Hello Boston & Main Readers,
It's been quite some time since I've written to you all. I'm going to use today's entry to share something very personal and special to me and my loved ones. It's long and detailed about my journey in becoming pregnant a second time, so I won't be offended if you click off now but if you're interested to learn more about how my Daughter and soon to be next child came into this world, read on.
As you know, I am a Mother. I don't speak too often about my Daughter or Husband because the purpose of this blog is to provide light and fun blurbs on things to make you happy. Of course a good meal, vacation, lipstick or moisturizer are going to make most very happy but there are also bigger ticket items like being a parent. These things are priceless or in our case, thousands of dollars, shots, months and tears.
When I was nine weeks pregnant with my Daughter back in 2015 I received a call I'll never forget till the day I die. It was the head of my OBGYN practice who wasn't even my Doctor, calling to tell me I tested positive for Type 1 Gaucher's Disease.
Type 1 Gaucher's Disease is a genetic disorder in which glucocerebroside accumulates in cells and certain organs. It causes an enlarged liver and spleen and additionally, bruising, fatigue, anemia, low blood platelet counts and down the road in many cases neurological issues. While someone with Type 1 Gaucher's Disease may live a full life, they will be hooked up to IVs for most of it to receive platelet transfusions to maintain their well being. This disease is unfortunately incurable.
So we receive this call and are told to not be alarmed. That in his over 30+ years in practice, the Doctor has NEVER seen a couple where both people were carriers and that my Husband can come back in a month to be tested at my next appointment. Well, you can be sure my Husband was there the next morning for that test. One week later, now 10 weeks pregnant, I'm told we're both carriers.
That month, while terrifying and stressful, it was the closest my Husband and I had ever been. We waited for the results each day and night and the stress was immeasurable. Finally on February 11th we got the call that made it all worth it.
There was a 25% chance our Daughter would have had the disease, 50% she'd be a carrier, and 25% she'd be totally fine. She was completely unaffected! We'd been blessed more than any two people that day. I went on to have a healthy pregnancy and a beautiful, healthy and happy little girl. She is the apple of our eyes and I truly can't even picture what life was like without her because I just feel my purpose hadn't started till she took her first breath.
The years began to go on and my Husband discussed a second child. I was terrified by this conversation because the truth of the matter was, I just couldn't go through another waiting game, and I had a bad feeling that this time we wouldn't be so lucky with the results. We began looking into IVF in November of 2016.
Our first Doctor was someone a friend of mine had used. He told us how high our success rate was to be since we'd gotten pregnant with our Daughter so easily and instructed me to stop breastfeeding so I could regulate my hormones and then we'd get started. We heard everything we wanted to hear but I just wasn't sold on the second kid thing.
I loved life as the three of us (plus our two dogs). We had a house of love and happiness and the fiscally responsible person in me thought, I was an only child why can't our Daughter be too? Let her want for nothing as she grows up and not need to split things with a sibling. On the other hand, I knew growing up I was lacking by not having a sibling. I knew I couldn't understand sibling dynamic as an adult. I knew a sibling was just what our Daughter needed and deserved. I knew my Husband and our family deserved this.
I wasn't ready to stop breastfeeding my one year old Daughter nor was she. To this day she still asks for "Mama Milk" and she'll be three. I also had difficulty coming to terms with having another child. Something just didn't sit well with me. I hear it's a common fear to have mixed thoughts about having a second. Regardless, by the end of February, my Daughter was "weaned" (not really because she still asks for it and I'm heartbroken to this day about this). By April, it was time to begin.
My Doctor had a very strict protocol. All his patients were on the same meds for an extended period of time so he could monitor us and control us like robots. I later learned how unhealthy this was for me and truly pray I don't develop complications from this later in life.
As you may or may not know IVF is the process in which an egg is fertilized by sperm in a test tube and then placed back in the woman. In order to make the egg, the body needs to be stimulated to produce many eggs in one cycle. In my case I was over stimulated and developed something called OHSS. This is very painful and something I wish to never remember again. After the egg and sperm fertilize, you cross your fingers that a healthy embryo is created to implant.
Now in our case, we needed to then test whatever embryos we created to find one without the Gaucher's Disease. We had 15 embryos which went out for testing in late June 2017. What should have taken 15 days for results, took over a month. Then the phone rang. Another call I'll never forget for as long as I live. It was the Doctor calling to say all 15 embryos were non-viable.
