My Endo Journey Part 6

 Chapter 6

Our parents were over the moon to hear the good news. My mom cried, I cried - it was real and it was happening. All that fear and anxiety melted away and we could just focus on the months ahead; staying healthy and positive about the future. 

The twins pregnancy was pretty easy in the beginning. When carrying twins you go directly to the Maternal Fetal Medicine department at Northwestern. The hospital was 10 blocks from our condo in the city and I'd walk there for my appointments every week. We got ultrasounds regularly which was kinda cool to see them develop. 

At 20 weeks the ultrasound appointment checks their anatomy, counts their fingers and toes, and if you are lucky you can see the sex. It's a stressful one and you wait with baited breath to ensure they are healthy.  We had already witnessed several women we know and love walk out of this appointment grief stricken on finding out their babies were not going to survive outside the womb; it's terrifying. And as the ultrasound tech checks off each vital organ you breathe a little easier.

It was never a thought to not find out the sex of the twins. I'm a planner and I needed too many things to just go pale yellow and green for everything. They were cooperating that day and we immediately went to the hospital gift shop to find something to give our parents to share the news. They had these little bears in blue and pink - so we picked up 2 sets and called our parents to meet up. Christians parents lived a couple blocks from us and we walked right over to share the news. The next day we drove to Michigan City to meet my parents. My mom was NOT happy we made them wait to find out 🤣. 

We wrapped the little bears and gave 1 to each of them to open. The papa's opened their's first to blue bears. My mom and Nana wanted a girl so badly and we may have delayed and teased them a bit before allowing them to open their bears to find that sweet pink one. There were tears of joy and plans to be made! Boy / girl twins was a dream come true.

By 5 months I looked 9months pregnant and I only got bigger from there. My ankles swelled m, I felt like one of those giant balloons in the Macy's Thanksgiving Day Parade, and we couldn't keep my blood pressure down. I was on partial bedrest and was able to work from home, but still it wouldn't regulate. 

At 30 weeks, the night before my Chicago shower; I went in to my appointment and they sent me to the hospital to be checked in. They tested the protein in my urine for 24hrs and it was right on the border of being dangerous for both of them and me. They gave the twins a shot of steroids to help their little lungs develop. They knew it wouldn't be long and without it their survival wasn't guaranteed. It wasn't guaranteed with it either, but at least it gave them a better shot. I got out just in time to be wheeled across the street where my shower was happening. Everyone was so wonderful; I fought hard to be there with them and then went home to lay in bed and only get up to pee and eat when I was alone.

At 35 1/2 weeks Christian and I went on our last date before officially officially becoming parents. Topolobampo was delicious and we sat at the bar at Rosewood and decided our boys name would be Franklin. Veronica was a no brainer, I'd been dreaming of naming my little girl that since I was little. I'd play dolls or Barbie's and get so mad at my mom that she didn't name me Veronica. It was her middle name and she didn't like it growing up. She told me to name my daughter it when I got older and I swore to her then that that was exactly what I was going to do. Sometimes I wouldn't talk to her for hours because of it. We glued with other options but who was I kidding, she was destined to be my Veronica.

The next morning, I went to my regular Friday appointment on June 19th, and they immediately sent me to Prentice (the best womens hospital ever). The twins were coming that day. I called Christian and told him the news just as he was stepping up to sit in Jeff Gordon's race car that was at a work event in New Lenox. I called my parents - they had their own delivery suitcases already packed and ready to jump in the car for the 3.5 hour drive from Michigan. Nana beat them all there.

By noon everyone was arriving and I was being prepped for a C-section. Veronica being twin A (closest to my cervix) dictated the birth order and she was breach. There wasn't enough room in there to flip her so we were already mentally prepared for the delivery process. But as they were prepping and waiting to wheel me in things went from risky to scary. Preeclampsia was developing fast and although I didn't really think about it in the moment - I was so worried about the twins I didn't think much of myself. We were scared of what came next. Were they big enough to survive? Were their lungs developed enough to breathe air on their own? Were we headed to the NICU for months after this? So many unknowns and yet it didn't cross my mind that I might not survive.

The epidural was awful but necessary and very quickly you can't feel anything from the waist down. Christian wasn't allowed in to hold my hand and tears fell while I sat there rounded over while they found the right spot between the vertebrae to work in the needle. They laid me down and stretched my arms out like Jesus on the cross. They raised the veil and Christian was finally allowed to come in. 

The whole process went fast and it felt like my abdomen was a suitcase they were rummaging thru looking for a missing sock. I couldn't feel my legs even existed. 

Veronica came out screaming and we were so happy. She sounded strong and fierce and she got a perfect grading even then. She was tiny at 4.3lbs but mighty. Frankie came next 2 minutes later (a point Veronica will never let him forget) and we heard his sweet voice too; weighing in with all his 4.9lbs of pure baby love. They were breathing and it was a miracle. He had a little retraction in his lungs that cleared up quickly but it still sent him to the NICU for the night to be watched. Veronica never left our side. Once I was stitched up they took three of us to our corner suite. It felt incomplete with him there too.

