The Beginning

We started this pregnancy with a cautiously optimistic outlook because of our previous miscarriages. Who would have thought that we'd have to maintain that outlook for the entire nine months?

After the initial two ultrasounds, one at five weeks and one at six, we started feeling better about the future of this pregnancy. Everything seemed to be in order. At ten weeks, I heard the heartbeat for the first time on doppler, and I had felt even more reassured. When that twelve week marker came, we were so thrilled just to have made it that far! Our fourteen week appointment went well, too. We heard the heartbeat again, blood and urine levels were on target. I let myself feel the pure excitement and joy that is supposed to come with being pregnant. It was the first time since the test read "positive" that I completely let go of worry and just celebrated.

We scheduled our eighteen week appointment for March 4th, and I thought that the day would never come. We both thought it was a boy this time - things just felt different than they did with Julia - and we couldn't wait to find out. I thought I wanted a girl at first, and then I thought, no, a boy. I was back and forth for weeks. After a while I realized that it didn't matter as long as the baby was HEALTHY. And quite frankly, that's what I expected.

The morning of the appointment did come, and I can remember telling Eudes how excited but nervous I felt. "I just want to make sure it's healthy," I told him. "You know, no heart defects, not missing any appendages, its intestines are not outside of its body. It doesn't matter what the sex is." It was said in jest, because no one ever thinks that it could happen to them. We're healthy, so what could go wrong?

The ultrasound began just like any other: "This is baby's profile, here's its belly, its little leg, and - you two are good at this - it's a boy!" I had fed him chocolate while sitting in the waiting room (not for me, of course!) and he was definitely enjoying the little sugar rush. He looked perfect on that black screen. The technician went on to measure the head, the abdomen, the arm, the leg, the feet - all good numbers. She looked at his heart - four chambers - and the vessels going to and from. She looked at his spine - perfect - and his kidneys - look good. She did some things I didn't know they did during a routine ultrasound, like measure skin folds on the brain and the amount of skin on the back of the neck. She looked very closely at the umbilical cord for three vessels (two arteries, one vein) which she said the baby seemed to have. It felt like it took a lot longer than it should have, but I didn't mind - it was more TV time for us! The last thing she showed us was a portion of the cord near the insertion into the abdomen, and there on the screen was a white mass. She explained to us that this was not normal. It's called an omphalocele and it is a protrusion of internal organs through a hole in the abdominal wall and into the umbilical cord. I remember feeling all of my breath leave my body. She didn't explain much of what this meant. She was reassuring that it looked small and everything else looked normal, and said my midwife would discuss it with me further during the consultation which was to follow immediately.

I was feeling just a little scared and nervous until she asked, "Are you going to be okay to sit in the waiting room?" I though to myself, why wouldn't I be? Maybe this was more serious than she was letting on.

We sat in the waiting room, sending out mass text messages to all of our family and friends saying, "IT'S A BOY!" I called my mom and told her there is a problem but that I didn't know the details. I would call back after I spoke with Elaine (my midwife). We waited, and waited, and waited.

About half an hour later, they called us back. Pee test, weight, blood pressure, then the real pressure. Elaine explained that she had never dealt with this issue before and that she had little expertise in the area. She told us we would have to go to Syracuse for further testing and that most of our appointments would probably be up there from now on. We should also plan on delivering up there.

So we left the office feeling, once again, cautiously optimistic. Just this one thing... no big deal. Everything else looks good. She doesn't think it's life threatening. Yes, omphalocele babies usually have other issues, but your baby looks healthy in all other respects. For a full 24 hours we dealt with this news more internally than externally. Eventually, I started to research online, became terrified with what I read and saw, thought the worst, cried, felt depressed.

Then I realized that whatever this is, we can't change it. We can't control it. What will be, will be.

Basically, what we know is that our new baby boy has an omphalocele. The list of things we don't know goes on and on... Is it small, large, or giant? Does it contain the intestines, stomach, liver? Is there a chromosomal abnormality such as Trisomy 13, 18, or 21? Does he have Beckwith-Wiedemann Syndrome? Will he be born with other defects: heart, diaphram, lungs, digestive, urinary? How many surgeries will he have to have? How long will he have to stay in the hospital? Will I be able to breastfeed? Will this compromise his quality of life later on?

For now, all we can do is hope, pray, stay healthy, and wait for answers that may not come until after he's born. But we are hoping for some tomorrow when we have our first ultrasound with the specialist.