Maybe we will be the couple that it didn’t work for, by Sophie


This is a raw, open and honest story of sheer determination, bravery, heartbreak, hope, sadness, fight, fear, desperation, love and reality. This is Sophie’s story, and we thank her for sharing

I hope this shows a story with silver linings and resilience despite the outcome not being what we have hoped for.

This sums up our IVF journey so far.

  • 8 IVF attempts
  • 7 fresh cycles
  • 2 Frozen transfers
  • 36 eggs
  • 11 embryos
  • 2 nothing fertilised
  • 2 no eggs collected
  • 9 embryos transferred
  • 2 miscarriages
  • 6 failed cycles

11 years ago I was diagnosed with breast cancer at the age of 31 and that was the first time I heard about fertility treatment. We had been engaged for a number of years and had always thought we would get married and have children of our own. When I heard the news ‘It’s cancer’ the rug was well and truly pulled out from underneath the straight forward life plan we had in mind.

I was told I would need the cancer to be removed surgically and then I would need Chemotherapy and radio therapy and then a period of hormone treatment. The cancer I had was oestrogen positive which meant it grew by feeding on the oestrogen in my body. This meant that when we asked about fertility treatment we were told we could have one attempt at getting some embryos before I would need to start my chemotherapy and we had a limited time to do this. We didn’t take long to decide that this was what we wanted as we wanted some reassurance that we could still have a family if the treatment had an impact on my fertility.

At the time some family thought we were mad to consider it and wanted me to focus on my health and not take any risks but we knew we wanted to do it.

I had my surgery which was successful and the tumour was removed

We had to get straight into looking into the fertility treatment. We met with the centre for life in Newcastle and were thrown into a world we had never come across before. They were fantastic and explained everything to us. We spent a day at the fertility centre going through the protocol and what would happen signing the forms and having the medication explained to us. I now know you would have much longer to process this information but we didn’t have that time.

I needed to make sure my smear test was up to date as well before starting the treatment. As we waited for the results to come back, I healed from my lumpectomy and lymph node clearance, making room to run/walk the race for life with my amazing friends in between. Just before this my results came back and I had pre-cancerous cells identified. I went into a panic that I had another cancer, as at this stage I didn’t really understand that it wouldn’t have spread in that way. The doctors calmed me down and thanks to some amazing nurses I was quickly referred and booked in for surgery to remove the cells. This had to happen quick enough for me to begin fertility treatment and still meet the set deadline for starting chemotherapy. The surgery would delay the fertility treatment slightly which we had to agree with my oncologist. He gave us an additional 2 weeks to complete the cycle but no more than that.

We began the down regulation and then the stimulation whilst in between looking at wigs and deciding whether to use the cold cap to try to save my hair during chemotherapy. I tried so many wigs and my friends supported me with this. I worked out I was definitely not a blonde! And tried a grey one to see how I would look when I aged!

Finally, we got to egg collection day

We got 20 eggs. I didn’t know if this was good or bad but we went home to wait to see if they would fertilise. Despite not being married we had agreed to freeze embryos, not eggs as we had been together for years and were due to get married the following year (this had to be postponed as we didn’t want the cancer cloud hanging over the special day). We got the call to say 7 had fertilised and we needed to wait to see if they grew to day 3 for freezing.

After an anxious wait we heard we had 4 embryos that they were able to freeze. Finally, I was able to start my cancer treatment

6 cycles of chemotherapy, one every 3 weeks. This was followed by 4 weeks of daily radiotherapy. When I completed what they called my active treatment I would then start taking Tamoxifen. We were told at least 3 years of this before we could consider trying for a baby. Tamoxifen blocks the oestrogen in your body and puts you into a false menopause. I did not take to this well and my body didn’t respond well to it at all. I completed 1.5 years and then my oncologist decided we should try a different drug due to the extreme side effects I was experiencing. I moved onto Zoladex injections. Again, I managed 1.5 years and the side effects became too much. They had recommended that in total I should stay on these drugs for up to 10 years with a break if we wanted children but at this time the recommendation was 5 years before trying. I stopped the drugs after just over 3 years and we made the decision that was right for us at the time. Due to concerns around the oestrogen risks associated with IVF we decided to try for a baby naturally.

