“Love mommy” 

Today was one of those days that I will always remember. I was putting the kids to bed and, as usual, the last thing I said was “I love you Avani. I love you JD”. But today, instead of saying “bye” or “night night”, JD said “love mommy!” Be still, my heart. My son said he loves me. My life is complete. 

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Being a patient again…

Being a patient again sucks. I am trying to get some POF – related tests out of the way so that they are done incase we do get pregnant. With POF you have to monitor you health like you are an 80 year old woman and like you have an autoimmune disease, since they kinda think it is one. 

Being a patient with a weird condition sucks. I don’t mind explaining what the hell POF is to innocent and curious friends and family. But I DO mind explaining what POF entails to medical professionals you look at me like a science project. Here is an example…

Today I had a bone density scan, something that I do every 5 years ish to make sure I don’t have osteoporosis risk factors. (Remember when the lady I had four years ago treated me like a freak? Cause I didn’t until today). 

So the lady pulls me back and says “wow you are aweful young to be doing this”. Yup, is all I say.

“So it says here you have…premature menopause?” Yup, It’s called premature ovarian failure but OK. 

“So you don’t haves period at all anymore?” Well, it’s more complicated than that, I said. 

“So you are trying to get pregnant and can’t?” Um….no? Yes? “Well I saw specialists to get pregnant.” 

“I just want to make sure this gets covered by your insurance. Have either of your parents ever broken a hip?” 

Me: “my POF is well documented so you shouldn’t need to explain to my insurance why I need this test. Just write estrogen deficiency” 

Her: “so what was the date of your last period?” 

Me: “write ‘nursing'”

Her: OK
NOW, I get that POF is rare. Maybe I should be more patient. But come on lady. if you have questions that you need answered for your paperwork, tell me. Then, if you are curious and want to expand your medical knowledge with additional questions, just admit that and maybe I will humor you. 

I hate going to these appointments and being made to feel like more of a medical marvel/freak than I already do. 

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The other day 6 embryo

If you have been following my posts from this week then you know that I am still processing the fact that both of our embryos are Day 6, not just one like I originally thought. I went back and read my posts from my fresh transfer to see if I EVER knew that they only froze embryos on day 6 from that cycle. Apparently I did but I didn’t care. It sounds like, when I went in for my transfer, they told me they hoped to have 2 to freeze tomorrow. Then, the called and said they froze 3. So, I perceived it as good news that there was an unexpected extra (likely the one that is left) and I was thrilled to have 11 frozen embryos. At that point did I not realize there was a difference between day 5 and day 6 embryos? Was the embryologist for positive that I could only perceive it as such? Not sure, but I am planning to call them this week to see if I can get the full story on why they froze those 3 on day 6. I assume they weren’t ready on day 5. So what does that mean for their odds? And can they specifically tell me if that one of those three that is left is indeed the extra one that they did not originally think would make it to freeze? and does that mean anything? good lord listen to me I am going psycho already…

The second embryo’s story I remembered all along. And I knew it was a day 6 all along. You see, this one was a frozen PN that was thawed for my 3rd transfer/2nd FET. They recommended discard on day 5 and I asked them to hold it one more day (maybe back then I remembered the whole scenario of the one embryo being saved?) I was so proud of my intuition when they called on day 6 and told me it has indeed when frozen! So should we go ahead say that the embryo described above saved this embryos life? See, I REALLY amgoing nuts

 

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Other options and donor stuff (part 3)

After we wrapped up our chat with the doctor we signed our permission form. It says that they can thaw one blast, and then another if it dies.(Brian and I both agreed later that that wouldn’t be the worst thing, because then we would only have to go through one transfer. We both still have that totally ridiculously unrealistic fear that our next transfer will successfully bring us a third child and we will have one remaining embryo. four children was never the plan).

Then, I changed the subject and asked the doctor some questions about our other options. Here is what we learned.

1. If we donated our embryos to the embryo donation program we will NOT be notified whether or not their is a live birth. WTH. This is ridiculous. First, they should absolutely be notifying the original embryo owners/parents because they are doing a selfless act by donating and deserve to know the outcome. Second, they should be notifying the genetic parents (in this case, B and the donor), for health and safety reasons (intermarriage, etc). Looking back this morning I wish I would have told our doc how NOT OK this is, especially since he founded the program. I had more clarity 20 minutes later and  I pointed out to the donor nurse (who we saw last) that technically they would have to report a live birth to our donor agency, and then I could call the donor agency and get an updated number of live births from our donor. She said “yup that would be the back door way to do it” and seemed to be having some pause herself about whether or not their rule was way off. So, anyway, that option is not looking great to us at the moment. Also, 2 is the minimum donation, so we would not be able to donate 1. This option requires separate consent from each of us, B to undergo additional FDA blood tests (even though the embryo is frozen) and a visit with the psychiatrist.

