Pregnant with JRA: First trimester re-cap!!

I can not believe I am already well into my second trimester of pregnancy! It is surreal, exciting and terrifying all at the same time. The first trimester was a blur of surviving the nausea and anxiously waiting for each follow-up ultrasound appointment. I feel thankful that I have had three successful and healthy ultrasounds thus far and things are moving along right on track. I have to admit, only in the past week or so I have really begun to feel it's real. My stomach has started bulging out and it's becoming harder and harder to hide the truth!

I am going to try to remember as much as I can about those first 12 weeks now for a re-cap:

Weeks 4-6: As a result of my IVF procedure, finding out I was pregnant was slightly different than typical. I had my embryo transfer on July 5th and literally watched them insert the embryo that is currently wiggling inside of me. How strange! I waited 5 days before taking a home pregnancy test, knowing that it could be a false positive or false negative, since the IVF medications makes pregnancy tests less reliable. However, it was a positive! At this point, I wasn't even 4 weeks pregnant yet! I was thrilled but still cautious. I waited an agonizing 10 more days before having my first blood test which confirmed the good news!

Weeks 4 and 5, I actually had lots of bloating and nausea, however, I was still on many IVF medications and recovering from the whole process, which added to my malaise feeling. This was confusing because I then started to feel much better around week 6, which increased my anxiety.

Weeks 6-8: The first of my real pregnancy symptoms begin to really start these week. I began to have nausea randomly throughout the day where all of a sudden, I would feel sick to my stomach. I found chewing gum and ginger chews helped as well as eating lots of ritz and saltine crackers. I was usually feeling better by dinner time but then I frequently felt nauseous again after dinner as I was trying to fall asleep. Fortunately, I never actually threw up, but I frequently gagged and dry heaved. Awesome! These few weeks, I was also anxiously awaiting my 8-week ultrasound. It was such a relief to finally see a beating heart!

Weeks 8-12: My nausea started to decrease around week 9-10, which although is a fantastic feeling, it also begins to cause more anxiety about "why am I feeling better?" However, the extreme fatigue started to set in around week 9 and 10. I was exhausted and had to consciously think about staying awake. Fortunately, this week ended with our 12 week ultrasound! Everything looked great and it was so surreal to see baby moving around inside my stomach!

Weeks 13-16: Start of Second Trimester: I definitely started to relax more after the 12 week ultrasound, however, I still found myself often having to remind myself that I really was pregnant. Around weeks 13-14 my stomach started to be more noticeable and I dove headfirst into buying maternity clothes. I may never wear regular jeans again! Although the nausea and fatigue subsided, I was greeted with new symptoms of pounding headaches and heartburn. My OB recommended Tums and zantac which has been helping the heartburn and the headaches are starting to decrease. This week ended with our 17 week ultrasound which was the fetal anomaly scan. This ultrasound was really neat because they looked at every organ, the heart, legs, arms, face, kidneys, etc. It was really cool to see the four chambers of the heart pumping blood as well as the bones in the baby's legs. Everything looked good and baby wasn't cooperating to roll over so we get another ultrasound in four weeks to look at the spine. Baby was moving all around but I haven't felt it yet. I'm looking forward to that in the upcoming weeks.

JRA: Amazingly, everything has been good with my Arthritis and Uveitis. I have some aches and pains in my knees but I think it's from carrying more weight and trying to walk 2-3 times per week instead of Arthritis symptoms. Hopefully, as I get bigger each week, my joints will continue to be quiet.

More updates soon!

IVF Cycle #1- Embryo transfer and the two-week wait

Five days after the egg retrieval, we found our way back in the familiar IVF operating unit. I started to drink water on my way in as directed and by the time I had been checked in, I was bursting at the seams! Supposedly, they had the most patients ever that day and the doctor was running over an hour late. This hour turned into two and I had enough time to empty and refill my bladder three times before the transfer! The transfer was painless and easy, much like a pap smear. A very caring and motherly nurse explained everything step by step to me. As the doctor was inserting the embryo she told me not to move and I don't think I have ever been so still in my life! It was over in 15 minutes and we were given pictures of the embryo and the embryo inside my uterus. It was a very surreal experience. 

