A Balanced Translocation

We’re almost at the half-way mark with this little guy. Last week we had our anatomy scan and he’s doing really well. We have a fetal echo cardiogram scan next month but the doctor said that she doesn’t foresee any problems with that since we saw all 4 of his heart chambers and they looked good.

It was a long appointment but it was really cool to see how they measured everything and we got a few good pics (will try to post them on the new page if I figure out how). He definitely has his dad’s profile IMO. The best part for me was seeing him move and feeling him move at the same time, just confirming what all these flutters really are. He was very active and the tech had her work cut out for her. She had to take a 10min break and made me switch positions and poke my belly to try to get him to turn. When she came back he seemed to be napping so it was smooth sailing after that.

Before we did the anatomy scan they had us meet with their genetic counselor to explain the process and discuss our history. She had the most lovely accent that we could not place. That’s not relevant to the story but it was really lovely.

She asked us why we did IVF and we mentioned the balanced translocation and her eyes seemed to light up. Like we were her first interesting case of the day. She was surprised that it wasn’t in our file so she wasn’t prepared but she gave us all the risk factors and went through our family tree. We’d already done this with our first genetic counselor meeting years ago when we first heard about the BT but it was nice to get a refresher, I guess. She said that the NIPT test we had is so very accurate and she trusts it more than the anatomy scan since that obviously only picks up physical markers.

At the end of it I asked how soon after he’s born can we test to see if he has his father’s BT or not. She said that if we didn’t want to stick him they could draw the blood at birth from the umbilical cord. Then she said “If you feel it necessary to know that information.”

It never once crossed my mind to not know. She said that what if we tell him and he feels he could have gone have done without that information. She said that N is fine so the baby will be fine. I found it strange that she seemed like she was in the out-of-sight-out-of-mind camp and I didn’t really like it.

Why would you not want to know that information? Our plan is to find out as soon as possible and start having age appropriate conversations with him about what it means IF he happens to have the BT.

I’m a silent stalker in a BT support group on FB and this topic came up a few times and almost everyone overwhelmingly agreed that they would want their children to know as soon as possible, mostly because the would have wanted that information up front as well. Some of them even spoke about starting IVF funds for their BT children as an option which I think is great.

This also brought to light a few other thoughts I’ve had about passing a BT on to a child. What if he has a BT and when we explain it to him and what the possible implications are and he ends up hating us for doing this to him?

It’s a possibility. A scary possibility. One that I have to be prepared for. We have some time to discuss this and prepare ourselves and there’s also the chance that he doesn’t have one he could end up hating us for some other reason. Perhaps because we got him circumcised without his permission. Perhaps because he’s mixed race and he struggles to find his place in society. Maybe he’ll hate us for inheriting my big bunny teeth and his dad’s bad eye sight.

There are so many maybe’s here. Too many. I’m sure everyone has this fear to a certain extent. But the truth is, you just never know who your child will be and how they will react to certain situations. You just have to try to do you best with what you have.

I think our best bet here is to remember that he will have a kind heart and a fighter’s spirit that he inherited from us. And he has two parents who love him immeasurably and we will always try to do the right thing by him.

 

IVF Cycle 5 Begins

I wish I was better at remembering these anniversaries. I was just revisiting my previous cycles and realised that last Wednesday marked 2 years since my first stim injection. It really feels like a longer lol.

I was re-reading specifically my most successful cycle. The one we’re copying now and it turns out it was round about this time as well. I enjoyed reading it. I think I was in a good space as far as excitement and positivity are concerned.

Comparing that cycle to now, the excitement and positivity are lessened somewhat with the memory of four failures versus one. Not to say that I’m not excited and positive. I am. I’m just not as naive as before but I’m trying to not let it get me down.

Anyway, I just finished my last birth control pill last night and when I held it in my hand last night it hit me that there’s a chance that it could be my last bcp ever. I don’t think I’ve ever thought of it that way before and that really excited me.

I had my baseline appointment this morning, just waiting on results and instructions but I should be starting stims on Friday. So there will be a full period coming soon. Yay.

This is going to be another boring daily chronicling of a cycle and for that I apologise, ahead of time. I just enjoyed re-reading and I appreciated the details. Thanks 2015 me!

Anyway, I don’t have anything to report today. I didn’t get an antral follicle count at the ultrasound because I didn’t want it to depress me. Other than that, I’ve contacted the genetics lab and we’re all set to go and my meds get delivered today. I’m also confident that the results call today will be good so I guess I’ll just leave you all to it until Friday.

Here’s to an uneventful but speedy week!