We had no success and eventually were referred back to the clinic when I was 38 to look into to FET.  During this time we watched friends and family having their own children and building their own families. It did begin to feel like we were being left behind, but we knew we still had time. I had one friend who had gone through cancer treatment at the same time as me and we got each other like no one else could. We would talk about IVF and having a family. Sarah had ovarian cancer and unfortunately before we began our return to IVF treatment she passed away. The person who got it, wasn’t there for me to talk to anymore. However, she was so determined I knew what she would say.

By this time clinics were freezing on day 5 not day 3. Our embryos were all day 3

With the advice of the clinic we decided to thaw all of the embryos and see which ones grew to blastocyst stage and then put 2 back. This was so difficult to get our heads around that some may not grow and it felt like a huge risk to thaw all 4 and not have some for back up, but logically we knew if they were going to grow they would and if they weren’t they wouldn’t. We were so lucky at this point that all 4 came through the thawing process and all 4 grew to day 5. We were able to re freeze 2 and we had 2 embryos transferred.

This was the first of our 2 week waits. It was agonising! When it came to test day, I went along and had my blood taken and had to wait for the phone call. When the call came it was an inconclusive result. This meant we would have to wait another week and go in for another test. We did this and the result then came back negative. I didn’t realise at the time but this was classed as a miscarriage. I stopped all the drugs and had a withdrawal bleed.

We had a short break following this cycle and then got booked in for the next transfer

Before doing the cycle, I went on a ski trip with my school at the time and unfortunately had an accident on the last day which resulted in me snapping most of the ligaments and damaging the cartilage in my knee. I had to have 2 operations and be in a leg brace for months in total the recovery took almost a year. Following the first operation they initially said it would be 8-12 weeks before the second. I rationalised this and thought ok 4 months and we can try again. When it came to it they then stated the waiting list was up to a year. This meant I was devastated. Realising we had a limited time to try again as we could only get NHS treatment until I was 40. We are lucky enough in the North East to get 3 fresh cycles on the NHS and we didn’t want to not be eligible if the next attempt didn’t work. My mum understood the gravity of it and told us to look into getting the operation done privately. We attended a clinic which happened to be with the same surgeon I was seeing on the NHS for my knee. We explained the circumstances and he couldn’t believe that no one had looked at the whole picture. I will never forget the kindness and compassion he showed us in listening to our story. He booked me in straight away for the surgery and didn’t charge us for it. What a wonderful person Mr Gregory is.

I recovered from that surgery and began my physio and so we booked our appointment at the IVF clinic

We booked in for another FET. We decided to take a trip to New York during the February half term and thought this would be a good way to take some time out whilst doing the down regulation phase. Whilst out there we started to hear about a virus that was spreading in China but didn’t think much of it. When we got home we were again so lucky that both embryos thawed successfully and we were planning to put 2 back. We did and had another 2 week wait.

I went in for the test and that afternoon I got the call to say congratulations you are pregnant!

We couldn’t believe it was this finally our chance. During this time we were hearing more about the virus and as I worked in secondary school they were concerned about me being pregnant especially knowing what we had been through to get there. The school sent me home from work a couple of weeks before all schools closed. I was hearing stories about IVF cycles being cancelled and horrible things people were going through. In the mean time we were booked in for an early scan. We were just allowed for Nigel to come with me to the scan and there it was a heart beat. We couldn’t quite believe it. The sister doing the scan was the same sister that had been there for my treatment when I was diagnosed with cancer. It couldn’t be more perfect. She said the foetus was measuring slightly smaller than they’d like but nothing too concerning and they would do another scan in a couple of week. We were booked in and went home to wait. Finally, I was the one who could tell my close friends we were expecting our baby. I knew it was early days but we were so excited this is what we had been waiting for. I began tracking the progress on one of those apps that compares the baby to sizes of fruit and we started talking about news and generally getting carried away. We couldn’t see anyone at this point as everything was then locked down so we were in our own bubble. The day of the scan came and we went to the clinic. I had my first midwife appointment booked for the following day. We got to the clinic and Nigel was told he would have to wait outside. I went in for the scan on my own disappointed he couldn’t be there to see.

The nurse scanned me and went very quiet

She said she couldn’t find the heartbeat, but she would get someone else to come and check. I still thought she just probably had it wrong and the consultant would come in and find it. He didn’t. He came in and repeated the internal scan and in quite a cold manner said yes there’s nothing there you have miscarried.

