In my photography career, I've had a lot of clients who have opened up to me about their individual experiences with pregnancy and infant loss. I am working on a long term photography project to help share the journey of others. In the meantime, I am sharing some of them here. Jennifer contacted me about a year ago asking to create an image for her to remember the children she lost and to celebrate the ones she has. It was something I had never done but have been pushing myself to learn new things. Attached is the art piece I created for her. Jennifer has written and generously shared her shocking and breath taking story. She is my first official guest blogger and I am honored she has allowed me to share this with you.
Our Birth Story
In 1988 President Ronald Reagan declared October Pregnancy and Infant Loss Awareness Month by saying the following: “When a child loses his parent, they are called an orphan. When a spouse loses her or his partner, they are called a widow or widower. When parents lose their child, there isn’t a word to describe them. This month recognizes the loss so many parents experience across the United States and around the world. It is also meant to inform and provide resources for parents who have lost children due to miscarriage, ectopic pregnancy, molar pregnancy, stillbirths, birth defects, SIDS, and other causes. Now, Therefore, I, Ronald Reagan, President of the United States of America, do hereby proclaim the month of October as Pregnancy and Infant Loss Awareness Month. I call upon the people of the United States to observe this month with appropriate programs, ceremonies, and activities.”
Nate and I had been married for two years and thought that was the perfect time to expand our family. We were overjoyed when we had a positive pregnancy test within a few months. We scheduled our first OB appointment at 8 weeks. We walked into the office with smiles and excitement. I had dreamed of this day and it was finally here! We were having our ultrasound when the technician said, “I’ll be right back.” This was our very first time in an OB office and my first ever ultrasound. A few minutes later the doctor, whom I had never met before, came in the room with the technician and together performed the ultrasound. He looked at us and said there was no heartbeat. This was the start of our very long, emotionally and physically draining journey to become parents. In total Jen fashion, I turned to Dr. Google and what I found was an overwhelming number of women miscarry and usually cannot find a reason and go on to have multiple children after a miscarriage. If you know me at all, you know my patience level is comparable to a toddler. I had a D & C and as soon as we got the green light from the doctor to try again, we did. A short while later, another positive pregnancy test. This time, around 6 weeks I started miscarrying. This happened one more time for a total of 3 early miscarriages.
We decided to seek help from a fertility specialist. We went through months of testing only to hear the dreaded words of “everything is fine, try again.” That may seem odd, to be upset after hearing everything was fine. But, in my mind, something was wrong. I needed to find out the why so it can be fixed, and we can have a successful pregnancy. So, as the doctor told us, we tried again. We suffered yet another early miscarriage. We went back to the specialist and demanded more to be done. I knew this was not normal, we are young and to our knowledge, healthy and the doctor agreed. She said it was more than likely “genetic abnormalities” and we should go forward with IVF. Anxious to expand our family, we agreed and couldn’t wait to get started on this next chapter of our journey.
The first step was an egg retrieval. I was to be on hormone injections for 10 days to mature my eggs. Well, 2 days of being on the hormones, my body reacted too well so the doctor stopped the medications. A short time after that, it was retrieval day! They were able to get 28 eggs; normally they don’t want any more than 5-10 eggs due to an illness known as ovarian hyperstimulation syndrome (OHSS). While at home recovering, I started feeling weak, dizzy and nauseous. The symptoms only got worse over the next few days prompting a visit to the doctor. I was given IV fluids, pain medications and a diagnosis of OHSS. One month later I was finally feeling back to myself and cleared to return to work.
Out of the 28 eggs they retrieved, 19 were fertilized. We chose to do preimplantation genetic diagnosis (PGD) testing on the embryo. This is a technique that provides information about the gene make-up of the cells found in an embryo. They took about 3 to 8 cells from each embryo and sent them to California to a lab that performs this testing. At this point, we were told the reason we kept miscarrying was due to genetic abnormalities. PGD test would tell us if any of the embryo had an abnormality and what they were. After a long few weeks, the results came back and we had 9 embryo that were to the standard they were looking for.
The next step was our IVF transfer. We were optimistic. We had perfect embryo and I knew my body would not let me down! It worked! This time, we were very excited for the positive test. How can this not work? My body did what it was supposed to do, the embryo is a perfect ten, we’ve got this! Around the 6-week mark, I miscarried. We thought, how could this possibly happen again? I spent more countless hours researching everything I could while my body tried to return back to normal so we can try again. At our next appointment, I went in with my determined, won’t take no for an answer, and now educated self. I begged our doctor to put me on a cocktail of medications I researched extensively. We were told yes with major hesitation to a few medications and no to another. We did another 3 rounds of IVF with no success. Nate and I decided it was time to change specialists.
