My Genes are Rare

Today is Rare Disease Day across the world. In honor of this day-I wanted to take the time to share about my rare disease, how I was diagnosed, what affects it has had on my life so far, and what affects it could have on my life in the future. My rare disease is called Homocystinuria, more commonly referred to as HCU. It affects 1 out of every 300,000 people world wide.

Homocystinuria is an autosomal recessive genetic disorder, meaning both parents must be carriers of the gene mutation that causes the disease. HCU is a metabolic disorder where the body cannot break down certain amino acids in protien, specifically Methionine and Homocystiene. The most common form of HCU is caused by a mutation on the CBS gene. The CBS gene provides instructions for producing an enzyme called cystathionine beta-synthase. This enzyme acts in a chemical pathway and is responsible for converting the amino acid homocysteine to a molecule called cystathionine. As a result of this pathway, other amino acids, including methionine, are produced. Mutations in the CBS gene disrupt the function of cystathionine beta-synthase, preventing homocysteine from being used properly. As a result, this amino acid and toxic byproducts substances build up in the blood. Homocysteine and Methionine are found to be extremely high while cystathionine are found to be extremely low.

Babies are screened for Homocystinuria at birth in most states and countries, and there are advocates that are working on getting the newborn screening approved in the states and countries where it is not already occuring. However, the newborn screening does not catch half of the cases with this disease. Many children are diagnosed during their childhood years, and some even in their adult years. In my case, I was diagnosed at the age of 25.

Many research shows that Homocystinuria can be a deadly disease. According to research, people who are undiagnosed or untreated could likely die by the age of 25. This is because when the Homocystiene level accumulates in the blood it makes the platelets in the blood sticky and can cause blood clots which ultimately can lead to heart attacks and strokes. I, thankfully, have a more mild form of HCU. When I was diagnosed at age 25, my Homocystiene level was 238 (normal is 5-15). That seems pretty high, but most people when diagnosed even at a young age have a Homocystiene level in the 400's.

I was diagnosed with Homocystinuria after the lenses in both of my eyes became subluxed, or dislocated. The zonules (ligaments) holding my lenses in place began to break apart because of the build up of Homocystiene in my body. My entire life I struggled with extreme nearsightedness. The only explanation I was given was that my eyes were elongated causing the vision to be so poor. But I was legally blind by the 8th grade, and when I was in high school my eye doctor told me I had the worst pair of eyes he's ever seen (vision wise). By the time the lenses were found to be dislocated, I could no longer correct my vision with contacts because no one made them strong enough for me. My perscription was -20 and -25. I failed the vision exam to renew my driver's license and that's when I went to my eye doctor and said something is seriously wrong. That was the beginning of my journey with HCU.

I consider myself pretty lucky actually. Lens dislocation is one of the most common signs of HCU, and after joining support groups on Facebook, it made me realize how many young kids suffer from dislocated lenses at ages of 5, 8, 10, ect. I also realized that my parent's were lucky that because I have a mild form of the disease, I was never developmentally delayed, I've never had siezures, and I've never suffered from blood clots like a good majority of the kids with HCU experience. In the beginning of my diagnosis I experienced feelings of anger-that no one ever caught my disease when I was younger. I thought if we had caught it earlier maybe I would not have had to have 3 major eye surgeries because we could have prevented my eyes from getting so bad by taking the medication and food supplements and restricting my protein intake. But then again-I am glad I got to enjoy my childhood without having to restrict what I ate and having to worry about taking medication every day.

My treatment for my disease consists of restricting my protein intake to 30 grams a day. This was a huge challenge in the beginning because my favorite food was a nice juicy Ribeye Steak! Just one steak has more than 30 grams of protein! After a few months of not eating steak I now think it is the most disgusting food ever. I have not given up chicken and never will. I know there are days when I eat much more than 30 grams of protein too-sometimes I just want to eat something with substance to it! In addition to the protein restriction, I have to take food supplements. It took me awhile to find supplements that I could tolerate the taste of them as well as were convienent to take with me to work. My supplements are called HCU Coolors. They contain 15 grams of protein in them, but protein without methionine (which is in meat). Along with the food supplements, I take a medication called Betaine Anhydrous, a white powder medication that looks like cocaine (I think) and makes me feel like I'm a drug user because I have to measure it out using a weight scale to 4.5 grams twice a day. I mix this medication with the food supplements for the convience. Lastly, I take Folic Acid, Vitamin B12, Calcium, and Vitamin C which are all vitamins I lack from the food that I can eat. They have also helped keep my Homocystiene level well under control.

The down fall of having this metabolic disease is that it is RARE. Because it is rare, employers elect out of covering its treatment with their insurance plans. The first year I was diagnosed-I paid $37 every month for my medication. I was trying all different kinds of food supplements so those were free, at first. The second year of my disease I decided I was tired of paying the $37 every month and wanted to see if my insurance would pay for it. It was absolute hell working with the insurance companies-I literally felt like I could have killed someone-they made me that angry. They kept telling me Cystadane was the generic form of my medication which was not the case at all! I was already on the generic form. They tried telling me they would cover Cystadane but because it was so much more expensive it would now cost me $75 a month out of pocket. We eventually got the benefits person at my husbands company involved and she was able to get the Betaine approved for me at just $15 for a 2 month supply! My food supplements were approved right away by Anthem but I still had to pay $60 a month for those. But now that we have switched insurance carriers again, we are back at square one trying to get these essential treatments approved. It really does frustrate me that working for a hospital network that I got a letter this week which stated they will not approve my medication or food supplements no matter what-no matter how many appeals we apply for. Thankfully, Ohio has a state mandated formula/food supplement program where I will now be getting my food supplements at no cost to me. So now we just have to figure out the medication issue or I will have to pay $37 a month for the rest of my life for my medication.

