About Me

We found out at our 20 week ultrasound that our baby boy would be born with a cleft. This is his story.

Monday, May 9, 2011

34 weeks

I was reminded today of how fragile life is. Of the miracle of a perfectly healthy baby.

Today has not been easy.

I had a doctor appt and ultrasound today. I have been looking forward to this appt for a long time, hoping to get answers to my seemingly never ending questions. I first met with the ultrasound tech. I just love her, by they way. She was positive and wonderful. She kept telling me how cute my little baby was and how he was such a character. His head is positioned down, cocked back. His little legs are straight up, bent, right under my rib cage (yah, I can feel that:)). She showed me his hair (he has hair!) and his little feet. We watched him swallow. I felt so amazed at the miracle that is my baby. The ultrasound tech knew how important it was to me that I get a good picture of his cleft. He wasn't in a good position, but she kept working at it and got us the best picture we've had so far. Thank you!

*This picture makes me cry everytime I see it! I just love him so much already!*

She said his cleft is definitely only on the left side and that it is small. She was even able to get a few layers deep and get an okay look at the palate. From what she and the doctor can tell, he has a cleft palate. I guess I shouldn't be surprised. I was supposed to be prepared for the worst, hope for the best. Truthfully, I was just hoping for the best. I was discouraged at this news. Cleft palate means more surgeries and more problems.

But that's one question answered, at least.

My baby is measuring small- about a week and a half behind. When I talked to the ultrasound tech about my first pregnancy, she said I probably just have small babies, and to not be worried about his size. Phew. I don't want to worry about anything else.

There's been something else with this baby that I haven't mentioned before. Mostly because it wasn't really an issue. Until today. At my 20 week ultrasound, our baby had dilated kidneys, meaning they were holding more fluid than is normal. For our baby, it was about double what is normal. My doctor and the specialists told us not to worry about it too much because medically, it was a non issue. They said that most likely, it would resolve on its own. Boys are sometimes lazy and just don't pee as much as they should while in utero. They said he'd grow out of it.

When I met with my doctor today, he seemed worried about the kidneys. More than he has in the past. I asked him why and he admitted that he really thought they would have gotten better by now, not worse. They were a lot bigger than they should be. He started talking to me about possible causes, and it was scary. Worst case scenario- congenital polycystic kidney disease. He seemed to skirt around what that actually is and how it is treated until I finally made him tell me. It's not treated. It leads to kidney failure, meaning a kidney transplant, probably in late childhood. I almost lost it right then and there.

Of course, that's worst case scenario (remember that "prepare for the worst, hope for the best" thing?). There are a number of other things that can be causing the dilated kidneys, but we won't know what is causing it until he is born. Just more waiting. Because my baby has two abnormalities, the chances of him having a genetic or chromosomal disorder are increased. My doctor mentioned that after birth, he will be tested to make sure that nothing else is wrong. So far, he is healthy. His heart, brain, spine, and everything else are perfect. But ultrasounds can't tell everything.

I cried the whole way home. And for most of the day.

When people find out about our trial, sometimes they'll say, "Well thank goodness it's nothing serious!" or "At least it is fixable." While that may be true, it's not exactly what I want to hear. I recognize that people have endured far greater trials. I recognize that in comparison to others, my trial is minor. But while in the midst of a trial, it's hard to compare pain. I think the pain you happen to be going through is the worst pain of all. I know people don't know what to say in situations like this. I know they are trying. I don't blame them. It's a hard situation. I don't even know how to really handle it.

I just can't wait for 6 weeks from now, when I can finally hold this little guy and KNOW he's okay. All the speculation and guessing has been so hard. 5 months of not knowing. . . it'll be so nice for that to come to an end.

In the meantime, I'll just keep doing what I've been doing. Have faith. Try really hard to be strong. And enjoy the movements of my sweet baby.

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