I didn’t know what to think or do. He left the room and I was on my own, sitting there trying to take in what I had been told. The nurse came back in and asked if I would like Nigel to come in. I of course said yes and then realised I would have to tell him that our baby didn’t have a heartbeat. He came in and asked if everything was alright and I had to tell him the news. That was one of the hardest things I have ever had to do. At that time the hospitals were not really open and so we were told our only option was to go home and wait for the foetus to come away naturally. We left the clinic stunned and devastated. On the way home in the car the midwife called to confirm our appointment and I couldn’t quite believe what I was saying when I told her we had just found out we had lost the baby.

Over the next few days nothing happened and I didn’t bleed. I didn’t know what to do and the IVF clinic had now shut so we felt we had no one to ask. Luckily, I had the number for the clinic counsellor and so I contacted her for some advice. She called me and I explained I wasn’t coping thinking it was still inside me with no heartbeat. She advised me that I could contact the hospital and explain and they would talk us through our options. She gave me the details that the clinic hadn’t and we called them. We were told we could have a medicated miscarriage or a surgical procedure to remove it. They advised against the surgery because of Covid and needing to stay away from the hospital. We took their advice and drove through to the hospital in Newcastle. I remember getting there and having to walk past the maternity ward to get to the ward I needed. There was a woman standing outside visibly pregnant and smoking, it took me all my strength not to crumble at that point. Again, Nigel had to wait in the car and couldn’t come in with me.  I reached the ward and went in. The doctor and nurse talked  through what I needed to do and I took the medication at the hospital. They allowed me to go sooner than they would have again to avoid being at the hospital. This was one of the most surreal experiences. As I left the hospital having just taken the medication that would cause my miscarriage it was tie to clap for the NHS. Crowds of staff gathered outside the hospital and police cars and ambulances flashed their lights. Nigel saw me and came straight over and together we stood and clapped with everyone else. It felt like I was in another world. We went home and again 2 days later still nothing. They had given me more medication to take at home so I did. Still nothing so I rang up and was booked in for surgery. The evening before I was due to go in is when it happened. I will never forget the image of it in the tissue as I went to the toilet.

That was it. It was over. We were heart broken

It took some time to get over and we were lucky we could hide away easily as you couldn’t see anyone at that point.

Following this I kept a close eye on the different websites announcing when clinics would be back open. Conscious that my age clock was ticking. I don’t really remember Covid which might sound selfish but I was so wrapped up in wanting a baby and not missing the chance we had waited so long for that I just wanted to get back to trying.

When the clinics reopened we contacted the Centre for Life and got booked in.

We decided to have another go

This time it would be a fresh cycle. We knew I had a low ovarian reserve at this point and were warned that the effects of my chemotherapy and my age could affect the egg quality. We wanted to go ahead. We began the long protocol. I had a scan which also identified a fibroid but they said they were happy to continue. We carried on and the scans showed some follicles but not many. The day before egg collection we were told there was 3 follicles and they would go ahead the following day if we still wanted to. We did. Still in the times of Covid all the appointments had to be attended on my own, so egg collection day was nice as Nigel could come with me. He wasn’t allowed t stay and had to go home after giving his sample but it was nice to walk in together.

They did the collection and as I came around the sister told me that they hadn’t got any eggs

I was devastated again. She then told me our only other option was to ring Nigel and ask him to come back and sign some forms to say we could use his sample for an IUI procedure. I agreed and he drove back through in time to do this. Still feeling the effects of the medication, they took me in for the IUI and then allowed Nigel to wait with me until I came around properly. This was the start of the next 2 week wait. I again went in for my test on the agreed date, only to get a call to say the test was negative. They stated then that we would need to book a review appointment in a month or two’s time.

After taking time to talk we realised this would mean we wouldn’t get another cycle in before I turned 40. We rang the clinic immediately and said we didn’t need a review we knew what we wanted to do and could they just book us in. They wouldn’t normally do this but the amazing sister spoke to the consultants at their review meeting and they agreed to go ahead. We were booked in for another attempt. We needed to get to egg collection at the latest on my 40th Birthday. We began another long protocol and again appointments were almost all on my own due to Covid rules. Nigel was at least now allowed to sit in the waiting room and not in the car. The follicle count was low again and my response to stimulation was poor. We got to the days before egg collection and due to the low follicle count, they considered cancelling. We made a strong case not to and we were booked in for collection 6 days after my Birthday in the end. This time they got 2 eggs, which we were happy with, so we went home to wait for the call to see if they had fertilised. The call came the next day and they hadn’t they cycle had failed.

