual tube... BULLSHIT... this is the whole point of this exam to look at your fallopian tubes and there function. I hung up crying and of course called Chris...who was eerie silent (which I knew was not good) and very calmly said, call back the Dr and have him call me. You have to understand how devastating this is to find out a year later... our whole plan would have been different... they would have found endometriosis earlier, we could potentially be pregnant right now from our last transfer as this toxic fluid could have hurt our embryo.... all of this flashing through our minds was just TOO much to handle. We both screamed in anger, not at each other but just to release some emotion.... but after the night or screaming and crying hysterically, it was time to pick ourselves up and move forward.
I got my period 2 days later, went back to the office and looked at the scans myself, it was easy for regular old eye like mine to see... 1 tube was nice and thin, the other looked HUGE in comparison. I cried again. This is what I mean, I have advocated for myself, researched, talked to 100's of women and this was still missed, because I never thought to make sure someone looked at these scans, I didn't push further to say that test REALLY hurt me, can you please look it over, I just trusted everyone and unfortunately things were missed and WE suffered, nobody else, just us. All I can do is hope that this doesn't happen to anyone else, so please BE PUSHY!! Don't be afraid to speak up, its YOUR body and health!!
Wednesday, January 17, 2018
Grief
I have to admit, I am having a much harder time accepting this loss and moving forward than anything else I have experienced in life. I cry ALL THE TIME. For the first two weeks I literally cried all day long, I would have a few moments where I was able to be distracted and then BAM something would make me think about it. I have talked to other women that have experienced this pain of failed transfers, miscarriages and the infertility struggle and they all say that this pain is the same. You lost a child, you lost the thought of the child that you already love with everything that you have. It is very hard to pick yourself up and move forward, but in the end you have to. You have to find a way to be ok, to remember why you are on this journey and to begin to have hope for the next time.
I am trying to heal my soul. I am trying to take some time, and listen to myself. Not control everything, not try to find an answer because believe me that is all that I want to do, but try to be in the moment and feel what my soul needs to feel.
I have done some research and spoken to my doctors about additional testing which will soon follow. But we made the decision that we are not ready to jump back into another cycle, that we need some time to heal. So I am trying to heal.
I have started to use more meditation and relaxing thoughts to soothe me. I was having terrible nightmares for weeks and couldn't sleep. As soon as it was time to sleep I would start to feel anxious, my subconscious is still struggling and needs more time to process this loss. During the day, I am able to rationalize and calm myself down, but in my sleep I am struggling. I have always been a vivid dreamer, but these nightmares are terrible. I am always loosing a baby in one way or another, of course miscarriages, other failed transfers, but also just loosing a child in a mall, or having them kidnapped, or dying at an older age... its just terrible. So I started to listen to some meditation to help me fall asleep and calming sounds to help soothe my subconscious and it is working. I am still very sad and cry more than I would like to admit, but I am also feeling a little better.
I have to keep reminding myself that we are on this journey for a reason and we need to be grateful for that. We are growing closer with every obstacle, we are learning more about each other through the process and with every loss we want a baby more. So I know this is something that we both want with all of our heart and soul and all I can do is have hope that it will happen for us in one way or another, the hard part is the waiting, being patient and staying in the moment. Let's just say I am work in progress, but I am strong and I will find my strength again.
Our transfer
First off I would like to start off by saying that I am so very sorry for taking over a month off from writing. I am sorry to myself as I use this as a form of therapy and I'm sorry if there is anyone out there that follows this closely!
Where to start... well Progesterone shots suck!! They hurt me so bad, I basically cried every night in pain, and I could even feel it through out the day when walking around... but we got to take them. I will say that it was another small part that brought Chris and I closer through out this process. He gave me the shots every night as they are taken in the upper part of your butt. I would lay down with an ice pack to try and numb the injection area, Chris would as always prepare the medicine and then he would inject me... this is a different process than all of our other meds, because they recommend that you inject it very slow as it is a thick oil... it hurts! I could feel it going in no matter how much I tried not to. After a few minutes Chris would massage the area and try to work the oil into my system, this sounds like it would be relaxing, but really it just made it hurt more as the muscle is so bruised. I have read other women do not feel anything... so I think its like everything else on the journey every woman is different and your body will feel it differently. But we were both strong and took this injection every night for 18 days leading up to our beta (blood test results) day. One thing that I will remember forever about this specific process, is Chris who never cries, was very emotional doing this nightly, he still never cried but he did say to me "You are a much stronger person than I am, if I had to do this every night, I would have asked you to quit already, I would be asking you if we could just adopt a child, because I could not take this pain nightly or let you stick this HUGE needle in to me every night." Then he said "So thank you for giving your body and enduring this pain for me and our son, I love you and you are so strong". Of course I cried even harder the particular night...
As a side note- my friend Danielle Kolachik who owns a nonprofit called The Dkol La Femme Project photographed pieces of our story, in part to raise some awareness and also to help us through this journey, she even came to the transfer with us. Check that our here... https://thedkollafemmeproject.org/blog/2018/8/29/the-dkol-la-femme-project-embryo-adoption
Chris's smile in this picture both warms by heart and breaks it at the same time. He was so purely happy. He like myself loved that little embryo like it was already his son, and he was.
I broke down on 9 days past the transfer and took a home pregnancy test (hpt)... we were both home and feeling super positive.... worst mistake ever... it was negative... as much as I swore up and down to Chris that I wouldn't be upset... I wad devastated... I cried myself to sleep. The next day I decided to be super positive again and tried to convince myself it was to early to test. But I knew in my heart that it most likely did not work. I decided to enjoy "being pregnant" for a few more days- because I was, all my friends and family treated me like I was, at work people barely let me do anything, at home Chris and my mom took care of everything, letting me rest. Then Christmas came and our family came to our house and took over letting me rest and enjoy the company, but the whole time there was a little hole in my heart that I refused to pay attention to.
On 14 days past transfer I woke up around 5 am, I decided that I couldn't wait all day for the blood results, so I took our final hpt, a digital one... it revealed that I was once again... NOT PREGNANT. It has to be the worst image in the entire world, I literally fell to floor in our bathroom and cried hysterically until Chris came and found me. He carried me back to bed and held me while I lost my whole soul. Even now typing this I shed more tears for our loss. He promised to stay with me all day, taking off of work and took me to the appointment. The nurse drew the blood and told me its not over until the doctor calls with the results, but I couldn't even pretend to believe that. We left, relaxed at home and waited for the dreaded phone call. It finally came later that night around 5:30 and our doctor confirmed that we were not pregnant. He told us to take some time and come back when we were ready and I got my period.
Even though I knew it was coming, there are no words to explain this loss. It is the worst pain I have ever felt in my life. Its the loss of our son, the loss of our future sons' sibling, the loss of the image of the family of four I have been seeing mentally since the day we received this donation. It's the loss of hope. It's the loss of my strength and I am just so sad. This is why I have not been able to write to anyone, the feelings are terrible to explain and there are no words of comfort. I came across this letter and it expresses a lot of my feelings and if you have had a failed transfer, you might be feeling the same way. http://www.scarymommy.com/ivf-embryos/
Im working on myself, gaining the strength and having hope. I am leaning on my husband, who I have NEVER seen so sad and broken, but we will grow together and build our family one way or another.
Subscribe to:
Posts (Atom)