The biggest downfall of this disease is the unknown affects on pregnancy. There is limited research in this area. The research that has been done shows HCU has a high risk of miscarriage. Why? I assume because of the increased risk of blood clots developing and the lack of protein intake to sustain a growing baby. When I was diagnosed with HCU-the doctors immediately thought it was the cause of Riley being stillborn and Braylen being miscarried. When I got pregnant with Logan I got put on Lovenox injections to prevent blood clots from developing. I took the same injections when I got pregnant with Audrey. And I will take the same injections with any future pregnancy. These injections are much worse then the hormone injections I have been taking over the last 3 weeks. They burn and leave bruises all over my stomach. There is also research that states Lovenox can actually cause miscarriage and problems in pregnancy. It is a complete double edge sword.

Going forward with our IVF cycle, the best thing I can do is to manage my disease by being compliant with my diet restrictions, medication, and food supplements. Thankfully, I get my levels drawn every 2 months and the last three times I had them tested my Homocystiene level's were 14 in August, 10 in October, & 20 in January. I will get my levels retested in March, probably when we are in Columbus for our embryo transfer. I am hoping my level has remained around 20, but it would be great if it was back down to the 10-15 range! I just pray that this disease does not cause me any major problems during this upcoming pregnancy and does not end my pregnancy in another miscarriage or stillbirth.

Never Lose HOPE

As I was driving to work today thinking about the future possibilities, it made me reflect on the past and brought tears to my eyes. Some days I can't believe I have survived so much emotional pain, and other days I can't believe there were times I wanted to give up on life. I thought about how my journey has shaped me into the person I am now, how many people have reached out to me to share their struggles with me all because I was open enough to share mine, and how many people are reading my blog and praying for us. For a long time I was so guarded and felt angry at the world-especially anyone who had a living baby. I felt like they could never understand how I felt or what I was going through-that they would always think my babies were never real because they were never born alive and that I was not a true mother because I don't have living children. I've never felt so wrong about my perception of other people. Sharing my story, my struggle, and my life with the world without being afraid of what other people think has been the most healing thing I could have ever done for myself. I've seen that people do care and don't judge. I've seen more and more women being brave and sharing their story publicly too, talking about their babies who were miscarried and stillborn. I've had many women who have never experienced these things send me messages telling me how much I inspire them. I've never been more comfortable in my own skin as I do now. So thank you to everyone who is reading and praying-YOU are helping me heal and helping me remain hopeful:)

As I was driving and thinking about all of this, I thought about the innocence that children have. I thought about the pictures that my nieces drew for me after Riley was stillborn. I thought about the time my nieces came to Columbus to spend the weekend with me and named their Build-A-Bear I bought for them "Riley," wrapping the bear with Riley's hospital blanket, and having me rock the bear to sleep like I would have been doing with Riley had see be born alive. I thought about the time we were on a family vacation in Hocking Hills and while I was giving my twin nieces a bath my oldest niece told the rest of the family that she knew I was going to be a great mommy. I thought about how many times my youngest niece would touch my belly when I was pregnant with Logan and ask about the baby inside, and then after I had miscarried Logan how many times she would still touch my belly and ask about the baby who was once inside-but couldn't understand that he died. I thought about the time at Christmas when I was holding my cousin's baby and that same niece said "I wish we could have one" bringing me to tears because so did I. And then I thought about that same day while holding the same baby my oldest niece once again said to me "You're going to be such a good mom."

Sometimes it feels like motherhood is so far away that I will never be able to reach it, like it will never come true for me. Then I remind myself that as long as I never lose hope-it's going to happen one day, one way or another. It may not be exactly how I planned or wanted it to be-but it WILL happen. I will never say that I "CAN'T" have children, even if my body proves it's not capable of carrying a baby to term. I won't say those words because I know I CAN have children-one way or another. There are too many options out there for me to accept the word "CAN'T." I'm not going to lose hope-not now, not ever. I already am a mother-just not the kind of mother I wanted to be. But one day-I will be the mother I want to be, because I never lost hope.

The Green Light

Ready...set...GO!!

Today we got GREAT news! My baseline ultrasound and blood work showed everything looks perfect for me to start stimulation injections tomorrow:) My left ovary was playing hide-and-seek at first, but I have 15 resting follicles in each ovary...meaning we could have at least 30 eggs if every follicle produces an egg! The doctors were very pleased with what they saw today and believe we will have a very successful cycle!!! You have no idea how much hope this gives me-I pray FOR ONCE that things just go smoothly. I am so ready to decorate a nursery and get our nest ready for some chicks to grow up in!

So tomorrow I reduce the Lurpon injections from 10 units to 5 units daily and start using Bravelle (3 vials) and Menopur (1 vial) together to stimulate egg production. The Lupron will keep the eggs from releasing on their own. We will have another ultrasound on Saturday, March 1st along with blood work to see where things stand at that point and if the medication is doing its job. Other than that...we be patient and wait until they tell us its time for our retrieval.

The target date for embryo transfer is in 2.5 weeks....EEEEKK!!!

Why Not Adoption?