Our embryo!

My clinic does not require any amount of bed rest. I took it easy that afternoon but did go to my acupuncture appointment that same day. Although, it was probably the least relaxing acupuncture session yet! I was lightheaded from not eating lunch yet and my head was spinning with too many thoughts! I took it easy the following day as well. Thus began the two-week wait...

This two week wait was very hard. My mind was spinning with thoughts about if it worked or didn't. I battled back and forth between taking a pregnancy test or not. However, after five days I caved and decided I wanted to know the outcome with my husband by my side instead of at work with a phone call. I took a test on the night of day 5 (after hours of googling home pregnancy tests after IVF) and it was positive! Faint, but positive! I took two more that week and all were positive. This made the week leading up to my pregnancy test so much more bearable! It was also nice to have one week that only my husband and I knew about the news before telling our parents. I had three HCG blood tests that all showed doubling and now begins the more dreaded three week wait until our first ultrasound!

I am having mixed emotions this time. I am obviously thrilled that it was successful, but I still can't quite believe its real. I am having some pregnancy symptoms such as heart burn and fatigue and I began to feel a little nauseous this week. However, I know that I am guarding myself from becoming too excited yet. I am hopeful that this will change as time goes on..

IVF Cycle #1- Week 2 of stimulation and Egg Retrieval

Week one of my first IVF cycle went by quickly and uneventfully. However, week two was more challenging:

Cycle day 7: This day I went in for my first monitoring appointment. I had blood work and a transvaginal ultrasound. They said everything looked good and I had 6 follicles on the right and 3 on the left. They had me add in the Centrocide at this point and decrease my Gonal-f from 150 to 112.5

Cycle day 8-10: For the next three days I continued with morning ultrasounds and blood work. They kept my Gonal-F at 112.5 and on day 10 I had 10 follicles on the right and 6 on the left. I was feeling OK, but becoming really tired from all the early morning injections and appointments.

Cycle day 10: On day 10 I was told to trigger at 9.30 pm with Lupron and HCG. I was unnecessarily anxious for the HCG trigger, which was my only intramuscular injection all cycle. However, it didn't hurt at all. In fact all of the IVF injections hurt way less than my weekly Enbrel injections.

At this point in the cycle, I was feeling quite bloated and wore only elastic band pants or skirts for the rest of the week!

Egg Retrieval: We left our house around 7am for our egg retrieval in order to arrive the required 1.5 hours early. Once at the hospital the nurse checked me in and began gathering my medical history. At this point they left my husband in the waiting room for him to be called to produce his sample. However, my husband and I were texting back and forth and after a 30 minute wait still no one had come to get him. This was frustrating as I was anxious and would have appreciated if he had been able to stay with me. Finally, I asked where he was and one of the nurses went and got him and assured us they would find him when he had to produce his sample. I walked into the OR independently, they got me settled on the table and then begin giving me the anesthesia and that's the last thing I remembered. I woke up and my abdomen was really crampy and sore with sharp pains. The nurse gave me one dose of pain medication which took the edge off but I was still quite sore, so she gave me one more 1/2 dose before I left. They had collected 22 eggs which was great!

Retrieval recovery: I spent the rest of the day at home sleeping and resting. The next day I was still sore and my lower back was really achy. I went to acupuncture but that was all I had the energy for. On the second day after my retrieval, I felt less achy but I became very nauseous in the morning after taking my Estrace pills and felt nauseous on and off the rest of the day. I made sure to drink lots of water and gatorade during this recovery and my bloating decreased little by little. I also had to take a pill called cabergoline to decrease my risk of OHSS due to the high number of egg retrieval. Fortunately, by the third day post egg-retrieval, I felt much better and more like myself! We learned that we had 18 eggs fertilized! I was so thankful to know that we will probably have some embryos to freeze. It made me feel less stressed about our fresh transfer having to work, knowing that we have back-up!