2. Donate to science. There are not currently any active studies on the embryos. But, they just wrapped up a study on early implantation indicators and it had “promising and impressive” results. This required separate consent but nothing else. Later I told B that I have fantasies that our donated embryos would cure cancer or Parkinsons disease, not “just” go to study how to make IVF better. He came right back at me: “why? this is something you are passionate about. You aren’t tryin to cure cancer, but you are trying to help people who are infertile with things like your support group. Our embryos would be helping them too.” Man, sometimes he just hits me with an unexpected dose of Truth.

3. Discard. Only required separate consent. Brian said that if we have a third child and one remaining embryo, we can put that last one in him and see what happens. (This was on post-appointment bottle of wine number 2, as promised Ashley). I may take him up on that.

4. Keep thinking about it and let this decision haunt me for another year. Less of an option than ever. We are making a decision like this week and running with it.

Last, we asked for one of our donor nurses to come in and meet with us. We got to see Dee and she is as sweet and kind as ever. After she saw picture of our kiddos and commended me for nursing my two two year olds (I told her it was all selfish at this point, to avoid hot flashes) we got down to business. I told her that, now that our kids are older, I am starting to have more questions and concerns about staying in touch with our donor agency, and them staying in touch with our donor. What if we or she discovers a health issue and we need to share information? Does the agency keep in contact with her if she moves, changes her phone number, etc? Do other couples with frozen embryos let the agency know if they have additional live births? Will the donor let the agency know if she has live births? Basically, will I ever be able to know how many half siblings our kids have? I guess I am feeling worried that the agency is not keeping their info up to date. There is some anxiety stiring in me about this and I need to do some self reflection to figure out what it is all about. I am guessing it is because our kids are just so smart all of the sudden and I finally realize that, sooner rather than later, they are going to have questions about this whole thing. And I am worried I wont have all the answers.

Anyway, Dee encouraged me to call the agency and ask for an updated live birth report. She also said that her co nurse is the one who handles all the agency updating and she is out of town this week. She promised to ask her about it when she is back and give me a call if she has anything notable to share. So now I need to psych myself up for this call to the agency and see what info they are going to share with me. Wish me luck.

If you are still reading this 3rd post of the morning, I love you.

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Making a transfer plan… (part 2)

I had no idea what to expect from this appointment because it was unlike any other I had ever experienced at the RE. I have had multiple WTF appointments (why the fail/what the fuck) after my failed cycles. But I had never had a “why the success” appointment after my successful cycle! I bled, had ultrasounds, bled more, saw a heartbeat, saw another heartbeat, and graduated! We never discussed what worked. Was it the scratch biopsy? The Zoloft? The Zyrtec? Was it the injectable estrogen? The custom ordered (without sesame or dyes) drugs? It was never even discussed.

We met with a doctor that I had somehow never met before, even after two years and three rounds of IVF up there. His name is Dr Syrop, like syrup, and everyone likes him. He came in and introduced himself. He noted that he had never met us but was very familiar with our case (as I am sure everyone up there is since it is so unique) and I was predisposed to liking him because I knew he founded the donated embryo program there which is new and very needed.

He started right in on my “beautiful” triple strip 7.4 lining. I asked if we could just throw an embryo in there today since it looked so perfect and he laughed. But really he was quite puzzled by the whole thing. He said that nursing does not produced estrogen, so it is very odd that my post menopausal body was making enough estrogen for that nice lining. Then he started in on the theory that I “wasn’t done” and may have ovulated this month due to that cyst, but I put an end to that nonsense right away and assured him it was an old cycst.

Then, the embryo chat. He said we have two and he wants to use them one at a time since I had twins. Agree, sir. He said that there is “no reason to believe there is anything wrong with the double freeze” ie the embryo that was frozen at day 1 and day 6. He said being frozen at the pronuclear stage is not the same as being frozen twice as a blast. But, he said that he would do that one second, because he likes day 5 embryos better than day 6…

So, he pulled up and printed out the embryo reports from all three of our transfers and, guess what, both emrbyos are day 6. As I said in my short post last night, we have no memory of this. But, apparently, after we transferred one fresh day 5 blast on our fresh donor cycle, the other three embryos were NOT ready to be frozen that same day. All three of them were not frozen until day 6. Ugh.