Being that I have been pregnant 4 times and all 4 times I've lost the baby, there are always well meaning people that ask if we have thought about adopting. Family members don't like seeing us going through what we have, the heartache of losing baby after baby. They worry that we will continue to feel that heart ache if we continue to try on our own to have kids. My grandmother has said it to me many times...that she thinks we should "just adopt." My primary care doctor does not believe we should be doing IVF with Preimplantation Genetic Screening (PGS) because of the risks that it could not work, or we could still have a miscarriage or stillborn baby, or that the baby could have a congenital defect from removing one of its cells for testing before we transfer. All logical concerns that we have thought very deeply about before we made our decision to move forward with this route.

So let me answer the famous questions...why not adoption? First-adoption is not off the table of options for us. In fact, ever since I was a teenager I wanted to adopt children-even older children who "just need a loving home." The day we were told we had miscarried our 4th child in October last year, I was so angry with what we had been through that I told my husband "we either adopt or we don't have kids at all." For the next week as we waited for my body to process that the baby inside me was dead and needed to come out Alex and I didn't talk any more about that statement I had made in the doctor's office. It wasn't until the following week that I had brought up the conversation again to figure out where we both stood on the issue. I had had time to cool down, although I was still angry and depressed that physically and emotionally I was going through hell and had been for several years, but more so that year. When we discussed my comment, it was the first time that Alex told me he was truly considering it as a viable option. Several years ago whenever I mentioned adoption he wanted nothing to do with it, and when we became foster parents he really struggled with bringing a child into our home that was not his own flesh and blood. He had always said he wanted his first child to be biological-a boy was his ideal child-someone who could genetically carry on the Monnier name. Even though he was considering it, I knew where his heart was-I knew he wanted to try the IVF with PGS route....and the more I thought about that the more I knew I would kick myself if we didn't try it. The plan at that time was to apply for the Baby Quest Foundation grant again, as we had done back in May, and if we got the grant we would definitely try the IVF with PGS one time and one time only. If we didn't get the grant, we would revisit the conversation about adoption.

Had we not gotten the grant, I don't know if we would have still tried an IVF cycle or not. There is so much to consider about adoption.

First, the fact that a private adoption costs anywhere between $13,000-$20,000. That is the same cost of an IVF cycle.

Second, the thought that an adoption is guaranteed that there would be a child at the end of paying all that money and a child is not guaranteed with IVF. But the reality is birth parents change their mind all the time-they could have chosen you for their child one month and the next changed their mind about you or change their mind about adoption all together. If that happened to us, it would be absolutely devastating-getting our hopes up and feeling yet again another loss.

Third, the thought of "taking" someone else's child from them is emotionally exhausting to me. Every time I have thought about adoption since losing two more babies last year-I think about the birth mother and what she would feel like watching someone else walking out of the hospital with her baby she just gave birth to. I remember what it felt like when I gave birth to Riley, what it felt like when the nurses took her out of my arms to take her to the mortuary, and what it felt like leaving the hospital with empty arms. I cry. I cry over what that felt like, and I cry when I think that is how a birth mother would feel too-she would feel so empty, regardless if she chose adoption for her baby, she would feel empty and I would feel like I caused her to feel that way.

Forth, the fact that the only "cheap" way to adopt is through Children Services or a private foster care agency. Either agency would require us to take all the classes to become licensed for "foster to adopt" again. We did this once already in our lifetime. Plus-when a child is placed with you through Children Services or the foster care agency you are licensed with-they are placed as foster children. They must live with you for 6 months before you can adopt them. If their parent's rights have already been severed and they are being placed with you FOR ADOPTION-they had been in other foster homes previously and in foster care for at least 1-2 years, if not much much longer. These children will likely have been older, been abused and neglected, and have acting out behaviors. They will not INSTANTLY trust you or bond with you. They need much much more than "just a loving home." All the love in the world from you can not and will not erase their memories of their past, and despite how abused or neglected they were-you honestly will never be their "mom" and "dad" because they have one that they've known their whole life and will always be loyal to. It is unrealistic to expect anything different. It is unrealistic to expect that after living with you for 6 months they will be thrilled you are adopting them because "all they want is love." In addition to ALL OF THAT-if that child's biological parent's rights have not yet been terminated, guess what?! The child could be placed with you for 2 years before they are terminated. A baby could have been placed with you at birth, and the birth parents have the right to complete a case plan to get their baby back. That baby could have lived with you for 2 years...and just before the county files for permanent custody, the parents could have finally gotten themselves clean-or the unknown father could have been found and refused to relinquish his rights, or a mysterious family member could have crawled out of the woodwork....and legally-the child would have to be taken out of your home and placed back with the parents, the father, or a family member if any of these scenarios occur. I worked in a private foster care agency for 4 years as my first career-I've seen it happen, and trust me-it is absolutely heart breaking for both the foster parents who raised that baby into a toddler, and that baby who knew no other bond besides with their foster parents.

Fifth, the fact that we've been foster parent's before and I know what it feels like to open our home to a child who needs more than "just a loving home" and what it feels like when a child leaves your home. Our foster daughter was 15 when we she was placed with us and turned 16 while she was with us. We had days where she called me "mom" and days where she called me every curse word in the book. She tried my patience and wore it thin...trust me. In the beginning we got along great. She came to us with practically nothing-all her clothes were too small for her and she needed decent clothes to wear to school in 2 weeks. We easily spent $1000 off the bat just to get her nice stuff that she could feel comfortable wearing. We bought her a cell phone from Walmart and she got $20 a week in allowance for doing minimal chores around the house which she did willingly...for the first 2 months. She had a boyfriend and we allowed her to go to church with his family on Wednesdays and Sundays and constantly had her boyfriend over at our house for dinners and movie nights. In fact, we became so close to her boyfriend that HE began calling us "mom and dad" and to this day still does. We held a Sweet 16 birthday party for her, bought her a dress and decorations for it, and opened our home to her friends and family. We took her an hour away to meet up with her siblings and their adoptive parents several times and invited them over to our house for get togethers as well. We had one of her sisters spend the night while I had to work and Alex entertained them by playing board games with them. She and I joined Curves together and motivated one another to get in better shape and to work out even on days we didn't feel like it. We introduced her to both of our families, took her to family get-togethers and holidays, and even to weddings with us. My twin nieces especially loved her...and they don't love too many people!

