"You may feel some slight cramping"

This is my fake excitement face...

I had my mock embryo transfer and sonohysterogram today. It was not a fun experience! They did tell me if have some mild cramping afterward, but this was nothing like what I expected. I was stressing about it all morning. My blood pressure was high when I got there and the nurse could tell I was super nervous. We sat and waited for 20 minutes in the procedure room too, which just made me more anxious. The procedure was painful from the start and the pain didn't go away until it was all over.
They started with an abdominal ultrasound while she fed the catheter through my cervix and into my uterus. She did that twice to make sure there was a clear path for when they actually transfer our embryo. Again she said I may feel some slight cramping, but it was more than that. It felt like someone was forcing something through my cervix...probably because they were forcing something through my cervix!  When they were done with that, they switched to a vaginal ultrasound for the sonohysterogram. They filled a balloon that was in my uterus with saline solution so they could check for polyps and fibroids. That was the part that hurt the worst. After they deflated the balloon and removed the catheter, she used the ultrasound to look at my ovaries. This part didn't hurt at all, it was just uncomfortable. There were 6 visible follicles on my right ovary and 7 on the left. Meaning they will probably retrieve close to 13 eggs during the egg retrieval.

Once it was over, I did have some cramping for a few minutes. I became very hot and started sweating, so the nurse was concerned I was going to pass out.The rest of the day I didn't really have "pain" as much as I was just uncomfortable. They give you Valium for the actual embryo transfer to relax the cervix. I don't know why they would prescribe that for the embryo transfer and not this, but I'm not the doctor...

I told Brian he didn't have to go with me to this appointment but I'm glad that he did. Half way through the procedure he walked over and held my hand which helped a little. I know it's hard for him watching things like that when he can't do anything to stop the pain or help the discomfort. One kind of cool part was that we could watch the ultrasound on a monitor mounted on the wall. I wish I would have taken a picture, but I wasn't too focused on remembering that moment at the time. I'll be in that room several more times throughout this process so I'll take a picture at some point.

We are on the schedule for a September egg retrieval and embryo transfer. This may be pushed back to October depending on when we get all of our DNA tests back from RGI. We are currently waiting for the testing kits to arrive, which could be 1-2 weeks. Once those are sent in we will have to wait for RGI to create the probe, which will be another 4-6 weeks. We cannot start the process of injections and egg retrieval until we have all the information back from RGI. Another waiting game.

Our next appointment is July 19 with the ART case management nurses. They will go over all of my medications & injections, and explain what each of the appointments will look like. I'll be happy to have this appointment out of the way so we can move forward as soon as possible. Maybe everything will magically take half the time, right?!

-Emily

Sombody Stepped on a Crack

I have to apologize for my absence this week. Unfortunately, not much has happened in the way of IVF. We did have another unfortunate trip to urgent care last week.  I hurt my back taking a class at the gym and by the time I woke up the next morning I couldn’t walk. The muscles in my back had tensed up so much that I could barely stand up straight. Brian had to come home from work, help me get dressed and help me get into the car. Two shots in the backside and a set of x-rays later and I had another fractured vertebrae.

I originally injured my spine 4 years ago. I fractured L4 & L5 in an epic battle with a laundry basket! In reality, I just lifted some laundry the wrong way and had a muscle spasm. They took x-rays and found the break. Apparently I have a weakness in my spine and years of riding horses put a lot of stress on my vertebrae. Totally lame story. I have a couple muscle spasms each year, but never this bad. They took some x-rays and I either fractured L5 again or it never healed properly. I have an appointment tomorrow and I’ll know more after that.

We had our phone consultation with Divya, our genetic counselor at RGI today. We already knew a lot of the stuff she told us, but we did get some useful information.  Originally we were told that they would need cheek swabs from Brian’s Mom, Grandmother and Uncle, as they also have EB. Turns out they will only need cheek swabs from Brian’s parents. They will look at the “genetic fingerprint” and find Brian’s Dad's KRT14 gene and his Mom's KRT14 gene. When they test the embryos, they will be able to tell which ones contain the mutated gene and which ones inherited the healthy gene.

The next step is for them to send us DNA collection kits for the blood samples and cheek swabs. Once they have of our DNA it will be a very long 4-8 week wait for the results.

I have a mock embryo transfer scheduled for next Wednesday which I have mixed feelings about. I’m sure it won’t be a pleasant experience but at least it’s one step closer to actually getting this process started. Hopefully after that I will have something more interesting than my spine and a phone call to write about. 

-Emily

Beaches and Blood Tests

Hello! Happy Tuesday! I don't have much to update on project baby at this point, just a few blood tests. First off though, should probably update you all on Brian's shingles situation. He seems to be getting better every day! He still has the rash and extra tiny blisters on his back and his side, but most of the pain is gone. After just a few days on the antiviral meds, he was back to his normal self again. We even took Renly to the dog beach in Muskegon on Saturday, but he wanted nothing to do with the waves, so we went for a long walk in Grand Haven instead. The friction did quite a number on Brian's side. Somehow the blisters had popped and then dried to his pants. When he went to take them off that night a good chunk of his skin came off with them. Other than a little missing skin he is doing great!