We had our last 5 embryo transferred over to the new specialist and during the transport we lost 2 of them, leaving us with only 3. We met with our new doctor, this time I was educated, prepared, and confident in what I wanted the next steps to be. I came in and told him my plan. He was impressed, but politely declined my wishes. He ensured me “his way” would work because it’s what he has been doing for years and had all the research to back it up. Well, if you know anything about the infertility world, you know there is no real up to date research. I was reading blog after blog about what women were experiencing right now and what is working for them without the research. This was the path I was going down and did not get the buy in from my new doctor, yet. I agreed to do it “his way” once. We were unsuccessful and lost the embryo. We had 2 embryo left and not much hope.
Throughout my journey, I was open with my family and closest friends. One day, while talking to my best friend, she said “Jeremy (her husband) and I talked, and I want to be a surrogate for you.” I am one lucky girl to have a great friend who is willing to do such a special thing for you. We started surrogacy process together. We found a lawyer, started getting the contracts together, getting the psychological testing done, etc. We were going to finally become parents! I was at home one day binge watching the show, Bringing Up Bates. As I was watching, one of the daughters on the show was talking about how she had miscarriages and was finally pregnant with her first baby. I decided to turn to the internet to find out what her diagnosis ended up being. A few minutes later, I found out she had three early miscarriages due to a blood clotting disorder, PAI-1. Quickly, I reviewed all my test results to see if I was ever tested for that specifically just to realize they never tested me for any blood clotting disorders. The very next day, I called my doctor and told him I wanted a blood clotting panel done. He referred me to a hematologist. I wasted no time getting that appointment set up. A week later, Nate, my mom and I show up to the hematologist office. I told the doctor why I was there and what test I wanted done. He told me, “I don’t think you have this, and if you do it wouldn’t be causing your miscarriages.” I smiled and asked him to run the tests anyways. A few days later, I received a phone call, “you are positive for PAI-1 and MTHFR, the doctor wants you to come back in to discuss this.” I politely declined. I immediately called my fertility doctor and told him the news. I requested to come in as soon as possible to go over what I thought my new protocol should be. He laughed and said if you bring in all the supporting documentation, I will think about it. Challenge accepted. A short time later, we sat down with the doctor and I told him the medications I needed to be on and why. I handed him the stack of paper with all the support documentation he had requested. He looked at Nate and said “wow, she’s good.” He replies, “she’s always up for a challenge, especially motherhood.” Without hesitation, he wrote a prescription for every medication I had asked for. We then agreed the next round of IVF I am calling the shots. He agreed, but not without a fight. He called three times over the next few days asking if we wanted to switch it to the way ‘he has always done it’ I said no. I called my best friend and told her all the up to date news. We talked it over and decided to hold off on the surrogacy plan and try IVF one more time.
The doctors next phone call would be to tell us the last two embryos were poor quality and the best chance for success is to transfer both of them. Nate and I talked, and we agreed to transfer the last two embryos. That means no more embryo, no more tries, no more surrogacy plan. We had our last and final transfer. A few days later, I woke up and took a pregnancy test. It was negative, my heart sank. It didn’t matter to me that I was testing way too early, it was still a negative. I threw it in the trash and went back to bed. The next morning, I knew I had to test again, and to my surprise, it was positive!! I was excited and optimistic. I immediately told Nate and tested every day after that to make sure the line was getting darker. I was 6 weeks along and it was finally the day of our first ultrasound. We are supposed to see one, maybe even two heartbeats today, something we have never heard. The ultrasound tech walks in the room and says, “are you ready?” with a big smile on her face. I thought to myself, if only she knew what today meant to us. Before I knew it, she said “There’s the heartbeat!” Nate squeezed my hand, I looked at him with tears in my eyes, a huge smile and quickly realized, “wait, only one? Is there another?” She said, “I see the second embryo but no heartbeat.” Talk about a roller coaster of emotions. She zoomed in and said, “there it is! two strong heartbeats!” Nate and I were beside ourselves with excitement. The next 30 weeks brought its own separate challenges I wasn’t ready for. It took 4 different nausea medications to finally cut back on the constant vomiting every day. The only things I wouldn’t throw up were dole peach cups, pizza hut pizza and dr. pepper. Therefore, that’s all I ate! Yes, I envisioned myself eating all organic foods and drinking nothing but water, but lets be real, I was in survival mode at this point! Besides my nausea medications, I was taking a steroid and two anticoagulants. I would give myself injections in the abdomen daily to prevent my blood from clotting which would ultimately lead to another miscarriage.