None of this is to brag about how good we were to her. We had plenty of arguments. We didn't always handle her behaviors with grace. I thought we made a turning point in our relationship when she ran away for the first time (only going down the street since she didn't know where else to run to) and after about an hour I called her and asked her if she was cooled down and ready to come home-she replied "yes-it's cold out here but I don't know how to get back." I was so glad she decided to come home...I was really hoping that she was going to be with us until she graduated high school (and she was only a freshman). Around Thanksgiving I located her grandmother and made arrangements for us to go to dinner with her-she hadn't seen her grandmother in years and I thought this would give her some sense of belonging since her mother hadn't come to one visit in the 3 months that we had her and decided to leave the state without telling anyone. She was very excited about seeing her grandmother...but it was during the dinner when I realized that she was behaviorally inappropriate with her grandmother. I left it go though and supported her having family contact. However, this is when things began going down hill. I do believe it was partly because of feeling overwhelmed with her grandmother being back in the picture, being angry her mom was out of state and didn't contact her, and being taken off of her anti-depressant medication (which I supported initially). I think once she was taken off her medication she could no longer handle all the emotions she was having and began lashing out at us more frequently, stopped caring about school, became preoccupied with being on the phone all day and night with her boyfriend, and refused to do any chores. We had to constantly confront her about not completing her homework and lying to us about it. We had to one day lock up all the phones in our house because she was sleeping with our house phone after she made us shut off her cell phone because she no longer wanted to pay for it. The day we locked up our phones I came home to our house in disarray-every cabinet door in the kitchen wide open (she knew I hated that) and papers thrown all over her bedroom. I knew she was upset with us but did not want to show her I was upset with her because that is what she wanted at the time. I left to workout at Curves and when I came home she had dumped every one of her dresser draws out and pulled all of her clothes out of her closet and threw them all over her bedroom floor. She also had thrown papers all over our living room. Alex was not happy when he came home and saw the mess she purposefully made all over our house and informed her if she did not like our rules she did not have to stay in our house which resulted in her running away for the second time. This time though, she did not come back. She had our neighbor's mom take her to the teenage runaway shelter and the on-call case manager for our foster care agency had to pick her up and take her to a respite home. I attempted to meet with her, our foster care case manager, and her therapist the next day to discuss a way we could get things back on track-I was willing to go to counseling with her to show her she was not the sole problem...that we needed to learn better ways to deal with her behaviors. Locking up the phones without telling her why was a big mistake on our end. However, the moment she saw me she threatened to kill me and wouldn't even sit in a room with me without causing a huge scene. She ended up being placed in a respite home and within 2 days was asking to come home after realizing she was not happy being with strangers. She remained in the respite home though because Alex did not want her to return to us after her last episode, but she and I spoke every night and I picked her up several times a week to do things with her. I was able to convince Alex to allow her to return to our home for Christmas so she did not have to spend Christmas with complete strangers and because we, along with our parents, had all gotten her Christmas presents we did not want to return. The deal was she could come back for the holidays and she would be placed somewhere else after New Years. I was so angry when we had our treatment team meeting and the county decided to place her in residential treatment. I knew it was not going to benefit her-that it would only make her feel worse about herself and develop more aggressive behaviors by being around the kids placed in the treatment facility. My opinion didn't matter though-her case manager felt it was the best place for her.

The day we dropped her off at the residential treatment facility I fell apart-completely apart. I locked myself in our bathroom at house and had a mental break down. I felt like a failure. I felt like I failed her...that we really were exactly what she told us we were hundreds of times-just another set of people who she couldn't trust and would get rid of her. I felt like a horrible mother. I questioned why we brought a child into our home if we couldn't stick it out through the good and the bad. I honestly felt like I had lost another one of my children that day and for the weeks that followed that day. I was angry at myself, angry at Alex, and angry with how the "system" works. Alex tried to convince me we were not giving up on her since we had asked to remain involved in her treatment so we could be "mentors" for her and could do respite for her in the future. He also did not want her to feel we were completely giving up on her. In order for us to remain involved with her we had to go through the volunteer program at Children Services which required us to complete more training. It always seemed like whenever the training classes were scheduled Alex and I had to work. We were able to visit her and call her for awhile until one day I called and they said we had been taken off her list. Confused-I tried to call her children services case manager who never returned my phone call. Finally-I got a hold of the volunteer program coordinator and attempted to schedule the training we needed on a date we were actually available and the coordinator told me our foster daughter no longer wanted us to be involved or to become volunteers. I was absolutely crushed. I felt like she had completely shut us out of her life because she felt she couldn't trust us. I found out months later when she contacted me on Facebook that her children services case manager told her we didn't have time for her which made her angry and she told them to take us off her list.