We again were devastated and began to think what now?

We would have to look at paying for treatment and if we could continue. We had completed 4 attempts in just over a year and were both exhausted. Nigel was worried about me and the toll it was taking on my body but I was just driven to carry on. We were booked in for a review on Christmas Eve 2020.

We went to the appointment and were told there was no hope. We should look into egg donation. I had been reading about different protocols and short protocols helping the response of some women with low ovarian reserve and so I asked about this. I was told that it wouldn’t have any effect and that they wouldn’t be willing to do it. We had decided before the appointment we weren’t at the point of giving up yet and so we had begun looking into alternative clinics. We mentioned this and were told that we would be wasting our money and if we were going to do that they would do another cycle for us to save us the cost of travelling elsewhere. We of course declined and left feeling hurt and upset that a clinic which had been so good in many ways would be so insensitive in their response. It reminded me of the approach taken on the day of the miscarriage and how disconnected it had been.

We took a break after this to heal and recover from the previous 14 months before starting to look elsewhere. In that time I did my research and we had an appointment with the Zita West Clinic. They gave us some good advice and we were keen to look into treatment with them. Without going into a whole other tale in this time we were scammed by a friend of ours which left me without a job and so unable to afford treatment. I managed to find a new job but could not ask for time for appointments etc. immediately after starting and so we waited a further 6 months. As my new position was in a school as a senior leader in charge of special needs and looked after children, I did not feel travelling to London for treatment was the best way so we decided to look at the QE in Gateshead. I had heard good things about them and it was close to home. After all the cycles and having to be on my own at many appointments we were determined that we would be able to attend everything together this time and so we booked an online consultation with them.

After our initial consultation it looked like we had found somewhere that would try the short protocol we had been asking about. They actually listened to what we had to say and were open to taking a different approach.

We decided we would try to raise the funds to pay for a cycle

We got a date booked in and started another round in July 2022. It was the school holidays and we thought due to reducing the stress of work this might help as well. It was much quicker this time using the short protocol. We had the rollercoaster of scans where there weren’t many follicles and we had to decide whether to go to egg collection or not but we didn’t give up the hope that despite a low count there was still something which hadn’t been the case previously. We were using different medications and had some renewed hope following the break we had taken.

When it came to the final scan we were told the fibroid I have was in the way of my right ovary and that it might be hard to get to but with some manipulation they would try. We had 2 follicles on each side and decided to go ahead with egg collection.

In the end we got 3 eggs and they all fertilised! We couldn’t quite believe it

Finally, we were a step further forward and maybe this was the chance we had waited for. We got to day 5 and had 2 embryos that were at blastocyst stage and ready to put back. I genuinely thought this time our luck had changed. We did the 2 week wait spending time with family and friends to distract ourselves as it was the summer holiday and I wasn’t working. At the end of the wait we went for the blood test. I played all the mind games with myself and the effects of the progesterone, thinking I could be pregnant, then changing my mind, then being hopeful but trying to be realistic, then being hopeful again and feeling every twinge and ache.

The phone went and we got the news that I wasn’t pregnant. The bottom fell out of our world again. What now?

Determined that we wouldn’t give up and we had got further this time we said to ourselves we would have one more go. We knew we would have to draw a line soon but as people say it only takes one and we had got so far this time. We booked straight in again. There wasn’t much different we could do. So I stayed on all the supplements, ate well, attended acupuncture and fertility massage regularly and prepared for another cycle.

November 2022 we started our 6th attempt

Short protocol, highest dose of stimulating drugs. I was following diet plans, trying to relax where I could but this time I was at work. I planned my injections around the school day, but starting work at 7am meant injecting when I got to school. We went through the same turmoil with early scans. Hoping that all the lifestyle work I had put in would make difference to that follicle count and quality of my eggs. It’s funny how despite being told its not your fault, the more I heard about low egg quality and low ovarian reserve the more I thought this is me that’s stopping this from happening.