Today in just a few hours is my embryo transfer! I am nervous and excited! It's strange to think there will be an embryo inside of me this afternoon! I have acupuncture tonight at 6pm and then I plan to just rest and take it easy tomorrow and return to work on Thursday! Fingers crossed for success!

Let's get this party started: IVF Cycle #1 is underway!

This post is long over due but a lot has happened since my last entry. First of all, I got my "box of meds" in the mail. Having had JRA my entire life, I am used to having tons of medications and am not easily overwhelmed with complicated medical regimes. However, this was a much larger box then I was expecting. It also contained a ton of 1 1/2 inch intramuscular needles. This caused me to panic, because under my protocol I only have one intramuscular injection. After a panicked 9.00 pm phone call on day 2 to the on-call fertility pharmacy nurse, we realized these needles were intended to be the syringes you used to mix the medicine, and you could just unscrew the needle cap. Crisis averted. 

Cycle Day 2: I was on birth control pills for two weeks. I had no side effects from these pills but it was a long two weeks anxiously awaiting the green light to proceed with the injections. I had my baseline ultrasound on cycle day 2 to determine my Antral Follicle count and make sure there were no cysts. I started my Gonal-F injection this night. It comes in a nice epi-pen style injection and I barely felt it.

Cycle Days 3-5: I dutifully completed my Menopur injection each morning around 6.30 and my Gonal-F injection, every night around 8.30. I felt ok throughout most of this week. I was definitely feeling tired, crampy and more bloated by day 5. However, I think I felt tired from waking up at 6 every day to do the injection. I went to acupuncture on day 5 and have my first follow-up ultrasound and blood work on Day 6.

The one thing I did that I felt was really helpful was to make a calender to keep track of all the medicines. There are a lot of medicines to keep track of and it helped the weeks go by quicker when I could cross off the days! I invoked Daeneyrs, the mother of dragons, from Game of Thrones as inspiration for my cycle. I felt like she was a strong inspiration!

Will update more!

Cycle Day 1: Pre-IVF cycle

Today is cycle day 1 of the month before my first IVF cycle. In some ways I feel like I have been waiting for this day forever and in other ways I still can't believe its happening. I initially thought that an IVF cycle was one month long, but it is frequently about two months long from start to finish. This month I will take birth control pills to help suppress my hormones and regulate my cycle. Next cycle I will start all the injections to suppress ovulation and then stimulate the ovaries to produce many eggs in preparation for the transfer and retrieval.

Since my last entry I successfully had hysteroscopy #3 to remove the left over tissue from my miscarriage. It wasn't as painful as I expected and I even returned to work that afternoon with minimal cramping. I am hopeful that I will not need many more hysteroscopies in my future, three is enough! I then anxiously awaited the insurance approval and here we are.

I have been attending acupuncture for the last few months and you can read about that here. It has been relaxing and has helped decrease my stress level. I am going to continue to try to take it one day at a time for the next two months..

One step forward, two steps back.

Since my miscarriage in February, I have often felt like we continually take one step forward and then two steps back towards getting pregnant again. Since I last updated, I had an office hysteroscopy to determine the "state" of my uterus. I made the mistake of googling this procedure before my appointment and had managed to make myself incredibly anxious. However, the procedure itself was only mildly crampy, and over quickly. Unfortunately, they found some retained tissue during the hysteroscopy and recommended a surgical hysteroscopy to remove the tissue. I was not expecting another surgical procedure and this felt like a huge set back, pushing our timeline back again another month.

The day before the surgical hysteroscopy I had an ultrasound scheduled to determine if the retained tissue was still present. The ultrasound showed a clear uterus. Hooray! We cancelled the surgery and scheduled office hysteroscopy #2 and an endometrial biopsy to once again make sure my uterus was clean and ready to go. Unfortunately, this procedure showed that the retained tissue was still there! Two steps back again. We are now waiting to have office hysterocopy #3 to remove the tissue and then hopefully (all fingers crossed) proceed forward with IVF.