IVF Round Five

Here we go again! It was touch and go for a few days but here we go again.

I had planned to start this cycle with this month’s period but by Monday I’d started spotting and hadn’t received insurance approval yet. I called the clinic only to find out they hadn’t even sent the request to the insurance! I was shocked.

The nurse told me she’d find out where my request was in the queue and she’d call me the next do to let me know if we can start but it didn’t look good.

The following day the nurse called to say that they wouldn’t be able to send in my request in time and I’d have to do the cycle next month. Sigh. I was very sad but I made peace with it. Decided that more time to prepare can only be beneficial so I was okay with starting next month.

Then Wednesday she called again and turned my world upside down. They’d actually sent off the request the previous day and I had the go-ahead to start birth control. Well I had to do the mandatory preggo test the following morning but for all intents and purposes, we were a go.

So Wednesday was a pretty fantastic day to begin with and then N called to let me know that our new RE contacted him with results from his latest sperm sample that was to be frozen. You’ll remember that we were going to send these results to the urologist to let us know if it was a good sample or not. Well it turns out that the sample was excellent. The count had doubled and the motility was great. Of course since my husband took the call we didn’t get any numbers but I can just get the numbers when I call them again.

We’re still waiting on approval so obviously the thief of joy that this journey is, isn’t letting me celebrate just yet. I’m just taking my pills as instructed. If everything goes according to plan I’ll start stims around the first week of November. We’re doing 300iu Gonal-f and 150iu Menopur. The same protocol from round 2 which yielded or record 3 embryos to test.

So we’ll take it one day at a time and I’ll try to keep a level head but I like the sound of this cycle so far… so far.

 

A Long Overdue Update

HI!

It’s been a minute. My absence was purely due to either being insanely busy at work again or spending all my free time on the couch and I don’t think a running commentary of either was blog worthy.

But finally, movement on our side again which is great. IVF really is like sitting in traffic. You’re either completely at a standstill or you’re speeding through a cycle. There’s no happy medium. But I digress.

We had two appointments these past two weeks. One with the third urologist. Touted the best urologist this is side of the Miss’ipi (always wanted to use that line, not sure if I’m using it correctly). And the second with a new reproductive endocrinologist to get a second opinion.

When last I left off, I said that our previous RE had pretty much run out of ideas and was unwilling, at that stage, to move forward with another cycle until we got more answers and a possible second opinion. Our last cycle was a horrendous failure so we all agreed this was for the best.

Urologist:

This day was a mess. For some reason everyone in Boston was on the road and no one could get anywhere. N left the house at 5am to be at their clinic to do an SA at 7 and he was about 15 minutes late due to traffic. Our follow up would be 10:30 to discuss results. Thankfully, after the SA the nurse told him a lot of people hadn’t shown up and they’ll push our appointment to 9. So I rushed out of work at 8 (a mere 30min drive to Boston from my office) and only got to the clinic around 10!! And the doctor STILL only saw us at 10:30. geez!

Anyway, he seemed nice enough but I can’t say that I liked him very much. I won’t deny that he knows his shit though. I went into appointment with high hopes. I spoke to someone a few days prior whose husband had azoospermia and they did a TESE and got 6 vials! I was excited. I thought we’d won the world cup. Of course this wasn’t the case. The doctor was long winded in his explanations and he lost me a few times so some of this information might not be 100% accurate but this is what I got from that appointment.

  1. All the vitamins and supplements we’re taking aren’t doing anything, we’re wasting our time
  2. The Anastrozole N is taking for his count isn’t going to work. It affects a hormone that won’t increase count if that hormone is at the level it’s supposed to be (if that makes sense).
  3. TESE is not a viable option for us because there is sperm in the ejaculate. TESE is reserved for men with azoospermia or a blockage, so no sperm in the ejaculate.
  4. The sperm you have to work with is what it is. Good luck. Try a donor maybe because I see here your eggs are crap too.
  5. GTFO with your shitty sperm and eggs.

Okay so he wasn’t that harsh but it was hard to hear all my hopes get shot down one by one in an hour long conversation. The good news is that at our last retrieval they couldn’t really find anything to work with in N’s fresh sample, that’s why they used the backup sample and that day at the appointment his count was up to what it usually is. We suspect that it was the fact that he has strep throat about a month before we started the cycle but the doctor didn’t think so. I guess sperm just fluctuates and that retrieval day was a bad day. Another good thing is that N has to do another back up sample at our clinic so Dr O said he wants to get the notes of that sample and see if it’s worth using or if he should do another one. That way we’ll know that the backup sample is good if it’s ever needed again.

