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Eileen

Mom to Paul Raymond and 6 Miscarried Babies

January 9 – 19, 2017
2009-2015

West Seneca, New York

My journey to becoming a mom started in October 2008. My husband and I were married for 2 years and he was just finishing college, so we thought we were in a good place to start a family. Little did we know, we were starting on an incredibly long and sometimes painful journey.

I got pregnant with our first right away. We were ecstatic and told everyone right away. Our first ultrasound showed a heartbeat and a little bean. I couldn’t believe I was finally going to be a mom, something I had dreamed about since I was a little girl. I was 34 years old and it was right before Christmas. But something was off; the baby was measuring a week and more behind. The doctor was sure my dates were off, but since I had been planning and following everything so closely, I knew my dates were right. However, I was naïve enough not to realize there was a big problem. The following February, I started bleeding and we found, at 12 weeks, that the baby no longer had a heartbeat. And so began our journey of struggling to become parents. I lost another baby at 7 weeks that June, the day after seeing a heartbeat. That baby, too, was measuring way behind.

It took an entire year for me to get pregnant again. I had gone to a reproductive endocrinologist who diagnosed me with a clotting disorder (elevated PAI-1) and told me the next time I got pregnant, that I’d be put on heparin. After multiple rounds on Femara, I finally fell pregnant in July 2010 with our beautiful, healthy daughter, who was born in March 2011. After my daughter was born, I was content to be one and done. My husband wanted a second child, but I was worried we were pushing our luck. I was getting older, my mother had had multiple losses, including a stillbirth, and I just didn’t want to take a chance. Once my daughter turned 3 though, I changed my mind, and was ready to try again. What followed were four miscarriages (2 early, 2 mid-to-end first trimester) over two years and then finally, a rainbow, in May of 2016.

This baby too was measuring behind and at our first appointment to see the heartbeat, the nurse couldn’t find it at first. I was told to come back early the following week to check that the heartbeat had stopped. When I went back, full of dread, the heartbeat was in the 130s and strong. The baby was still measuring small, but the doctor was cautiously optimistic. I was a wreck, as was my husband. Being 42, I was sent for all sorts of testing, including MaterniT21, all which came back completely normal. We found out our little rainbow was a boy, and we named him Paul Raymond, after his grandfathers. There was still a lot of apprehension in the air though, but at 18 weeks, we felt we were getting out of the woods and decided to tell our daughter and our families the good news.

Twenty weeks rolled around and it was time for our big ultrasound. The ultrasound technician didn’t say a lot during the ultrasound, and went to get the doctor after about an hour. The doctor was “too busy” to see us, however, so we had to wait, on pins and needles, for him to call us the following day. The next day, he called me at work and told me that our son had multiple anomalies and severe hydrocephalus and that our options were to “wait two weeks to see if anything changes or we could terminate.”

I was devastated and confused and left work in a hurry and headed to my husband’s work, where we met in the parking lot and cried together. Then we went home to our daughter to tell her the bad news. She had been so excited to be a big sister, and cried for over an hour. We were shocked and beyond heartbroken. We also decided then that whatever our son’s issues were, we wanted to carry him to term. We fired that doctor and switched to a much more professional practice, which referred us immediately to our local Children’s Hospital’s perinatal clinic. We were also hooked up with Hospice.

In the coming weeks and months, it was clear that our son had multiple anomalies, most of which could not be confirmed via ultrasound. We knew he had radial aplasia (missing radius bones in his forearms), IUGR due to a single artery umbilical cord and hydrocephalus. The doctors suspected esophageal atresia, tracheal fistula and cardiac anomalies. We had an MRI to confirm the cause of our son’s hydrocephalus (aqueductal stenosis), multiple fetal echocardiograms to try to determine his cardiac issues (he never cooperated), and multiple ultrasounds to monitor his growth and try to locate a stomach to rule out EA. The pregnancy was not uneventful for me either, as I developed Gestational Diabetes. We had a team of perinatalogists we saw every two weeks, some more optimistic than others. One told us outright that our son would die during delivery. She said he would be profoundly mentally retarded. We went through an amniocentesis looking further for genetic issues and didn’t receive information back until past 30 weeks, long after the time period had passed to terminate if that had been our decision. The genetic testing did not show anything that would have caused his anomalies.

I was pushed to have a vaginal birth, as I had delivered my daughter that way and in the words of the perinatalogist, “it wouldn’t change the outcome to have a c-section.” However, our little Paul had other plans. He turned himself around into breech position at 36 weeks, and nestled way up under my ribs. The doctors had no choice, but to deliver him via c-section. We were told the week before delivery they suspected he had no trachea, and therefore, would die shortly after birth.

On January 9, 2017, Paul Raymond was delivered via c-section at 12:21 p.m. and, in the midst of being baptized, began screaming his head off. I sobbed my heart out – my boy had a trachea and we had a chance! My husband went with him to the NICU while I recovered enough to be able to go visit him later that evening. 

While I was recovering, Paul got to meet many doctors over the course of the day. They determined he indeed had VACTERL association with hydrocephalus. He had everything associated (Vertebral – malformed rib; Anal – malformed sacrum; Cardiac – TAPVR and PDA; Tracheal Fistula; Esophageal Atresia; Renal – only one, small, malformed kidney and Limbs – radial aplasia). As a result of the IUGR, he only weighed 3 lbs 1 oz.

The next few days were a lot of ups and downs in the NICU. Paul’s kidney was failing fast. They couldn’t have any of the surgeries he needed because the anesthesia would destroy his kidney, and he was too small for dialysis. He was also too small to be put on an ECMO machine to have heart surgery. Two top hospitals in the country declined to treat him; our choice was to take him home on Hospice, or keep him in the NICU, also on Hospice. We decided to bring him home.

At 8 days old, Paul came home. We spent two days, holding him, loving him, kissing him, singing songs, reading books and telling him everything we could think of about his family. We lost him at 8:15 a.m. on his 10th day here on Earth. We are eternally grateful for the time we had with our little angel, and not a day goes by we don’t miss him and our miscarried babies terribly.

You can email Eileen at edobrzen@hotmail.com.

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Comments

  1. I am so sorry for your losses.

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