Saturday, September 27, 2008

Ultrasound Follow-up

We saw Dr. S yesterday, our perinatologist (sp?), and she had this to say:

  • my amniotic fluid level is normal, which is especially good with E because it means that he's peeing a lot (amniotic fluid is glorified baby pee I'm told :)), which means that his kidneys are functioning the way they should.
  • they still can't tell whether or not he has a connected horseshoe kidney, or just abnormally shaped individual kidneys. (We go back in October to follow up again; the older he gets, the better they can see and diagnose.)
  • he does, however, have 3 fluid-filled cysts (benign) towards the left side of his kidney(s): this doesn't affect function of the kidneys, and most people have them and don't know it; it's not as common in fetuses and infants, but cysts DO run in R's family...)
  • when E is born, they will do a renal ultrasound to make sure his kidneys are okay; I don't know how often he'll need this done, but I'm assuming they keep an eye on him for things like urinary tract infections and kidney infections.
  • his cleft lip and palate also look fine, the width being an average size: right cleft lip, right cleft palate
  • however, they saw a little shadow on his LEFT lip (but NOT the palate). So it's possible that he has a slight cleft on the left lip as well: obviously it's not nearly as wide since they cannot tell if it is there or not. In October maybe they'll be able to tell if he has the two cleft lips or not (two cleft lips are called "bilateral cleft lip": as opposed to just one which is called "unilateral cleft lip")
  • this is also something they will be able to see more clearly as he gets older. It doesn't affect his surgery either way, nor his chances of recovering well. It DOES affect how he'll be able to eat, so I'm hoping that he'll have a strong sucking instinct to make up for all this :)
So, nothing scary. We're just filling in the blanks at this point. I feel somewhat prepared for how he'll look, but you never know. R is worried about it too. I think we have some challenges ahead with feeding, but fortunately other people have done this before and we can ask them questions and get their help.

To all those planning to visit:
  • Prepare yourself so that R and I won't stress out about your reaction to E's appearance. Look up pictures of cleft lips and palates. Look at before and after photos. It really helps. Even with preparation, it will still be surprising. Don't be embarassed, we're going through it together.
  • Don't be afraid to ask questions about E's recovery, or eating, or anything like that. We'll be happy to answer, and it's quite complicated. You should have questions.
  • Don't worry about your kids asking blunt questions. We have a 3 year old, we're used to it! But seriously, it won't offend us, just come and be yourself.
  • Please don't say things like: "I can't even tell." or "Don't worry, he'll be so handsome after surgery." We want to love him the way he is, both before AND after surgery.
Well, I think those are all my thoughts for today. I think I'll find some before and after pictures myself and post them here so you can see them. To start out, click here to go to the Cleft Advocate photo gallery. Thanks for all your thoughts, prayers, and love. We're doing much better :)


Hubers said...

I love that you are preparing yourselves and your loved ones so well. I had not even thought of anything like this before. Very smart!

Hubers said...

Honestly, I can't even tell on some of the children after pictures. Are there hearing problems involved as well?

kendahl said...

Hearing problems are pretty much a given. They usually get a lot of ear infections and need tubes. But Miles needed tubes 6 months ago anyways, so we've done that before. I need to ask what age cleft babies get them though, because it's got to be earlier than Miles got his.

Also, I'm a little concerned that Eli will be like Miles in that I could never tell that Miles even had an ear infection. He never ran fevers. He would get green boogers going on though, so that would tip me off. Hopefully Eli will be easier to read. I'm tempted to learn how to use an otoscope and check myself!

GG said...

You rock! No really, You do! I hope we can play date again soon (we've been practically frantic busy over here), but until then I'm glad you are posting!

Hubers said...

I have a friend who got her own otoscope for the same reason. She said it saved her a ton of money.

Keep us posted on how you and baby Eli are doing.

P.S. (Random thought) I love that new show Eli Stone! Have you seen it? I think it's cool that they are introducing the idea of a modern day prophet. So many people reject the idea immediately!(Again that was a totally random though, I know.)