In the mean time, I made an appointment with a different fertility clinic. Dealing with very specialized doctors my entire life for my JRA, I am not used to having so many different qualified doctors to choose from. Although, I believe my current fertility specialist is very competent, we have not been overly pleased with the lack of communication between the doctors, nurses and patients. We often feel like procedures are being scheduled before being explained to us, or we are being shuffled around between a variety of different doctors who aren't fully aware of our plan of care and treatment history. For now, we will continue to proceed with our current clinic as to not be delayed any longer and will investigate another clinic at the end of May. Hopefully, we will soon be taking one, two or even three steps forward at a time!

Picking Up The Pieces

Update: Before I share my new post, I want to give a quick update of where we are now. After my last post, I had a D&E. Often times this is a sad day, as it can symbolize the pregnancy officially being over. However, I had felt that way since learning about the miscarriage the week prior. I was actually eagerly awaiting the D&E because it meant that we could move forward to the next step. Unfortunately, my beta levels took a long time to decrease and were still at 4 even after a "period." I had an office hysteroscopy to investigate and it was determined that there was still some retained tissue after my D&E (a known complication). As a result, I now need to have a surgical hysteroscopy to remove the last remaining tissue. Initially, I was disheartened by this momentary set back. However, if we are to move forward with IVF, I would rather do everything possible to give us the best chance of success. So that's where we are now, waiting for my next cycle so I can have the hysteroscopy and hopefully continue moving forward with IVF. In the meantime, I am taking advantage of this extra time to prepare myself physically and mentally. I have been going to yoga and may try acupuncture.

Picking Up The Pieces

I just returned for a week long vacation in Florida. Lying on the beach and submersing myself in a novel was what I needed to distract myself from the many ups and downs of the past two months. I grabbed a Nicholas Sparks book from the condominium library, a novel about a cowboy meeting an elderly man and their friendship that evolved. However, I couldn't find myself feeling motivated to read it, so I switched it for a Jodi Picoult book about a music therapist overcoming some of life's obstacles. I was intrigued by her career as a music therapist which has always interested me during my career as an occupational therapist. On page 5 of this book it discusses the main character, "Zoe," and her struggle with infertility. I immediately put the book down and scoffed out loud to myself. Out of all the books I could have chosen, I randomly choose a book about a women and her struggle with infertility and miscarriages. How ironic! I could have chosen to pick another book, but I felt like it was too coincidental that I choose this book. 

At one point in the story, after she has just had a late term miscarriage at 28 weeks and delivers a stillborn, she is angry lying in bed and throws a clock radio shattering it to pieces. She decides that she needs to pick up the pieces of the broken radio before someone walks in and pick up the pieces and move forward with her life. I feel that at this point in my journey I am picking up the pieces to move forward as well. It still stings when a baby shower invitation arrives in the mail or when I see the cute young family at the beach playing with their two year old twins, but instead of being sad that we could have had those moments, I am excited that we will have them. There are still many appointments, procedures and obstacles ahead in our adventure to become parents but I have begun to pick up the pieces, one a time, to move forward in our journey. 

The sunrise my husband and I watched on our last day in Florida. 

When things don't go according to plan...

Having had JRA my entire life, I am used to things not going as planned. I can't even count the number of times my typically positive attitude is crushed after having heard that my Uveitis or JRA is flaring once again. I think subconsciously I was trying to prepare myself for the possibility of a miscarriage, knowing that nothing in my life has come easily. However, nothing could have prepared me for that ultrasound appointment. 

I was having an early ultrasound by the fertility clinic. I didn't have an appointment scheduled with my OB until 10 weeks and when I called to cancel my follow-up appointment with my fertility specialist, I voiced my concerns about waiting so long until being seen. The nurse said they would see me sooner for a 7 week ultrasound. I had had pregnancy symptoms on and off for the past 7 weeks. I was occasionally nauseous, cramping, bloated, etc. Although, all my symptoms were varying in intensity, I had no reason to be concerned that anything was amiss. We had told our family and many close friends and I was beginning to believe that this was really happening and we were starting how we were going to tell more friends around Valentine's day. 