So, I know that this does not mean they aren’t going to work, but it sure as hell feels like a step back. I was so sure we had one “better quality day 5 blast. But we do not. And the other two day 6 blasts from that batch that we used for transfer 2 did not result in a pregnancy. So I am not feeling super optimistic about either of these. Of course, doc said he sees day 6 blasts turn into babies all of them time. But man, the odds feel lower.

The best part of the appointment is that he was 100% in favor of doing whatever protocol worked for me previously. I was somewhat nervous that he was going to say that he didn’t want to do all this fancy/custom stuff since I had finally had a success. But he came right out and said we would repeat the exact same protocol that had work, before I even request it! So that was a relief.

Heres the drill:

Mock cycle with vaginal estrogen pills three times a day and a scratch endo biopsy

Real cycle with injectable estrogen once every three days and vaginal estrogen three times a day

Zoloft

Zyrtec

Injectable progesterone in olive oil

So, thats the plan. I am so happy he is willing to replicate exactly what worked. (Not that I would have stood for anything else, but I was eady for a fight).

He said that to be “safe” I need to be done nursing for two months before we do this. So that needs to happen in August if we want to transfer in 2016 or October if we wait till MLK week in 2017.

So, I will call our insurance and see if we have FET coverage. If not, we will switch our plan in January (perk of being a small business owner!) and plan to do this in 2017. If we already have coverage on our current plan, we still may wait because we could potentially get two transfers and/or a transfer and a birth done in one calander year and meet that dudictible quickly.

I think this is what we are going to do, but stay tuned for a post on the other options…

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Leading up to THE appointment (part 1)

Its amazing how quickly the anxiety returns. On the one hour drive to the appointment I started to get heart palpitations. Those flutters are oh so familiar, as I used to experience them daily when we were doing IVF. They returned like an unpleasant blast from the past.

I pulled into the parking garage and quickly re-experienced another old and familiar form of anxiety: road rage. Everyone in this parking deck is a non local patient or visitor. They all seems to think that their parking spot is going to be right around  the corner, if they just drive sloooooooowly. I want to scream out the window “there is not going to be an open spot at this time of day till level 5! keep driving!”

I walked into the hospital and considered a pit stop at the 15 minute chair massage. Or maybe not a pit stop, maybe I would just do that instead.

I found the womens health department and started the check in process and B found me. Not much had changed: confirm my name and address, copy of my insurance card, and oh yea, become a patient and wear a medical ID bracelet as if I was being admitted.

We headed down the hallway to waiting room three and the anxiety was really setting in. How was we here again? Are we really doing this again? Then, a familiar face!

My friend S from my original support group and her husband were coming down the hall! She filled me in on the annoying details that are getting in the way of her treatment this month…and back to reality I landed. We are so lucky to be doing this again because we want to, not because we have to. Please oh please, universe, let their forever family start next month!

Jolted back into a place of gratitude, I took my seat in the waiting room. The ultrasound tech called us back quickly and her face was familiar to me but she clearly remembered us well.

She started the ultrasound and things looked surprisingly good. She asked if this was our pre-transfer ultrasound and I said no. She said my lining looked perfect and measured: 7.4. WHAT. THE. HELL. It took two months of injectable estrogen to get my lining to an 8 on the THIRD try. And here I am taking no drugs and its a picture perfect 7.4 triple stripe!

Then, things started getting real funny. She said she thought I ovulated. Um, what? No lady, I don’t think that happened. She was sure and pointed out the corpus luteum adjacent to my left ovary. I reminded her that that is a cyst that has been there for 5 years. She nodded, but still didn’t seem convinced. Ugh.

As expected, my ovaries were both empty. Plain ol’empty, not a single solitary follicle. Which, I guess, is what I want, because it would be really annoying to have a follicle get in the way of our plans now. But still, all these years later, it stings to be reminded how especially infertile I am.

After I hopped off the table to get dressed the tech asked B to see pictures of our kids. She oohed and awed over them and, for the first time all day, the tears came to my eyes. Yes, we are here because I am still infertile. Yes, we are here because doing donor egg IVF is our only options to expand our family. Yes, this sucks. But man oh man are we the lucky ones. Back at the RE, but showing off pictures of our two beautiful kids. Let the crying begin.

 

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We survived the appointment 

I will share a long post and update and feelings tomorrow. Now B and I are out to dinner and drinking wine. The big update and kind of new to me information (that I guess I forgot) is the BOTH our embryos are day 6. Apparently after our first/fresh transfer, no other embryos were ready on day 5 (except the one we transferred which led to a beta of 4). Three were frozen on day 6, not day 5 as I was remembering. So two day 6 embryos remain. Hmm. I feel a bit discouraged by this already…

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