So that appointment sucked. It sucked a lot. I almost gave up. I didn’t speak to N much when we left and I feel bad about that but I didn’t know how to react at the time. I told all my friends and family that it’s not looking good for us. We’re not at the point where we want to consider donors yet and to have 2 doctors suggest donors was so hard. I cried a whole lot. I also felt like I was being a spoiled brat. I admire women who have gone the donor route. I think it takes courage and selflessness and I also felt like they deserved to be mom’s more because they wanted it more than anything. And here I am crying over the fact that I may never see what my husband and my children will look like. If they’ll have his light brown eyes or my curly hair. If they’ll have his laugh. If they’ll be loyal friends. Will I have to start them early in group activities to help with the shyness both of us struggle with. It was the first time I was really faced with the possibility of this dream not coming true and it scared and angered me. Having that dream slip through my fingers.

I cried most of that day during work and when I got home. I spoke to my husband and he said he didn’t think Dr O would have all the answers. He basically said that a urologist wasn’t the end all and be all. We’ve made embryos before, we can do it again. We just have to keep trying and we’re not out yet let’s see what the new RE says.

Over the next few days I was torn between putting all my hope in this new RE and thinking of what life will be like as a childless couple. When the appointment rolled around I was a mess with nerves. When we sat down he said that he wanted to go over our history and discuss some options and just the way he said it my heart sink. I thought this is it. I’ll never get to meet our biological children.

Reproductive Endocrinologist Second Opinion:

The appointment was at our regular clinic just with a new doctor. I kept seeing pictures of our previous RE and had to laugh at my misplaced guilt. I couldn’t look the pictures in the eye.

Dr P… I couldn’t get a read on him. He barely cracked a smile during the entire consult and I prefer that people at least smile when I deliver my funniest one liners. But nothing. He was soft spoken and spoke kindly and explained everything perfectly. So while he was very serious, he was everything you would need in a doctor. I often say that I don’t need a doctor to have good bedside manner as long as he got the job done I was a little bummed that her never smiled. I know this is crazy but I kept thinking that he was judging us for jumping ship with our old RE. Of course this isn’t the case based on what he was saying. Let me get right into it. There’s a lot of information and I forgot to write everything down.

  1. He is on board with vitamins and supplements and even wants us to increase Ubiquinol as it could help with embryo quality. This is huge to me and N. I know these things maybe probably don’t affect quality/quantity but I really don’t like when doctors dismiss them completely. It just bothers me.
  2. The fact that we’ve had 2 normal embryos in 4 cycles is pretty awesome considering our diagnosis. And we’ve made embryos before, we could likely do it again (note hubby’s words above)
  3. The fact that 2 normal PGD tested embryos (that have a 70% chance of attaching) had no implantation is a little baffling to him and it could be one of 3 things. 1. The labs effed up. 2. Something wasn’t picked up in the genetic screening. 3. something is up with my uterus.
  4. points 1 and 2 are unlikely since it happened twice. At least one of those embryos should have attached. So he’s interested in my uterus. I’ve had 2 HSG’s and 1 endo biopsy and everything is normal. So his next likely suspect is Progesterone. Dr G used vaginal progesterone which he thinks isn’t sufficient so he wants to try the PIO shots (Yay!). He also wants to know if maybe the amount of days I’m taking the progesterone is enough. Typically, you’re given about 15 days of progesterone and sometimes for some women that’s either too much or too little. To find out the answer to this question we’re going to do and ERA test (double yay!)
  5. You can find out about an ERA test here. But just a quick rundown. After our next retrieval cycle we’ll do a mock FET cycle with meds and then instead of a transfer we’ll do an endometrial biopsy (yuck!) and send the sample off to the lab in Spain. If it comes back “normal” then perhaps that means the PIO shots are working. If it comes back pre-receptive then we’ll add a day of Progesterone when we do the next transfer. Now from what I’ve read it sounds like you have to keep doing this test until you get a “normal” result. Dr P said we would only do it once and go from there. It makes sense and I really don’t want to keep paying for a test if we don’t have to because it’s not covered by insurance and will run us around $800-$1000. But yes we are on board and ready to go!
  6. I can’t remember if I have this right but I think he said that if the test comes back pre-receptive then we’ll add another day of PIO but if it comes back normal and we have 2 embryos to transfer, he will consider transferring 2. They typically do not transfer more than one PGD normal embryo but he thinks this could be an option.
  7. He doesn’t want me to do a lap to rule out endo. All these doctors seem to think that I am endo free. I was going to fight him on it but he said that there aren’t enough studies out there that say that removing endo will get you better quality eggs. I guess it depends who you ask but I won’t push the issue. He also said that since I’ve had 2 surgeries in that area (appendectomy and ovarian cystectomy), the doctors would have said something if they’d seen something. Granted there’s a chanced they didn’t see anything if they weren’t looking, but my cystectomy was a full laparotomy so I was completely opened up, it’s unlikely that surgeon missed any endo. I could of course go and search for those surgery reports to find out but I’m not sure it’s worth it and the surgeon who did my cystectomy has since passed away and those records are in South Africa somewhere. That would be a mission. So we’ll put a pin in this one for now.
  8. I did ask (and I’m so proud of me for asking everything) if whether he thought that foregoing PGD testing was a good idea. My reasoning being that we have so few embryos and I read one lonely article that said that some embryos self-correct and it made sense to just transfer what you have and pray for the best. He said that since we have a balanced translocation that most affected embryos would end in miscarriage and he wouldn’t want me to go through a miscarriage and also some miscarriages are more dangerous than others. So fine, that makes sense. I just thought I’d ask.
  9. If we get insurance consent in the next two weeks (fingers crossed) we can start our next cycle. We’re going to go back on the antagonist protocol with 300 Gonal-f and 150 Menopur. He said I respond well with this mix. And I think on this cycle we got 11 eggs and all of them fertilized. I’ll have to check my notes.
  10. His nurse is great I love her already but I’m so very sad to be leaving my nurse. Like really extremely sad. I never realized how important these people become.
  11. I have to come to terms with the fact that we are not ever going to have more than 3 embryos to test. He sounds like that’s the nature of the game with our diagnosis. It’s not great but it is what it is. I have been distraught because we start with double digits in egg counts and then have 3 or less measly embryos. I think if I just focus on a goal of 3 and make sure that I stay healthy to try and get the best 3 that there ever were, then we’ll be okay. Actually 3 to test isn’t a goal to focus on. I need to focus on 1 healthy normal embryo. I’m going to work hard for 1 healthy normal baby. That I can do.

