Brody

I was 18 weeks pregnant when my doctor discovered a separation in the amniotic sac and I was diagnosed with oligohydramnios — low amniotic fluid. I switched to a doctor who specialized in high-risk pregnancies immediately, and within a week I was put on full bedrest. I felt helpless, scared, and incredibly guilty for not being able to be there for my three children, who were 4, 3 and 15 months.

We learned our baby was a boy, and my son decided we should call him “Baby Cutie.” Nursery school was just starting, new classes, new teachers — and a nanny taking over my job. I was so scared I couldn’t bring myself to get out any of my baby things, not even my maternity clothes. But I was also hopeful and optimistic.

I had two episodes of bleeding before I was admitted to the hospital. I was 21 weeks pregnant, our baby was not viable and we were terrified. At Stamford, I continued bleeding and at 23 weeks I started leaking amniotic fluid. I was moved by ambulance to Yale New-Haven Hospital, where I continued bleeding and losing amniotic fluid. The neonatologists from the Newborn Special Care Unit came to see me to explain what would happen if they had to deliver our baby at 24 weeks, 25 weeks, and so on. Everyone would say “let’s get to 28 weeks,” and that when we got there we’d hope to get to 32 weeks.

While I was in the hospital, it was like my husband and I were living in two different worlds, and we were both under a great deal of pressure. My husband coped with taking care of our children, running his business, rushing up to Yale every time there was an emergency, and living day-to-day in fear of the unknown. He gave our children love and reassured them that things were going to be okay… all the while not knowing if that would really be the case. He was wonderful.

My parents were incredible, especially my mom — I could not have done it without her. With her help, my husband was able to focus on his work and our children. She was my rock — she allowed me to get angry, sad, whatever, and never said anything except, “I will do anything to help you get through this.”  My parents would take our kids on the weekends to give my husband a break. My mom was with me a lot at Yale, and she went to visit the Newborn Special Care Unit weeks before I could. She assured me that it was a warm, loving place and that the nurses were wonderful.

We made two calendars, one for the hospital and a one for the kids at home, and crossed off one day at a time. My original goal was to make it to Halloween, which was 28 weeks. I cannot tell you how much I missed my kids and looked forward to their visits — although the visits always ended in tears, both theirs and mine. All during this time, our family and friends rallied with visits, calls, meals, and care for our children.

The nurses on the Maternal Special Care Unit kept me sane, brought me coffee, told me stories, and became good friends. I was rushed down to Labor and Birth 5 times before Brody was born, because his heart rate would dip and then would beat too fast.

A Tiny Miracles mentor came to see me when I first went on bedrest and she was incredibly helpful from the start. She gave me great advice on how to navigate hospital bedrest — like how to get your hair washed! 🙂 My mother had found The Tiny Miracles Foundation’s website; she said the “Miracle Stories” gave her hope and encouraged me to read them. I looked at the website so often when I was in the hospital. The emotional support was invaluable — it was so helpful to meet other women who had been through this and not only survived but have beautiful children and happy families.

Every day the medical student and resident would come into my room at 6AM. I would then have to repeat what I had told them at least three more times to doctors, nurses, my mom and my husband. The constant repetition was making me anxious, so I started Brody’s CarePage when we hit the big milestone of 28 weeks.

When Brody was born at 29 weeks, my placenta was 50% abrupted and starting to show signs of infection. Brody’s Apgar scores were 8 at one minute and 9 at five minutes. Hearing him cry, through the door, was the best sound ever. Brody is the product of a lot of love from so many people and a whole lot of positive thinking!

Nothing can prepare you for what it is like to have a child in the NICU. Brody had PDA, a hernia operation, a blood transfusion, spinal tap, an infection, eating problems, and of course lots of apnea and bradycardia episodes. I was not able to nurse him and this was big disappointment to me. The way the nurses handled Brody immediately put me at ease — I loved the way they talked to him and moved him with such confidence. When I looked at him, I just saw my beautiful baby — the tubes did not hide his good looks.

I remember leaving Yale with such mixed emotions. I couldn’t wait to be home, but nothing could have prepared me for how hard it was to leave Brody behind — your heart aches in a way you cannot imagine. We were scared and felt somewhat helpless. We wrote everything down and read his reports each day. There were some tough, scary days. And of course, at the same time I was trying to recover from a c-section after almost 10 weeks of bedrest.

Brody wound up spending 51 days total in the NICU, 25 at Yale and 26 at Stamford.  He came home 2 days before Christmas — the perfect gift!

Brody has chronic lung disease, osteopenia of prematurity, and a fistula that may eventually need surgery (the fistula is not even a preemie thing — how unfair!). But he continues to amaze us in spite of all he’s been through; he has this amazing equanimity and he brings a sense of calmness to our house. He is pure joy!

Brody goes to many specialists — a pediatric pulmanologist, pediatric urologist, pediatric gastroenterologist, pediatric ophthalmologist, pediatric surgeon, pediatric endocrinologist, and of course, our regular pediatrician. I often feel like I’m the only one with the complete picture of his medical history, as each doctor only looks at his or her piece of the puzzle. I hope to be able to help other families of preemies navigate this maze of medical care — the support you have in the NICU is excellent, but it’s overwhelming once you get home. It also takes a lot of time and energy to deal with the insurance company and stay on top of all the bills. Brody also receives services through Birth to Three, and they’ve been wonderful.

Financially, it has been expensive, between having to hire full-time help when I was in the hospital, Brody’s hospital expenses, and all the doctors since then. In 2007, Brody maxed out his prescription drug benefit in just 3 months.

It is isolating at times not being able to do “normal baby things” and get together with other moms and babies. (We have our own little germ factory here.) I finally went for a check-up with a great gynecologist who acknowledged that I had been through a traumatic event and needed time to process it and heal. It was a huge relief to hear someone say that and to know that the way I feel is normal. But when you have other children, they are the focus. We are all healing, as a family, but it is going to take some time.

2018 Update:  Brody has started Middle School and is now 11 years old.  He plays football, basketball, and lacrosse in Wilton, CT.   We always give thanks to TTMF for all of their support and Brody continues to remind us to be thankful each day and appreciate all the wonderful people we have in our lives.