I still have contact with Mariza-she will occasionally say Hi to me on Facebook or ask how me and Alex are doing...and she still tags us in quotes about family and love. Her ex-boyfriend still asks how "mom and dad" are doing-so if you ever see a black kid posting stuff on my wall or in my comments calling me "mom"-that's him! Mariza went from residential treatment to group homes and foster homes to independent living. She is now living with her birth mother and 2 youngest siblings in Tennessee and did not graduate high school. It seems like her and her mom still don't get along the greatest. When she was about to turn 18 my heart wanted to allow her to come live with us to finish high school, yet my mind remembered that she most likely would not have liked that she would have still had rules and I knew Alex would never go for it. We really have had way too much on our plates over the last 2 years-between multiple eye surgeries, both of us being in school, planning a wedding and getting married, house projects in Columbus, new jobs, moving to Minster, now house projects on our new home, and trying to start our family with having multiple miscarriages and medical bills. It just wouldn't work.

So after consideration of all of these factors-this is the plan we have decided for ourselves.

1. One attempt at a full IVF cycle with PGS.
2. Transfer 2 "good" embryo's without chromosome issues.
3. Freeze any remaining "good" embryos we have.
4. Pray that at least 1 of the 2 we transfer takes and stays with us all 9 months...we hope both do but 1 will be a success.
5. If one or both stick and are born alive-we know my body is capable of carrying a baby to term so IF we have any frozen embryos we will later on attempt to transfer 1 or 2 of the frozen embryos. We would not have to do stimulation meds again-we would just have to take progesterone shots and short term oral medication after the transfer.
6. IF neither that we transfer stick, OR if we miscarry again AND if we have any frozen embryos-attempt using a surrogate next time. We would not have to do stimulation meds again-the surrogate would just have to take progesterone shots and short term oral medication after the transfer.
7. IF neither that we transfer stick, OR if we miscarry again AND if we DO NOT have any frozen embryos to use a surrogate for, we will focus on getting our house in a condition that will pass a homestudy (we need to finish the projects we started) and then we will meet with a PRIVATE adoption agency to pursue adoption of an infant from birth.
8. We want 3-4 children-so whatever we have to go to get them we will do. If we have 2 children through IVF whether through my carrying them or a surrogate-and do not have any embryos left to use for a 3rd child...we would most likely adopt our 3rd child through a private agency.

We really have not discounted any option. We are taking things one step at a time and will see within the next month where our current journey will take us. I do know foster care is just not for us right now and neither is adopting through children services. That is not to say that as we get older things won't change or our perspective won't change. Right now we are learning to just roll with life.

Through My Eyes

I always love when I find out about people who helped couples to concieve when doctors had given up or just couldn't figure out why they were unable to get pregnant. I recently found out about a family friend who is now pregnant after trying to concieve for multiple years trying just about everything except IVF and were about to persue adoption when all of their dreams came true. I could not be more excited for this couple and Lord knows their journey has not been easy! Thanks to an Iridologist/Naturalist named Jennifer Cheeseman in Ft. Recovery, 6 months of specific vitamins which helped to decreasing swelling in the pitutary gland and increase vital hormones needed to concieve, our family friends are now expecting the best blessing of their lives!

When I heard this news I cried out of such happiness for a deserving couple whose struggles have been much different than ours...but also much the same. Hearing how this women helped our friends to conceive made me want to seek her out for any other answers she could give me regarding my recurrent losses. I've always thought there has to be some other underlying issue besides the Down Syndrome that is causing me not to be able to carry to term. So I thought-it can't hurt to try this Iridology thing out and see what she comes up with, right?

Today I met with Jennifer Cheeseman of J. Cheeseman Wellness Center and had my eyes read. She was able to see a lot through my eyes. The first thing she told me was that there were dark circles around my thyroid indicating it is not functioning properly. Now-for years I have thought I had thyroid problems but every test came back fine. My fertility doctors did put me on Synthroid because my Thyroid Stimulating Hormone (TSH) was on the higher end of normal but since then my TSH has been perfect along with my T3 & T4. She explained that the thyroid is like the 3rd ovary. Our Thyroid affects everything from fertility, to healthy pregnancies, to metabolism, to blood circulation and temperature regulation, to the way our nails and hair grow. She explained that blood test only show if the hormones being produced by the thyroid are normal but do not really show if the thyroid itself is functioning properly. She believes this could be a big factor playing into our recurrent losses and has put me on supplements including Kelp (seaweed) and Super Omega 3 EPA (Fish Oil.

In addition to my thyroid not functioning properly she was able to tell that my intestines are not absorbing nutrients properly which could be causing my constant indigestion and leg pains. For this she put me on Chelated Cal-Mag, a calcium-magnesium vitamin with amino acids and Vitamin D as well as Citrus Bioflavonoids (Vitamin C). She also told me the Omega 3 will help control my Psoriasis so I will not have to take steroid creams while I'm pregnant, and she informed me the Walmart brand vitamins are "full of crap" with additives that are not natural and do not allow the body to absorb the actual vitamin so I switched over my B12 and Folic Acid, which I take to help with my Homocystinuria and protein metabolization as well as to prevent any neural tube defects in our babies while we are pregnant,to the Nature's Sunshine brand. I was instructed to take my prenatal vitamin 3x/day as well compared to the 1x/day that I was doing.

There are some other things Jennifer would like to work with me on once we are pregnant. For one, there is a vitamin I could take to prevent blood clots rather than taking Lovenox Injections again. I will be thrilled about that! I hated those injections and all the bruises they left all over my belly! She will see me again the week after our embryo transfer to look at my thyroid again and see how these vitamins and supplements are helping me. She did not take me off any of my Synthroid as of now and I don't know that she will, but I am hoping these additional vitamins will help everything to function properly and healthy for a growing baby. She said all my reproductive organs including my pituitary gland which secrets reproductive hormones looks great and we have nothing to worry about there. I will need to focus on finding good proteins for me to eat to make sure our baby(ies) get enough protein to grow full term as well which I will be talking to my genetic doctor and metabolic dietitian about this week.