Final thoughts:

A really good IVF friend recommended Dr P. She actually pushed me so hard despite my best efforts to resist change. I will forever be grateful to her for pushing. We both liked him a lot and I’m back to dreaming about who our children will look and be like. I’m beyond excited to start again. I just did the math and if everything goes swimmingly we will only be transferring around April (yikes!) which feels like forever away but at least things will be happening and balls will be rolling. I’m also scared. Knowing that our embryo yield isn’t going to be fantastic scares me. We only have 3 rounds left on insurance so we’re getting to do or die time. That thought is scary. But for now, excitement is winning.

This post was really long but I had a lot to cover. Thanks for reading if you made it this far. I hope to not go into radio silence again until we actually do start again. Maybe I’ll do something exciting this weekend.

Until we meet again,

XX

IVF Limbo

We’ve had 2 appointments since last I updated. N had one with a urologist last week. I couldn’t make the appointment so I sent him with a long list of questions and information. I had requested my medical records from our clinic but they didn’t come in time so they called me with all of N’s semen analysis results.

And then before he went to the appointment I was stressing about whether this guy would have some promising ideas and then I realized that he’s not a urologist who specializes in the infertility. Should have thought about that before, right? Ugh.

Anyway, despite all that, the appointment went well. He put N on Anastrozole instead of Clomid. He said he’s seen better results with it and it should kick in in a few weeks. He said that TESE wouldn’t yield any good sperm so probably isn’t a good option. He also mentioned that him and his wife went through something similar so that was nice. He stressed the importance of putting your marriage first during all of this. I think it was nice for N to hear from someone who’s been through this.

All in all it was a good appointment. Fast forward to Wednesday’s appointment with our RE.

It was a little tough. He said that they had to use N’s frozen sample and his fresh one and they struggled to find anything worth using so they didn’t even use PICSI. We talked about the urologist appointment and he said that the one we went to probably wasn’t a specialist so he gave us the card of a Dr. O in Boston who’s supposed to be the bees knees of infertility urology and he would be able to give better advice wrt TESE/MESA and Anastrozole etc. We also talked about my egg quality. He again mentioned that my eggs weren’t the best but that he’s seen women get pregnant with similar looking eggs.We reviewed our last dismal cycle and he said that he’s pushed me as far as they want to push my body and he doesn’t want to do anything if the sperm sample isn’t going to be any help. He also said that donor sperm is an option if we don’t want to struggle like this anymore.
And then he gave us 3 choices.
1. Donor sperm
2. Go see an infertility urologist, then come back if he has a plan.
3. Get help from another clinic.

