The Story of “A” (Part 3)

Appointments…so many appointments!

Once we were clear that we were keeping our baby we never looked back. Honestly, never regretted the decision. But the time immediately following our choice was busy and confusing.

Heart

First was the detailed ultrasound of the baby’s heart to get a better idea of her issue. Since they were looking at it through me they could only have the basics. They were able to diagnose that she had AVSD or Atrioventricular Septal Defect which is a common heart defect in children with Down Syndrome. This meant that there were holes between the chambers of the right and left sides of her heart and the valves that control the flow of blood between these chambers were not formed correctly.  This could allow blood to flow where it shouldn’t. Often this blood would not have enough oxygen and could flow into the lungs. This extra blood being pumped into the lungs would force the heart and lungs to work harder and could eventually lead to congestive heart failure. So scary!

However, they explained that surgery could probably correct it. At issue was the degree of defect. Something we wouldn’t know until after the birth.

Feeding

There are several symptoms that a newborn with AVSD might experience. All of them are problematic. Everything from breathing issues to leg swelling to slow weight gain. All things that we would have to look out for. Low weight gain was probably the most common because they seemed particularly focused on it. For that reason, they connected us with a nutritionist.

During the appointment, she explained that our baby couldn’t have her heart surgery unless she weighed at least 10lbs. According to them, this was the minimum weight that gave her the best chance of getting through the surgery. She explained that the easiest way to ensure this was to insert a feeding tube. I remember cringing and I am pretty sure that my husband did too. We had gone from dashed dreams of breastfeeding to a feeding tube. But it got worse. Though formula would be her main food, the nutritionist recommended we could start her on pureed meats within a few months. OMG! We were vegetarians…mostly! For some strange reason, this information scared me more than the heart stuff.

Calming Down

Once we had all of the information about the “what’s next” and the “what ifs” we felt ready to tell our children. I remember sitting in our bedroom with both of them while my husband told them that they were going to have a new sister. He explained that the baby would be born with Down Syndrome and that she would also be needing heart surgery. They asked a couple of basic questions and that was that. They were all in. What had taken me weeks of tortured, stressful contemplation…happened in moments for them. Kids are amazing!

With that completed we settled into the business of living, being with our kids, and preparing for the birth.

Though we certainly had other appointments, I don’t remember any aside from the monthly doctor check-ups and some more “spiritual” sessions. These were with a woman who I knew that practiced a sort of relaxation, meditation, healing therapy. She suggested that I give the baby a name so that I could talk to her about everything. I had talked to my other children during their pregnancies but, since we didn’t know their sex yet, I always referred to them as “you”.

Choosing a name for this child was weird because my husband and kids had always picked the name of the next arrival. So when I gave the baby the “temporary” name of “A” I didn’t expect it to stick. It did!

Finding a connection

For me, the biggest issue was that I was having difficulty finding a connection to this baby. I already loved her, but some part of me felt like she knew what I had been considering. Also, choosing to keep her hadn’t completely calmed my fears and concerns about all of the issues. As with my other pregnancies, I ate well, exercised, and enjoyed the process of growing a human inside of me. However, there was always a feeling of being a little off.

To that end, I followed my friend’s advice. I did visualizations that “A’s” heart was repairing itself. I meditated on finding calm in my mind regarding the Down Syndrome diagnosis. I would talk to her while I took my son on stroller naps and any other chances I got. It felt like talking to her would help me establish the connection I so desperately wanted to find.

She’s here and I’m scared!

Several doctors had told us that babies like “A” often came early. She did…almost 3 weeks. Though I was embarrassed to admit it for a long time, I will acknowledge that when they handed her to me I remember thinking that she didn’t look finished. Her shape seemed more like that from an earlier stage in pregnancy. Granted, I only had two other birth experiences to compare her to. My first child came out looking like a “typical” newborn baby and my second, whose skin suggested he had vacationed in Aruba before the birth, was similar.

But now that she was here I felt nervous. I wasn’t regretting our choice but reality had kicked in and it was showtime!

Reality gets scary

However, we didn’t have long to celebrate. A few moments later the nurse noticed that her coloring was bad and within minutes she was being rushed to St. Justine Children’s Hospital in Montreal in an ambulance. I followed in a cab while my husband went home, without their new sister or mom, to our waiting children.

The issue was her breathing and poor oxygen saturation. So for the next several days, I slept in a visitor-dedicated section of the hospital while they got her stabilized. Infection was always a risk, so I had to “suit up” every time to visit her. Sadly, even if for good reason, visits were extremely limited, both in duration and frequency. This wasn’t my first time dealing with a child in intensive care but I just didn’t think I would be living through a second experience.

My first child was an awesome pregnancy. We had planned for a water birth at a wonderful birthing center. When things weren’t “moving” as they should it became clear that the umbilical cord was wrapped around her neck so I was raced off to the nearby hospital for an emergency C-section. Then the baby developed MAS (Meconium Aspiration Syndrome) during birth and had to spend weeks fighting the infection. She was ultimately successful!

What I remember about both hospital stays was walking the long corridors at all hours, sleeping fitfully, dealing with post-pregnancy self-care issues, living in sweats, and seeing my baby surrounded by all sorts of machines. And, in both cases, watching my husband try to be in too many places at the same time while he worried and tried to care for all of us.

Moving forward

I cannot say that I suddenly found our connection while at the hospital, but I did a lot of soul searching and thinking. The important thing was to be present. I realized that “A” needed to know that the past was the past and that I loved her and was happy that she was here. Her job was to get better so we could bring her home to live her life, whatever it was going to be like, with her sister, brother, dad, and me…her mom!