Fast forward to Saturday, April 30, 2016 around 1am. I was 35 weeks and 4 days pregnant. I was having painful, regular contractions. I was already on medication to stop the contractions, so I called my OB. She said to go into labor and delivery triage. The nurse told me I was dehydrated which is why I was having contractions. They started an IV, gave me more medications to stop the contractions and 2 liters of fluids. I was still unable to give them a urine sample after all that fluid. They sent me home with instructions to drink a lot of water because I was “really dehydrated.” My doctor never came and saw me in triage. We got home around 6am Saturday morning, exhausted and hungry. We ate breakfast and got right in bed. I laid my head on the pillow and immediately felt short of breath. I sat back up, caught my breath and tried to lay down slowly. That wasn’t working. I went downstairs to recline on the couch. Still, nothing worked. I decided to sit up on the couch, watch TV and hope I fall asleep. After a few hours of watching TV, my mom calls to see how I was doing.
I was talking on the phone in one to two-word sentences, I couldn’t catch my breath, I felt like I was drowning. With a lot of encouragement from Nate and my mom I called my doctor. I told her I was very short of breath and the contractions started again. She told me to go to the closest emergency department. After a little back and forth, she agreed the best place for me to go would be back to labor and delivery triage. When we arrived, I let Nate push me in a wheelchair into triage. The nurse took one look at me said “are you short of breath?” My mom, walking behind me said, “YES SHE IS!” The nurse said, “you look awful; you need to go down to the emergency room.” My only thought was, oh no, it is Saturday afternoon at Fairfax emergency department, there is no way I can wait hours in this condition. The ED nurse brought me right back to get me triaged, did an EKG and pushed me right back to a room.
The ED doctor came in, immediately sent me to CAT scan thinking I had a blood clot in my lungs. I was unable to lay flat for the test, so they brought me back to my room. The doctor decided to treat me for a pulmonary embolism anyway because it can be fatal. My blood pressure was also high, and I was diagnosed with preeclampsia. I was sent to get a chest x-ray next, that showed bilateral pleural effusions. Next was an echocardiogram of my heart, the results showed that my ejection fraction was 40% (Normal is between 55-70%). I was diagnosed with congestive heart failure. I was then admitted to the cardiac unit. I was brought upstairs to my new room around midnight, they drew more blood, gave more medications and I was finally able to try and get some sleep! I sent my mom and Nate home so they could get some sleep too. About 30 minutes after they left, the nurse came in to insert a foley catheter. A few minutes later, I wet the bed! I called the nurse back in and she checked a few things and said everything with the foley looked fine. I suggested that maybe we check and see if my water broke. Keep in mind, these cardiac nurses wanted nothing to do with my very pregnant self! She called one of the hospital OBs to come check and sure enough, my water broke.
Down to the operating room I went to finally deliver my sweet babies. I immediately called Nate and my mom to tell them to come back! I get down to the PACU when my OB comes in and says we have 2 options. Option #1, I will be put to sleep and intubated since she doesn’t think my heart is strong enough to make it through the surgery and Nate would not be able to come with me into the operating room. Ok, I don’t know what planet she is living on, but option #1 shouldn’t even be an option! And option #2, we wait until the blood thinners I was given in the ED to treat the possible blood clot in my lung wears off, bump up the oxygen and slowly lay the head of my bed down as tolerable. I was told I can only be propped up with a maximum of 3 pillows for the c-section. Another challenge, accepted.
On Sunday, May 1st, 2016 at 10:21am Chase Alexander was born weighing 5lb 1oz and doing fantastic! At 10:23 Kinsley Grace was born weighing 5lb 4oz and not breathing after she had the cord wrapped around her neck twice. A little oxygen and she began breathing on her own and doing great! Their sugar levels were a little low after their first feed, so they took them to the NICU for monitoring. They both had an IV inserted and receiving dextrose to get their sugar levels up to normal. After the C-section I had to go back to the cardiac floor where I stayed for another 4 days getting medications to stabilize my heart and blood transfusions. I was then moved to a GYN floor where I stayed another 2 days. Kinsley did amazing in the NICU. Her and I were discharged after 6 days. Chase stayed another week; he was having challenges feeding. We would go back to the NICU to visit Chase as much as we could for that week he was still there. We had such a wonderful experience with the NICU staff. Even though we wanted Chase home, we knew he was in great hands.
The twins are three years old now! We can’t imagine our lives without them. They have the biggest hearts and make everyone around them smile.
Thank you for taking the time to read about our journey through infertility and pregnancy.