I have nothing to lose here and everything to gain so I'm going to give this all a real shot and pray it helps me like it has helped many other people! If anyone wants her contact information just let me know:)

Attitude is Everything

This week is another one of those "twiddling our thumbs" week so I will have some filler blog posts this week. Today I will share that I'm having some more anxiety than I have in the past month. Some TMI but like I've said before...I'm going to be candid throughout this whole journey. I wasn't supposed to start my period this month until tomorrow or Wednesday but instead I started having some bleeding on Saturday. I have NO CLUE if this is my period or "break through" bleeding caused by the birth control and Lupron injections I am on currently. It doesn't seem like a true period based on how light the bleeding has been. I talked to my IVF nurse and she said it doesn't matter either way...that we stick to our current schedule regardless because the Lupron will prevent my ovaries from releasing any eggs they are going to ovulate between now and my egg retrieval. I also talked to a fellow Baby Quest recipient and she encouraged me not to stress too much. So for now I will trust that my IVF team knows what they are doing and will pray we won't have any issues next Monday when I go for my baseline ultrasound and blood work so I can start stimulation meds next Tuesday! I will keep working on having a positive attitude that everything is going to work out for us:)

He Will Be Great

In honor of Valentine's Day, I want to share my love for my husband. Our relationship has not been all rainbows and butterflies. We have experienced many storms, besides the storms of losing babies. With every one we make it through I fall deeper in love with him and appreciate the person he is. As we have grown older together, from the ages of 19 & 21 when we met to 27 & 29 now, I have seen so many qualities that make me say "he will be great" at being a dad.

Looking back to the first time I was pregnant when I was only 20 years old and he was 23, I am impressed at how well Alex handled the news and his commitment to remain in me and Riley's life. I am impressed that he went to every ultrasound appointment and never left my side as I gave birth to our stillborn daughter. I am impressed that he made the funeral arrangements for Riley with such tender, loving care with my wishes in mind the entire time.

Looking back to the second time I was pregnant when I was only 22 and he was 25, I am impressed at how supportive and understanding Alex was when I found out I had gotten pregnant by another man during a short-lived break up between the two of us. I am impressed that he was the man sitting next to me holding my hand while in the emergency room after I had miscarried the baby. I am impressed that he continued to want to make an effort to make our relationship stronger and went to counseling with me.

Looking back to when we were foster parents to a 16 year old girl when I was only 24 and he was 27, I am impressed at the patience he displayed when she acted like a teenage girl. I am impressed with the time he took to get to know a complete stranger that was living in our home and the time he invested into caring for a child who was not our own. I am impressed with the team work we developed and how we always backed each other up on the rules and consequences in our home. I am impressed with how much our love and respect for one another grew through this experience and how he would stand up for me when she would treat me like garbage.

Looking back to the third time I was pregnant when I was 25 and he was 28, I am impressed at the excitement Alex had from the very first positive pregnancy test. I am impressed with the loved he showed our baby right from the beginning-the belly kisses and baby talk. I am impressed with his ability to be the stronger one for us when we learned our baby had died. I am impressed with the tears he has shed with me as we have grieved for another baby we never even got to hold. I am impressed that he has always been willing to see my point of view regarding the way I want to build our family and has supportive my every decision.

Looking back to the fourth time I was pregnant when I was 26 and he was 29, I am impressed at the positive thinking Alex always had that had a way of decreasing my anxiety. I am impressed that he was willing to take a picture every single week with me to celebrate each week as a new milestone as we both knew forever was not guaranteed to us. I am impressed that he considered adoption as an option for building our family after we lost yet another baby. I am impressed that even though he did not want to announce our pregnancy to anyone until we cleared the first trimester he was open about our miscarriage to his family members who didn't know we were expecting again.

Looking back to the day I brought Farrah, our kitten, home from her foster home, I am impressed at how quickly he fell in love with her. I am impressed that even though he did not want a kitten and wanted a dog instead, he knew how much I wanted a kitten and allowed me to have what I wanted before he got what he wanted. I am impressed at how gentle he is with Farrah and how concerned he was for her healing after her spay and declaw surgeries. I am impressed when I see him cuddled up with Farrah and allowing her to sleep in our bed even when he said he didn't want her to. I am impressed every time I hear him talking to Farrah as if she is our real baby, calling her "princess" and "sweety."

Looking back to conversations Alex and I have had about our future, I am impressed that he is willing to do whatever it takes to create a family. I am impressed that when we were driving through Florida recently and we passed the signs for the Butterfly Garden, when asked if we had girls and they wanted to stop there on the way to our destination would he let us and he responded "I don't think I would have a choice." I am impressed that he dreams of having a boy he can name after his father and can build a bond with like he and his father had. I am impressed that he is up for the challenge of having twins.

Looking forward to our future family, I know Alex will be a great father. He already has been even when he didn't have to be. He will definitely be our sons' first hero and our daughters' first love. I have seen him grow from a timid uncle to being extremely playful with all of our nieces and nephews. Alex loves playing football with my nephews and picking "back" at my nieces and I know that is just the kind of dad he will be too. However long it takes to make our family complete and whatever it takes to make our family complete, I will love you every step of the way Alex.

Blessing in Disguise

Do I believe everything happens for a reason? The answer is sometimes. Do I believe my babies died for a reason? Never in a Million Years. Let me give you one example of a bad situation that happened in my life that I do believe happened for a reason.