I wasn't allowed to stand or even really sit up. The preeclampsia so severe I was put on magnesium therapy to prevent seizures. I listened and stayed in bed. I'd send Christian to visit Franklin as often as he would listen and tell him how much his mama loved him. It was brutal but I was finally starting to realize that it was my life they were most concerned with and I didn't want to leave my people that day, before I ever held my son. 

That night Veronica was in her bassinet but it was just far enough away that I couldn't reach her without getting up. My pre mama self would've just found a way to scooch down and pull her to me, but now I had 3 beautiful reasons to ask for help. I tried the call button but I head commotion in the hallway and knew they must be busy helping someone. Christian was on the couch snoring up a storm, and I still can't believe he was sleeping thru her screaming! I tried yelling too but I was weak and I didn't want to push myself too hard so I grabbed the only thing I could and whipped the tissue box right at his head. It did the job and he jumped up to help. It's still one of the funniest and happiest moments of my life. 

I was up most of the night terrified something awful would happen if I fell asleep. I dozed in and out keeping V close to me. The next day I was finally released of the magnesium and could sit up and stand with assistance. Just as this was happening they wheeled my sweet boy in and I almost fell over weeping. I made it. It was time to meet my son. 

They kept us 5 days to get their weight up to an acceptable number. Veronica fell below 4 lbs and we almost had to leave her there. None of us wanted to leave without our instant family in tact. I was nursing them but it wasn't enough yet so we supplemented with formula every other feeding and it worked. Her weight came up and we went home. Together. 

Our beautiful family of 4, healthy and happy 💕

My Endo Journey Pt 5

Our first date was a Dave Mathew's concert in Pittsburgh and it was the beginning to one of the happiest seasons of my life. We road tripped to California and back, took a train ride to DC for the fun of it, would fall asleep in the grasses of Millennium Park on a sunny Sunday morning, and perfected our couple selfie game before phones had cameras or the word selfie existed. 

But the pain was always there in the background; the continuous birth control keeping it caged. During my 3rd laporscopic surgery most of the lesions were gone from the back of my uterus. My left ovary had regrowth and adhesions had formed between my ovary and Fallopian tube. The ligament that attaches my uterus to the sacrum had lesions lined up in a row like tiny soldiers separated only by more adhesions. Those spots regrew too. 

Words like ablation and excision were not part of the conversation for me through most of my endo journey. What I remember of my laparoscopies were compassionate doctors who HEARD me. Doctors who did their best to help me. 

I look at my surgical notes now and I cringe seeing vaporization, recurrence, induced menopause. Because this was the ONLY treatment available to me then. And I know now that had they been versed in the advantages of excision; they may have eradicated the disease from my body all together before all the damage it caused. My then newly declared boyfriend saw this report and new that pregnancy was still not a given for me. He loved me anyway. A year later he proposed and in July 2007 I married my best friend.  

As the only treatment available I went back on continuous birth control; suppressing my hormones - they thought this helped because whatever they didn't get during the cauterization would surely be "starved" with 6 months of no periods, right? Wrong. That's not how it works. But if ur not bleeding then the lesions aren't growing. So I transitioned to having periods every few months to maybe once or twice a year. And my beloved doctor in Michigan left to head the department at Yale. 

I was back to searching for adequate healthcare, now in a city where I knew virtually no one. And knew no one struggling with the disease. Most doctors are uneducated when it comes to endometriosis. There are specialists in MIGS, but just because someone chooses to become an ob-gyn doctor does not mean they have the education, empathy, or understanding of these diseases to give adequate healthcare. It was like finding a needle in a hay stack. 

Even with my surgical records it took many appointments of doctors telling me that; 'it wasn't that bad'. I heard unless I was ready for fertility treatments I wasn't worth their time, and the worst was a guy who made me sit there with my shirt around my waist while he told me the dangers of pain medications. It was so creepy and weird, and I couldn't believe i did it. But in the moment i was so desperate to find my new doctor that I didn't even question it until i told my husband and he got upset.

I never knew when a flare up would hit or a cyst would rupture like it did once in Vegas, forcing me to travel home early to get to my pain meds. It was useless to go to an ER there because they wouldn't help me. 

It got harder and harder to get Vicodin for the pain. The opiad crisis had hit and all of a sudden it didn't matter that I had managed these medications responsibly since I was 14. It didn't matter that I needed them to manage the pain; you couldn't get them anymore. The options they gave didn't touch the pain and were a joke. 

Had these amazing doctors I had found when I was so young knew they could eradicate the disease from my young body, I know they would've done it. That is a devastation that I can't put into words. 

Simply burning the lesions damages the healthy tissue surrounding it, there's nothing left to send to pathology, and you cannot be certain you went deep enough and got all the cells. Vaporizing is slightly better by steaming the cells until they evaporate so less damage but you still have nothing to study and ensure it's not cancer and you still have no idea if it's completely gone - the majority of women who have ablation surgery will see regrowth and pain within 2-5 years; some a few months later. My pain was filled but never went away again completely. There was too much scar tissue and adhesions.

