When It All Began

When we went for our first ultrasound, we got the exciting, yet very shocking news that we were expecting twins. From the beginning there was concern about both babies because they were each more than a week behind.

At week 12 we lost "Baby B". The doctor encouraged me that while it is never easy to lose a baby, the pregnancy should be healthier for "Baby A".

At week 20 we went to find out if our little peanut was a boy or girl. Unfortunately, our baby did not cooperate; they had a hard time seeing the spine, gender and stomach. We came back at week 24 for a second ultrasound. Again, there was difficulty seeing the stomach and my amniotic fluid was measuring more than the normal amount. We were referred to a high risk pregnancy doctor for a level two ultrasound at the hospital.

At week 26 we had our level two ultrasound and met with the perinatologist. They could not find our baby's stomach either, and told us that they believed the baby had Tracheoesophageal Fistula. (It is very difficult to diagnosis a Tracheoesophageal Fistula in utero but with her lack of stomach and my increased fluid, they felt it was the most plausible explanation.) Our baby would require surgery after delivery and close monitoring throughout the rest of the pregnancy. With all the shocking and somewhat unnerving news, we forgot to tell people we were having a baby girl.

I should clarify that our baby had a stomach, but they could not see it on the ultrasounds because she was not swallowing the amniotic fluid. Tracheoesophageal Fistula (TEF) is when the baby's esophagus is missing a section and the section of esophagus coming from the stomach is connected to the trachea. Our baby girl would need surgery because she could not eat, and she would need it within 24-48 hour of delivery because stomach acid could get up into her lungs and damage them.

TEF is commonly associated with other defects, so we were sent to pediatric cardiology for a fetal echo to look for holes in her heart.  Luckily, they did not find any holes in her heart. Our baby would have an echo once she was born to again look for holes and make sure she was strong enough for surgery. TEF is also commonly associated with trisomies of the 13, 18 and 21 chromosomes so some genetic testing was also needed. Again we were fortunate that her chromosome work-up all came back normal.

We also toured the NICU at the Children's Hospital in Peoria. We met with a neonatologist and pediatric surgeon regarding our baby's care after her birth. We were told that she could be in NICU anywhere between two weeks and several months, depending on complications. The surgeon felt it was fair to expect to be at the hospital for three to four weeks to allow time for our baby to heal and learn how to eat. Of course, there could be complications that would make our baby's stay longer, but we did not want to dwell on those.

For four weeks I had weekly doctor appointments between my OBGYN and the high risk pregnancy doctor. At week 30 I was up to four doctor appointments a week. The concern was with how much fluid the baby was making, and since she couldn't swallow it, I was getting bigger quickly. A premature birth would only complicate her surgery and recovery.

I had three amniotic fluid draws, where they stick a needle longer than an unsharpened pencil in your stomach and slowly draw fluid out. It takes 20 minutes per liter, so each procedure was at least 45 minutes. If you think the sound of a needle that big going into your stomach does not sound pleasant, imagine an active baby constantly kicking that needle as well. With every draw came the concern that I could go into labor, but I luckily made it until my third and to the 36 week mark.

I know during this time, I was very concerned about what June's diagnosis would mean for her quality of life. But I have learned over the last several weeks that the most important thing I can do is continue to look forward and be optimistic about June's future. Keeping my emotions at bay and focusing on what comes next in the daily grind is how I cope right now so it's better for me not to rehash all those thoughts and feelings in this post :)