Shots, Shots, Shots Shots, Shots!

We had our meeting with Ashley, the nurse who will be handling our IVF cycle, on Tuesday. She was very knowledgeable and informative. We left the meeting feeling pretty good about the next step of this process.

Ashley went over all of my medications that I will be taking during this process. I was overwhelmed with the amount of medications that they will be prescribing. Overall I will be taking 12 different medications. Not all of them are injections, some of them are just a pill I will take before or after a procedure and I won't be taking them all at the same time. Ashley wrote out a great chart and list so we can keep everything straight.

They are starting me on a new birth control pill that delivers a consistent dose of hormones throughout the month, instead of it changing week to week. It also has an extra low level of estrogen in the pills. Who knew birth control pills could be so different? Ill take only the active pills in this pack and the next so I will not have a period. This is so once RGI lets us know that they are done creating the gene probe, we can start our IVF cycle without waiting for another period.

I will start with injections of a drug called Gonal-F, which is a follicle stimulating hormone, every night between 6PM and 8PM. This will cause an increase in the number of follicles and help with the quality of the eggs. I will also be taking a drug called Menopur at this time. Menopur delivers the hormone human chorionic gonadotropin (hcg), which helps with the growth and maturation of the eggs.

I'll have ultrasounds and bloodwork every 2-3 days while taking the hormone injections. My doctor will adjust my medications and tell me when to move onto the next step based off of my lab work and the ultrasounds of my ovaries. About 6 days after starting the Gonal-F and Menopur, I will begin daily morning injections of a drug called Cetrotide. Cetrotide blocks luteinizing hormone which is released as a result of the Menopur. Basically it prevents me from ovulating so all those health eggs stay right where we want them!

About 6 or 7 days later, based on my test results, I will give myself an ovulation trigger shot called Lupron. This gives the eggs a little extra boost to mature and causes them to break away from the follicle wall. The will stay in the follicle and will be extracted along with the fluid inside the follicle during the egg retrieval. This shot has to be given exactly 35 1/2 hours before egg retrieval. This one looks large and I've heard It's pretty painful! I'll probably have someone do this one for me so I don't hesitate too much and miss my time window. If anyone has ever felt the desire to stab me, let me know and this might be your shot.

36 hours later they will be retrieving the eggs from my ovaries. I have opted to be have an anesthesiologist there so I will not be awake during the procedure. Ashley said some women say they are fine being awake as they give you Fentanyl and Versed to calm you down and make you drowsy. I just know I was nearly hyperventilating before the mock embryo transfer and that was a very negative experience for me. I would rather not be aware that they are stabbing me with a needle the size of my arm and just take a nice nap.

Once they have all of the eggs, they will fertilize them and leave them in the incubator overnight. The next day they will tell us how many have successfully been fertilized. On day 2 they will update us on how many have continued to grow. On day 3 they will leave the embryos alone and let them incubate more and on day 5 the embryologist will come to collect the biopsies. Because so much growth is done in that 5 day window, the embryologist will come late in the day. He may need to come back the next morning to biopsy any embryos that were not ready on day 5. Our embryos will then be frozen until it is time to transfer them back into my uterus.

It takes 2-3 weeks to test all of the embryos and I will need to be on some other medications during this time and even more after the embryo transfer. I'll go over that whole process another time so I won't bore you. Ashley gave me a list of online injection training videos to watch. the small shots in the stomach don't look like they will be too bad, the needles are super tiny! The Trigger shot and Progesterone shots that Ill be on later look extremely painful. Something about the line "inset the entire length of the needle in a quick, dart-like motion" makes me cringe.

We also had to sign paperwork to determine what will happen to our embryos if something were to happen to us. We had to decide who would take custody of them if we were to split up. This would only determine who would be financially responsible for the cryopreservation of the embryos until a court hearing could be held. We also had to designate a guardian for the embryos if we were to die. My mom has agreed to be the guardian and Brian and I will tell her our wishes for if something were to happen. If god forbid something happen to us, we want our embryos to be donated to a couple who cannot have biological children of their own.

It was strange having to make all of these decisions at this point. What once seemed so far away could now be starting in just a few weeks. We have a ton going on the next few weeks, so I am sure it will be here before we know it!

-Emily

Rough Weather: Metaphorically and Literally

I again apologize for the lack of updates the past couple weeks. We spent the majority of last week fishing in Canada! Lake Esnagi is absolutely gorgeous! We got to spend some time relaxing, playing Cards Against Humanity and just got away from day to day responsibilities. We did not however do a lot of reeling in fish. It seems like we barely caught anything the entire trip!

We encountered some unfortunate weather on day 1 and we were lucky to slowly make our way back to the lodge tackling the waves. When we finally got back to the lodge, two of our group members were missing. Some very large waves took over their boat and they capsized. They managed to make it to shore when one of them got pinned between the boat and a large rock. In the excitement to get out on the water, he had also left his passport, wallet and truck keys in his backpack. He lost all of that and gained some pretty gnarly battle wounds. Some men from the lodge were able to get out there and bring them back within a few hours. Thankfully they had a high visibility vest with them and used it to flag down another boat. They were both (mostly) ok and they were able to make arrangements to get back into the country without a passport. They were good sports about the whole ordeal and were cracking jokes as they got back to the lodge.