How could this be? How could all 15 have something wrong. He said they couldn't get definitive results on them and that's why they couldn't go in. We asked that they be retested. This meant more time and money but we had nothing to lose. Oh, did I mention that this wasn't covered by insurance and we paid 100% out of pocket?
So we waited again. This time the news was slightly better. He said he had four which didn't have the disease but we didn't know if they had anything chromosomally wrong with them. We took our chances and put two in in the Fall of 2017. Well, that didn't work and we had no idea why. We started to get second and third opinions.
Each opinion had a new reason as to why they thought it didn't work but at the end of the day, my Husband and I knew something wasn't right and we needed to find a new Doctor and take our embryos with us. When I went to meet my new Doctor, my Husband had been out of town. He was actually on a plane to California at the time of my appointment. I remember because he had texting ability on the plane and I messaged him while en route to tell him I had found the Doctor who was going to give us a healthy baby.
Two weeks later, we were back with our remaining embryos. The lab examined them and determined the reason they were never viable was because they were destroyed in the initial biopsy process. Basically they were ruined by the Doctor's office and nothing could have worked from that point. They were useless.
At first I was angry, sad, defeated, and just accepted this was it for us. But as I walked into the hallway of the Doctor's office with my Husband, I had this "I am woman, hear me roar" moment; that this lousy Doctor wasn't going to end my journey. I was also on day two of my cycle and knew we could get started immediately. Thus began round 2 of IVF. I now was certain I wanted a second baby and this Doctor was going to make that happen.
This time was much different. Less drugs and more results. Unfortunately we needed to make all new embryos and with that came another round of OHSS. Again, I wish to never remember this terrible condition or the 15 pounds of bloating water-weight it made me gain because you're on an all salt diet where you can't drink water.
By the way, have I mentioned how fun this was to go through while working full-time?
Anyways, this time around, much better news. 8 healthy embryos, 7 which were carriers and 1 which was totally unaffected. My cycle worked harmoniously this time with the Doctor's schedule, med schedule and before you knew it, it was implantation time. I am now happy to report that I am pregnant. This pregnancy is very different than with my Daughter. Constantly sick, and nothing provides relief. I suppose when your body is being forced to produce hormones from meds rather then mother nature, it's going to behave differently. It just isn't a walk in the park like it was with my Daughter.
I in no way wish to come across as negative or a complainer. I wouldn't change anything (other then not wasting my time or money at that first Doctor). It all will make the end result that much sweeter. The time I have spent in fertility offices, I have met and been touched by so many people. When I "graduated' from my fertility clinic, the whole staff stuck around to say goodbye. Even the receptionists told me that I had been such a positive force each visit to those who were feeling defeated or stressed. My situation was different. I chose to be in this position. I wanted my child to have the benefit of the doubt to start a life without being a carrier of something, or having a terrible disease. Life is difficult as it is, why not start it with a blank slate if you can right?
As I am now in my second trimester, I felt empowered to share my story with you all. People don't talk about IVF. Either they're embarrassed, scared, lonely or just don't want to share their personal lives. I found that by being vocal these past 16 months, it helped others to share their stories with me. I pray there is a world rid of all diseases and that people don't have to be in my situation in the future, but isn't it incredible that I am carrying this baby that may never have been?
So now I have made some changes in my life. I have started a new job, for much less money working in an entirely different field to try something different. I wanted to be in a position to not feel the stress of the industry I was in and do what was healthiest for my family overall and especially this unborn baby. I can't be a good Mother and Wife if I'm too stressed from my career. My focus is on my family and being the best ME that I can be.
For those of you that spent the time to read all of this, I truly appreciate it. Please feel free to reach out to me personally if you have any questions, if you need someone to talk to, for anything... Bostonandmain@
I'll be sure to keep you all updated during my pregnancy journey but just remember that no one can allow you to be defeated if you keep going. Had I given up, this little nugget wouldn't be coming into the world in November.
Again, thank you sincerely for reading.
xoxo
Liz
PS. For more information on Gaucher's Disease visit
https://www.gaucherdisease.org
PS. For more information on Gaucher's Disease visit
https://www.gaucherdisease.org