In September 2012 I started a new job as a case manager at an agency in Auglaize Co. I left my job of 4 years in Columbus with coworkers and clients I absolutely loved working with, along with ones I can say "not so much" as well. When I started my new job I really loved it. I took a pay cut to be able to move back to where Alex and I grew up and wanted to raise our family, but that was okay. I really liked my new coworkers and loved that I got to work in school doing suicide prevention screening. I even met new client families that I can so I grew very close with, and of course there were those that I can say "not so much."

At the end of October 2012 I was devastated that I had to have another emergency eye surgery. I was worried about not being out of my probationary period and not having any PTO time yet. However, the HR person was absolutely supportive of me and assured me I could take the time off that I needed without pay. This was a relief, and after 2 weeks of recovery, I went back to work without being completely healed because I couldn't stand sitting around at home.

Just a few weeks later we found out we were expecting a baby. I told my supervisor right away so she knew in case anything went wrong. She seemed happy for us. I scheduled most of my doctors appointments on my day off or I would switch my day off to a different day of the week to be able to make it to appointments if I couldn't get them scheduled on the day I was already scheduled off work. I was work 4 10hr shifts instead of 5 8hr shifts. The 10hr days were sometimes hard to get through between how tired I always felt and the nausea all day long.

The day we found out our baby no longer had a heartbeat I sent my supervisor a text message telling her what happened. By her response I felt like I had no choice but to be at work the next day since the d&c wasn't scheduled yet. It was horrible-driving alone for 2 hours that night to go from our home in Columbus, where my husband had to stay for work, to my parents house where I stayed during the week for work. That next day at work was agonizing-my coworkers all knew I was pregnant for one, and for two I couldn't focus on anything besides the fact that my baby was dead inside me. I was more than annoyed by the parents I worked with who talked about how their teenage kids wouldn't listen to them or follow rules. I honestly wanted to walk out of my appointments, but I didn't-I tried to be as professional and sympathetic as I could even though I was not sympathetic at all. I would give anything to be able to give my babies back and for them to grow up to be mouthy teenagers.

I worked three days before my d&c was scheduled. I went back to work 3 days after my d&c, only taking the weekend and my normal day off to recover emotionally. I was so embarrassed to be at work. My coworkers knew I had a miscarriage but no one said a word to me to even express sympathy. When I had supervision and I tried to express how I felt, it just made me more angry because of the unhelpful advise my supervisor gave me..like "you're still young-you will have more kids" just to give one example. For anyone reading this-just so you know, that is NOT good or comforting to say to anyone who has lost a baby. I remember times when my whole body would start shaking uncontrollably while I was talking to her just trying to fight back my tears.

Two weeks after my miscarriage I got asked to take another position in the agency-a position with increased productivity requirements and increased therapeutic interventions. I was afraid to take the position because I knew emotionally I was not stable enough for it, but I said I would consider it. I asked if the position would come with any increase in pay since the responsibilities were increased and was told "no." I knew I ultimately wanted to be an outpatient counselor, and I had done home-based counseling in the past so I knew I could do it-but I wasn't willing to put more responsibilities on myself without any benefit to do so.

The following week I returned to work on February 12th only to be brought into a meeting with my supervisor and the director. I was informed that I was being "let go" from the agency. It blew my mind...how I could be asked to take a position with more responsibilities one week and let go the next. I felt like their explanations were BS really. Following my meeting I walked into another room with the HR lady to complete paperwork. She couldn't say anything to me but she had tears in her eyes and gave me many hugs as she helped me back my belongings in my car.

I sat in my car crying for about 30 minutes before I called my husband to tell him. He was beyond supportive and much more calm then I thought he was going to be. He helped me realize that we would be okay-that I needed time away from work to grieve and that there would be something out there better for me.

I was unemployed for three weeks before I started working at Miami Valley Hospital part-time and then a month later I was hired at Grandview Medical Center part-time also. Both jobs required a master's degree and compensated me for my level of education and experience. Instead of making $13 an hr, I was now making almost $20. Plus, many weeks I picked up hours and ended up working overtime which I never would have gotten at my previous job even if I worked more than 40 hrs because I was salaried.

When I interviewed at both jobs I was completely honest and told them upfront about our troubles with trying to start a family and that we were considering doing IVF. They STILL hired me. Literally, the day we found out we were pregnant again in September I told my supervisors at Grandview and they were over the moon with excitement for me. I emailed them with every update after each of my blood tests and doctors appointments. They were really rooting for us and our baby. The day we found out we miscarried again I was scheduled to work a 12 hr shift and was scheduled to work every day that week. I was not at all scared to call my supervisors and tell them I was not going to come in that day or the next so I could process what was going on. They were 100% supportive and told me "you are more important than this job-we will figure it out." What a relief to hear. It made me want to go back to work even though I knew there was a very good possibility I would miscarry while I was working.

Because I was trying to avoid a d&c, this last miscarriage drug on for several weeks. I would have days with very heavy bleeding while I was working 12 hr shifts. My supervisors would call me to check on me and see if I was okay. They would tell me that if I ever needed to leave in the middle of my shift that I could without question and they would figure out coverage for me. It was amazing, the difference that I felt at this job during such a hard time. When I was forced to have a d&c and couldn't find someone available to work my shift-my supervisors pulled someone from the psych unit to cover the ED patients for me. In the midst of all of this going on with me-when I found out they were adding a full time position at Grandview I knew I wanted the position and was granted it without hesitation from my supervisors. Just 3 days after my d&c I started my full time position at Grandview and I quit my job at Miami Valley since I no longer had time for it.