Excision cuts the disease precisely and is the only way to ensure no damage is done to the healthy tissue surrounding it, they can send a sample to pathology to confirm, and can remove the cells all together ensuring there is no regrowth - at least in that spot; cutting down on inflammation and scar tissue forming adhesions. Adhesions are when scar tissue inflames the tissue so much that rings called adhesions begin to form attaching to the surrounding organs. The scar tissue will take the damaged tissue and whatever it is touching and bind them together. 

The first recorded medical journals date back to the 1890's when a dr found lesions filled with blood similar but outside the uterus. The treatment then was to open you up and cut that shit out. In the 70's/80's laporscopic surgery came around and based on no research the prescribed treatment was to take these fancy lasers and burn it out. Great that women didn't need a 10" scar across their abdomin but shitty they decided to burn the tissue without any medical research or proof this did anything. 

This became THE ONLY TREATMENT for endo until decades later. And the reason almost everything doctor will state that endo has no cure - because unless they are educated in MIGS and understand the superiority of excision surgery; they're right. Endo will never be cured.

But I digress, our courtship and first years of marriage were a whirlwind of love and travel, but also an urgency to start a family. I always had this voice in the back of my head louder than the rest saying 'you've got til 30' and I also knew that we wouldn't be able to go right to IVF.

I finally found a dr at a fertility clinic who would treat me knowing that we were not ready yet but would be soon. My first appointment with Dr Caruso was one the best experiences I had had since finding my doctors in Michigan. He sat and listened to my whole story. Two hours later he was reassuring me that he was there for me and that he would be our medical partner thru the next phase of my life. 

So we made a plan, I stayed on continuous birth control having as little periods as possible and after only 6 months of marriage we began fertility treatments. There are rules and even with my history I had to jump thru hoops. And after several failed IUI's, fertility drugs to jack my system, suppressing my period to control when I was fertile - you learn very quickly that getting pregnant is closer to a science experiment than some holy gift. When that failed and I had too many cysts and polyps they gave me a rest and we finally got to IVF.

I didn't struggle as mentally or emotionally during this time as you would think and probably what most women who've been thru this process did. I felt strongly that the only way I would ever become pregnant was thru IVF. I was told that since I was 14 and I believed it thru and thru. I had come to peace with that from a young age and told myself I was fine if it didn't work, but if I'm being totally honest I'm not sure I would've been ok had it not turned out the way it did. They call it an invisible disease because you can't tell from the outside your in pain or see the damage happening. Most women find out they have endometriosis when they can't get pregnant. But regardless of your mental state going into it: the process is hard; mentally, emotionally and physically. 

They suppress your hormones with the Depot Lupron shots they gave me at 20years old, so they can then Jack up your hormones to produce as many eggs as possible. This would be the 2nd time I went thru induced menopause. Man I hate that drug. But I had to do it and every morning Christian would try to find a spot on my abdomen that wasn't bruised already. We finally made it to harvesting and we had so many eggs it seemed crazy. We celebrated the day they extracted them and combined them in the hopes of forming embryos. I don't remember the exact number now; it's funny how you are so in tuned with every hormone level, number, speed, etc... that you feel they are engrained in your memory forever. But I think the mind knows better than to keep track of things like this. 

You start with say a dozen embryos and each day you wake up and call and find that number dwindling. It's extremely hard to stay positive but you remain hopeful. Until hopefully you land somewhere with at least one viable embryo they can implant back inside you. We thankfully had several.

They shoot you up with a super dose of hormones 24hours before implantation. I was in my friends wedding that night and by the time the pictures were being taken I had ballooned up 20lbs in literally a few hours. My dress cut into my arms that was once loose (I had gotten it big knowing this would happen) and the next morning we were off to get pregnant. 

They grade the embryos on their viability and you sit in this room and must make a decision. If they are not strong enough to freeze then you have to either let them go or take the chance they will survive against the odds. But you also must accept that whatever number of embryos you implant could all take - so if you implant 4 you must be prepared and accept the risks to carry quadruplets. It's not an easy decision. And if I truly believed that a soul comes into existence at conception then I'd be heartbroken for the souls we lost before we were ever even physically pregnant. That doesn't feel right to me. I don't know when a soul joins a physical body but I do know it's not then. 

Just 10 days later you go for your first ultrasound. They urge you not to take pregnancy tests because of the hormones causing false positives; so we waited. We had no idea if we would have multiple babies, one lone survivor or none at all. Christian held my hand as the technician was quietly beginning the test. He made a joke about it looking like an alien with 2 big black eyes - then he caught himself and asked if those were 2 babies. The tech laughed and said yes; you are having twins. We were ecstatic and scared and so so excited it worked. And even though they had been implanted 10 days prior; I was 8 weeks pregnant. 

We hugged and cried and I called my mom to tell her we did it. My pregnancy was a huge success for us all and had my parents not taken me seriously all those years ago I fully believe our miracle babies wouldn't exist. Early diagnosis and management made this possible for me and they were a huge part of that. The dreams my mom and I had from 14 years old were happening and we were all so incredibly happy.

I was 30 years old and pregnant. With twins 💕