Nigel’s sperm count was always high and showed good motility so I just needed to do my bit. The first scan showed lower follicle count than previously. More tears but then renewed determination to eat eggs and be healthy! The next scan was better and showed 2 follicles on each side so we would go ahead again. Egg collection came and we got 4 eggs, managing again to get past the fibroid and access the right ovary. This wasn’t without issues as the drugs tissues following the needle coming out of my damaged veins meaning I got very limited pan relief. I ended up on gas and air during this egg collection and a memory of it like I hadn’t had before!

This time 2 fertilised and made it to blastocyst stage. Again we had 2 embryos transferred and began the 2 week wait

Daily progesterone injections and pessaries. Everyone was getting ready for Christmas and we were waiting and hoping that we could have some good news to announce this year. Not many people knew we were continuing with our attempts at this point, we had decided to keep it to ourselves other than our parents. During the 2 week wait I had 4 days to go until my blood test and whilst at work one day I tarted to bleed. I went into a blind panic that t hadn’t worked. I went home from work that day and tried to rationalise that it could be implantation bleeding. I googled pictures and tried to convince myself. 3 more days and we would know.

We went for the test and again got the call saying it hadn’t worked

I think we knew really but there’s always that bit of hope that you talk yourself into that this time it will be your turn. We had the Christmas holiday to come to terms with it and talked through what we would do. We always said we would know when we should stop. Something in us both wanted to try again but how would we afford it? My mum that’s how. What a Christmas present she gave us. She offered to pay at least half of the cycle. We were all in tears that Christmas day. Renewed hope of one more go again. It was a sense of relief that we weren’t going to be forced to give up through factors outside of our control. It happened at the same time we were able to free up some space on a credit card to cover the other half of the cost. It seems crazy to a lot of people that you would do that but when time is limited and you want something so much you do.

We were straight on the phone in the new year and ready to try again

April 2023 was the next cycle. We had 12 weeks in between where I would take DHEA in an attempt to improve my egg quality. I had to get this sent over from America from my cousin and hoped this could make the difference. I had read about it but never tried it with my history of breast cancer. All the reading says you shouldn’t take it due to the risk but at this point I didn’t think abut it, I wanted to try something else if it would make a difference. This would be our last one we said.

Lucky number 7 and our 3rd attempt with the QE Hospital so it had to be third time lucky as well surely

We were taking supplements, not drinking, eating well, tryng to control stress (however you do that!) and being positive. Of course it only takes one. We had discussed putting an embryo back on day 3 if we only got 2 again (I say ‘only’ like that wasn’t enough. It was! We were just trying to think of anything that could help. Would being in their natural environment be better?) We agreed to see if we got embryos and if so how many and then decide. The scans were lower this time and when we got to the final scan there were 3 follicles but 2 were on the right and the fibroid was in the way along with a major artery. They asked if we wanted to go ahead and explained the financial implications. I remember thinking, it only takes one and we have come this far.

I was conscious of feeling that everyone would think we were stupid to go ahead. But then as always my amazing husband reminded me that it was our decision, it didn’t atter what other people thought as long as we were happy.

Egg collection day came and we had the usual nightmare of getting the canular into my dodgy veins which were damaged due to the chemo therapy. I was nervous that we wouldn’t get anything again but I remember the embryologist calling after the first follicle was drained ‘egg’ and everyone was so relieved. The nurses were amazing and all rooting for us and the amazing consultant got past the fibroid drained everything he could and in the end we got 5 eggs! When they told me I cried, the nurses cried and we were all hopeful.

In the end we had 1 embryo good enough to put back this cycle and so we did a day 3 transfer

Somehow this cycle felt different. I was more relaxed and felt happier. Things seemed different and this somehow gave us renewed hope again. I remember with this one really thinking it had worked. I thought this was it. I don’t know why but it just felt good. Then the same thing again. I started to bleed. I convinced myself it was implantation bleeding and this had to be it, it had to be our turn. Test day came and I was in floods of tears before they even took my blood. I was exhausted. I think by then I knew.