We were brought into the ultrasound room by a young, friendly technician, who explained what was going to happen and than began with the abdominal ultrasound. She took her measurements and then asked me to change for the transvaginal ultrasound. I thought I saw what looked like an embryo on the screen, but never have been pregnant before, I was unsure what to expect and I was uncharacteristically quiet throughout the whole process. She explained it is protocol to have the doctor's assistant come in to oversee the transvaginal ultrasound and explain the results. 

The doctor's assistant was cold, blunt and barely looked at me throughout the process. I began to become concerned when she asked, "have there been any other images of this?" She then went on to explain that typically at 7 weeks there should be a heartbeat and based on the size of the embryo, this was a failed, non-viable pregnancy. She was sorry and they would call my doctor to let her know. They then left us shocked and in disbelief in the dark, ultrasound room. I could barely process the news and immediately began crying, still not fully comprehending what had happened. 

My fertility doctor was very empathetic and agreed that it was in fact a failed pregnancy. She then went over some of the early results of our fertility testing and recommended a D and E procedure and to schedule more fertility testing at my next cycle. This 45 minutes appointment with the fertility doctor was a blur. I was listening to everything she said but the words did not seem real. Just two hours previously we were discussing who to share our exciting news with next and how we would every agree on a boys name we both liked. Now we were discussing a surgery to remove the embryo and further fertility testing. I felt numb.

I was able to hold it together until we got into the car in the parking lot. All the emotions off the past few hours overwhelmed me. Why did this happen? Was it my JRA? Will I ever get pregnant again? Is this just the first of many miscarriages? What do we do now? It's not just not fair... That following weekend was one of the hardest weekends. I was crushed, devastated, angry and worried. I have known many people who have gone through miscarriages, but you truly do not understand the grief, emotions, and sadness that comes with miscarriages until you experience it personally. What's more difficult is that these emotions are usually dealt with silently as women are expected to get right back into their normal lives. For that entire following week, I became upset just saying the words aloud. I avoided all social media. Pictures and status updates of pregnancy and babies brought me additional anger, sadness and grief. I bowed out of the one year old birthday party I was invited to over the weekend. How would I be able to see babies and pregnant mothers without becoming angry and upset over their success. It wasn't their fault they had successful pregnancies, but where else would the frustration and anger go?

I had my D and E on Friday and will write about that in an upcoming post. I am still sad about my miscarriage and will be for many months to come. This is an experience that never leaves you and it will be forever a part of our journey to start a family. However, I am feeling much better now and am ready for the next steps, whatever that may be...

My Big Fat Positive!

On New Year's Day I found out I was pregnant!! I still can't believe its really true! I am only 6 weeks pregnant so we have just told our families for now, but we can't wait to be able so share it with everyone!

As you can read from my previous post, we met with a fertility specialist in December after 7 months of trying to get pregnant. She agreed that it would be reasonable to pursue some testing to see if there was something preventing conception. However, one of the tests she recommended was called an HSG, a presumably painful procedure where they inject contrast die into your uterus to make sure no tubes are blocked. She advised I want till my next cycle and enjoy the holidays before scheduling this procedure. Fortunately, I am still waiting!

In light of all these fertility appointments, I was totally not expecting a positive test this month! I took a test the morning of New Year's day because we had plans with friends over the weekend and I wanted to know if could drink. I was completely shocked when there was a faint line on my wondfo test strip. I quickly chugged as much water as I could to take my last first response test and there was a bright, bold second pink line within seconds! My husband was at work so I had to process this news by myself for the next 8 hours! It was so hard to keep it a secret until he got home from work, but the look on his face was worth it!

It has been one whole year since we first met with my rheumatologist in December 2014 and began weaning off cellcept and methotrexate, in order to start trying to conceive. There have been many physical and emotional ups and down over the past year but we are thrilled that it has all finally paid off! 

I will be continuing to update here as my pregnancy progress and will link this blog with my main blog, allgrownupwithjra, once the first trimester has passed.

Stay tuned!