While we would have enjoyed some more pleasant weather and a few more bites, it was still nice to get away. Brian and I have been struggling lately. The entire process of IVF has been a lot more emotional than I ever expected. There's the anxiety while waiting for all the tests, worrying about the financial side of IVF and worrying that it may not work. The fact that we could go through all of this and still wind up without a baby hadn't even crossed my mind until a month or so ago. Then there is the thought that we would go through all of this and our child could still be plagued with EB. While there is only a small chance that this could happen, there is still a chance, which is scary. I've been praying a lot for strength lately.

Brian has been trying so hard  to be strong for the both of us. While I worry about every little detail and feel absolutely insane, his response is often along the lines of "It will all work out". I have been wrongly interpreting his efforts at staying calm and trying to keep me calm as him not caring. Two 10-hour car rides gave us the opportunity to do a lot of talking and we got a lot of things cleared up.

My thought pattern goes a little something like this:

1) I feel anxious about everything taking so long
2) I feel anxious that we may not be able to afford everything and we may not be able to move forward
3) I feel worried that we may take every necessary step towards preventing our children from having EB and they still wind up with it
4) I feel guilty for worrying about that as there are women who have been trying to have babies for years and are still childless
5) I feel silly for feeling guilty as I know my feelings are valid
6) I feel overwhelmed and try to think about something else.

This all goes through my brain constantly throughout the day. Brian calls it "Spaghetti Brain". I forget where we heard it, but it is said that men have "Waffle Brains". They have little separate compartments for each aspect of their lives. They can leave one section of waffle and not think about it until they decide they want to think about that specific thing. Women on the other hand have "Spaghetti Brains" where everything is intertwined and we think about a thousand things at once. I don't know about you, but I've always liked waffles more than spaghetti!

We have an appointment tomorrow with the nurses who will coordinate our IVF cycle. They will review my bloodwork to decide which medications I will need to take. This appointments is pretty much to plan out our entire IVF cycle. They told us this it often takes up to 2 hours so I'm sure we will get a lot of new information to share.

-Emily

Magical Flying Testing Kits!

I hope everyone had a relaxing holiday weekend! Ours was filled with fireworks, hot dogs and family; the only way to spend the 4th of july!

I realized a few days ago that I forgot to post an update on my back. My doctor reviewed my x-rays and my spine is NOT fractured again and it is completely healed from the previous fracture. There was some sort of "haziness" on the image that made it look like there may have been another break. He did see a slight Spondylolisthesis, which did happen with the original break. This is pretty much where one vertebrae slides forward causing pressure on the nerve roots. My doctor does not think the issues with my spine will cause extra problems when I finally get pregnant as long as I am careful. There are braces that are specifically made for back support during pregnancy, but I would rather not have to wear one of those. My doctor wants me to start physical therapy to strengthen my back and help correct the slipped vertebrae. I am starting in a couple weeks, but until then, I am 99% pain free!

Our DNA collection kits were in the mail last Thursday when I came home for lunch. We had been told 1-2 weeks for the collection kits to arrive, but they were there in just 4 days! I asked for magically fast mail delivery and that is what we got! We had to rush around after work to make sure the samples could be overnighted to RGI. The samples had to be sent sometime Monday-Thursday so they didn't sit in the lab all weekend. With it being a holiday weekend, we had to get them sent Thursday or we would have had to wait till Tuesday. We probably could have waited a few more days, but I am not very patient and I'll pretty much do anything to speed up this process.

 

The kit included a large packet of papers, a styrofoam container with a biohazard bag to send the samples and overnight fedex packaging.We had to take some paperwork to the bank to have them notarized to send with the blood samples. Then we had to rush over to the lab to get blood drawn and then get to fedex before the overnight driver left. It was pretty weird walking down the street with biohazard bag in my hand. Half of the paperwork did not have to be notarized, so we left those unsigned till we got to fedex. One of the papers that surprised me asked if we wanted to know the sex information about the embryos. I knew that was a decision we had to make, but I hadn't really thought about it since our initial consultation.

We both agreed that we did not want to know the sex information of the embryos. While it would be interesting to know the sex of our future baby before I am even pregnant, that is just not something we need to control. The sex information of the embryo does not change the outcome of the testing for EB and we just want a healthy baby. Every aspect of this pregnancy is going to be 100% planned and we want to leave something to be a surprise. Right now I don't think I want to know until the baby is born. I may change my mind down the line, but for now I'd like to have it be a surprise. Brian said he would rather know the sex of the baby at the 20 week ultrasound, but I'm calling dibs on this decision!

Hopefully the testing time will follow suit and take half the time. 4-6 weeks seems so far away right now. We are filling our weeks up to keep busy while we are waiting. We will be fishing in Canada most of next week and after that we have appointments nearly every week.We are even making plans for the nursery to get some projects started. I never thought I would be wishing for the summer to fly by!

-Emily