In IVF world, there isn't too much excitement right now. We went for several blood tests and a urine test this past week.  Brian had 3 tubes of blood drawn, while I had a whopping 9! When they pulled out all of those tubes I jokingly asked if they were taking all my blood...she said only half. This set of tests was for The Fertility Center. They are testing hormone levels along with testing for a number of diseases. The next test we will have is a blood test for RGI, the genetics lab we will be using. They need blood samples from Brian and I to create the probe I spoke about earlier when I explained The process of PGD. Our phone consultation with the genetic counselor at RGI is next Thursday. After that we will be sent kits to send in our blood samples and cheek swabs from some other family members. I am trying to remind myself not to complain about the testing too much. Once RGI starts the process of creating the probe, we will be waiting 4-8 weeks before we can take any more steps towards starting our family. Let the restlessness begin!

On another note, many of you have seen the fundraiser we have set up on Gofundme. In less than a week we are already close to 1/3 of the way to our goal! I have shared a few of Brian's updates on my facebook as he is managing the fundraising page. I have not however taken a chance to thank everyone who has come forward to help us. Whether that help is through financial means, through prayer or just moral support, we appreciate it more than you know.

-Emily

"why don't you just adopt?" and other things people ask/say

We have gotten a lot of interesting questions and comments since starting this whole Journey. I thought it would be good to address 2 of the more common topics.

Why don't you just "just" adopt?

This is a very frustrating question for me and we have been asked this a lot lately. Why doesn't everyone adopt? Why don't you adopt instead of having biological children? If  anyone else told you they were trying to get pregnant naturally, would you ask them why they aren't just adopting? Probably not...

Adoption is a wonderful option that many couples and even single people pursue. You never know, Brian and I may choose to adopt down the line even if we do conceive biological children, but we should not feel any more obligated to adopt than other couples. The desire to carry a child and give birth is something many women feel. We wait for the day those 2 lines show up on a pregnancy test. We imagine telling our husband or partner that we are pregnant. We think about how happy our parents will be to learn they will be grandparents. Brian and I have talked about what our babies will look like. We imagine they will have blonde hair and blue eyes, just like both of us. If we have a little boy I hope he looks just like his daddy. I hope they have Brian's calm disposition and his ability to see the best in absolutely everyone. Will our kids love superheroes like their dad or dream of spending all day at the barn taking care of horses like their mom? These are things anyone who desires to have children thinks to themselves.

 Asking if someone has considered adoption is obviously just an honest question, but asking why we don't "just" adopt is something entirely different.


Well it could be worse!

If your advice to everyone going through hard times or facing something difficult is, "it could be worse", do you think "it could be better" every time something happy or exciting happens? Yes, it could be worse! We could be facing one of there severe cases or EB where children often pass away before adulthood. We could be faced with the fear of passing on something different like Huntington's or Alzheimer's. The fact that it could be worse, does not negate the fact that we are trying to prevent extra pain that our children may need to suffer.

Brian's mom has told me stories about when Brian was a baby and growing up and how EB changed the way he was raised. He was born with a single blister on his thumb and within hours more had popped up.  He developed blisters on his gums from bottle feeding. He didn't crawl much and seemed to go straight to walking as crawling covered his knees and legs with blisters.

Brian played football for one season and while he loved the game, the pads and uniform caused such sever blisters and pain, he did not play another year. He was in boy scouts and enjoyed backpacking with the rest of the troop. As you can imagine, carrying a large backpack on his shoulders created blisters that are permanently scarred.

A few years ago there was a story about a family who was asked to leave a Golden Corral restaurant. Why? Because the sores on their 2 daughters arms were disturbing the other customers. They were worried they had something contagious and it was making them uncomfortable. Those little girls had EB. I can't imagine explaining to any child why they were being asked to leave in the middle of their meal because someone didn't want to look at them anymore!

These are not things that anyone wants their children to go through, including me. So yes, it could be worse, and it could be so much better. There is a way to prevent a very painful condition! I believe that is a miracle in itself! We have the opportunity to stop EB in the Retzlaff family forever. Once our children will be born EB free, they will not be able to pass it on to their children. It will be done!

I am not trying to come off as rude or make anyone feel bad for asking questions. Keep them coming! Keeping everyone informed and answering questions was the entire purpose of this blog. We were asked again just the other day why we wouldn't just adopt, so I felt it necessary to share our thoughts with everyone.

-Emily

Blisters upon Blisters: Brian has Shingles!

We spent a very nice long weekend camping in Ludington state park with a large group of family and friends. The weather was perfect other than a little rain on Saturday evening which drove us into town . It seems to have become a rainy day tradition on these trips for us all to go to a bar in town and play Cards Against humanity. We went for a hike, sat by the fire and had a very interesting fishing experience, but that's a story for another time.