Getting fired from my job a year ago really happened for a reason-it was a blessing in disguise. I've never been happier to work anywhere than I am to be working at Grandview Medical Center. My supervisors are supportive, my coworkers are easy to talk to about personal matters, and I love what I do. Going through my last miscarriage for 3 weeks, I never once was annoyed by a patient I was talking to. I actually felt more sympathy for me. Life can be so harsh sometimes and it's completely normal to at times feel like you wish you were dead. I can empathize with those feelings. It breaks my heart that some people can't find a way to get their mind off those thoughts and actually try to kill themselves. I know this is the job that I am meant to have at this time in my life, because I am very good at it. I have patients thank me, I have patients grab my hand and tell me how much I've helped them, and I have patients who tell me they feel much better just after talking through their feelings with me.

Going through IVF now is the right time for us. I'm working in the right place, with the right benefits, and the right people by myself to help me through!

Shuttin' 'em Down

On Thursday February 6th I started my first injectable medication-Lupron. Lupron is used to prevent my ovaries from releasing any eggs prior to having the egg retieval; In other words, shuttin' 'em down. I remember when we were in the "thinking about it" stage and just discussing the option of doing IVF with the Preimplantation Genetic Screening that I was terrified just thinking about injecting myself with medication. Now, I've been on blood thinning injections with my previous two pregnancies and would have been on those injections the entire way through had I been able to carry to term. Even though I knew how to inject myself, I hated them-they made my stomach burn and left bruises at the injection sites. I thought for sure the infertility medications would be the same.

In actuality-these first injections aren't bad at all! Granted this is the smallest needle I will use in the entire process, but there is no pain, burning, or bruising with these ones. This was very relieving since we were on vacation in the middle of the Atlantic Ocean on a cruise when I started this medication. The coolest thing of all, on our second day of injections-the last day of our cruise, we had to return to the cruise ship from the island we were at around noon to give myself the injection giving us only 3 hours that morning on the island, BUT I walked our on our balcony after I had given myself the injection and saw a beautiful rainbow right in front of me! Now, what makes this so cool is that the people we ate dinner with that night who remained at the island all day said it never rained over the island! Perhaps...this was a sign from God and our Angels that our Rainbow Baby is on it's way!

This coming Thursday will be my last dose of birth control but I will continue to take the Lupron injections up until the egg retrieval. I won't start stimulation medications until February 25th if all looks good at my first ultrasound on February 24th. So right now we are in a holding pattern. Day by day we are getting closer though!

Live Like You Were Dying

I've said many times "If I knew then what I know now...." we would have never spent $35,000 on our wedding and we would have never purchased a time share before we were married. But then I look at it this way-you only live once. Life is too short not to enjoy it. Alex and I never took a vacation together while we were dating, other than to Chicago to visit his sister and Kansas City for his uncle's wedding. The year we got engaged we went to Hocking Hills with my family and just before we got married we went to Las Vegas. On our way to Vegas we talked about our vision for our future...we wanted to be able to take a vacation every year with our children, because we didn't have those experiences growing up...money was too tight. One our first night in Vegas we got sucked into a time share presentation so we could get free tickets to two shows. We thought for sure we would be able to walk away saying "no" to any offer they presented us, but when they kept dropping the price of the condo, threw in two "bonus weeks" AND explained all the amenities of owning a time share...we couldn't say "no."

We weren't planning on going on an anniversary trip when we found out we were pregnant and due two weeks after our anniversary. But when we lost Logan in January we knew there was no sense in staying home for our anniversary because it just would have been depressing. We had so much fun and got to explore a state neither of us had been to-beautiful Virginia. We used one of our "bonus weeks" so all we paid was $200 for a 7 night stay at the Massanutten Resort. Just before we were getting ready to leave for our anniversary trip, I got a phone call from our time share company trying to sell us another vacation package. I kept trying to say no...but then I just couldn't when I realized the package included 5 vacations, including a cruise.

Alex and I have always wanted to take a cruise. When we found out we were pregnant in September and due in May...we knew we wouldn't be taking any vacations during the time or the months to follow the birth of our baby. But when we miscarried again in October, we decided we wanted to "get away." Last year on my birthday I was so depressed because just 5 days prior I had a d&c. This year, I wanted my birthday to be different. I didn't want to be sitting around home thinking to myself "wow, 27...I thought I would have at least 1 kid by now and I don't have any." We decided it was the perfect time to take our cruise.

On my 27th birthday this year we ventured from Ohio to Florida for our first road trip and our first cruise. First stop was Chattanooga, TN and what a beautiful hotel we stayed at! Second stop was Nokomis, FL to spend two nights with Alex's mom and step-dad who vacation in FL every winter. They had been asking us for the past 7 years to visit them while they were in FL and we either didn't have the time or the money. There were no excuses this year. Third stop was Miami, FL where we are staying tonight and then tomorrow we set sail for our 5 day Eastern Caribbean cruise to the Grand Turks and Caicos Island and The Bahamas.

 

I've always been one to stress out about money....it was how I was raised. I've decided now I'm not going to stress. We've always figured it out. I'm just going to live my life like I was dying...and use whatever time Alex and I have together to see the world. I have to say, too, I am so glad I have something fun to do to pass the time that we have to wait during our IVF cycle! I would be so bored and impatient if we were just sitting at home! So Friday I started week 2 of birth control, we finished our antibiotic regime on Thursday, and this coming Thursday I start the first round of injections!