I was doing okay up until the point where he said go to another doctor. I cried silently while I listened to him say that his main goal is to get us pregnant so if that means staying with them or going to someone else then that’s our decision. But he gave us no plan and didn’t really give any hope either.

I don’t know, you guys. I wasn’t happy with this appointment. It feels like he’s given up and that’s not something anyone wants to hear. I was on the fence again about getting a second opinion because I trust him and now this. My main worry was that he would suggest donor sperm or say that he doesn’t know what else to do and he did just that. I feel like he fired us.

N is unphased, however. He is positive about this Dr. O. I think I’ll feel more positive once we lock in an appointment date.

I’m doing okay today though. I was really bummed on Wednesday but I’m okay. I mean, I would have liked a plan and start date. Things are up in the air now. So the uncertainty is testing me but being around N’s positivity is rubbing off on me.

I don’t know he does it but I really appreciate it.

So here we are. A couple with yucky eggs and shitty sperm and as of now, no next steps.

 

 

Well That Didn’t Last Long

We’re back where we were 2 cycles ago.

14 eggs were mature (what I expected) and 9 fertilized normally. And then today I got the call that 5 were still growing on day 3.

We’re still not out by any means but I was am crushed.

I hate this. One minuter you’re on cloud 9, the next you’re standing in the greeting card aisle in Walgreens choking back tears wondering if you’ll ever receive one of these baby cards.

There’s, of course, always hope but fuuuuck this suuuucks!!

Next update on Wednesday or Thursday.

IVF Season 4: Episode 12-13

Date: 8.1 – 8.3

Starring: 10 units microdose lupron twice a day, 0.5mg tablet dexamethasone, 200iu Gonal-F twice a day, 5000iu HCG Trigger.

Produced by: 14 follicles (12 on left, 2 on right): Left – 20, 18, 16, 15.5 x2, 15 x5 ,13.5 ,12.5 and a few <11; Right – 14, 13 and a few <11. Estrogen at 3912 on day 13 and 4552 on day 14 (Yikes!).

Directed by: Oh so much nausea and crazy period cramps.

Synopsis: So things have been rough since I last updated. Rough but good, if that’s even possible. It all started when I woke up rudely yesterday morning at 5:45am! I missed my alarm!! My appointment was at 6:30 an hour’s drive away! I was in stupor trying to gather my thoughts and scramble to get dressed and come to terms with being late for everything. I had to lay my head down for a second because I extremely frazzled and just had to wrap my mind around having overslept. I looked at my phone again and blinked a few times and then realized that I was looking at the South African time, 6 hours ahead. The mixture of anger and relief I felt messed me up for the rest of the day. I even gave myself some serious heartburn and couldn’t fall back to sleep for at least an hour. (Side note: This is not the first time that this has happened btw. I should probably change that clock)

Thankfully, I made the appointment with time to spare. I got the funny chatty super quick tech. She went really quickly, as usual, and I couldn’t keep up with her measurements. She lost me at 8 on the left so I really thought that I’d lost follicles so I was pretty down all day. I’m still in shock that she managed to measure those 12 on the left at that lightning speed. She’s the best.

I got the call in the evening that I was to not do any Gonal-F and just the 10units of microdose lupron that night. Then this morning I had to take the 10 units of microdose lupron, 200iu of Gonal-F and 1 Dexamethasone tablet before my blood draw. My estrogen was at 3912 which is the highest it’s ever been. The dizziness and nausea are still ever present and I’ve also been having bad period cramps but according to Instagram it’s all normal.

Aside from being very sick my spirits have been better since my last post. Not even bleeding all over myself after this morning’s blood draw could get me down (I guess she missed the mark with the gauze). That was a lot of blood.

So today I was prescribed another tablet, Cabergoline. This is supposed to help prevent OHSS. I’m supposed to take it tonight at bed time. My estrogen today is at 4552 so I have to take all the necessary precautions. I also bought all the electrolyte drinks and protein bars and shakes.

We did the trigger shot at 7pm and retrieval is set for 8am on Friday. Whenever I’m at the end of a cycle I think that it’s really flown by but I know that just a day or 2 ago I was crying for it to be over.

I’m not going to lie, I’m nervous as hell. I want a good number of eggs but I want to be realistic too. I keep repeating “quality over quantity” to myself just to center myself and be realistic.

It’s been a good cycle, I think, but the best part was having N do the trigger shot and the moment we shared at the end of it. I love him so much. I wouldn’t want to do this with anyone else.

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Please don’t fuck me over