This was the best panoramic photo we could get of (almost) everyone. Don't mind my father-in law's 9 fingers.

Anyway, on Friday afternoon Brian started complaining of pain in his lower back, he said it felt like a sunburn but he hadn't gotten burnt. We brushed it off assuming it was no big deal and would go away on its own. By Saturday morning the pain had spread up his side and a small patch of red had formed on his lower back. Sunday morning brought more pain and a second patch, the first patch of red had turned into a cluster of tiny blisters at this point. On the way home every little bump in the road irritated his back. When we got back to Grand Rapids we went to urgent care and they confirmed that Brian does in fact have shingles!!

The doctor asked him about the pain and when he lifted his shirt she saw the blisters from his EB on his waist. He told her what it was and she said it was probably just from his skin condition, even though she didn't know what EB was. He had to explain to her several times that this was a completely different type of pain, burning and stinging. When she finally took a look at the rash, she knew it was shingles. She prescribed anti-viral medication and said the rash should go away in about a week. The pain on the other hand could last months!!! Just what he needs!

Getting ready for bed Sunday night his side started hurting and the rash had spread even more. He literally has tiny blisters from the shingles on top of the blisters from his EB. Brian will be taking medication 5 times a day and I will be washing my hands and disinfecting the house like a crazy person!

Tiny Blisters on top of big blisters :( This spot on his side is particularly painful. 

Prayers and crossed fingers that this won't last long!

-Emily

We went to see the baby doctor!

We had our much awaited initial consultation at The Fertility Center on Tuesday. 

Yes, we took a selfie...we are trying to document everything throughout the process! 

 I am pretty overwhelmed by the amount of paperwork and literature that was given to us. Three different folders! One with info about the whole process of IVF, the pricing (scary), the meds, etc...another folder with a spreadsheet to log my appointments and a list of all the different terms we are going to hear throughout the process and a third with just information on a company called Reproductive Genetic Innovations LLC.

RGI is the PGD lab that the Fertility Center most commonly works with. Our Geneticist had initially referred us to 2 different labs, RGI which is in Chicago and Genesis which is in Ann Arbor. I called both of them to discuss pricing and specifics and we decided to go with Genesis as it is closer and seemed to be more affordable. I wrote last week about the great news that our insurance will pay for PGD...may not be such good news after all. There are 2 labs that are in network, one in New Jersey and the other in California. My research on those two labs have left me feeling uneasy. They are both fairly new and the people who have worked with them don't seem to have much good to say about their experience.

We spoke with our doctor and she has never worked with either of the covered labs before, which makes me nervous. Since they are both so far away, we would be responsible for flying the embryologist from those labs to Grand Rapids to collect the biopsies from the embryos. We would also be responsible for their return flight to New Jersey or California the same day.This would cost a pretty penny which would almost be the price of the PGD itself. Our other option is to go with an out of network lab. This would be covered at 50% after a $4000 deductible.

I spoke with someone at RGI last night about pricing again. They will be a couple thousand dollars more, but will test all of the embryos we sent them, where the $5000 at Genesis only covers 8 embryo's. Any embryos added after the 8 would cost an additional $500 each plus a logistics fee. I set up a phone consultation with RGI as they were scheduling 3 weeks out. If we do decide to go with RGI we will have to send them blood samples from Brian and I along with cheek swabs from any family members who also have EB (Brian's Grandma, Mom and Uncle). We are feeling pretty lost as far as which lab to go with. We will have to think on it and pray on it.

The rest of the appointment went great! We got to meet our doctor, see the procedure rooms and ask a lot of questions. We had some bloodwork done and we both need to have more blood drawn next week sometime. They will also be performing a semen analysis next week to determine if they will need to fix Brian's varicocele. They assured us that it will probably not be a problem as they inject the sperm directly into the eggs. Towards the end of June I will be going in for what they call a mock embryo transfer. They will use a catheter to inject saline solution into my uterus. They will then perform an ultrasound to see the structure of my uterus. It sounded pretty painful to me, but they said it will only take 20-30 minutes and I should only have some light cramping afterwards.

A month or two after the mock transfer, I will start my injections. I will need to give myself 2 shots each night for 10-14 days. I will then add a 3rd shot for another week. During this time I will need to go in for bloodwork and ultrasounds every 2-3 days. Once enough follicles have released eggs, they will perform the egg retrieval. (I'm hyperventilating just thinking about this part!) This is done with a large needle with a local anesthetic. You can pay more to be put under completely as they have to bring in an anesthesiologist. They will then fertilize the eggs to create embryos, test them a few days later and then perform the embryo transfer.

Overall we left our appointment feeling pretty optimistic. Our doctor thinks we can aim to transfer embryos in the fall! We are excited, nervous, anxious and overwhelmed...but mostly excited. Two friends of mine recently found out they are pregnant so if all goes as planned, it will be fun to be pregnant at the same time. The next few weeks will just be boring blood tests, but Ill try to update with anything exciting.

-Emily