The bleeding was heavier and more like a period. I was right, a negative test result

I had already begun calculating in my head if we could get another cycle in. Could we afford it, I could do it in the summer holidays so I wouldn’t have to book appointments through work again and I could be less stressed. I asked Nigel what he thought, and he agreed, one more go…

We looked at the finances and one night I decided I would apply for a loan. I got it and that was it decided. We would book in again. We spoke to the QE who provisionally booked us in but said we would need a review. We stressed that it would need to be in the summer holiday as work had been so understanding I didn’t want to push my luck. At the review we discussed egg quality and low ovarian reserve again, but we had made our minds up. We didn’t want to look at other options yet, we weren’t ready to give up on our dream of a baby that was biologically ours. The hospital agreed we could go ahead in July, so we did.

This time I took a higher dose of Co Q10 as there was some limited evidence to show this could help improve egg quality. No one really knew we were doing it. You get tired of telling people and the hope they have can be hard to take when you are trying to control your own. This time the scans were better. I was convinced it was due to the healthy lifestyle and diet and all the efforts we had made in the lead up to the 2 previous cycles and this one, meaning it was finally working. We had 5 follicles at a good size. The next scan showed the same and egg collection was booked in. The same warning about the fibroid and my right hand side was there and that it could be difficult, but they had managed every time so I thought that would be the case again.

Egg collection day arrived and we were really positive. 5 good size follicles. However, in a twist of fate this time it wasn’t to be. They couldn’t get to the right over despite the manipulation. However, we still got 2 eggs. We spoke to the embryologist who said she would let us know but we had in mind a day 3 transfer again. The next day the call came and it wasn’t what we were expecting. Neither egg had fertilised, there was going to be nothing to transfer. We were devastated again. They gave us time to take it in and said they would call back. We both immediately thought what about the 3 follicles on the right that hadn’t been drained. Could we do anything with those? Was there still a chance? We couldn’t totally give up after everything.

We spoke to the embryologist and she arranged an online appointment for us that day. We were told and IUI was unlikely to be successful but we could try if we wanted or instead of paying we could take matters into our own hands. We did just that. Not the most romantic situation we have ever been in but it was worth a try. I remember we laughed and cried, you couldn’t write it! We contacted the clinic and told them our decision and so they recommended we stay on the progesterone for the 2 weeks and then do a test, so we did. We headed away to London to visit my sister and distract ourselves. After 15 days I still wasn’t bleeding. I had managed to stay quite realistic but the further along it got the more I convinced myself, maybe this would be the crazy positive outcome we had waited for. Imaging having spent all that money and in the end we just had sex and got pregnant.

I waited until 16 days and did a home test. Negative. I did another and it was negative again

That was it, maybe it wasn’t meant to be. I rang the ward and they said if I wanted to confirm it they would do a blood test. We discussed it and decided not to. Last time it had taken 7 attempts to get my blood because of my veins and I didn’t want to go through that to then have yet another phone call which would tell us what we knew, it hadn’t worked, I wasn’t pregnant.

Exhausted and frankly a bit broken we have taken stock and I think we have decided that we can’t do it again. We are currently at that point where we need to come to terms with the reality that it is highly unlikely we will ever have a biological child of our own. That dream of having a baby that is part of both of us may never be a reality. How do you accept that? How do you make that decision and why should you have to?

I genuinely feel at the moment that I can’t bring myself to hope for it again and that for our own relationship and to gain some sort of life back away from IVF, we need to face it. I don’t think I will ever face such a hard choice and I still waver thinking should we try again, but at the moment I think I know I can’t. I have never reached the point that I have now, where I wander what on earth am I doing?

There are so many things to come to terms with and I know I am lucky to have such an amazing marriage, to have survived cancer, to have friends and family who love us and to have a brilliant career.

I know we will be alright, but we are trying to face losing all the things we had planned in our heads and now have to come up with a new reality

IVF has been a journey and a hard one. You can feel so isolated and alienated, as other people’s lives move on and you are stuck chasing a dream. You don’t feel you fit into the conversations or even want to have them as everyone organises birthday parties for children and discusses getting together as a family. It becomes easier to step away and not take part, rather than try to ignore the feelings it elicits each time. I have started to realise that now I feel distanced from the amazing network of friends I had and that we have all changed. IVF is hard and brutal. Some people get an amazing success story but as we are realising maybe we will be the couple that it didn’t work for, that it’s not meant to be for and that won’t get to make that announcement.

Sophie x

If you would like to send Sophie a message of love, please do get in touch by emailing sara@ivfbabble.com. 

 

 





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